Work and Unseen Chronic Illness: Silent Voices (Routledge Advances in Management and Business Studies)

Work and Unseen Chronic Illness

In an increasingly aging society, medicine, hygiene and nutrition have reduced the impact of acute and life-threatening illnesses. However, whilst we are living longer, the chance of developing or contracting a chronic illness is increasing. There are a growing number of working adults affected by chronic health conditions that may be largely invisible to those around them. In this book, the author explores the ‘silent’ problem of unseen illness at work. The author employs qualitative research methods to challenge the idea that if you look well, you must be well. While demonstrating the effectiveness of this controversial methodology, she uses it to expose the voices of a group of marginalised workplace actors who have hitherto remained unheard. Stories from people with cancer, multiple sclerosis, endometriosis and other illnesses are interspersed with the author’s reflections about life and work with illness that others cannot see. These stories reflect a passage of trauma and marginalisation, but also foreground themes of survival. This innovative work contains bold accounts of pain, cruelty and injustice, but it also vivifies the strength and endurance of the human spirit. Scholars, students and practitioners in studies of organisations, health studies or qualitative research will find this work both powerful and valuable. Margaret H. Vickers, PhD, is a lecturer with the School of Management, College of Law and Business, University of Western Sydney. Dr Vickers has published a range of articles about the experience of trauma, marginalisation and injustice in organisational life. She is an executive board member of the Association on Employment Practices and Principles (US) and, also, the Centre for Canadian Studies at the University of Western Sydney. Dr Vickers is also a member of the editorial board of the Employee Responsibilities and Rights Journal.

Routledge Advances in Management and Business Studies

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10 Perspectives on Public Relations Research Edited by Danny Moss, Dejan Vercic and Gary Warnaby 11 Resources, Technology and Strategy Edited by Nicholai J. Foss and Paul L. Robertson 12 Telecommunications Regulation Culture, chaos and interdependence inside the regulatory process Clare Hall, Colin Scott and Christopher Hood 13 Rethinking Public Relations The spin and the substance Kevin Moloney 14 Organisational Learning in the Automotive Sector Penny West 15 Marketing, Morality and the Natural Environment Andrew Crane 16 The Management of Intangibles The organisation’s most valuable assets A Bounfour 17 Strategy Talk A critique of the discourse of strategic management Pete Thomas 18 Power and Influence in the Boardroom James Kelly and John Gennard 19 Public Private Partnerships Theory and practice in international perspective Stephen Osborne 20 Work and Unseen Chronic Illness Silent voices Margaret H. Vickers

Work and Unseen Chronic Illness Silent voices

Margaret H. Vickers

London and New York

First published 2001 by Routledge 11 New Fetter Lane, London EC4P 4EE Simultaneously published in the USA and Canada by Routledge 29 West 35th Street, New York, NY 10001 Routledge is an imprint of the Taylor & Francis Group This edition published in the Taylor & Francis e-Library, 2002. © 2001 Margaret H. Vickers All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloging in Publication Data Vickers, Margaret, H. 1962– Work and unseen chronic illness : silent voices / Margaret H. Vickers. p. cm. Includes bibliographical references and index. 1. Work capacity evaluation. 2. Chronic diseases. 3. Discrimination in employment. I. Title. RC963.4 .V53 2001 616.9'803–dc21 00-054367 ISBN 0–415–24347–5 (Print Edition) ISBN 0-203-47139-3 Master e-book ISBN

ISBN 0-203-77963-0 (Adobe eReader Format)

Contents

Foreword Acknowledgements Prologue: A journey begins Introduction: The authentic writer

viii x xii 1

1 A silent problem

11

2 An insider’s methodological journey

29

3 Doing research – from the inside

40

4 A passage of trauma

58

5 Organisational fringe dwellers

72

6 Careerist concerns

93

7 Surviving

112

8 Notes from a survivor witness

132

Epilogue: A pause …

145

Notes References Name index Subject index

152 180 199 205

Foreword

This book is of practical significance for managers and others interested in justice, including human decency in the workplace. First, the book makes clear that the just manager, the just person, should be a seeker. She can neither hide behind the new managerialism of the optimal bottom line, nor can she expect that justice is merely a matter of applying fairness rules. Achieving justice or human decency in the workplace or anywhere else entails seeking ever more insights about justice. It is a kind of probing which, even when understanding or insight is reached, holds out the need for even more seeking. For the just manager and the just person, there is no end to the searching; she who does not continue to seek falls short. One reason for this is that the fullness of justice – justice absolute and complete – is always beyond our grasp. The incompleteness of justice, as we can know it, has been recognised by substantial thinkers, both postmodern and ancient. As Jacques Derrida writes (1992), ‘Justice remains … the very dimension of events irreducibly to come … Perhaps, one should always say perhaps for justice.’ For his own reasons, St Augustine of Hippo would have agreed about earthly justice. As Dr Margaret Vickers’ work illustrates, justice always involves more seeking of understanding – and then more seeking. Second, the book is an illustration of important insights that such seeking can find. It exposes grave injustice. It makes visible the unjust treatment knowingly and unknowingly inflicted on a segment of people. It draws attention to the suffering, in the workplace and elsewhere, of those with invisible chronic illness, including epilepsy, cancer, HIV, multiple sclerosis and some other diseases. Dr Vickers shows the plight of victims of the false belief that, if you look well, you are well. She shows the injustice that results from the untruth that, to be unwell, you must look unwell. Third, the book offers a qualitative research methodology that can be used for the seeking. It can be employed in identifying other ‘invisible’ pockets of injustice in the workplace. There are the invisible pains of redundancy, job relocation and ageing. There are the sufferings of job insecurity and stress. As the current form of globalisation continues, such difficulties can be expected to increase. The methodology offers the opportunity to make visible the invisible effects of what we are doing, and it presents a means of working toward corrective steps.

Foreword ix This is not a book that the manager-as-justice-seeker can expect to read with dry eyes. Its contents are powerful; its prescriptions are important. The book can, and should, make a huge difference in the workplace and beyond. A workplace without the insights included in this book is probably an unjust workplace. David John Farmer Virginia Commonwealth University

Reference Derrida, J. (1992) ‘Force of law: The “mystical foundation of authority” ’, in D. Cornell, M. Rosenfeld and D.G. Carlson (eds) Deconstruction and the possibility of justice, New York: Routledge.

Acknowledgements

As always for a study of this magnitude, there are a number of people I wish to thank. These are people who have played a part in this project, to a greater or lesser degree, making it possible for me to have done what I have done. However, I take full responsibility for what follows. First, I would like to honour the respondents in this study. Without their courage, the giving of their time, and their ability to share so generously and unstintingly of their experiences, this work would not have been possible. Additionally, I would be remiss not to thank the intermediaries that assisted me in making contact with the respondents whose memoirs have been recorded here. Next, I thank my dear husband, not just for supporting all of my endeavours – without hesitation – but for allowing me to share the portions of his life and our lives that became material in this work. I wouldn’t have blamed him if he hadn’t wanted to share. At no time did he even flinch at the prospect of having our lives (with all of their, sometimes, difficult content) splashed about in a thesis, in the first instance, and now here. Thank you, Michael. I also thank my family, especially my parents, for once again, supporting my endeavours, fair and foul. To my friends, I extend this same deference. Without them encouraging me, helping me, joking with me and trying to understand the point of this whole exercise, a lot of energy would have been lost. These people have continued to understand when I have been preoccupied, busy or otherwise out of reach, sometimes for long periods. These are the people that have stayed shoulder to shoulder with me, through thick and thin. I have no words to express my gratitude to them – except that I love you all and thank you for your patience, persistence and understanding. I thank the University of Western Sydney, who financed much of this work: through a student scholarship that enabled me to complete the fieldwork and analysis, through support of international conference attendances to assist with the dissemination and critique of my work as it progressed and, finally, through the acknowledgment of my academic study leave program, which allowed me the ‘block of time’ needed to finalise this manuscript for publication.

Acknowledgements xi I also acknowledge with thanks permission to include previously published work as follows: In Chapter 4 permission has been granted by the Public Administration Theory Network (PATNet), University of Nebraska, Omaha to reproduce sections from Vickers, M.H. (1998) ‘Life at work with “invisible” chronic illness (ICI): a passage of trauma – turbulent, random, poignant’, Administrative Theory and Praxis 20(2): 196–218. In Chapter 5 permission has been granted by Elsevier Science, Oxford, England to include sections of work reproduced from Vickers, M.H. (2000) ‘The “invisibly” chronically ill as unexamined organizational fringe-dwellers: voices of ambiguity, confusion and uncertainty’, in R. Hodson (ed.) Marginal Employment, JAI Press, Greenwich, Connecticut, pp. 3–21. The final sections of Chapter 6 have been reproduced from Vickers, M.H. (1999) ‘ “Sick organizations”, “rabid managerialism”: work–life narratives from people with “invisible” chronic illness’, Public Voices, Volume 4, Number 1, pp. 59–82 (Copyright © 1999 Chatelaine Press) with permission granted by Public Voices, Chatelaine Press, Rutgers University. Chapter 7 represents a revised version of the following conference paper: Vickers, M.H. (1998) ‘Lives in Turmoil: Stories of Coping with Life and Work with “Invisible” Chronic Illness’, presented at the 12th Australian and New Zealand Academy of Management (ANZAM) International Conference, ‘Meeting Asia–Pacific Needs’, Adelaide, South Australia, 6–9 December 1998. Finally, I would like to thank Professor David John Farmer. I met Professor Farmer at one of my early international conference experiences in 1997, at a time when I was still formulating and finalising many ideas. He has unstintingly provided the guidance and encouragement that has resulted in this monograph becoming a reality. Margaret Heather Vickers University of Western Sydney

Prologue A journey begins

Another excellent bottle of Chardonnay is opened. It is about 9.30 pm on Saturday evening and I sit back contentedly after dinner, enjoying the company of my beloved husband and dear friends. Whilst the others chat happily, I withdraw within, momentarily, and reflect. A newcomer to this party would never know, judging by appearances alone, that any of us had any health problems. After all, we all look particularly well, some would say in the prime of our lives. We are all aged between 29 and 41 years. We are all far from ‘well’. Katherine [a pseudonym], though right-handed, is holding her wine glass in her left, cradling her right arm in her lap. About twelve months earlier she was in a car accident, leaving her with chronic debilitating pain in her right arm, shoulder and neck, and chronic fatigue. She has difficulty writing now for any length of time or participating in any physically demanding activity. Sport is out of the question and any physical activity undertaken by Katherine is now done so with the lavish use of pain killers. At one time she was taking these constantly to cope with the pain, although I understand she has restricted their usage in deference to the future health of her kidneys. I suspect Katherine deserted her part-time degree because of the difficulties her arm causes her, though she has never stated this openly. She has been seeing a psychiatrist (and later a psychologist) since the accident to help her cope with the changes that have been brought to her life, notably depression. Katherine has also experienced cognitive and memory problems since the car accident which have interfered with her job performance, reducing her confidence and sapping her energy. She has decided to pursue a case for damages as her car accident came about whilst driving to a client site in her line of work. Don [also a pseudonym] mentioned earlier in the evening that he has just increased his prednisone medication dosage to 75 milligrams every second day. Anyone familiar with this particular “poison” knows that this is a very high dosage of a very powerful drug. The possible negative side effects of this drug are numerous: weight-gain; oedema; hyperactivity; mood swings; bone mass loss; kidney stones. Don has nephritis (inflamed kidneys) and is a possible future candidate for a kidney transplant. The need for increased prednisone is in direct response to a decrease in normal kidney functioning. Don also has asthma. My husband Michael [also taking prednisone and not using a pseudonym] has sarcoidosis, a particularly rare systemic condition, which is currently affecting his lungs. In addition to the iatrogenic effects arising directly from the prednisone, the sarcoidosis affects his lung capacity, effecting shortness of breath, tightness in the chest, frequent coughing and fatigue.

Prologue xiii Since having this condition he has also been experiencing inflammation of the joints, resulting in pain in his hands, shoulders and hips. This arthritic pain, whilst not yet debilitating, indicates a future of uncertainty. Michael regularly has his eyes checked, as blindness can also result from sarcoidosis. Some of the iatrogenic effects of the prednisone that Michael has reported have, in his view, been worse than the condition itself: weight gain; oedema, particularly in the face [commonly called ‘moon-face’]; mood swings; aggression; two cracked ribs and a kidney stone – all have contributed to the impact of this invisible chronic illness on his life and work. I have multiple sclerosis (MS). I live with recurrent periods of overwhelming and inexplicable fatigue; visual problems; bowel and bladder disturbances; balance and co-ordination difficulties; and numerous phantom-like, intermittent, sensory symptoms. I have, in the past, experienced more acute disease episodes, which have seriously (and fortunately, temporarily) affected my vision, giving me double vision for one period and blurred vision during another. I have also had problems with my hearing, balance and co-ordination, even a period of hemiplegia [paralysis to one side of the body], which I faced at the tender age of twenty-one. Unlike the other three, there have been few iatrogenic effects of treatment for me to deal with because there is no ongoing treatment to speak of. Occasional bursts of prednisone (yes, for me, too) are used in very high doses, for short periods, when acute illness overtakes me and renders various ‘bits’ unworkable. So far, this has more or less worked for me, but how long will it continue to do so? Recently there has been talk from the MS Society of a new drug – Betaferon. I try not to give this possibility too much thought. It only dredges up vast amounts of emotion and endless questions: When will it be available? Will it really help? What will the long-term effects be? My neurologist assures me that this drug is not the one; that it doesn’t alter the course of the illness. Nevertheless, hope not previously dared is undeniably, and unreasonably, born. I sigh deeply and push thoughts about my future health firmly to one side – as has become my habit. In the meantime, I relish a burning excitement. The PhD that consumes my life has found a new and definite direction. It is time to refill the glasses and rejoin the party. I have a sense that a journey has now begun in earnest. Where will it lead? (Vickers 1995b)

Introduction The authentic writer

Tacitly, or openly, he [sic] addresses himself to people who can be enlarged; he wants to enrich their experiences. If he makes money or achieves fame through writing, it is because of the accident that, at that time and in that place, people treasure truth when it is artfully presented … But authentic writing is risky. The chief risk lies in letting other people know how one has experienced the events impinging on one’s life. (Jourard 1971: 58–9)

A unique exploration As I embark on the process of converting an academic thesis into a readable and useful monograph, I ponder the question of why I am writing this book at all. I look to the words of George Orwell: My starting point is always a feeling of partisanship, a sense of injustice. When I sit down to write a book, I do not say to myself, ‘I am going to produce a work of art’. I write it because there is some lie that I want to expose, some fact to which I want to draw attention, and my initial concern is to get a hearing. But I could not do the work of writing a book, or even a long magazine article, if it were not also an aesthetic experience. (Orwell 1958: 103) In this case, I wanted others to hear the hitherto silent voices of those workers with unseen chronic illness. I wanted to do this in a manner that told an interesting story, that drew attention to what I believe is a serious problem, and which exposed the myth that ‘seeing is believing’. Life and work with unseen chronic illness is not easy. For those affected, their experiences and responses, especially in organisations, are not always OK. In doing this, I took a risk. As a researcher, I knew that authentic writing, such as that presented here, was very risky. It became even riskier when I dared to write of the substance of my own hurt alongside the hurt of others. Even though I have chosen to protect most of the players by disguising names and institutions, the risk remains high. However, I am convinced that one should not become an

2

Introduction: The authentic writer

enemy of new knowledge because one recognises the dangers in it (Vickers 2000c). Telling it like it was can threaten the status quo. In this case, telling it like it was (and is) would draw attention to things that many have tended to keep quiet about. It was not easy for me to put pen to paper with the opening prologue. At the time of writing that first journal entry, I had no knowledge as to why I wrote it or how (or even if ) it might find its way into a PhD thesis or, more startlingly, into a research monograph. All I knew was that I had to write it down. However, as the project unfolded, I became increasingly compelled to write down my story and the story of my partner. Hence, this work is not just an exposition of the silent voices of sick people in organisations, it is also about the axiomatically silent voice of a researcher. I hope you will agree that, with this research, I could not stay silent. I would not. In an effort to most effectively capture the three ‘voices’ in this work, that is, the voices of my respondents, the voice of my partner and my voice, I have included extracts throughout this volume which coincide (more or less) with the research events as they have been documented along the way. What Michael and I were living during the periods of analysis and interpretation played an important role in this work. It had to be recorded. As I now consider those passages, knowing that they will shortly be published for a wider audience, my resolve redoubles. There is no doubt that it would have been easier to report, in more clinical terms, the stories of respondents and then to forget them. It would have been easier to have not reported the voice of my partner or myself, which kept surfacing with terrifying intensity as this project unfolded. Instead, they were held in the foreground, as required. But, as you will see, it was not always personally helpful, aesthetic, or pleasing. For me, to write about those things required me to relive them. If you decide to continue with the journey that unfolds in these pages, you will find that I have done what most other researchers do not do. I have dared to present my research complete with its rawness, its heartache, its hurt and its flaws. Hopefully, it is still interesting and useful. As a researcher, I have dared to transgress and I am glad. I recall Kellehear’s steely resolve: My research, and research into vulnerable groups generally, cautions against the arrogance of assuming that comfort and safety are more important to [participants] than [participants’] desire to be heard, or their desire to contribute to our attempts to understand them. (Kellehear 1989: 66) Comfort and safety were not the primary objectives here either. Instead, telling the stories of vulnerable individuals was paramount. It seemed the only thing to do.

Introduction: The authentic writer

3

Objectives of this book There are two main aims in this book. First, to highlight the experiences of a group of marginalised workplace actors who have, hitherto, not been widely reported in the academic organisational literature. This work was commenced through the belief that there is a need to examine the lives and stories of those with unseen chronic illness who work. Examples of these invisible chronic illnesses might include epilepsy, cancer or HIV (and many others). That there have been no other studies about people with unseen illness at work, at a time when chronic illness is increasing in the Western world, seems neglectful. This work began by challenging what the majority believe to be true – that if you look well, you must be well. By questioning this fallacy, one necessarily questions many shallow and crude organisational processes, which are, similarly, guided by falsehood and myth. These are beliefs based on the visual senses alone. For one to rely upon one’s visual senses as the sole means of determining ‘reality’ in organisational life seems naive, crude and irresponsible. This is axiomatic and, yet, organisational actors’ visual perceptions frequently remain the basis of judgements of ‘truth’. In the case studies explored here, the fallacy of ‘wellness’ is vivified by this reliance on appearances. It was time to hear the authentic ‘voice’ of the chronically ill in organisations. It was time to hear these multiphrenic stories which were, in some respects, representative of organisational fringe dwellers: organisational actors who, by virtue of the fact that the life depicted is not necessarily the ‘real’ life lived, found themselves ‘separate’ from the rest – marginalised. Paradoxically, if the reality were more apparent to others, the marginalisation would probably still exist but in a different form; equally painful but, at least, recognised. Western organisations are not a good place to be if you are sick. The problems reported in these pages have been spawned, in large part, by capitalism, economic rationalism and, more recently, managerialism. Organisations tend, unfortunately, to marginalise (even punish) the sick and applaud the well. In a capitalist, functionalist society, any level of illness that takes the person below optimal capacity becomes a problem (Parsons 1951: 430). Health is regarded as a commodity; a resource in a capitalist structure (Turner 1987:172) with positive community feelings existing regarding ‘health’. Illness is viewed as abnormal (Maslow and Mittelmann 1981) and undesirable in a society obsessed with whole, perfect, beautiful individuals (Junor 1985; Galbally 1988: 8). Our communities and our organisations prefer ‘ideal’ persons – those without deficiencies (Gething 1984: 45). This economic rationalist model of society has been described as sociologically inadequate and ethically impoverished (Mulgan 1995: 8). In these pages, both these faults are painfully evident. We will also see evidence that the administrative and the rational dominate, rather than the moral. People in organisations repeatedly demonstrate Denhardt’s (1981: 12–13) view that organisation takes precedence over individual morality; the ‘system’ becomes the means of defence. The stories reported here demonstrate real harm being caused to sick people as a direct result of the capitalist ideology and the attendant managerialist imperatives of efficiency and control.

4

Introduction: The authentic writer

This work also encourages reflection upon other ‘unspeakable’ and ‘invisible’ organisational problems. Numerous ‘human’ organisational dilemmas are worthy of exploration and might be usefully reported using the methodological choices reported here. For example, the human corollaries of ‘blowing the whistle’, job relocation, an aging workforce, organisational restructuring, reengineering, downsizing and change management, all contribute to job insecurity and stress in the workplace. These problems (and many more) are faced by an increasingly diverse workforce and are in need of greater understanding. It is hoped that the risks that I have taken along the way have been worthwhile. Hopefully, this work might act as a guide and give encouragement to other qualitative ‘insider’ researchers who may be wary of proceeding. This work was intended to make us think about those marginalised and traumatised in our work-worlds. It is a book intended for any reader interested in understanding more about marginalised groups in the workplace, as well as any humanist, existentialist, or phenomenologically oriented researcher. Anyone interested in the experience of trauma that organisations routinely present should read on. Finally, this work might also be of interest to those who endeavour to work and who have a chronic illness themselves.1 Whilst not suggesting that solutions or answers will be found in these pages, understanding will certainly be enhanced.

Unseen chronic illness I have elsewhere (Vickers 1994: 66; 1995a:121–2) described chronic illness as an ongoing condition. It may be physical, emotional or cognitive, and may or may not be treatable or curable. An invisible chronic illness is one that entails all the above characteristics and combines the attributes Goffman (1963: 65) has ascribed to invisible stigma. It is a condition that is not perceptible, not noticeable and not evident to others. It is unseen, and may arise from disease, disability or injury. It is also one that may result in profound problems for the bearer. Examples may include: chronic fatigue syndrome, migraine headaches, multiple sclerosis (Donoghue and Siegel 1992:13), asthma, arthritis, epilepsy, depression, schizophrenia, diabetes and heart disease (Vickers 1997a; 1997d; 1998a; 1999a; 2000a).2 This list is not intended to be comprehensive and it is recognised that some conditions will result in highly visible manifestations over time. Nevertheless, the examples serve to vivify the number and variability of chronic illnesses which may be described as invisible or unseen and which may arise from disease, disability or injury.3 The condition’s invisibility is also distinguished here from its ‘known-aboutness’ (Goffman 1963: 64–8; Vickers 2000b: 138). Known-about-ness refers to knowledge by other normals4 (and other sick people) about the existence of the condition. An invisible chronic illness may or may not be known about and, yet, still beget a conflagration of complexities for the bearer. Social interaction will often be disrupted by knowledge of the condition alone.5 Invisible illness may also impose limitations on the bearer that disqualify them from fully partici-

Introduction: The authentic writer

5

pating in work-related activities directly, physically. However, it was found to be more often the case that problems of this nature arose through problematic social negotiations, perhaps associated with labelling, stereotyping, stigmatisation and/or discrimination. The question of ‘invisibility’ must also be considered in terms of the perceived ability of others in the organisation (especially the unstigmatised) to decode (Goffman 1963) the illness. I am talking here of the questionable ability of people without a particular illness to ‘see’ the condition and its impact on those who have. For example, a person who is close to another with impaired hearing or has impaired hearing themselves, will be far more likely to ‘see’ such a condition in other people. It is proposed here that many organisational members are unsensitised: they do not understand (ibid.). The stories recounted in Chapters 4, 5, 6 and 7 go towards further substantiating this claim and demonstrating the harm that can be caused when this happens. In the West, a society valuing ‘science’ has historically taken a reductionist, positivist stance to the recording of knowledge about illness. This dates back to the positivist theories of René Descartes (1596–1650). Archer (1995: 27–8) wrote that Descartes’ ‘truths’, which included the certainty and ‘knowability’ of scientific discovery, had profound implications. People, like clocks, could be understood if they were broken down into small components that could be more easily studied. This process of analysis has moved Western medical science reductionistically through the centuries. Armstrong (1995: 45) described this reductionist approach to treating, researching and chronicling illness and disability as an attempt to reduce all illness to a single, ‘intra-corporal lesion’. This reduces the body, intellectually, to a collection of separate systems, organs, tissues and cells. I have deliberately avoided this approach. Instead, I brandish the idea that ‘persons with different stigmas are in an appreciably similar situation and respond in an appreciably similar manner’ (Goffman 1963: 156, my emphasis). The methodological journey undertaken (and detailed in Chapters 2 and 3) philosophically supports this stance against reductionism. Aspects of the centrality of the illness have also been considered. How pivotal is the unseen illness to that individual’s life? How much, and what aspects, of life are ‘viewed’ through the lens of their chronic illness? What were the experiences that were in common for these people with different illnesses? What were unique? Most invisible chronic illnesses will have symptoms that affect the bearer. We also know that, at different stages of illness, invisible (and visible) symptoms may be reflected in acute exacerbations or chronicity, or both.6 Some conditions may be life-threatening; some may not. Some may be progressively disabling; some may not. What became clear was that few were understood by colleagues because the symptoms cannot be seen (Kantor 1991: 81; Tate 1991). Additionally, it might have been the case that those in power may not have been interested in understanding the experience of another (Fiske 1993). What was clear is that being chronically ill presented problems for people who work. Chronic illness does not follow the predictable route of warning signs, illness, recuperation and full recovery: ‘rather, the sufferer lives with a baseline of

6

Introduction: The authentic writer

unwellness that is interrupted by periods of exacerbation and remission, relapse, and remission’ (Donoghue and Siegel 1992: 56). However, it is not just the illness that presented problems. It was, more frequently, the social negotiations, the personal ramifications, and the life outcomes that made those illnesses what Raphael (1986: 5) has described as a personal disaster. It was also seen to be a chronic disaster: one that gathers force slowly and insidiously, creeping around one’s defences rather than smashing through them. People are unable to mobilise their normal defences against the threat, sometimes because they have elected consciously or unconsciously to ignore it, sometimes because they have been misinformed about it, and sometimes because they cannot do anything to avoid it in any case. (Erikson 1994: 21) There is a dearth of literature about invisible chronic illness, especially with regard to its impact on people in organisations.7 For those who have written in this area, few have focused specifically on life and work issues for the person with unseen chronic illness.8 Some authors have alluded indirectly to the problems of invisibility of illness. For example, the problems associated with others’ lack of understanding of heart disease, including the adjustment and normalising process (Johnson 1991: 17–19) are highlighted as being about others not seeing what is going on for the affected person. The distinction between hidden and unseen (or invisible) is made deliberately, as Fitzgerald and Paterson (1995: 15) have done.9 Whilst the reader will see in subsequent chapters that, much of the time, invisible illness may be hidden, and certainly the issues surrounding disclosure are complex and compelling, it remains my contention that, whilst the illness is unseen by others, it is not necessarily, and certainly not always, ‘hidden’. Hence, the preferred term(s), invisible or unseen, are chosen with care, and in the absence of others more suitable. Jones and colleagues (1984: 29) argue that visibility plays a central role in producing negative perceptions about disability. However, it is argued here that the unseen nature of invisible illness may, similarly, create its own set of troubles. For example, in addition to the difficulty in diagnosis and assessment by medical professionals when, for example, only vague feelings of malaise and fatigue are present, misunderstanding and disbelief by family, friends and colleagues may result in reduced social support.10 Next, co-worker fear and ignorance, resulting in inappropriate stereotyping, discrimination and stigmatisation, was also evident in the studies. With unseen illness, there are special concerns surrounding the implications of labelling the sick person.11 For example, the literature indicates that invisible disabilities are thought to provide the least discomfort for coworkers, compared to visible disabilities (Jones and Stone 1994: 5). However, this study provided evidence where this was not the case. For example, respondents confirmed that the existence of invisible conditions such as HIV, a lost breast or

Introduction: The authentic writer

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other ‘women’s problems’ were demonstrably discomforting to some members of organisations. What also came through in these stories was a re-emphasis of the myth of bodily perfection (Stone 1995: 413) where, in the West, it is believed that illness and disability, especially invisible illness or disability, is something that can and should be overcome with sheer guts and determination or, at least, lashings of positive thinking. There was evidence that people believed that disease and dysfunction was seen to be, somehow, a moral failing (ibid.: 414) that needed to be overcome. The effect of this was to place unreasonable expectations and responsibility on the shoulders of people who were genuinely very sick (through no fault of their own), and to press them to try harder, and to be more healthy. The response of those without illness was, often unfailingly, to trivialise the experience of sick people, encouraging many instances of ‘covering up’ behaviour, which seemed to be underpinned by the need of these people to convey a picture of an essential normalcy (Robinson 1993: 16). There was also evidence of the need in some to conceal the stigmatising ‘mark’ (Jones et al. 1984: 7). The dilemma of preservation of self and the need for legitimisation of invisible or hidden illness (Fitzgerald and Paterson 1995: 15) was demonstrated to be quite a problem, especially for those who had a choice of disclosure. The ‘hidden paradox’ associated with ‘hidden illness’ emerged. To reveal one’s identity may have decreased the problems associated with disbelief from others. However, revealing one’s illness identity meant risking other negative responses which can be as damaging, or more damaging, to the sense of self (ibid.: 19). It was unsurprising that previous researchers had described a disease like multiple sclerosis as the ‘lonely disease’, with people diagnosed talking about the times in their life – prior to illness – as how they used to be (ibid.). There are parallels in the issues facing people with ‘invisible’ chronic illness and those with more visible disabilities; however, they are not the focus of this study. The popular notion of physical disability is frequently aligned with a dependence on, or use of aids for, mobility (such as a wheelchair) or self-care tasks of feeding, washing, toileting and dressing (Tate 1991: 25). However, physical disabilities may be very real and yet not be seen. For example, fatigue can be a most debilitating symptom for many chronically ill individuals (Wheeler and Dace-Lombard 1989: 47). Further, looking able-bodied part of the time can create much confusion (Gaze 1991: 50). For example, one with MS may only use a wheelchair under certain circumstances to get around, with unknowing others being disconcerted (to say the least) when a frequent wheelchair user is sometimes able to walk. MS is an illness that, like many chronic conditions, is prone to relapses and remissions, making wheelchair use a variable and remitting necessity for some people. The expectation, especially by those not disabled, that all disabled people are wheelchair users, tends to be underscored by the use of the universal disability symbol (which depicts a person seated in a wheelchair) which is traditionally used to designate, for example, disabled parking or disabled toilet facilities. However, such depictions may present problems for people with invisible disability when they legitimately make use of such facilities. Reports in the

8

Introduction: The authentic writer

literature confirm that people who don’t ‘look’ disabled may be routinely challenged in car parks (Szasz 1991: 75; Donoghue and Siegel 1992: 63). We will see that people who don’t appear to be disabled face other problems too. Conversely, a negative disability ‘status’ may be incorrectly attributed to the chronically ill person based on the perceived future abilities (or inabilities) that other people have as a result of these kinds of flawed expectations. Colleagues may either ridiculously underestimate or far overstate the sick person’s capabilities. In the literature, a young policewoman with MS was reported as having been reassigned to a more physically demanding job after her diagnosis (Kantor 1991: 81). Another case described a woman with head injuries and subsequent cognitive impairment. This woman told of others’ incorrectly assuming that her deafness was her primary disability, when memory loss actually presented her with much greater difficulties in her life (Brown 1992).12 In the study set forth here, examples of ambiguous, shifting and incorrect assumptions and expectations (on the part of sick people and those around them) are seen to continue to present problems for those living and working with unseen illness.

The plan for this book I have endeavoured to give readers an introduction to the concept of unseen chronic illness. I concluded, some time ago, that the literature available on the subject only portrayed the ‘tip of the iceberg’. Consequently, the voices and experiences of those affected have remained invisible – silent. The illusion of wellness that is portrayed by many with unseen illness is a troublesome one. In the stories that follow, we will see evidence of difficult choices regarding disclosure of illness (Vickers 1997a; 1997d), the outcomes and responses to stigma (Vickers 1997a; 2000b), fear of discrimination (Vickers 1997a; 2000a), the threat of creeping disability (Vickers 1997a) and the corollary of negative attitudes and misunderstandings in ‘sick’ organisations that continue to encourage ‘rabid managerialism’ (Vickers 1999a). These concepts, and many more, are canvassed in the pages that follow. Chapter 1 explores current thinking about illness and work. The purpose of including this was that it sets the scene for the reader and introduces some of the myriad of problems that follow in the narratives shared. Chapter 2 examines the primary place of the research questions, the research philosophy and methodology, and the researcher, as well as the challenges of adhering to the proposed research design. This research journey was, in some ways, unique because of my proximity to the research, being an ‘insider’ to the phenomenon and living my own and my partner’s respective crises with illness as the research into the lives of others in a similar predicament progressed. Decisions as to why phenomenology, specifically Heideggerian phenomenology, was selected for this research project are discussed. Heidegger’s ontological sensitivities are underscored, as is his recognition of the researcher’s place in the research process through the recognition of background, pre-understanding, co-constitution and interpretation – inescapable parts of the hermeneutic circle. The discussion of the research

Introduction: The authentic writer

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design continues into Chapter 3. Here the difficulty, beauty and serendipity associated with an insider’s efforts ethically to approach participants and share their stories in the most appropriate and effective manner are explored. Chapter 4 engages with what is not routinely understood about those with unseen illness. The story of those with ‘invisible’ illness is likened to a journey, an odyssey – a passage of trauma. The journey is characterised as respondents’ lurched from crisis, when the illness was diagnosed or relapsed, to chronicity, where the illness was recognised to possibly never end – except in death. Memoirs recount the respondents’ shock of discovery when they first were confronted with worrying illness symptoms and their initiation into the shift in status which frequently surrounds chronic, life-threatening and disabling disease. The grief and loss associated with illness, especially unseen illness, is rarely recognised in the organisational sphere. However, the voices presented echo the negative feelings about illness, the often negative responses of others towards illness and, sometimes, the breathtaking cruelty and brutishness encountered by people with unseen illness. This came from all directions – from colleagues, friends and family, and, also, the medical profession. In Chapter 5, the stories continue demonstrating the marginalised life of those who live and work with chronic illness that cannot be seen. Fractured lives and tortured voices are revealed through lives steeped in ambiguity, confusion and uncertainty. Whilst the modernist expectation of consistency in our own and others’ behaviour is well documented, this expectation was not confirmed during this research. Instead, ambiguity and confusion resonated, as numerous workplace themes and experiences were explored. There was demonstrable hurt surrounding workplace relationships, the desire to be ‘normal’, the ‘human costs’ of workplace instrumentalism, and the uncertainty surrounding workplace disclosure of illness, difficulties with work performance, and fears surrounding illness progression. The stories reflected an inconsistency, even incoherence, vivifying the tumultuousness of life on the fringe. Chapter 6 explores the careerist concerns of a sick person in the putative ‘rational’ work setting. The modernist workplace, unfortunately, tends to vivify the problems experienced by the chronically ill. The ambivalence and tumultuousness remains in the foreground as the sick person’s expectations of selves and others is pondered. One of the thorny issues confronted when hearing these voices, was that neither the respondents, nor their colleagues, were completely sure just how they should behave or what they should do. These varying expectations contrasted with what sick people said happened versus what actually seemed to happen in their places of work. More confusing still, it seemed that these unruly and discursive expectations could change from day to day, minute to minute, and year to year, as the illness waxed and waned, and the workplace requirements shifted. The question remained poignant: if the sick person was unable to articulate what they required from other people (and that, even if they did, this would regularly change as circumstances and illness demanded), how might colleagues competently respond to this? There remains no easy answer. Finally, and on a more positive note, Chapter 7 explicates stories of survival.

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Introduction: The authentic writer

Physical, cognitive, social, material and spiritual coping approaches demonstrate the ability of people to continue with their lives and step ahead with their work, despite the challenges presented to them – sometimes on a daily basis. Whilst the stories here were not all happy ones, they did demonstrate the fact that the respondents were working towards their own survival – and successfully so. Chapter 8 returns to my reflections as a ‘survivor witness’. I reflect upon the worlds and lives of hurt I have witnessed, where existentialist themes of guilt, alienation, despair and death were exposed and, concurrently, lived. I return to the important notions of authentic writing. Finally, I acknowledge that, at last, these previously silent voices have been heard. A step towards a more just and humanitarian workplace has been made. As I remain grappling with the essential difficulties of effectively reporting what I had lived and observed, I turn my attention briefly to the postmodern view for insight into organisational problems that, thus far, seem to be largely insoluble. A final acknowledgement is made of the important place of these stories in organisational life, as well the place of a researcher who found herself to be both privileged and emboldened by method and, simultaneously, burdened with it. Finally, given that this work commenced with an exploration of the lives of the people touched by this work, a pause is marked for the reader to indicate some semblance of closure, whilst acknowledging, concurrently, that the journey never ends. This pause is made in an effort to dispel any myths that may have formed, that the stories presented might all have had a happy ending. Unfortunately, many did not. I finished, as a survivor witness by attempting to mark a place of closure. A final word concludes this journey, but undoubtedly marks the commencement of another.

1

A silent problem

At the bottom of all philosophy, of all science and of all thinking, you will find the one all-inclusive question: How is man [sic] to tell truth from error? The ignorant man solves this problem in a very simple manner: he holds that whatever he believes, he knows; and that whatever he knows is true. This is the attitude of all amateur and professional theologians, politicians and other numbskulls of that sort … Opposed to this childish theory of knowledge is the chronic doubt of the educated man. He sees daily evidence that many things held to be true by ninetenths of all men are, in reality, false and he is thereby apt to acquire a doubt of everything, including his own beliefs. (Mencken 1967: 147, emphasis in the original)

A problem illuminated The first question I needed to ask, as a researcher, was not how to proceed, but why I was involved (Drew 1989: 431). The quiet evening with friends depicted in the Prologue was the catalyst for this study into invisible chronic illness and its impact on people’s lives – especially their working lives. This is a study that inherently questions what the majority believe to be true – that if you look well, you must be well. It was also, initially perhaps, a clumsy but well-intentioned attempt to seek some form of ‘truth’. I am one of many that commenced with the misguided initial belief – not uncommon in modernist philosophy – that if one could perhaps take the problem apart then one would somehow ‘own’ it, ‘understand’ it and be able to move towards the solution. I have learned that there are no easy solutions and that some things are not even especially easy to discuss, let alone solve.1 This is my effort to commence the protest march against ‘death by invisibility’ (Geertz 1986: 376) and against ‘unacknowledged dogma’ in organisational consciousness (Kouzmin 1980: 131). It is an attempt to seek some understanding of how events relate to one another, and to formulate a means to help us make sense of the world through a process of negotiation and renegotiation (Denhardt 1981: 3). In this case, the world of unseen illness.

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A silent problem

Those introduced in the Prologue all live with what is termed an invisible chronic illness (Vickers 1997a; 1998a; 1999a; 2000a; 2000b). At the time of writing, we were all professionals, working (or, in my case, studying) full-time. We all managed these conditions in our lives as best we could. They were conditions that were not necessarily workplace-related nor workplace-caused. They were illnesses that could not be seen, but could certainly be felt. They are illnesses that are poorly understood in the West,2 with this absence of understanding extending beyond the medical profession, to family and friends, and to colleagues. In this study, my experiences were considered data as it was recognised that they would influence the outcomes of the research.3 Hence, the reader will find numerous soliloquies, annotations and reflections included in this story – a term used deliberately.4 It was deemed vital to spotlight for the reader a modicum of the dramatic life experiences that unfolded for me in parallel with my search for some understanding of the lifeworld and perspective of those I was interviewing. I determined that, as a result, I was free to combine and synthesise in any way that communicated effectively (Gergen 1991: 113). As a naive researcher who was, initially, unswervingly influenced by her modern world, I commenced the project pragmatically. Even at these early stages, I recognised that the modernist agenda is one that did not comfortably recognise the murky eddies of personal experience. As a pragmatist, I found that unseen chronic illness was an under-researched area. As noted in the Introduction, there was a dearth of literature about invisible chronic illness in the management and organisational arenas. What did exist did not focus on workplace issues or workplace experiences for the individuals concerned. So, for the modernist, I commence the discussion with some very weighty pragmatic concerns. However, as the research progressed, these became less of a focal point than the humanitarian concerns articulated later in this chapter and throughout this book.

Pragmatic concerns Chronic illnesses are now the biggest form of health problem confronting medicine. (Fitzpatrick 1984: 29) Critical and acute illness is abating in Western society (Nettleton 1995: 11). This is due, in large part, to improved nutrition and hygiene and, perhaps, to a lesser extent, to advances in medical science (Bennett 1996: 1). Conversely, chronic illness is an increasing phenomenon5 and, consequently, one that must impact the workforce. Chronic illness, a twentieth-century phenomenon, is ‘considered to be the number one health problem in the United States’ (Hastings 1992: 222). There are now slow rather than quick deaths (Bates and Lapsley 1985: 193, my emphasis), which need recurrent care and which are often disabling (ibid.: 194).

A silent problem

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In Australia, the Australian Bureau of Statistics (ABS) reported in the 1977–78 Australian Health Survey that 45 per cent of Australians had one or more chronic conditions (Goldstein 1983: 54). The 1989–90 National Health Survey reported that just over 66 per cent of Australians had a chronic or long-term condition (ABS 1990). Whilst it is recognised that chronic illness and disability predominates in the aged population (persons aged 60 years or over) (ABS 1988: 1), this problem cannot be dismissed as only affecting the aged in the community (ABS 1988: 2; Buhler 1991: 17; Vecchio, Hearn and Southey 1992: 9). In 1988, over one million Australians (of the then population of approximately 16 million) between the ages of 15 and 60 years of age (of working age) were considered by the ABS to be disabled (ABS 1988: 2). The 1989–90 National Health Survey indicated that, for the same working age group, there were over eight million reports of long-term conditions (although it is noted that each person reporting may have reported more than one type of illness) (ABS 1990: 23).6 We know that having a disability reduces your chances of getting a job (Gaze 1991: 49).7 People with disabilities have half the employment participation rate than those without disabilities (Klimoski and Donahue 1997: 109–10) and disabled people, when they do work, are often placed in entry-level, unskilled and low-earning positions (ibid.: 110). Less attention has been given to workplace problems for people with chronic illness. Concern for those who are working and also have a chronic illness is long overdue (Vickers 1995a; 1995c), especially when the illness cannot be seen. The introduction of anti-discrimination legislation in the areas of gender, religion and race has been implemented in Australia for a number of years. Of relevance here was the enactment of the Federal Disability Discrimination Act (DDA 1992). This makes it unlawful, in Australia, to discriminate against people on the basis of their disability in areas such as: work, accommodation, education, access to premises, clubs and sport; and the provision of goods, facilities, services and land; and existing laws; and the administration of Commonwealth laws and programs. (ibid.: 2) The DDA promotes equal rights for the disabled, as well as trying to promote recognition and acceptance of disabled and chronically ill people’s rights within the community (ibid.). The DDA, administered by the Human Rights and Equal Opportunity Commission (HREOC), added to the previous state-by-state legislation where communities were afforded different (or no) levels of protection depending on the location of the alleged discrimination.8 However, legislation cannot force a positive change in people’s perceptions (Noel 1990: 27) and there is no guarantee of immediate implementation of affirmative action programs, nor of responsible administering of equal opportunity management plans (Kramar 1988: 322). The hiring of the disabled has been proffered, by some, as the solution to economic problems, due to the problems of the shrinking labour pool, the aging

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A silent problem

population and the need to utilise every possible resource to its best advantage (Buhler 1991: 17). From an organisational perspective, there are those who suggest that we should busy ourselves convincing management that equal access to employment for disabled or chronically ill individuals is a good business strategy (Noel 1990: 26). It is one, ostensibly, requiring a major change in management and co-worker attitudes and perceptions, away from being charitable towards disabled and chronically ill, to being based on good business sense (Buhler 1991). Disabled workers are variously described as being reliable, productive and dependable (Noel 1990: 30; Buhler 1991). Additionally, nearly 50 per cent of top managers rated the job performance of employees with handicaps to be better than that of non-handicapped employees in the areas of ‘willingness to work hard, reliability, attendance and punctuality on the job’ (Noel 1990: 30). Junor (1985: 298) confirmed that not only can the disabled be quite usefully employed, they may prove to be better investments than the ablebodied (Junor 1985: 298).9 For the functionalist, then, Stephen Hawking’s life illustrates that people with disabilities may not only offer equal benefit, but may be of far greater value than their able-bodied counterparts: Hawking’s practical uselessness became one of the positive side effects of his illness. It may take him a long time to get up and go to bed, but he doesn’t have to run errands, do home repairs, mow the grass, make travel arrangements, pack his suitcase, draw up lecture schedules or serve in time-consuming administrative positions in the DAMTP or at Caius. Such matters are left to Hawking’s colleagues and assistants and to his wife. He can spend all his time thinking about physics, a luxury which his colleagues envy him. (Ferguson 1991: 88) However, I ask whether Hawking’s colleagues similarly envy the fact that Hawking is unable, even if he wanted, to mow the grass or pack his suitcase; and whether they have even thought about that. I point out the dangerous emphasis on functionalism and efficiency. Surely, it is worthwhile to be concerned about the rights of people with illness and disability because they are people, citizens and deserving of justice, rather than because it makes good business sense. I punctuate this discussion with some thoughts from Huxley’s (1932/1983) chilling social commentary, Brave New World. Functionalism gone awry is depicted as we join the ‘Director of Hatcheries and Conditioning’ who speaks to the imperative of hastening the maturation process of Epsilons; human beings decanted and produced solely for use in low-level factory work: … if they could discover a technique for shortening the period of maturation, what a triumph, what a benefaction to Society! … ‘But in Epsilons,’ said Mr. Foster very justly, ‘we don’t need human intelligence.’ Didn’t need and didn’t get it. But though the Epsilon mind was mature at ten, the Epsilon body was not fit to work till eighteen. Long years of superfluous and wasted immaturity. If the physical development could be

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speeded up till it was as quick, say, as a cow’s, what an enormous saving to the Community! (Huxley 1932/1983: 27–8) Yes. What a saving – and what a cost.

Humanitarian imperatives No one has, to the knowledge of Thomas Szasz, ever advocated an ethic of inhumanism or referred to themselves as an inhumanist (Szasz 1977/1988: 87). Sadly, though, inhumane thoughts and deeds continue to surround us. Nowhere are they more profound than in organisational life. I shift the discussion now away from pragmatic reasons (firmly and decidedly) towards the engine for this research: concerns about people and what they endure in organisational life. I am reminded that: The fact that a situation is ubiquitous does not absolve us from examining it. On the contrary, we must examine it for the very reason that it is or can be the fate of each and every one of us. (Miller 1983: 197; cited in Tal 1996: 1) The principles of avoiding harm to others, respecting the autonomy of others, avoiding lying and honouring agreements (Quinn and Jones 1995: 30) should apply in all settings, including organisations, and should not be overshadowed by the commonly held belief that shareholder wealth takes precedence. Unfortunately, what tends to be seen in organisational life is the implementation of ‘instrumental ethics’ – a language of ethics, used predominantly to serve the goal of firm value maximisation (Quinn and Jones 1995). Our actions can never be fully explained without due consideration to the social practices and social institutions which surround us (Denhardt 1981: 68). Organisations provide standards of moral behaviour that are often impersonal and morally untenable for the individual. For example, the use of euphemism in organisations is one means of how we humans devise deliberately slippery language to justify to ourselves and to others what it is we are doing (Stein 1998: 7). For example, when we are ‘rightsizing’ and ‘downsizing’ people out of their jobs, what we are really doing is engaging in mass layoffs. Yesterday’s faithful, valuable, long-standing colleagues (and friends) become tomorrow’s ‘fat’ to be ‘trimmed’ and forgotten, so that the company can become ‘lean and mean’ (ibid.: 8). Time and again we are confronted with instances in which the viewpoint of the organisation takes precedence over individual morality (Denhardt 1981: 13). The impersonal, depersonalised language of rationality and organisation allows us to use euphemism and rhetoric to mask the ugly reality of life in organisations. It allows us to be part of the massive deception (Stein 1998: 29). The ordinariness of euphemism disguises its potency and influence. Under the cloak of euphemism, one may commit what would usually be regarded as immoral and unethical, and

16

A silent problem

be upheld as one doing something good in the service of what is thought to be virtuous – being efficient, cutting costs, being realistic, considering ‘the bottom line’ (Stein 1998: 41). Unfortunately, the stories that follow provide convincing evidence that this practice continues. Individuals, as a direct result of the ideology of economic rationalism and the rhetoric of managerialism, behave in a manner that would be routinely be regarded as being outside the realms of everyday consideration and morality. Denial, through euphemism, of what is really happening, of how and what one really feels, and of what that really means (ibid.: 45) is all around us. As I deliberately shift the focus from the pragmatic, to the humanitarian, I vividly recall reading Kellehear’s (1989) research into the experiences of those with terminal cancer. The reason for the high participation rate (only four out of 104 declined to participate); the reason why only one person withdrew mid-interview; the main reason why embarrassment, pain, the absence of voice boxes and the presence of tears did not deter, was the explicit and persistent belief that others should know their story and that others might benefit from knowing it. I believed it too. Together we strapped ourselves in to weather the consequences of our mutual belief in the value of this research. It seems that most people want to leave something of themselves to others. When one is dying, this is even stronger. The actual benefit to the participant is hard to define. The hurt experienced by researcher and participant is difficult to endure. (ibid.: 65–66) I move now to introduce the theoretical groundings for the some of the stories, interpretations and questions that follow.

The lifeworld of people with ‘invisible’ chronic illness: complex and challenging Abramo and colleagues (1997: 349) suggested that current models of the world of work should not be taken as an inevitable paradigm, in so far as they have failed to reflect the basic dynamic of the processes that are convulsing industry and society. It would appear that these same paradigmatic restrictions have applied to the analysis of those who are chronically ill and who work. That there has been so little phenomenological work done in the area of chronic illness and work is testament to this. The literature that does address chronic illness does so, traditionally, from a nursing and health science perspective, in relation to occupational health and safety, or with respect to the medical model. The stories that follow seemed to indicate that there is no ‘one best way’ to live, work or cope. There needs to be a ‘re-evaluation’ of the sociology of work – especially the human factor (Abramo et al. 1997: 358) – for the chronically ill. We have seen, for instance, that Western organisations have long been noted for their

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17

alienating tendencies.10 The fundamental tension between capital and labour ensures this. In the West, the capitalist mode of production has resulted in an inevitable hypocrisy: under capitalism, labour is fundamentally forced labour. Whenever possible, though, capitalists prefer to cloak the compulsion to work under a smokescreen of ‘equal and just exchange’ on the ‘labour market’. However, when this is no longer possible, they return to naked coercion (Mandel 1976: 49). Unfortunately, this same kind of coercion – couched in the recent rhetoric of managerialism – emerged in the stories recorded. In order to make sense of the world of chronic illness and work, some address of the salient issues is required. The conceptual framework that follows is used to explain the main dimensions that were studied, indicating the possible and presumed relationships among them (Miles and Huberman 1984: 28). This meant exploring, to some extent, the sick person’s lifeworld (lebenswelt).11 Miles and Huberman (ibid.) describe this process as a laying out of bins; bins that are derived from both theory and experience, and which are set out to give some clarity about the interrelationships and issues of importance surrounding the phenomena under review. This discussion is not supposed to include everything. It is, instead, an attempt to describe where the boundaries of this research lie, and why. It is also important to highlight certain troubles that were manifest in the stories that follow. This ‘setting of the scene’ does not always include ideas of novelty. What is new is the application of current and extant theory to a group of individuals not previously considered (that is, those with unseen illness), especially in the context of the workplace. The constraints of capitalism12 The most pernicious constraint ever laid on a public organisation is the doctrine of efficiency, a precept that appears so self-evident and so much a matter of common-sense, as to be beyond doubt. If, however, commonsense is not enough of a warrant, we have the weighty pronouncements of economists, accountants and junk-bond peddlers, who continually urge that our salvation is to be found under its banner. (Landau and Chisholm 1995: 67) The primacy of efficiency is so firmly ensconced in our Western psyche as to have become a guiding truth (ibid.). In the West, illness is viewed as abnormal (Maslow and Mittelmann 1981), even ‘bad’, in that it reduces member productivity and utility. Sick people don’t fit comfortably or neatly into capitalist structures. The calculated, rationalist, utilitarian notion of life, described by Weber’s (1948) The Protestant Ethic and the Spirit of Capitalism, was seen to exacerbate problems for the chronically ill in organisations. Under capitalism, negativity is associated with illness due to the perceptions (accurate or otherwise) that illness leads to the dysfunctional performance of social roles. Capitalism is

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A silent problem

central to the Western notion of success and, underpinning the essence of capitalism is the need for fully functioning individuals to provide utility to organisations. The problem of health is intimately involved in the functioning prerequisites of the social system, in that any level of illness that takes the individual below optimal capacity becomes a problem for a functionalist society (Parsons 1951: 430). Health is regarded as a commodity, a resource in a capitalist structure (Turner 1987: 172). Health, when thought of as the opposite of disease, is a state of well-being conforming to the ideals of the prevailing culture or the statistical norm (King 1981: 112). Western culture assumes that a person free of disease is ‘normal’ and ‘good’ (Boorse 1981: 548). The pressures of individualism can also be instrumental in sustaining negativity towards illness. Whilst there are those who would question how individualistic Western culture is in reality, for the sick person, the pressures brought by an ideology (or a mythology) of individualism are significant. Individualism encourages one to become more independent, self-reliant and critical. Simultaneously, it can also result in people becoming more isolated, alone and afraid (Fromm 1942/1960: 90). This is especially of concern for people who are often in need of social and other support as a result of their illness. For sick people in an individualist society, instead of receiving support, they may become burdened with the responsibility for their illness. Those who do not do everything in their power to achieve health are frowned upon,13 as are those who do not successfully circumvent preventable disease. Those who would knowingly disseminate a communicable disease are likely to be socially ostracised (Lambert and Lambert 1979: 4). Illness tends to be viewed, not just as being the responsibility of the individual concerned, but also as a failure on the individual’s part to adhere to the necessary exercise or hygiene regimens, or appropriate diets. The structural and environmental causes of illness become obscured by this thinking, and the individualism of capitalist society is depicted as the source (Turner 1987: 173). Responsibility for illness is frequently (and unreasonably) laid at the feet of the bearer. Finerman and Bennett’s (1995: 1) editorial was entitled Guilt, Blame and Shame in Sickness, which further explores this concept. Organisations also prefer to regard illness as the responsibility of the employee, especially when economic conditions allow. When there is an abundant supply of labour, business owners and managers do not have to take responsibility for the health of the worker. The capitalist employer can readily replace the workforce with fresh supplies of labour under these circumstances (Turner 1987: 172). Virtanen’s (1994: 394) study confirmed the existence of an ‘epidemic of good health’ in an organisation that overtly threatened the jobs of workers who took ‘too much’ sick leave.14 Finally, for many careerists, the implications of the protestant ethic, promoting a strong desire for upward mobility and career advancement, are likely to invite disappointment (Kets de Vries 1995: 47). For the person who looks perfectly well but feels perfectly awful (well, some of the time anyway), expectations of this nature can spawn enormous additional pressure. We know that work is valued for its instrumental usefulness as well as the psychological ‘side effects’

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that independence and bolstered self-esteem give us. Work is also thought to play a crucial role in the formation of the core identity, in self-esteem, in the overall organisation of life, family life, and in mental and physical health (SafiliosRothschild 1970: 194). Bear this in mind when you read the respondents’ experiences in their places of work. The myth of bodily perfection Society is organised around ideal persons; those who are without deficiencies (Gething 1984: 45), with positive community feelings existing regarding ‘health’. The ‘myth of bodily perfection’ (Stone 1995: 413) exemplifies this obsession with whole, perfect, beautiful individuals (Junor 1985; Galbally 1988: 8). Lay beliefs tend to describe health in positive terms (Blaxter 1995: 26–32). Youth and physical perfection have become the desired (and impossible to maintain) norm. The stigma associated with physical deformity arises because of the perceived deficit between the expected and sought after perfect physical condition and one’s actual physical condition (Saylor 1990: 68).15 The bourgeois philosophy dictates that success is attributed to academic excellence, wealth, power, status, youth and beauty. This becomes something of a problem for a sick person. The deformity and disfiguration believed to be associated with disease is, according to Sontag (1988: 41), attached to moral judgements of illness, serving to intensify attendant moral judgements about the ‘beautiful’ and the ‘ugly’. The obsession with youth and physical perfection (Saylor 1990: 68) moves us inexorably towards the ablebodied being increasingly fearful of becoming sick or disabled (Wang 1992; Morris 1995). Ironically, able-bodied individuals may deliberately risk their health to achieve this cultural ideal. For example, Helman (1990: 144–5) described the cultural emphasis on female slimness and beauty resulting in ‘unhealthy’ and ‘imperfect’ outcomes of depression, poor self-image and eating disorders such as anorexia nervosa. Social pressure in the West is such that people will do some extraordinary things. Women, in particular, are sufficiently pressured by these expectations as to be prone to starving themselves to death (anorexia nervosa), to voluntarily vomit on a regular basis (bulimia), and to pay thousands of dollars (and suffering considerable pain and bruising) to have chins, hips, thighs and bellies vacuumed free of fat (liposuction). They are also likely to submit to (and pay for) the application of chemicals (chemabrasion) or sandpaper-like procedures (dermabrasion) to remove numerous, apparently undesirable, layers of facial skin. They are also willing to place themselves under the plastic surgeon’s scalpel for rhinoplasty (‘nose job’), blepharoplasty (‘eye job’), mammaplasty (‘breast job’) or abdominoplasty (‘tummy tuck’). This is all to achieve our socially constructed appearance of beauty.16 Popular literary examples may also perpetuate these attitudes17 as do the media (Safilios-Rothschild 1970: 11). We have an extraordinary situation where many non-disabled people would rather die ‘than end up in a wheelchair’ (Wang 1992: 1093–102).18 What evolve and are confirmed, are negative stereotypes

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A silent problem

about those who don’t adhere to the socially constructed mythical embodiment of physical perfection. Whilst the stories that follow tend not to focus on appearances (because of the unseen nature of the conditions), what does become evident is the discomfort that others still have towards many illnesses and disabilities, which may in large part stem from this expectation of bodily perfection. Being ‘normal’ A discussion on deviance and its incumbent problems is suggestive of the need to benchmark normality. Does health equate with normality? Certainly our ideological and cultural representations indicate that health is both desirable and normal. However, there are recognised difficulties in defining what is regarded as ‘normal’ (Margolis 1981; Maslow and Mittelmann 1981). It is unlikely that completely ‘good’ health is representative of being normal. Further, it would seem that maintaining an appearance of ‘normal’ is recognised to be hard work (De Swaan 1990: 1). La Bier (1986: 137) suggested that normal is a constellation of attitudes, values and behaviour of the dominant social character orientation, which we all share or are influenced by, to some degree. Interestingly, what is perceived and expected to be normal in terms of health may be statistically unlikely – certainly, in Australia. The healthy individual is regarded as one who never gets sick. Health, then, denotes an absence of disease (Blaxter 1995: 28). Health may also include a component of spiritual and emotional well-being or of functioning in a manner acceptable to oneself and the group of which one is a part (Dubos 1995: 9). The various requirements of psychological health, including adequate feelings of security, adequate self-evaluation, efficient contact with reality, adequate bodily desires and an ability to gratify them, adequate life goals, an ability to satisfy the requirements of the group, as well as sufficient emancipation from the group (Maslow and Mittelmann 1981: 49–50), may prove challenging for the chronically ill. Actually, the continued existence of physical and emotional health, including the absence of disease, would prove a tall order for anyone. However, expectations along these lines may provide reasons to hide one’s illness. Despite the Western predilection for apportioning blame, especially to sick people, frequently no choice exists for the affected individual’s level of health. As a result, those same people who are sick and disabled (especially visibly so) may have little choice about how to proceed and, especially, with regard to their inability to conform, or their propensity for socially undesirable behaviour or appearance. They may, simply, not be able to choose non-deviant behaviour or appearance, given their circumstances. This is especially the case for visible disability, for example, where wheelchair use is required. In this case, ambulation (walking) is the cultural norm, whilst the use of a wheelchair to move about is regarded as deviant. For those with unseen illness and disability, more choices are available although this may not always be a good thing. The person with unseen illness who prefers to hide their deviance, may choose normative behaviours at the expense of their health. For example, the person with multiple sclerosis or

A silent problem

21

chronic fatigue syndrome may choose to work at the same pace as their ‘normal’ colleague, putting in the same hours in order to demonstrate their abilities. However, such a behavioural response may make their illness worse. For those who are physically incapable of keeping up this pace, the invisibility of their illness may contribute to misunderstanding by those around them. The person with multiple sclerosis or chronic fatigue syndrome who is unable to continue working ten-hour days may be deemed lazy, unproductive and uncommitted to the organisation’s objectives by colleagues unaware of their condition or its ramifications. Stigma19 Susman (1994: 16) described stigma as any persistent trait of an individual or group, which evokes negative or punitive responses. In nature, diseased members of the group are generally shunned if they are unable to keep up with the group since they attract predators (Fabrega 1981b: 134). In organisations, the same often applies to sick people. Whatever the cause, stigma is an attribute that is deeply discrediting (Goffman 1974a: 80). It is a concept which captures a relationship of devaluation rather than being a fixed attribute (Marshall 1994: 512). Unfortunately, it is not the functional limitations of impairment which constitute the greatest problems faced by disabled individuals, but rather societal and social responses to it (Susman 1994: 16). We will see, in the stories that follow, that it was frequently not the illness, per se, that presented the most challenges. Whilst the origins of stigma were visible marks of shame (Goffman 1974a: 79), in recent years stigma has tended, increasingly, to be applied to both visible and invisible conditions. Stigma, especially when related to certain forms of illness, tends to define the bearer, and the bearer becomes known by the disease itself (Goldin 1994: 1360). Examples of this would include people being described as ‘asthmatics’, ‘epileptics’, ‘cancer victims’ or ‘HIV carriers’. Stigma, then, is not just an obvious, observable trait, but carries with it a general sense of moral inferiority, culpability and depravity (Scott 1974: 109). Whenever stigma is present, the devaluing characteristic is so powerful that it can overshadow other traits and become the focus of personal evaluations (Saylor 1990: 67). Of relevance also is the distinction made by Mankoff (1971; cited in Scambler 1984: 204) between ‘achieved’ and ‘ascribed’ stigma. Achieved stigma is stigma ‘earned’ by the person through chosen or deliberate actions taken that violate the norms of society.20 Many invisible chronic illnesses attract achieved stigma. For example, some individuals with unseen illness may be judged harshly for bringing the condition upon themselves, for example, by not eating properly, by smoking and drinking, by engaging in socially deviant sexual behaviour, by not adhering to an appropriate exercise regimen, by not seeking medical help, or by not following medical advice closely (Vickers 2000b). Examples include the contraction of HIV or AIDS (Cacioppe 1988; Small 1995) or the perceived character blemish of alcoholism (Goffman 1974a: 80; Saylor 1990: 68). For those

22

A silent problem

with AIDS, the individual is held responsible, with a natural implication of culpability for those who infect others with AIDS (Goldin 1994: 1360).21 Conversely, ascribed stigma is attributed to a person because of how they are. The nature of his or her ‘offence’ is perhaps best characterised as being ontological (Scambler 1984: 208). Examples of unseen illness that attract ascribed stigma may include epilepsy and multiple sclerosis. These conditions are perceived to have occurred through no ‘fault’ of the bearer but are still highly stigmatised. For example, Scambler’s (1984) study of individuals with epilepsy described the perceived potential threat to social order and other problems associated with perceiving and coping with stigmatising conditions. Scambler (ibid.) and, more recently, Jacoby (1994: 270) have also noted the difference between ‘felt’ and ‘enacted’ stigma. Felt stigma refers, first, to a feeling of shame associated with being, for example, epileptic. People feel ashamed fundamentally because they see ‘being epileptic’ as amounting to an infringement against norms relating to identity or being (Scambler 1984: 215).22 Enacted stigma, on the other hand, is the behavioural manifestation of stigma from others towards the bearer. Discrimination would be a prime example.23 Enacted stigma (discrimination) also occurs against those with invisible conditions.24 The stories ahead will depict examples of achieved and ascribed stigma, as well as felt and enacted stigma. Lay concepts of health and illness The existence of lay constructions of illness should also be noted (Freidson 1970: 278).25 These may include names for illnesses, causes, remedies, routines for home treatment, as well as the body of rules and expectations surrounding illness, for both those who are ill and for those who come into contact with sick people (Fabrega 1981b: 139). These beliefs about illness greatly affect the individual’s response to illness. For example, they might greatly influence the use of medical services (Freidson 1970: 286), as well as perceptions as to their efficacy or otherwise (Archer 1995: 89). These beliefs about health and illness were also apparent in the stories and may also have contributed to difficulties reported. The medical profession The influence of the medical profession cannot be underestimated.26 Medicine has long been regarded as the ‘doyen’ of professions in the West, with the medical practitioner traditionally regarded as being beyond materiality and capitalistic gratification – a person motivated neither by personal interests nor simply by the desire for economic rewards (Turner 1987: 131). Parsons (1951) and Freidson (1970) both challenged this notion, stressing the role of power in the medical division of labour and, also, noting the monopolistic power of the medical profession, which was such that it could subordinate adjacent and related occupations (Turner 1987: 132). The occupational monopoly is of interest here when one sees the importance of diagnosis in Western culture. Sick

A silent problem

23

individuals are unable to take on the ‘advantages’ of the sick role27 until their disease has been ratified by a medical professional. In the West, there is no other recognised mode of illness validation.28 Whilst the public view of medicine was transformed during the nineteenth century from suspicion to trust, many societal members today are increasingly embracing ‘alternative’ treatments as a safer, less invasive approach to health care and maintenance (Gould 1985: ix; Calnan and Williams 1992: 250). However, there remains a public need for miracle ‘cures’ and a fascination with high-technology care. Whilst some of the views suggested by Parsons (1951) and Illich (1975) have transformed somewhat in the past twenty years or so, for example, that the public accepts modern medicine as effective and retains complete faith in the value of scientific medical knowledge (Calnan and Williams 1992: 233), there is evidence in the stories that faith in the medical profession to perform medical ‘miracles’ is still quite firm. High-technology medicine is the most solemn element in a ritual celebrating and reinforcing the myth that doctors struggle heroically against death (Illich 1975: 52). The symbolism and mythology surrounding medical progress seems to have far outreached the actuality of progress. Attempts to manage disease with engineering interventions has, paradoxically, focused more attention on the symbolic and non-technical functions. The white coats, antiseptic environments, ambulances and insurance have all come to serve magical and symbolic functions influencing health (ibid.: 53). However, the reality is that, today, much in medicine is still uncertain, unknown. In some areas, great strides have been made in ameliorating suffering and preventing premature death – for example, antiseptic surgery practices, penicillin, hip replacements, heart valve replacement and bypass surgery, and reduced infant mortality (Gould 1985). However, the extrapolation of these successes to all areas of medicine would be dangerous and naive. The stories ahead of life with chronic illness demonstrate the centrality of chronic illness as a source of suffering and, in many cases, the inability of the medical profession to treat or cure them. The medical model Western medicine is based on the medical model (Veatch 1981; Helman 1990: 86). The medical model and its aetiological categories reflect the underlying assumptions of capitalism in which health is a commodity, and responsibility for illness is increasingly seen to be the individual’s problem. As already stated, diagnosis of illness today is very much the focus of medical practice (Bates and Lapsley 1985: 208) as is the use of technology to support and maintain medical dominance (Nettleton 1995: 26). However, views differ on the relative merits of modern medical technology. This might be according to which specific form of technological intervention is being considered – for example, whether it be antibiotics, tranquillisers or hip operations that are being considered. It might also be influenced by the socio-demographic characteristics of the lay populace

24

A silent problem

– for example, their age, gender, class, educational status, health status (Calnan and Williams 1992: 248–9). Clinical evidence is mostly used to confirm disease existence. These are ‘signs’ of disease, ‘objective’ indicators of disease. For example, signs of multiple sclerosis (that the bearer may or may not be aware of ) may include abnormal reflexes or nystagmus (Poser and Aisen 1987: 25). Conversely, ‘subjective’ indicators of disease are those experienced by the bearer, but not necessarily evident to an examining physician. These might include diminished or abnormal sensation, weakness of a body part, a decrease in vision or clumsiness (ibid.). They are, also, naturally more difficult to measure or compare between patients. For some people, subjective indicators are all that exist, which may lead to problems with diagnosis. Nevertheless, the medical model is still a force of influence for people with unseen illness, especially in the organisational context. Reliance remains on the medical profession in diagnosing and, thus, validating illness, affecting that person at work. Further, is the problem of iatrogenic illness.29 Medicine has become one of the greatest sources of suffering (Szasz 1977/1988: xviii). For example, the continued use of dubious treatments such as electro-convulsive therapy (ECT) is confounding. It is naive, almost to the point of irresponsibility, to suppose that the brain should respond favourably to the crude and illogical interference, such as is involved with the disruption of brain circuits with the electrical equivalent of a cosh (Gould 1985: 138–43). Science (medicine) has historically inflicted harm. For example, Louis XIII is said to have suffered 212 enemas, 215 purgations and 47 bleedings in the course of a single year (ibid.: 27). These treatments, whilst unpleasant, were considerably less harmful than the many available today. Scientific progress has equipped medical science with a huge armamentarium of remedies (ibid.: 34, emphasis added) so that over-treatment, or inappropriate treatment, are increasingly of concern. Certainly, respondents shared many stories about iatragenic illness. The medical profession as dominance and patriarchy The medical profession has historically held power. This power has led to its ability to dominate others (Turner 1987: 141). This domination may be via violations of freedom (Szasz 1977/1988: xxi), a fundamental tendency to infantilise the sick person (ibid.: 19), even an outrageous and blanket withholding of diagnostic information from the sick person (ibid.: 20; Elian and Dean 1985; Konner 1993: 5). Along these lines Foucault (1973) argued that power lies in control over knowledge and the structures and practices which sustain it, and that the body is a product of a subtle play of power which is constituted by the clinical gaze. Illness and medical care have long been institutionalised (Freidson 1970: 303), with institutional care being studied for its ‘social efficiency’ (Georgopoulous 1972: 24). The medical profession has notably controlled others (patients) with physical means and inappropriate behaviour (Parsonson 1989: 215) and with less

A silent problem

25

than humane consideration.30 Unfortunately, as the stories will later confirm, this is a state of affairs that, for many, continues, although in less physical and brutish terms than have been reported in the past. For example, the professional–patient relationship still depicts continuing themes of domination and patriarchy. Health professionals have often neglected to take the patient’s view seriously (Nettleton 1995: 131). Further, special privileges are still extended to the physician through this relationship. For example, the assumption generally exists (by both parties) that it is acceptable for medical professionals to approach the human naked body (Goffman 1974b: 35). The social role of ‘healer’ appears to allow a familiarity that would not normally be condoned. The fact that the vast majority will disrobe perfunctorily at a medical examination is symbolic of the relational power imbalance. Further, the ‘code of silence’ (Konner 1993: 5) is still widely used by medical practitioners. This code involves the knowing withholding of diagnostic or prognostic information from the patient. What could be more threatening to a person’s rights than not knowing things at once so personal and momentous as the diagnosis of a serious illness? Yet, until very recently, Western physicians continued to conceal the facts from patients as long as they could, often whispering the truth to the family instead (ibid.).31 Elian and Dean (1985: 27) confirmed this fear of open discourse about illness. They reported that when neurologists were approached for permission to interview their patients with MS, most consented with one proviso – that under no circumstances must the patients find out that they have MS. Some added that this was in the patients’ best interests (my emphasis). Women, in particular, are subject to sexist ideologies that underpin medical science and medical practice (Nettleton 1995: 140). Unfortunately, women who have attempted to resist medical control have found that they have had to contend with defensive, and often hostile, responses (ibid.: 141). Finally, consider organisational life. Organisations strongly rely on the medical model. The medical practitioner is called to clear the ambiguity of illness ‘reality’ (Goffman 1974b: 303). What sickness, how sick and the impact on (current and future) functionality, are all officially defined according to medical testimony, rather than personal experience. For people with invisible illness, especially illness that cannot be medically ‘seen’ (Vickers 1999b), this may present problems. Individual response to illness Many studies have confirmed the profound psychological impact of illness on the individual. Kaplan (1980: 3) reported the importance of self-feelings or selfattitudes in response to illness. Varying psychological responses to illness include anxiety, denial, questioning, ambivalence, suspicion, hostility, regression, loneliness, rejection, depression and withdrawal (Lambert and Lambert 1979: 5–15). Additionally, self-doubt, self-loathing, self-dislike, uncertainty, interpersonal insecurity, loss of self-esteem and guilt are also reported (Donoghue and Siegel

26

A silent problem

1992: 29–36). Finally, and of particular note here, similarities in emotional response have been observed between different chronic disorders (for example, when comparing genital herpes, MS, cerebrovascular accidents and epilepsy). All of the respondents with these conditions included responses of denial, fear, depression and anger (Parsonson 1989: 213–14). Psychological responses may vary depending on the individual personality, cultural milieu and illness specificity. The degree of mental anguish that an individual will suffer from their illness, as well as the amount of care, trust, respect and compassion they will receive, is dependent upon three major factors. These factors include, the social acceptability of the illness, the clarity of diagnosis and the potential severity of the illness (Donoghue and Siegel 1992: 40). How individuals react to their illness may also depend upon their perceptions of themselves, their body images and how they feel others view them and their illness (Mead 1955; cited in Lambert and Lambert 1979: 2). The presence of disease (with or without symptoms) may invoke a change in the personal identity of the bearer (Fabrega 1981a: 511). Psychological and social factors clearly encourage a policy of non-disclosure of many with unseen chronic illness (Vickers 1997d). People tend to conceal their ‘differentness’ to protect themselves from mistreatment (Freedman and Doob 1968: 48). Jourard (1971: 6) described an interesting paradox surrounding work and illness. He argued that, in the West, there is an expectation of disclosure and, yet, one can expect to be penalised for doing so – especially in the workplace. This seems to contribute to a conspiracy of silence. Whether the conspiracy of silence emanates from social forces, personal psychodynamics or both, there is no doubt that it exists in organisations: people with unseen illness are unlikely to speak about illness and employers don’t want to listen (Vickers 1997d). For the person who chooses partial or total secrecy as a policy, Goffman (1963: 57) has alerted us to the stresses associated with the fear of being found out; to the constant tension of who may know and who does not; and how, where and when to reveal the discrediting secret. In the case of those with potentially life-threatening conditions such as heart disease, diabetes or asthma, non-disclosure of such conditions to colleagues may result in a serious threat to safety, with no one knowing how to respond appropriately in an emergency. Modern organisations: intolerant of illness The earlier sections have highlighted the role of capitalism on the person with an unseen chronic illness. Organisational life perpetuates this negativity and intolerance towards people with illness and disability. As with social values, modern organisational culture is similarly influenced by a capitalist, individualist ideology. In organisations, instrumental reason dominates (Alvesson 1993: 27) and formal technical rules ‘underpin the single-minded pursuit of efficiency that characterises many organisations’ (Sims, Fineman and Gabriel 1993: 27). They are often impersonal, inflexible and apply to all (ibid.: 26), regardless of the individual capacity to comply. For those with unseen chronic illness, the strictures of

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culture, normalisation and attendant judgements within the organisational environment may present many problems, especially when the unseen nature of the illness serves to further obscure understanding by others. Actions or attributes of sick individuals are compared to others by ‘judges of normality’ who, according to Foucault (1977: 304; Nettleton 1995: 114), are to be found everywhere. In organisational life, managers and colleagues become the judges of normality. They do this with confidence and with incomplete knowledge about illness. They also do this with the socially predetermined negative attitudes towards illness and disease, and the attendant assumptions of reduced functionality for the individual. Standard, normative modes of ‘getting the job done’ may be inappropriate for people with invisible conditions to conform to, although this would not necessarily deter them from being able to do the job. For example, the expectation of people arriving at the office early and leaving late may leave one with a chronic illness exhausted and ineffective. The same person, encouraged to work from home for several hours per day or several days per week, may be far more productive and comfortable, being able to incorporate rest periods throughout the day or work in the evenings after resting. Managerialist tendencies in organisations may also present problems for those with illness and disability. The ‘rabid managerialism’ in organisations enhances the problems for people with unseen illness (Vickers 1999a: 60). Vague managerial titles such as ‘entrepreneur’, ‘figurehead’ and ‘leader’ (which are routinely applied to managers) imply the existence of modern managers able to handle all that may come their way by utilising an enthusiastic embrace of efficiency. Unfortunately, the stories ahead demonstrate that this is not always the case. Certainly there were many incidences of people’s illness and work experiences being appallingly badly handled. The rise of managerialism also does not address the ‘human costs’.32 These are ‘not allowed to cloud the efficiency equation’ (Rees 1995a: 24). An ideology to justify callousness is provided by the economists (Wheelwright 1995: 30) and is one that seems to condone economic and social inequality (Rees 1995b: 197) even whilst espousing the need for fairness and equity (Davis et al. 1993: 105). Issues such as fairness, justice, representation or participation are, unfortunately, treated as constraints for those endlessly striving for greater levels of efficiency (Hughes 1994: 82). Managers inconsiderate of other members of the organisation, through ignorance or the chasing of efficiency objectives, seem to feel exempt from responsibility. ‘Rational action’ has come to be identified almost solely with what one does within an organisational setting and, especially, with what one does to further the goals and objectives of the organisation (Harmon and Mayer 1986: 15). The rhetoric of management serves, at the same time, to allow those involved to believe that what they are doing is morally and ethically good. For example, one of the major justifications of organisation is that it could help eliminate those bothersome, inefficient human qualities, such as feelings, that interfere with rational endeavour (Denhardt 1981: 28). Illness may be

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A silent problem

similarly regarded as a ‘bothersome’, ‘human’ inadequacy detracting from the ‘efficient’ processes of organisational life.

Conclusion What I have sought to do here is familiarise the reader with a number of things. First, I have highlighted a previously ‘silent’ problem, that of unseen chronic illness. Next I have tried to pinpoint, from a theoretical perspective, some of the issues that presented themselves as the study progressed. Certainly, it is acknowledged that there may be many others. However, in this exploratory study, these were those perceived to require some theoretical grounding and elucidation, in order that the reader be equipped with some framework of understanding, so that the difficulties and subtleties in the stories that follow will be more evident.

2

An insider’s methodological journey

The most admirable thinkers within the scholarly community … do not split their work from their lives … What this means is that you must learn to use your life experiences in your intellectual work. (Mills 1959: 195–6; cited in Denzin 1989: 26)

One of the features of this study was my unique place in the research process. The voice of the researcher is frequently silent in organisational research. As a result, the presentation is often impersonal and distant. This research was different. It needed to be different. As can be deduced from the Epilogue, the spur prompting this research was my experience with unseen illness, and that observed in others. It was imperative, therefore, not only that I declared my vantage point, but that I immerse myself in a philosophical and methodological approach that could comfortably incorporate my unique position, whilst also adding value to the outcome. This chapter sets forth the methodological and philosophical choices made as I sought this approach. One way to judge whether a piece of research is of suitable quality is its ‘transparence’, which involves stating openly the course and elements of the research process (Sarantakos 1993: 21). Many authors have expressed the paramount importance of the researcher adequately explaining their chosen methodology and reasons for that choice.1 It is important to focus on the theoretical research objectives in order to develop an effective research design (Yin 1993: 45). The research objectives in this study centred upon the exploration of the psychic and social reality of people with unseen chronic illness, and their interpretations of and responses to their lived experiences. This required that they be the ones to determine the issues that were of deepest concern.

An exploratory qualitative study When making the methodological and philosophical decisions required, uppermost in my mind were the research objectives, the rights of the participants, the contextual sensitivities associated with illness in the workplace, and the particularities of my place as a researcher, especially as an insider or intimate to the phenomena. The question was not whether one methodology was better than

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An insider’s methodological journey

another, nor the respective merits or deficiencies of each. It was, rather, about selecting the methodology that was most suitable for this project (Sarantakos 1993: 106). First, this research was determined to be exploratory. As noted previously, the literature dealing with invisible chronic illness, especially in the workplace, was sparse. Exploratory studies are carried out when there is insufficient information about the topic, making the formulation of a suitable hypothesis and the subsequent operationalisation of the research question difficult (Sarantakos 1993: 114). There was no current theory to test, which ruled out the use of more deductive quantitative methods (ibid.: 15). This project was, primarily, to demonstrate the feasibility and importance (or non-importance) of this area of investigation – specifically, whether further investigation by management and organisational scholars was warranted. It was also designed to uncover and generate new ideas, views and opinions, and bring an under-researched area into the spotlight for debate. Second, exploratory research lends itself to qualitative approaches. The qualitative process is inductive (Sarantakos 1993: 15). The development of themes or theory for analysis was undertaken with a view to allowing ‘analytic generalisation’ or ‘exemplar generalisation’ (Yin 1989; Sarantakos 1993: 15). This was in opposition to the statistical generalisations used with quantitative methods. This inductive approach brought with it the benefits of possibly developing a new theory or, as was the case here, patterns, themes and conceptual discovery, which commenced with the subjective reality of the lived experience of those with unseen chronic illness. The theoretical groundings for this qualitative study were based upon a comprehensive literature review in combination with informal discussions with friends, academic and corporate colleagues, and members of the medical fraternity, as well as personal experience. When choosing a qualitative method (or methods), I was aware of numerous possible weaknesses and pitfalls. For example, from the researcher’s point of view, it is a laborious and highly labour-intensive undertaking, which has a capacity for generating stress in the researcher. Qualitative data is known to overload the researcher badly at almost every point and the range of phenomena, the volume of data, and the time required for write-up, coding and analysis, can all become overwhelming (Miles 1983: 118). However, many regard the most serious and central difficulty in the use of qualitative data as being that the methods of analysis are not well formulated. These critics would suggest that the analyst has very few guidelines for protection against self-delusion, let alone the presentation of ‘unreliable’ or ‘invalid’ conclusions to scientific or policy-making audiences (ibid.). Other problems include the inappropriate combination of qualitative and quantitative paradigms, inadequate plans for analysis, excessive reliance on verbal data, insufficient description of the research design or inadequate justification (Dreher 1994: 283). Still other authors describe the hurt and harm that can arise from narrative research, via the conversion of what is private into public, and the possible corollaries of privacy violations as well as mental, legal, social and financial detriment (Bakan 1996: 3). Issues specific to the

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researcher being an insider were also material to this study. For example, did I really want to interfere in these people’s lives? And, would I be able to live with the consequences of my encounters and their outcomes (Bar-On 1996: 9)? Finally, Miles (1983: 118) alerted me to the possibility that my ‘earthy’ and ‘serendipitous’ findings could, in fact, be wrong. Because of these (and other) concerns, this chapter, and the next, have been formulated to articulate, as carefully as possible, specifically what took place. I have also attempted to bring to life the problems and choices that I encountered along the way in an effort to assist others that may choose to follow this path.

Methodological choices and the danger of muddling methods As a naive researcher, and with the dangers of ‘muddling methods’ (Stern 1994: 214) or ‘method slurring’ (Baker, Wuest and Stern 1992) closely considered (Leonard 1989; Baker, Wuest and Stern 1992; Dreher 1994; Stern 1994), it was appreciated at the outset that combining methods would be a potentially dangerous approach. However, continued review of the research questions combined with the exploratory nature of the research area, returned me again to the same familiar predicament – there appeared to be no complete research design that completely suited my purpose. This was especially the case given my unique position in the research process with regard to my illness status. The ensuing discussion is designed to elucidate some of my thought processes as I sought to uncover the philosophical and epistemological underpinnings of my chosen methodology.2 When commencing this journey, it was originally thought that I might use ethnography as the methodological and philosophical vehicle of choice.3 This was born of my desire to understand ‘the native’s point of view’ (Sanday 1983: 27) and to gain a better grasp of sick people’s conceptual world so as to be able to ‘converse’ with them. This stemmed from my recognition of the importance of the sociological aspects of the ‘lifeworld’ of people with unseen illness, including relevant social and cultural processes. I recognised that ethnographers approached the field armed with theory developed by generations of anthropologists and, therefore, turned their attention to the culture within the framework from a particular theoretical perspective (Stern 1994: 215). I, similarly, approached this research with some theoretical ‘hunches’ in a manner that seemed to be in keeping with an ethnographic approach. Ethnographic analysis required a search for patterns in the data and for ideas that would help to explain the existence of those patterns (Boyle 1994: 174). Ethnographers also use an informant or participant-observation approach to study cultural ‘scenes’ or cultural settings. They ask, ‘What do people do here? What kinds of people are here?’ So, the ethnographer wants to understand what one has to know, as a member of a particular group, to behave competently as a member of that group (van Manen 1990: 178). Finally, the quality of reflexivity and the importance of a holistic, contextual emphasis in ethnography, where it is understood

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An insider’s methodological journey

that people’s behaviour can only be understood in context (Boyle 1994: 162–6), was also seen as relevant. However, as I developed a better understanding of the ethnographic approach, including all its variant types (Boyle 1994: 169),4 there appeared to be some fundamental reasons for not approaching this research from an ethnographic perspective. First, and foremost, ethnography was recognised to be a study of culture (ibid.; Sanday 1983). However it is conducted and by whom, ethnography is always informed by and relies upon the concept of culture (Boyle 1994: 160; Lipson 1994: 340). Different ethnographic approaches reveal the elicitation of cultural knowledge, patterns of social interaction, descriptive storytelling or the discovery of grounded theory (ibid.). Ethnographers may also be searching to understand the structure that creates order, the ritual that is part of the identity of the culture, or the meaning certain symbols have for this group of people (Stern 1994: 215). For this to occur, the direct observation of the activity of members of a particular social group is required, and the description and evaluation of that activity (Minichiello et al. 1990: 166). Whilst, theoretically, it was possible to study the culture embraced by people with unseen illness, given that they are a group with something in common, it was not the aim of this study. Further, it was felt that the ‘invisibility’ (and frequently stigmatised nature) of the illness made a cultural analysis of this group, especially in the workplace, very difficult. People rarely disclose stigmatising illness unless they have to.5 Such a study may have been very interesting to determine if, and to what extent, a culture may develop, operate or survive in a workplace scenario, given the intriguing and unique variable of choice of disclosure that exists for these individuals. However, it was felt that this was not a routinely and deliberately interacting group, particularly in the context of the workplace. Second, I was concerned that ethnographers (and other researchers) frequently advocate the need for multiple sources of data. For example, Yin (1989: 95–103) proposed that the use of multiple sources of data is one of the three principles of data collection when describing case-study techniques.6 Baker and colleagues (1992: 1357–58) advocated using interviews, observation and previous research in order to generate valid ethnographic grounded theory. Possible sources of additional evidence included documents,7 archival records, interviews, direct observation, participant observation and physical artefacts (Yin 1989: 85–94). Whilst agreeing with the importance of multiple sources of data, difficulties were identified with respect to this particular study, given the ethical imperatives (discussed in the next chapter), especially the importance of privacy for the informant in their workplace.8 Direct observation was also considered. There is a definite emphasis on the use of participant observation as a data-gathering technique in ethnography, with some authors defining ethnography in terms of its use.9 However, observation seemed intuitively impossible. The literature had already indicated that, much of the time, what is not seen is not understood. It was felt that even people closely associated with respondents, for example, partners, parents, children,

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close friends and colleagues, could endeavour to understand and never truly do so. Certainly, my perception was that insufficient understanding existed about what could not be seen, which had been a fundamental impetus for this study. It was also felt that a workplace observation would likely bring with it the attendant and undesirable corollaries of the curiosity of colleagues. Thus, the major stumbling block standing in the way of observation was the fact that the illness was unseen, as were many of the behaviours that might be attributed to or associated with its existence.10 Participant observation was also precluded by the imperative of privacy for respondents. Finally, the reflexive character of this study, which implied that I was part of the world I was to study and would be affected by it (Boyle 1994: 165) was unavoidable due to my natural intimacy with the phenomena at hand. I felt, instead of a cultural representation and emphasis, it was important to approach the research in terms of the individual’s subjective interpretation. I rested with the knowledge that it would be careful examination of respondents’ lived experience (Stern 1994: 215) that would supply me with what I needed to know. Thus, I turned my attention to phenomenology. Phenomenology It was the essence of phenomenology that excited me: the need to capture the subjectively experienced life of the informants as interpreted by them (Taylor 1993: 174), and to describe lived experience (Oiler 1982: 178) and the meaning it held for that individual (Drew 1989: 431). Phenomenology has been described as illuminating the richness of individual experience (Baker, Wuest and Stern 1992: 1358). This understanding of phenomenology underscored the importance, and value, of the informant’s reality, and the need for the researcher to share that reality with others (Swanson-Kauffman 1986: 59). As Baker and colleagues reminded me, being concerned with the psychological phenomena of lived experience has only one legitimate source of data – informants who have lived the reality being investigated (Baker, Wuest and Stern 1992: 1357). ‘Reality’, under these circumstances, is subjective and perspectival, and ‘truth’ becomes a composite of those realities (Oiler 1982: 178–9). The purpose of phenomenology is to describe the world-as-experienced by the participants of the inquiry. This is sought in order to discover common meanings underlying empirical variations (Baker, Wuest and Stern 1992: 1356). The importance of a phenomenological approach, then, centres on the legitimation of the informant as a primary source of data. The value comes from learning about lived experience from the informant’s perspective – to capture experience as it is lived and share it with others. Thus, the exploration of psychological, psycho-social, social, behavioural and physiological issues was required. These varying constituents of human experience guided and mediated the interpretation, understanding and responses of the individuals interviewed. The term ‘co-constitution’, originated by Heidegger (1927/1962) and explained by Koch (1995: 831), incorporates this notion of the

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impossibility of separating the person and their world. I will return to Heidegger’s important contribution shortly. Reading in the area of phenomenology revealed varying phenomenological approaches. The ‘preparatory phase’ of the phenomenological movement involved Franz Brentano (1838–1917) and Carl Stumpf (1848–1936). At this stage, it was an innovation involving primarily psychological, scientific and descriptive influences. However, it was the ‘German phase’ that introduced the phenomenological scholars of note – Husserl and Heidegger – and the approaches of most interest here (Cohen 1987: 32).11 With this in mind, the central distinctions between the Heideggerian (interpretive, ontological) and the Husserlian (descriptive) phenomenological approaches are reviewed. For those contemplating phenomenology, these distinctions are crucial to the philosophical and methodological choices that ultimately need to be made. Ray introduces the primary point of distinction between Heidegger’s and Husserl’s respective approaches. As an insider to the research phenomena, I was ultimately concerned about my place in the research process. Importantly, Ray contended that The central distinction between the Husserlian and Heideggerian approaches is that Heidegger articulates the position that presuppositions are not to be eliminated or suspended, but are what constitute the possibility of intelligibility or meaning. (Ray 1994: 120) The aim of this research was not to describe the phenomena at hand (which would have been more accurately depicted as Husserlian phenomenology), but to attempt to interpret and understand it (Heideggerian phenomenology). In my case, this required acknowledging and involving the presuppositions that I held about the phenomena under review. I was appreciative of Weber’s verstehen, that is, the empathetic understanding of human behaviour and the belief that reality is in the minds of people, internally experienced and socially constructed through interaction, and interpreted through the actors and their definitions (Sarantakos 1993: 33–5). In short, the emphasis of this research was predominantly ideographic; that is, I sought to explain each individual on their terms. The reverse of this would have been nomothetic research, which leads us to explain things, instead, by virtue of class membership (Minichiello et al. 1990: 63).12 Heideggerian phenomenology The goal of Heideggerian, hermeneutical phenomenology is to understand everyday practices (Benner 1985: 5). As a philosophical approach, phenomenology was in keeping with the aims of this study. Omery (1983: 51) reported that the phenomenological method began to crystallise in reaction to the denigration of philosophical knowledge and the objectification of humans. Phenomenology was used, then, as a philosophical approach that would enable me to capture the

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intersubjective experiences (Barritt et al. 1984: 3) of the sick people I interviewed, and to bring them to awareness (ibid.: 4). The hermeneutic method outlined in Heidegger’s (1927/1962) Being and Time proposed a method for the study of sacred texts and, indeed, a way of studying all human activities.13 It was developed in opposition to Husserl’s transcendental phenomenology (Dreyfus 1991: 2) and had much to offer my insider research. In this study, I was so close to the phenomena under review that it seemed all but impossible to eliminate, or ‘bracket’, my experiences. Thus, it was imperative to adopt an approach that accepted, even encouraged, my knowledge and experience of unseen chronic illness. According to Heidegger, the researcher’s influence in phenomenological research cannot be underestimated. Indeed, it has been argued that the state or organisation of the researcher’s consciousness will determine what phenomena, facts and relations will enter their consciousness (Moss and Keen 1981: 108). The researcher’s orientation, sensitivity and perceptiveness would shape the interpretation (Osborne 1990: 85). Thus, it was acknowledged that my own experiences would influence the outcomes of the research. It was also noted that the interviewer’s emotional response to subjects needed to be explored because of the influences it may have on the study (Drew 1989: 431–2). Gadamer and Heidegger’s hermeneutics accepted that, interpretations are never considered static, objective and ahistorical.14 Instead, they are regarded as being dynamic and subject to change with the ideological and historical horizons of the interpreter (Walters 1996: 97; Gadamer 1975). Thus, it was vital that I explicated my perspective as a researcher.15 Indeed, the researcher’s experiences are data (Drew 1989: 431; Osborne 1990: 83). The unfolding of my own experiences was recognised to have a material influence over the interpretations made. Fortunately, Heideggerian phenomenological interpretation requires, not detached but engaged activity (Sass 1990: 126), ideally resulting in a profoundly reflexive research experience (ibid.: 136; Steier 1991a; 1991b). That was certainly the case here. Using Heideggerian phenomenology, I was encouraged to recognise and incorporate my own situational pre-understanding – my story – that was not always rationalisable (Benner 1985: 7) but was always present, as can be seen by the ‘glimpses’ of events and thoughts as they were recorded at the time. This was perceived to be especially important, as some of the most influential events on my life thus far were experienced during the data-gathering, analysis and interpretation of respondents’ stories. In doing this, I addressed the arduous and risky task of ‘authentic writing’ (Jourard 1971: 58–9). In this case, Heideggerian phenomenological interpretation required what Jourard (ibid.) had characterised as the greatest risk – that is, letting other people know how one’s life experiences impinged upon one’s life. Another of the important themes that encouraged the selection of Heideggerian phenomenology was my previously articulated choices to not follow a reductionist perspective. I valued, even at the outset, an acceptance of multiplicity in people’s lives and experiences and illnesses. I was one who accepted and valued the existence of multiple identities and multiple lives.

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Heideggerian phenomenology is anti-reductionist and holistic (Oiler 1982: 181; Omery 1983: 60; Benner 1985: 6; Wilkes 1991: 232). It also allows for a composite of realities (Oiler 1982: 179), which was required in stories that comprised ‘multiple voices’ (Gergen and Gergen 1984: 182; Gergen 1991: 83; Davis 1994: 353), multiple lives (Bateson 1989: 162), multiple commitments and multiple beginnings (ibid.: 10). This enabling of multiple and diverse realities was an important constituent of this study. The recognition of multiple negotiated realities as part of the phenomenology of the social world was what was required to jettison the silence on suppressed and marginalised voices. The silence is lifted in a number of ways. First, by recognising, in a way that the more traditional sociological, anthropological and ethnographic accounts have failed to do, that the voice of the researcher is a valuable constituent of the story shared by the respondents, rather than someone on the outside looking in. Second, the voices of those belonging to groups that have been previously unnoticed and unheard come to the fore. For those with unseen illness, attention is drawn to their realities, dilemmas and ambivalence. Third, acknowledgement remains that there may be no simple, single, clear ‘voice’ that resonates on behalf of all, or that all others will understand. Multiple realities and multiple identities are enabled through the hearing of multiple voices, multiple stories and multiple experiences. Reductionist variants of explanation were regarded as inappropriate (Sass 1990: 144) in what I had already deemed to be an exploratory study. The focus here was on studying the actors in context, rather than isolating them from situational variables (Benner 1985: 6; Wilkes 1991: 232). Many of the social and situational variables were crucial in the lives of respondents. I clung to a predeliction for enlargement rather than reduction, generosity rather than economy, complexity rather than simplicity, especially when gathering and interpreting. Heideggerian phenomenological exploration became ‘the lens rather than the hammer’ (Oiler 1982: 181), with forms of explanation and prediction that offered understanding and choice, rather than manipulation and control (Benner 1985: 13). The role of theory The role of theory is also somewhat controversial in phenomenological research (Ray 1994: 123). Once again, when one compares the philosophical positions of Husserl and Heidegger, one finds that, on the one hand, Husserl’s aim was the avoidance of all conceptually bound and theoretically constructed beginnings (ibid.: 119). Therefore, for the Husserlian phenomenologist, theory is antithetical to phenomenology (van Manen 1990; Ray 1994: 123). According to Husserl, the phenomenologist should approach the research without any preconceived notions of what will be found, as they would be thought to bias the research process. In this scenario, the powerful voices speaking from the literature should be viewed with considerable caution, given their ability to lead to an intrusion and a biased perspective. They may prove to be a barrier to one attempting to

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address the phenomena with ‘fresh eyes’, as one seeks to do with Husserlian phenomenology. The fear here is that looking to preconceived perspectives might limit one’s ability to recognise rich emergent themes and categories (Street 1996b: 51). In addition to not clouding one’s mind with current knowledge, Husserlian phenomenologists are also encouraged to consider and clarify any beliefs and positions they may have about the phenomena under review before the data generation phase commences. They should then ‘bracket’ these (Koch 1995: 830) – or set them aside – so that they may view the phenomena under scrutiny with fresh eyes, with surprise, and without the constraints of accepted assumptions and present meanings. This concept of bracketing was one I was not able to reconcile myself with, especially for this research project. As I considered closely my position, my ‘biases’ and my obvious proximity to the research experiences that I was investigating, I became increasingly convinced that it would be impossible for me to ‘bracket’ my knowledge and experience in this area.16 Husserl also insisted that the common-sense ‘taken-for-granted’ attitudes be transcended to render daily life an object of philosophical scrutiny (Burrell and Morgan 1979: 233). Finally, the solipsist extreme of subjective idealism, as proposed by Husserl’s pure or transcendental phenomenology (ibid.: 238), was also deemed inappropriate and unhelpful. Heideggerian phenomenology, on the other hand, has a reverence for experience and attempts to describe human experience as it is lived (Oiler 1982: 178). Phenomena may be uncommon, extraordinary and remarkable, whilst for others they may be common, ordinary and unremarkable. They may also be taken to include the subjective experiences of individuals, whatever they may be and however they are interpreted. The differences in interpretation reside with these people and their unique circumstances (Taylor 1993: 174). Heidegger’s assumption of ‘theoretical holism’ also denies the traditional assumption that there must be a theory of every orderly domain (Dreyfus 1991: 5). Hermeneutic analysis allows the study of the person (that is, their text) in a situation which, from my point of view, meant reference to aspects of life with illness that were not all going to be theoretically specified, concrete or, even, describable. This is why hermeneutic analysis was so valuable in helping me ‘to understand everyday practices, meanings and knowledge embedded in skills, stress and coping’ (Benner 1985: 5). It is an ontological process (Walters 1996: 94) and involves the systematic study of texts (Benner 1985: 5), although, it was recognised that a systematic analysis was not necessarily going to yield systematic or concrete themes or outcomes. It is also emphasised that Heideggerian hermeneutics was not a ‘hermeneutics of suspicion’ where the goal would be to discover some latent causal explanation in theoretical or power terms, but to accurately portray lived meaning in the terms of the respondents interviewed (ibid.: 6). My goal was to lift the mask on their lives from their point of view. I was also not intent on developing a concrete grounded theory,17 as one might be tempted to do in an ethnographic study. Heidegger concerned himself with ontological questions; questions about what sort of beings we are and how

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we are bound up with our world. These are in place of epistemological ones about the relation of the knower and the known (Dreyfus 1991: 3), and served to further delineate this work from other studies which have tended to clearly distinguish between the researcher and those being researched. Here the boundary between researcher and researched was blurred. The embrace of the two Heideggerian concepts of ‘historicality’ of understanding and ‘the hermeneutic circle’ underscored the view that sociological factors cannot be separated from the individual’s life. Historicality and the hermeneutic circle were both vital constituents of this study. Heidegger insisted that one must always do hermeneutics from within the hermeneutic circle (Dreyfus 1991: 4). In order to explain the hermeneutic circle, I call on the work of Koch (1995: 831, with my emphasis) to give descriptions of the constituent components of background, pre-understanding, co-constitution and interpretation. First, the notion of background is an inescapable part of the hermeneutic circle. Heidegger assumes that a person’s history or background is what culture gives a person from birth and presents, for that person, a way of understanding the world.18 Second, Heidegger uses the term ‘pre-understanding’ (‘fore-conception’) to describe the meaning and organisation of a culture (including language and practices) which are already in the world before us. They are there and they influence us. Third, Heidegger (1927/1962) declares that nothing can be encountered without reference to the person’s background understanding, and every encounter entails an interpretation based on the person’s background, in its ‘historicality’. Fourth, co-constitutionality refers to the philosophical assumption of indissoluble unit of the ‘person-world’. This means that we are constructed by the ‘world’ in which we live and, at the same time, are constructing this world from our own experience and background. The typically construed division between the person and their world is false. According to Heidegger, it is simply not possible to make this separation (Koch 1995: 831). In short, understanding for Heidegger involves constant correction and modification based on the given set of forestructures which cannot be eliminated. Some of the forestructures that might be influential in the lives of people with unseen illness have been discussed in the previous chapter. However, others will emerge as the stories unfold. In addition to those issues of concern to the respondents, and in keeping with the need to include the researcher’s experience as data, there are stories of those constituents of my life, both current and historic, which are also given consideration. And so we have the famous ‘hermeneutic circle’ (Koch 1995: 832). Finally, the objectivity–subjectivity conundrum must be addressed from a methodological perspective, given that this research is grounded in phenomenology. Traditional (Husserlian) phenomenology has been proposed by some to be a ‘rigorous science’ in the service of humanity (Cohen 1987: 31). Interestingly, this has been viewed by some as the phenomenologists’ ‘objectivist illusion’ (Kvale 1983: 184). Notions of objectivity were rejected by Heideggerian phenomenologists. Not only is Heideggerian phenomenology frankly subjectivist in its interpretive orientations, it has emerged from the ideas of the earliest post-

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modern thinkers, with the roots of postmodernism being found in Heidegger’s work (Hummel 1997: 19). I will return to the postmodernist perspective before concluding this volume, but conclude that the utilisation of Heideggerian phenomenology was a deliberate and profound step away from the rationalist expectations that inhere in the metanarratives of science. I was reminded of Lyotard’s definition of postmodern as being one of incredulity towards metanarratives (Lyotard 1979: xxiv; Connor 1989: 31). Lyotard also suggested that the goal of objectivity is irrelevant, unsustainable and illegitimate in a postmodern age. Heideggerian phenomenology allowed me to seek, to uncover, to interpret and to attempt to understand the lifeworld of the respondents – with all of their multiplicitous qualities – whilst recognising their historicist and current, ideologies and perspectives.

Conclusion The research methodology embraced by this study was Heidegger’s hermeneutical phenomenology. This choice allowed me to engage with the subjective, lived experience of the informants whilst, simultaneously, recognising the ‘foreconceptions’ that came together to create their lifeworld – and mine. For those who oppose phenomenology per se, it is urgently suggested that the philosophical distinctions between Husserl’s transcendental phenomenology and Heidegger’s hermeneutical, existentialist phenomenology be examined.19 Many of the arguments levelled against phenomenology in general cite the ‘objectivist’ notions proffered by Husserl. These include Husserl’s emphasis on transcendentalism, the lack of appreciation of current and extant theory, the bracketing of current researcher beliefs, and the ‘procedure of époche’, involving the suspension of the researcher’s natural attitude (Burrell and Morgan 1979: 233). However, bracketing was strenuously avoided by Heidegger – and by me. Heideggerian phenomenology is ontological and accepted the conflictful and ambiguous nature of the social world. It provided the perfect vehicle for a research project such as this. The philosophical and methodological decision processes set forth here will hopefully have made the decision processes and reasoning transparent. Like many research processes, I wandered from one approach to another and wanted others to realise that such an experience is not unusual. Indeed, I would be concerned with a naive researcher who settled hastily, and without due contemplation, on methodological and paradigmatic choices. The result is liable to be a simplistic, ‘join-the-dots’ (and, possibly, flawed) methodological choice. I remain convinced that, if there is sufficient reason, the reason is well articulated and the research is responsibly carried out, methodological choices are entirely at the discretion of the researcher. But they have to be considered in terms of the philosophical requirements of that research project. What is also important is that those decisions be articulated as clearly and transparently as possible for those who may follow. As Stern (1994: 219) said, ‘I really don’t care what you do, just tell me about it. I might learn something.’ I think Stern is right.

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Doing research – from the inside

As I drive down the mountain, I don’t know whether to laugh or cry. I settle for a rather tortured combination of both. The gut-wrenching importance of what I am doing has just struck me. I had thought at the beginning of this project that what I was doing was important. Now I am convinced: these stories need to be told. I have just interviewed mother and, then, daughter. June [a pseudonym], a warm, quietly spoken woman in her mid-forties, has recounted her story of what it is like, slowly, and inexorably, to go blind. Her daughter, Shelley [also a pseudonym], a bright, no-nonsense young woman in her mid-twenties, has described life in the face of death: she has acute lymphoblastic leukemia. Both have chronic illnesses that you cannot see. Both work full-time. Both have conditions that they have been dealing with for years. Both have demonstrated a most humbling inner strength and determination. On the one hand, elation. From a research perspective, the interviews are gold. Forthright, open admissions of frustration, denial and fears for the future. Stories of the workplace that warm your heart; and those that make you shiver. With the elation, however, comes trepidation as I consider the tears I am likely to shed personally in the weeks ahead. I feel honoured that I have the opportunity to tell their story, yet fearful I will not do it justice. I had never considered that I would feel so strongly. I brace myself for the rocky ride ahead. (Vickers 1996c)

Research reported, ‘warts and all’ The ‘nuts and bolts’ of what went on in the field are important to share. So few actually write about the joy, the uncertainty – and the blunders. Mostly, the research process is set forth in a mechanical fashion. I would certainly agree that qualitative researchers (like any other researchers) are expected to develop a research design. This design should specify how, where, when and under what conditions they will collect and analyse their data (Sarantakos 1993: 98). This ‘action plan for getting from here to there’ (Yin 1989: 28), is vital so that those that follow will know what has been done. What is set forth here is that action plan, as it was experienced, ‘warts and all’. Rather than relying on a single-case design, where only one person with invisible illness would be interviewed, or where a number of people with the same invisible chronic illness would be involved, many stories from people with

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varying invisible illnesses were collected. The decision to pursue a multiple-case design (Yin 1989: 53) was made in the hope that both themes and categories in common would emerge from the comparison of the stories, in addition to illuminating unique experience. This multiple-case study (ibid.: 31) focused on the individual’s subjectively interpreted experiences with unseen chronic illness in the workplace – their life and work with unseen chronic illness. Reliability and validity In selecting a qualitative approach, I fundamentally rejected the notion of objectivity (Sarantakos 1993: 20). The essential element for objectivity is standardisation, a quality and objective that is absent in qualitative research.1 However, it was recognised that standardisation is neither desirable nor possible in qualitative research (ibid.). Rather than objectivity, then, validity and reliability were considered, as defined within an interpretive paradigm. A study is defined as being reliable when ‘it consistently gives the same result’ (Minichiello et al. 1990: 45). Case study research is reliable if, when a later investigator follows exactly the same procedures as described by an earlier investigator and, having conducted the same case study all over again, the later investigator arrives at the same findings and conclusions. It should be noted that the emphasis is on doing the same case over again, not on ‘replicating’ the results of one case by doing another case study (Yin 1989: 45, emphasis in the original). Reliability, then, within the qualitative research paradigm, is not irrelevant. It is achieved through the development of an extended, trusting and confidential relationship between investigator and informants, rather than through the establishment of the psychometric properties of research instruments, as would be the case in quantitative studies (Dreher 1994: 286).2 I believed that reliability in this study was enhanced through my insider status to the phenomena at hand. Being ‘one of them’ helped me to gain the participants’ trust and confidence, as well as providing possible insights as to what was sometimes left unsaid, and what might have been inferred or felt under certain circumstances. I also attempted to make as many steps in the research process as operational as possible. Yin (1989: 102–3) proposed that maintaining the ‘chain of evidence’ increased reliability.3 Ideally, the reader should be able to follow my logic in either direction, from conclusions back to initial research questions or from questions to conclusions (ibid.: 102). Whilst I am uncertain if this is possible in qualitative research, the recording of events certainly makes it easier for another to comprehend my choices. Validity also takes on different connotations when considered from a qualitative perspective. A piece of research is determined to be valid ‘if it really shows what it is supposed to show’ (Minichiello et al. 1990: 45). However, when I considered the specifics of construct validity, internal validity and external validity, I found these to be largely irrelevant for one operating from an interpretivist paradigm.4 These tend to be of primary importance to the positivist researcher – not a phenomenologist. The point of phenomenology is not to

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generalise one’s findings to the wider population, but to report subjective experiences as interpreted by those who have lived them. The desired outcome of the study, then, was not on generalisable theory but on telling stories that were sometimes unique and sometimes generalisable. Value was placed on all stories – they constituted new knowledge. Validity was ultimately measured against the research objectives. In a phenomenological study, validity depends on the extent that the findings truly reflect the essence of a phenomenon as experienced by the informants (Baker, Wuest and Stern 1992: 1358–9). Understanding the lifeworld, the lebenswelt, the world of lived experience (Cohen 1987: 33) for people with unseen chronic illness, was what mattered. Finally, a manageable (small) sample was retained. This permitted greater participation and observation on the part of the investigator (Dreher 1994: 286). In fact, Kvale (1994: 164) suggests (and I agree) that too many subjects restrict the ability of anyone to make penetrating interpretations. Initially, I followed Swanson-Kauffman’s (1986) research design as a heuristic. To that end, I initially proposed that a pilot study of five individuals and a main study of twenty individuals would be selected for interview (ibid.: 60–1). However, a pilot study of five individuals (each interviewed twice) was followed by another series of interviews with a further five individuals (totalling twenty interviews). The analysis of these seemed to be sufficient for the phenomenological model to take shape. Further interviews were not pursued. Representativeness and generalisability Following Sarantakos (1993: 26–7), representativeness was deemed not to be of special relevance to this qualitative study, particularly as a multiple-case study approach was employed. This emic study focused on, and valued, individual experience rather than replication ability.5 Even when discussing generalisability, which is highly valued in qualitative research, quantitative sampling procedures were still regarded as not being relevant. Sampling in qualitative research is not based on probability theory, and the size of samples is usually too small to reflect the attributes of the population concerned. Instead, the sampling undertaken was related to theoretical sampling, which is geared towards essential and typical units. Thus, selection under these circumstances does not stress random procedures but, rather, theoretical sampling; that is, the selection of theoretically important units (ibid.: 27, emphasis in the original). Generalisability, under these circumstances, was not attributed to being able to replicate the findings, but rather to generalise findings beyond the cases studied through ‘exemplar generalisation’ or ‘analytic generalisation’ (ibid.). Yin (1989: 38) argued that using the case study method to gather data does not require statistical sampling because statistical generalisation is not the aim of this method. This is because case studies should not generally be used to assess the incidence of phenomena (ibid.: 55). Both ethnographic and phenomenological studies should be concerned with the data and should, therefore, use non-probability sampling (Baker, Wuest and Stern 1992: 1358). Informants for a phenomenological study

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should be chosen because they have lived the experience under investigation. Sampling therefore was purposive, aimed at illuminating the richness of individual experience (ibid.). In this research, because of the phenomenological emphasis, both unique and generalisable findings were regarded as being of importance. Unit of analysis Defining the unit of analysis for study was imperative in order to make valid methodological choices. It was also vital, as discussed above, to enable the effective and accurate selection of essential and typical respondents, that is, those best able to contribute to the construction of the phenomenological model. After careful consideration, the unit of analysis was decided to be an individual with an invisible chronic illness and their interpreted experiences of life and work. Therefore, in each situation, the individual case being studied became the primary unit of analysis. Information about each relevant individual was collected, and several such individuals or ‘cases’ were included in this multiplecase study (Yin 1989: 31). Thus, respondents were selected because they had an invisible chronic illness and were working full time.6 This unit of analysis fitted comfortably with the research questions that were listed earlier, the antireductionist emphasis, and the Heideggerian phenomenological philosophy. It therefore served as the basis for sample selection. With regard to the first criterion, there was some consternation by colleagues surrounding the ‘diagnosis’ of the unseen chronic illness. It was suggested by some that medical verification of the diagnosis was necessary due to the possibility of a dishonest response. I reasoned that if this thinking were followed, a request for a medical certificate from respondents would have been required. I countered that the arguments supporting a request for medical verification were insubstantial compared to the problems of using it as a selection criterion. First, commencing my relationship with respondents with an assumption of dishonesty on their part seemed to jar with the foundational concerns of the study. Second, it was possible that the medical diagnosis could well be wrong (Watson and Kendall 1983: 43) and, as a selection criterion, not reliable. Third, the phenomenological emphasis of this study expressly valued the subjective everyday experiences of the informant and their interpretation of events. It was of interest to me if informants had had difficulty obtaining a medical diagnosis; if that diagnosis was insufficient or incorrect; or, whether the diagnostic process itself brought problems for that person to their life and work. There was, simply, little interest here in verifying or validating these stories, especially utilising criteria defined by the medical profession. It is accepted that this decision may have resulted in a small portion of dishonest respondents comprising part of the study, although, on reflection, it is doubtful that this occurred. With regard to the second criterion, employment, it was initially thought that, in addition to those who were currently employed full time, people who had been recently unemployed would also be suitable candidates. However, if this

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line had been taken, the dilemma of how recently became troublesome. How would I then determine a suitably recent time-frame? To solve the problem, I reasoned that current employment should become a mandatory criterion. Ethics In keeping with the need for qualitative research to be ethical, open and honest, guidelines for ethical standards were considered to be of the utmost importance. It should also be noted that a full review of my research proposal was undertaken by the university’s Human Ethics Review Committee (HERC) prior to me commencing the fieldwork. All documentation and processes were approved.7 Adherence to ethical standards required a number of things: the need to maintain a suitably high standard of professional conduct; participation by the researcher in work I was competent to perform; and the requirement to maintain the confidence and privacy of all participants in the study (Sarantakos 1993: 23–4). Additionally, other issues of grave concern included the need for – and attention to – the voluntary, informed consent of the informant, the researcher’s responsibility to informants not coming to any harm, and the question of reciprocity during the research process (Lipson 1994: 343–50). First, there was concern that those participating would be vulnerable to harm – an important consideration for those stigmatised or those with secrets (ibid.: 348). Maintaining the privacy of prospective respondents was of primary concern. Second, I concurred with Lipson’s (ibid.: 350) suggestion of having referrals handy should informants become upset during the interview process. It was recognised that the process of asking people to recall and, therefore, psychically relive experiences that were painful and emotionally charged, required in me the ability to respond promptly and appropriately.8 Third, I was aware of, and agreed with, the importance of some kind of reciprocity and obligation on my behalf to respondents who were prepared to share such personal and, sometimes, painful experiences. I was reminded that my first responsibility was to the informant (Field and Morse 1985: 70). I had misgivings that narrative research could violate privacy, cause mental anguish, and even incite legal, social and financial hurt and harm (Bakan 1996: 3). I was conscious that, whilst I was uncovering what I deemed to be the most significant truths about human lives, I needed to protect these people while making their stories available to others (ibid.: 5). I knew that if I presented the examples too fully, those known to the participants might recognise their stories, even when pseudonyms and other disguises were used (Chase 1996: 45). Lipson rightly asks: What obligations do ethnographers [or any investigators] have to people who bare their souls so that researchers can write an article or a book, or get a promotion? (Lipson 1994: 350; with my emphasis)

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I felt that the dilemma was not whether I should intervene at all and how I might reciprocate, but what to do and how to do it responsibly (ibid.). I decided, initially, to provide all participants with copies of interview transcripts so that they felt included in the process and were able to see at an early stage what I did with their heartfelt stories. I also undertook to be available for discussion should they feel the need to contact me. Finally, I forwarded to all respondents a copy of the first conference paper that was prepared based on this work so that they could see to what ends their efforts were being put. I had, however, made a decision for interpretive authority to remain with the researcher, even whilst understanding that the outcome might not have been a perfect rendition of their experiences.9 This decision of how, if and when the researcher returns to respondents for their viewpoint is one that needs to be made by any researcher. It is a difficult one and often linked to logistical practicalities. It was recognised that the extensive use of respondents’ stories made them vulnerable (Chase 1996: 46). However, it was also recognised that my potential vulnerability was at issue. If I was prepared to make my interpretations to the participants’ stories available to them, then I had to be prepared to consider the (inevitable) reinterpretations that they would provide. Then, I reasoned, I would be faced with deciding, on an ongoing basis, whose story was most ‘truthful’ and representative. Whilst I was aware of (and disliked) the traditional boundaries and hierarchy between the researcher and researched (Vickers 2000c), I was also aware of the possible loss to me of, potentially, an entire chapter or section if a respondent chose to delete it. I was also conscious of the additional time involved in re-editing other sections in response to respondents’ views. A thesis submitted later might have been viewed as a sign of failure or disorganisation on my part, rather than a serious commitment to methodology and interviewee autonomy (see also Chase 1996: 48).10 In this research, I also felt that my insider status would assist me with my interpretations. Nevertheless, I knowingly and unashamedly chose to retain control over the interpretive process – for better or worse. It was also on this basis of reciprocity, and for reasons of generating a trusting relationship with respondents, that it was elected, after careful and deliberate consideration, to alert informants to the fact that I was also a person with an invisible chronic illness. Van Maanen (1983: 46) highlighted the need to build trust, especially when the informants have ‘hidden’ information about themselves. Whilst not setting out to be instrumental in disclosing this, being an ‘insider’ definitely brought a special perspective – special ‘inside’ information: Whilst it isn’t always true that the ‘inside’ perspective on a person’s or an organisation’s actions is necessarily more charitable, it does operate on different information that does the outside view. The inside information may be more negative than the outside perspective – but whatever the case, it will surely be different. The locus of your information, whether from the inside or outside, is the first central difference in how you attribute meaning to

46

Doing research – from the inside your own behaviour compared to how you attribute it to the behaviour of others. (Wilmot 1975: 59)

There were also noted benefits of established trust and credibility as a researcher. Outsider researchers may have difficulty gaining closely held information until they have established their status with the group (Field and Morse 1985: 118–19). I believed that the revelation of my illness status assisted me in obtaining deeper, richer, and more personally held information from respondents. More importantly, given the circumstances of this study, it seemed dishonest and unethical not to disclose such a material fact. Finally, I felt that ethical commitments need to extend to the researcher’s well-being. Whilst the researcher’s vulnerability is rarely addressed in the literature (Vickers 2000c), I was alert to the problems associated with being so close to this study. I could not afford to underestimate the stress associated with empathising with the problems of others in similar circumstances. As the later chapters will demonstrate, these early concerns were of central relevance. The danger of becoming ‘totally a part of the group’, or of ‘going native’ (Field and Morse 1985: 119) was noted, especially in terms of overlooking important data. However, I was already a native; there was no way to ignore it. My intimacy with the phenomena being studied could not have been denied and it was felt that to try and reduce or eliminate investigator bias would have been a mistake. A better alternative was to recognise and account for it (Dreher 1994: 286), which is what I did.11 The hidden population Having defined the two selection criteria for respondents as being currently employed and having an invisible chronic illness, the next step was to make contact. Some key ethical issues had to be considered whilst evaluating possible approaches to likely respondents. For example, there was concern for the need for voluntary participation of informants and the paramount importance of their privacy, especially given the workplace context and the stigmatising nature of many chronic illnesses (Vickers 1997a; 2000b). It was assumed that likely participants may not have disclosed their illness at work. Thus, great care was required. Because of these interests, therefore, any organisationally or workplacesupported approaches to potential respondents were deemed infeasible. For example, it was thought that potential respondents would be suspicious of any study advertised in an internal workplace publication, or supported by Human Resources or senior management, and would be unlikely to participate. Approaches made through medical practices were felt to be invasive of privacy. It became apparent that, in some respects, I was dealing with a hidden population. Sensitivity was required in the approaches made.

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False starts First, I attempted to advertise in a Human Resources professional magazine, which is circulated to Human Resources professionals, mostly in Australia. Unfortunately, there were nil responses to this notice.12 Next, an advertisement was planned for inclusion in a Sydney newspaper, the Sydney Morning Herald (Public Notices). However, prior to placing this notice, an informal survey of friends and colleagues to find out about the readership of the Public Notices section revealed that few people who were busily employed were regular (or even sporadic) readers of this column. This was the only placement option in this newspaper. Additionally, respondents drawn from this source were likely to be heavily skewed towards the unemployed and, hence, prove unsuitable. Finally, the weighty question of researcher safety was raised, given that complete strangers would be approaching the researcher possibly to participate. So, rather than spending money advertising (not inconsequential amounts on a student budget), other avenues were considered. As a result of the former approaches failing, a convenience sample was considered, where access and geographic proximity become the main criteria for the selection of the cases (Yin 1989: 80). It seemed that invisible chronic illness was a reasonably common phenomenon, as evidenced by ABS statistics (1988; 1990) and anecdotal evidence among colleagues, friends and family. However, the problems of this approach weighed heavily. I felt distinctly uncomfortable about interviewing friends about such personal matters, of possibly placing them in a position of not being able to refuse an interview or a question out of courtesy, and the responses being either evasive, incomplete, uncomfortable or inaccurate as a result. Worse, I was concerned that the interview might go well (or poorly), and that the friendship would suffer as a consequence. Wilmot’s (1975: 59) comments about perceptions of others being affected by intimate knowledge of the other were heeded. I felt that asking such things might be a frank intrusion on the relationship. Finally, I found an article by Watters and Biernacki (1989: 420) describing their Modified Chain Referral Technique. Following their lead, I decided that, rather than interviewing people known directly to me, I would ask associates and friends (hereafter referred to as ‘intermediaries’) if they knew of anyone who was a likely candidate for participation. Watters and Biernacki (1989) had experienced similar difficulties when trying to survey the ‘hidden’ population of injecting drug users and found their target sample to be similarly elusive. They were successful in securing participants with this approach. I hoped I might be too. Further, there were other advantages: • • •

Unpressured choice of participation for respondents; Respondent privacy was retained if they chose not to participate. I did not find out their identity until after they had agreed in principle to participate; Participant trust was more likely given that the intermediary had briefed them regarding my academic credentials and illness background;

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•

Introduced respondents were highly likely to qualify for the study. When asking intermediaries about potential participants, I was able to explain the selection criteria to them prior to them talking to anyone. All introduced participants met the selection criteria; Greater assurances of researcher safety in the field; I was not required to interview people known to me previously; and, Respondents became available quickly and in abundance. I had to take care not to become overwhelmed with eager participants.

• • •

There were, however, some recognised disadvantages: •

•

•

It was possible that prospective participants might have felt some pressure to participate. This was minimised by not making contact with any prospective participants until they had given permission, via the intermediary, for me to do so; Respondents were predominantly middle class, young to middle-aged, professional and female. In fact, the problem of finding male participants was identified in the pilot study due to the noted cultural bias towards females being more likely to talk about emotionally upsetting events (Lawson 1987: 252); and, Individuals introduced were those who were prepared to disclose their illness, at least to someone. It would have been difficult, if not impossible, to locate and interview invisibly sick people who adopted a policy of complete non-disclosure.

Informant selection A list of potential intermediaries was made, consisting of family, friends, colleagues and acquaintances. Intermediaries were asked to make contact with any person or persons that they considered would qualify for inclusion in this study, and to ask for agreement, in principle, to participate. Permission for me to contact them was also sought at that time, which served to maintain their privacy if they declined. The process also enabled some screening capability, reducing the likelihood of a dangerous encounter (although this possibility was never ruled out) – an important consideration for a female researcher. Intermediaries were encouraged to inform the potential respondent that I had MS and was conducting the research as part of a PhD program at university. It was felt this information about me would encourage some early identification with the proposed research, whilst the institutional backing might provide credibility. Finally, potential respondents were informed that the research had full approval from the university’s Human Ethics Review Committee. From the initial intermediary referral, my ‘judgement’ as a researcher was used to select cases (Brown and Williams 1995: 697), based on discussions with intermediaries in the first instance and then with the potential participant. I contacted potential participants by telephone to explain the project and to

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enable a judgement to be made as to their suitability for inclusion in the study.13 Participants were included in the study if they met the specific selection criteria because it was likely that they would have detailed knowledge of the topic under review (ibid.). Care was taken to avoid clustering too many people with the same illness, given the objective to identify themes or trends consistent amongst different illnesses. Thus, I had to avoid interviewing, for example, too many people with cancer. Contact with informants During the initial telephone contact, a suitable time and venue for the first interview was then arranged, as well as conveying information about the research project. Following this, an information sheet, a letter confirming our first appointment and a consent form were forwarded to prospective respondents.14 A brief demographic survey was also supplied to gather details of respondents’ age, gender, marital status and work. This information was reviewed as part of the comparative analysis, particularly when attempting to identify possible explanations and possible interpretations made whilst building the phenomenological model. All interviews were transcribed, summarised and some ongoing analysis performed as the interviews continued. Each respondent was interviewed twice, with the second interview proving to be helpful in asking important and unasked questions from the first. Clarification was sought on respondent’s earlier answers, meanings and thoughts, as well as gathering additional material identified by the analysis. Participants were initially allocated a number as an identifier, for example, One, Two or Three, following Swanson-Kauffman (1986) in accordance to the order in which initial contact with them was made. However, it was felt that this did not seem a suitably sensitive means of identifying respondents, given the tenets of this study. Thus, the numbers were quickly replaced with pseudonyms. Focused interviews The chief component of this research process was the interview. It was important to maintain a balance of structure and flexibility in the interviews (Swanson-Kauffman 1986) and the best way to achieve this was to use focused, in-depth interviews. Completely unstructured interviews (which would seem mandatory for those following the Husserlian phenomenological methodology) were deemed inappropriate for this research. The initial focus areas were arrived at through academic and personal experience, writing for publication, informal discussions with other individuals with unseen chronic illness, and a lengthy literature review (Vickers 1997a). The utilisation of Heidegger’s hermeneutical phenomenology required the recognition of this ‘background’ and ‘preunderstanding’ (Koch 1995: 831). These focus areas also served to enable sufficient understanding of the proposed area of study to be obtained, otherwise

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an incoherent, bulky, irrelevant, meaningless set of observations might have been produced, which no one would be able to make sense of – even if they wanted to (Miles 1983: 119). The questions and focus areas shifted over the course of the study as the iterations of the qualitative research process were conducted. Each respondent was interviewed twice, for about an hour on each occasion. Arranging a series of interviews with a respondent allowed reflection on the transcripts of past interviews so as to gain as much interpretive insight as possible (van Manen 1990: 99).15 The purpose of the second interview was to clear up any misconceptions the researcher had formed from the first interview and to validate the emerging categories (Swanson-Kauffman 1986: 62). Second interviews were also conducted face to face (rather than over the phone) due to the then strong belief that the richest data would be revealed at the second meeting, given the opportunity to further build a relationship of trust.16 Interviews were conducted at a place of convenience to the respondent – usually their home or office. All interviews were taped and fully transcribed, and were conducted in as conversational a style as possible. The first interview was a focused interview, with focus areas predetermined by the theoretical framework. First interviews were usually slightly longer than one hour, with introductions and social pleasantries sometimes taking twenty or thirty minutes before the interview commenced. This time was invaluable in establishing some rapport and comfort level, for both researcher and respondent, prior to the interview. Many respondents appeared nervous (or perhaps self-conscious), especially when the tape recorder was turned on. However, this seemed to subside very quickly. None refused to have their interview taped. Second interviews tended to be more structured, with specific question areas arising from the data gathered during the first interview, or to make clarification and probe areas not evident to the researcher until later analysis.17 However, it is important to note that the second interview did not always demonstrate a closer relationship and richer information. Indeed, a couple of the respondents were noticeably less inclined to reach as deeply within, perhaps as a result of emotional turmoil experienced during or after the first.18 In some cases the richest data came forth in the first interview. It seemed that what was required was not just a relationship-building exercise. Circumstances on the day seemed to be very influential. For example, how I happened to be feeling, either emotionally or physically,19 how the respondents were feeling, and who happened to be in the next room. Having said that, with some respondents the development of the relationship certainly aided in moving beyond their ‘mask’ (and mine) as levels of trust deepened. When this was the case, and other things did not intrude, the second interview did reveal more intimate information.

The study This section reviews the path travelled through the ‘pilot study’ (the first ten interviews) and continuing into the ‘main study’ (the final ten). I have documented changes made in the research design as a result of this ‘learning-

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in-process’ that took place along the way. It is important to note that the pilot case studies were used to assist this researcher in both substantive and methodological ways. First, from a substantive perspective, the pilot was used to assist me in providing insight into the relevance of the study’s theoretical framework. It had been developed with an ongoing review of the relevant literature so that the final research design would be informed both by prevailing theories and by the fresh set of empirical observations (Yin 1989: 81). Second, from a methodological perspective, the pilot was used to test the qualitative research process (Minichiello et al. 1990: 287), which was seen as a process of ‘cyclical adjustments’ (Yin 1989: 82) involving interviews and ongoing analysis. The pilot test was not regarded as a ‘pre-test’, where a ‘test run’ was performed, but was being used to test both substantive and methodological aspects of the research design (ibid.: 80) – and to gather data. Thus, the pilot study interviews were conducted, with the intention of gathering data and revealing any potential inadequacies in the initial design. It was intended as a small-scale replica and rehearsal of the main study, concerned with administrative and organisational problems related to the whole study and the respondents (Sarantakos 1993: 277). I was comfortable with the knowledge that, after some early data collection and analysis, I had every right to conclude that the initial design was faulty and to modify it (Yin 1989: 59) – if required. Fortunately, apart from some minor modifications, the pilot revealed that the research design was workable and effective. It also provided me with early data for analysis. From the pilot, some general trends (as well as unique experiences) started to emerge. Lessons learned Case study participants It was initially decided, after completing the pilot study, that respondents with MS would be avoided during the main study. This was due to my perceived need to distance myself from the problems faced by participants in the study who may have been living (or have lived) troubles similar to or worse than my own. The aim was to reduce my stress. However, this decision was revisited. My special ‘vantage point’ was especially pertinent when interviewing people with MS.20 To try and counteract the problems I was experiencing in the field, a university counsellor was sought, and regularly visited, during this period.21 Interviews I experienced difficulties with the poor sound resolution of the early recordings of interviews (in other words, a cheap tape recorder!). Softly spoken individuals proved very difficult to record and transcribe, even when the recorder was placed directly in front of them.22 The initial decision to have tapes professionally transcribed exacerbated the problem. The transcriber was, naturally, unfamiliar with the content of the interview and, by the time tapes and transcripts were returned for correction, the use of the researcher’s memory as an

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aid was largely lost. Securing a better quality tape recorder, combined with the decision to personally transcribe all interviews as soon as practicable after the interview, made subsequent transcriptions less prone to errors and a relatively problem-free exercise.23 Transcription of interviews As noted above, I found personal transcription of the interviews to be the most efficient, although very time-consuming. Transcripts prepared by another still had to be corrected after they were returned, and summary notes needed to be made prior to sending tapes away to guard against accidental loss of data. Professional transcriptions were found to be largely inaccurate, with the process being time-consuming (including turn-around time and error correction) – and costly. Only a few of the early interviews were transcribed externally. After that, I personally transcribed all interviews shortly after they took place.24 Whilst I was prepared to make transcripts available to respondents, I had chosen not to seek their feedback on my interpretations. I also chose to provide requested transcripts at the commencement of the following interview. This meant that they had no time to review them prior to the next interview commencing. 25 I was conscious of Freud’s notion of ‘secondary revisionism’ (Gay 1995: 28). Allowing respondents to deliberately reflect upon their stories seemed to contradict the Heideggerian notion of capturing the lifeworld of the respondents, as perceived by them, at a particular point in time. I didn’t want them to ‘construct’ their story beforehand. Interestingly, as the study progressed, I found that few participants were interested in receiving the transcripts.26 Concurrent life events The requisite levels of empathy required during interviews, which were considered essential to the building of trust and the exploration of sensitive issues, became an increasing obstacle from my point of view. I understood that I was a part of the world that I studied and would be affected by it. I also understood that my engagement was necessary to enable the reflexivity required by a study like this (Boyle 1994: 165). However, knowing about things and being successfully able to cope with them are not the same.27 Even though the case study illnesses varied, themes of personal concern were continually reflected in the stories. I found it impossible to remain impassive and unaffected when I encountered hardship and pain in the lives of others. I listened to stories of unthinking callousness, the tragedy of lost loved ones, and to calm (and, sometimes, not so calm) discussions about the prospect of one’s future death and disability. Finally, and entwined with this theme, the methodological approach successfully used to locate the hidden population also had some unintended outcomes. Often, it was people closest to me who acted as intermediaries. As a consequence, those closest then became necessarily (and notably) absent for any catharsis or debriefing about the stories I was hearing, due to the imperative of protecting the confidentiality of participants.

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Analysis As predicted in the literature, the sheer volume of qualitative data (Miles and Huberman 1984: 56; Minichiello et al. 1990: 285), which tended to be in the order of twenty or thirty pages of transcribed data for every interview, was daunting and overwhelming. I also found the task of generating coding keywords to be a troublesome one. Early on, arbitrary lists of codes, that were endlessly updated, were found to be not sufficiently ‘meaningful’. They were difficult to remember and to use. It was only when re-reading Miles and Huberman (1984: 61) that I decided to give some reason to the coding, some order, if only to enhance memory and usability. The theoretical framework was used as the basis for a coding, making recollection of keywords noticeably easier. After that, categories developed were refined on an ongoing basis, but seemed to work reasonably well. A further analysis problem was actually starting. Procrastination, inexperience and knowing where to begin were major problems. The qualitative research literature had indicated the ‘magic’ of analysis and the ‘emergence’ of categories and theory. For one who had not done it before, this was not especially helpful. I read the transcripts several times initially to get a ‘global’ idea of the issues and refresh my recollections of the facts of the various cases.28 Themes and exemplar vignettes were noted. Further, I found that using my own intuition to interpret findings created insistent, and largely unanswerable, questions. For example, were the chosen codes reliable and valid representations of the experiences being recounted? Was I doing this ‘correctly’? I hoped so. Certainly, my reflections on the lives of respondents were with me almost constantly.29 Serendipitous outcomes One of the most notable and heartening manifestations was the apparent desire of the participants to talk to me and to tell their story. All respondents were ready and waiting at the appointed hour of our meeting. All had remembered to fill out their demographic survey and consent forms, and had returned them to me either at, or prior to, the first interview. All reported to me that, from their perspective, the experience had been largely a positive one. No respondent forgot an appointment and any rescheduling was done with plenty of advance notice. I was even given a box of chocolates by one respondent. I was very impressed. The research design worked well. The troubles that I have reported could, mostly, have been avoided, which is why I have included them so laboriously here. On balance, I found the research journey to be a very positive and enriching one, despite the bewildering coalescence of events that took place.

Analysis ‘The aim of data analysis’, argued Minichiello et al. (1990: 285), ‘is to find meaning in the information collected’ (my own emphasis added). My intention

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was to intersperse analysis with the fieldwork, in keeping with the inductive and iterative process that is qualitative research. Analysis during data collection lets the fieldworker cycle back and forth between thinking about the existing data and generating strategies for collecting new – often better quality – data; it can be a healthy corrective for built-in blind spots; and, it makes analysis an ongoing, lively enterprise that is linked to the energising effects of fieldwork … Periodic field visits are interspersed with time for data reduction and display, for drawing conclusions, and for testing those conclusions – either through other analyses in the existing data base or through a new round of data collection. (Miles and Huberman 1984: 49) Contact summary sheets (ibid.: 50) were generated following first interviews with respondents. Using these I was able to ask, what people, events or situations were involved? What were the main themes or issues in the contact? What new questions should be addressed in future interviews? What questions should be asked at the next interview? Additionally, random thoughts, conclusions and questions were captured on a tape recorder kept at hand,30 although, later, these were recorded in notebooks used respectively as an analytical log and personal log (Miles and Huberman 1984). Given my place in the research process, I felt that some separation of my personal journey (and its likely influence on proceedings) was required. The fact that the two were so closely entwined necessitated their distinction at some level along the way. I also note that sufficient time was required for thinking, pondering and musing over the material, and for exploring ideas and themes, and incorporating them into existing explanations. Consequently, deliberate ‘pauses’ were incorporated into the interview schedule to allow for this, given the difficulties of having been ‘swamped’ with interviews and transcripts early in the process. Coding and analysis Coding was performed with words (as opposed to numbers), although I realised the potential problems that words inherently held as codes. For example, words are ambiguous or may lack meaning when taken out of context (Miles and Huberman 1984: 54). However, I found numbers to be meaningless as codes, whilst adding unnecessary complexity, requiring a process of conversion (ibid.: 55). I used open coding, meaning that only significant data were considered for coding, allowing subsequent iterations and refinement. Coding was performed as accurately and responsibly as possible (Sarantakos 1993: 272). Genuine categories were developed, rather than paraphrasing sentences, with the underlining of key data used to aid in sorting. Unused categories were eliminated over time. Codes were developed to consider the setting or context, the definition of the situation, participant perspectives, ways of thinking about things, processes undertaken, specific experiences, and strategies used, and the coding scheme was

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dynamic and inductively developed (Miles and Huberman 1984: 57). I was also conscious that: Codes should relate to one another in coherent, study-important ways; they should be part of a governing structure. Incrementally adding, removing or reconfiguring codes produces a ragbag that usually induces, in turn, a shapeless, purely opportunistic analysis. It also makes the codes harder to memorise and use; the retrieval and organisation of the material becomes burdensome and difficult. (ibid.: 60) Late coding was recognised to weaken analysis (ibid.: 60; Minichiello et al. 1990: 295) and, thus, the theoretical framework remained the basis for codes. Units of data that were sentences or paragraphs (ibid.: 297) were coded by writing codes in the righthand margin and marginal, with reflective remarks recorded in the lefthand margin, the reverse of the format suggested by Miles and Huberman (1984: 65). I did it this way just because I found it easier. I also agreed that any block of data could be a candidate from more than one code (ibid.: 63) – and often was. Some paragraphs drew multiple codes, exemplifying numerous themes at once. The analysis was approached following three interrelated interpretive processes. First, thematic analysis was conducted, where interviews and field notes were read several times in order to arrive at a global analysis (Leonard 1989: 54).31 Second, analysis of exemplars was undertaken. This required the search for specific episodes, stories or vignettes that captured the meaning of a situation in such a way that the meaning could then be recognised in another situation, even though the situations might have had different objective characteristics (ibid.). Third, the search for paradigm cases (read exemplar cases) was made, where ‘strong instances of particular patterns of meaning’ (ibid.) were sought. Leonard’s articulation of interpretive analysis was specifically presented for use with Heideggerian phenomenology and used here in conjunction with van Manen’s (1990: 101) emphasis on the complexity of the lifeworld or the existence of multiple and different lifeworlds, as evident in different experiences and realities. Additionally, after re-reading and coding the interviews, an ideational list of categories was developed for each interview (Brown and Williams 1995: 697). Lists of ideational themes were compared between interviews to pinpoint themes in common (ibid.). Immediately, certain themes became apparent – a useful starting point. This was repeated in an iterative fashion (Minichiello et al. 1990: 286) providing the ability to formulate early propositions which were followed up during later interviews.32 I remained conscious that in a multiple-case study, one goal is to build a general explanation that fits each of the individual cases, even though the cases will vary in their details (Yin 1989: 114). The process of building explanations from transcribed, coded data is called sifting. It is a process that shakes off the

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insignificant ‘noise’ from the aggregate stories, leaving the common but important features (Morse 1994: 31). This can be achieved by using an appropriate computer program, ‘cutting and pasting’ in word-processing documents, or by hand. Synthesising is the ‘sifting’ part of the analysis – weeding the significant from the insignificant (ibid.: 30) – and began, for me, during transcription. Several things assisted. First, I avoided premature closure. Second, I endeavoured to ask questions of the data to create links to established theory. Third, I tried to examine similar concepts in other settings. Fourth, I developed the explanations incrementally, checking out hunches that emerged during the interviews (ibid.: 33–4). I held firm to the original intention of this study: The concern of Heidegger’s hermeneutic is to uncover the hidden phenomena and, particularly, their meanings. As with eidetic phenomenology, hermeneutics presupposes that what is to be interpreted has meaning. Yet the aim of hermeneutic phenomenology is different and more ambitious than eidetic phenomenology. Hermeneutic’s goal is discovery of meaning that is not immediately manifest to our intuiting, analysing and describing. Interpreters have to go beyond what is given directly. Yet, in attempting this, they have to use the ordinary, everyday given as a clue for meanings that are not given, at least not explicitly. (Cohen and Omery 1994: 146) Finally, I needed to look at the whole project and somehow make sense of how these activities fitted into the broader spectrum. Returning to Glaser and Strauss’s (1967) discussions about grounded theory, I considered the parallels. First, I had developed a general statement about a topic. Second, I had collected data about it to gain a better understanding. Third, I had modified, revised and expanded my understanding of the data collected as the analysis and data gathering had continued. However, at this point, I diverged with Glaser and Strauss, who argued for an iterative process where a search is made for cases which do not fit the explanation given and which require a satisfactory explanation. Given that this was a phenomenological model (where there is recognition and acceptance of the unique), it was at this point that a shift away from the requirement of a complete, grounded theory was made.33 I also highlighted the need to study the whole transcript, not only in the context of what was said, but also in terms of what was not said, and within the boundaries that I had chosen to apply (Minichiello et al. 1990: 292). I paid attention to understanding ‘the informant’s use of idiom’ and their ‘filters’ of interpretation (ibid.), so that I could understand what they meant and they could understand me. This required me to distinguish in my mind between participant concepts and theoretical concepts. Participant concepts are created by informants and couched in their everyday language. Theoretical concepts are created by the researcher and not necessarily immediately recognised by the informants as part of their terminology (ibid.: 291).34

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Participant response to the research process All respondents were routinely asked at the conclusion of the second interview how they felt about the research process. Most indicated that, on balance, the process had been a favourable one. I found that altruistic reasons were frequently proffered as reasons for the sharing of their time (and valuable energy), as well as such sensitive information about themselves, with a complete stranger. They also reported that, as a result of this work, they no longer felt alone in their struggle. I share Shelley’s comments as being reasonably representative: I guess it could help somebody else down the track. It’s, well, I guess in a lot of ways, like mum and I were speaking as well, that you sort of, I think in a lot of ways it makes you aware that, yes, you’re not on your own. That there are a lot of people out there. You probably don’t even know yourself. I could have passed you in the street and wouldn’t have even known. So, in that respect you think, ‘Hey. Yeah. There are other people in this same situation that have to mask everything and carry on with life as if you’re normal.’ (Shelley Interview #2: 14)

SHELLEY:

I was conscious that respondents gave a great deal personally and emotionally to this research process.

Limitations Finally, I conclude with some potential limitations of this study. Explanations have not been repeated when the issue has been discussed earlier in this, or the previous, chapters. • • • •

Use of primarily one (versus multiple) source of data (Yin 1989); Investigator intimacy with subject under study (Field and Morse 1985: 119; Swanson-Kauffman 1986: 69; Dreher 1994: 286); Researcher inexperience (Swanson-Kauffman 1986); Use of primarily verbal interview data. This includes possible problems of informant memory, temporal effects, and a dependence on the informant’s ability to articulate their experiences and feelings (Foddy 1993).

However, I believe that the outcome was very worthwhile. The following chapters share the authentic stories that I have tried to capture, interpret and share. Strap yourself in.

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A passage of trauma

Well, it is four months and one day since Michael’s seizure. All this time, and yet this is the first time I have had the courage to put finger to keyboard on this particular subject.1 Whilst I am embroiled in the lives and trauma experienced by participants with invisible chronic illness who work, my husband has a very public, very lengthy, very serious brain seizure – at the office for all to see. Here was a very visible manifestation of his unseen chronic illness. There were some warnings before it happened. Michael had told me of his difficulty concentrating, his problems remembering events and conversations. In the weeks preceding the seizure, I recall that we had several very strange conversations and had argued over whether some conversations and events had even taken place. Michael had no recollection of certain discussions and agreements and so, for him, they didn’t exist. Michael then went to see the doctor about a couple of problems related to his sarcoid, but forgot to tell him about his memory loss. Before he went to the doctor, I remember overhearing him speaking to relatives on the telephone, asking about Alzheimer’s disease being in the family. Hadn’t his grandmother died of that? In Michael’s case, the changes that his invisible illness brought had stealthily crept into our lives, without either of us noticing. However, the seizure marked the move to a new life, for him and for me. The seizure – and all of the serious and life altering corollaries that followed – flagged shifts to every aspect of our individual and collective lives forever.2 For Michael, the passage brought by his illness spreading to his brain has been swift and cruel. For us both, the trauma remains unending: endless medical consultations, medical tests, fear for the immediate future – and beyond. Our past lives a fond and increasingly distant memory as we struggle to embrace what the future holds, and with what? Our communication patterns, our relationship of old, our plans for the future, our financial security, the security of hearth and home; decimated in a single afternoon, never to be relied upon as before. The ramifications of Michael’s seizure are incredibly far-reaching. I dare not think too much. Michael has not returned to work and if no miracle is bestowed upon us shortly, is unlikely ever to do so. He remains cognitively impaired, including memory problems, speech difficulties, and reading, writing and comprehension difficulties, that have left him confused and uncertain about his place in the world. In addition to this, over the past week Michael has become somewhat clumsy and is staggering as he walks, indicating signs of further neurological disease. His anti-convulsive medication has been increased due to recent petit-mal episodes, indicative of another impending seizure, as has the prednisone, which is supposed to control disease progress. We are uncertain what is wrong with him; the medication appears to be having little effect; the future is bleak. The most likely diagnosis (unconfirmed) is neuro-sarcoidosis.

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Sarcoidosis is a systemic disease and a potentially life-threatening one. No one told us that this so-called ‘benign’ condition, previously affecting his lungs (among other things), could spread to his brain. No one warned us that it could turn our lives upside down. No one told us it could threaten his life or threaten our future. For now, I return to the fray: sadder, tougher and surer than ever that the stories of my informants must be told. If what Michael and I – and so many like us – are enduring is not a crisis to be recognised, a story worth telling, a situation worthy of some societal and organisational compassion, I must wonder, what is? (Vickers 1996b)

Introducing the respondents3 Daphne Daphne is a 39-year-old married woman, of Greek descent, born in Egypt. She was diagnosed with multiple sclerosis (MS)4 in May of 1995. Daphne recalled, during the interviews, that her first MS symptoms were about eight years earlier. At the time of interview Daphne had not told her mother, father, mother-in-law or two of her sisters that she has MS. Daphne has a technical college certificate and earns between $A50K and $A75K as a middle manager in the computing industry. She works long hours, with 60–70-hour weeks being reported at the time of her first MS episode. I noted that when I concluded the interviews with Daphne at her office (around 7.30–8.00 pm), she did not immediately leave the office, but preferred to stay on to finish off some work before going home. Shelley Shelley is a childcare assistant. At the time of interview, she was 25 years old. She reported being single and earning less than $A25K per annum. Shelley is English. She has acute lymphoblastic leukaemia.5 She was diagnosed with this in July 1986 when she was just fifteen years old. Shelley has a visual arts degree already and is currently working full-time whilst studying psychology part-time. She hopes to go on and do a Master’s degree. It has also been relayed to the researcher since the interviews were concluded (via the intermediary) that Shelley is engaged to be married. June June is a 47-year-old English woman who works as a social worker at a hospital in the Western Sydney district. She has a Technical College Certificate, earning between $A25K and $A50K. In 1985 June was diagnosed with glaucoma,6 a condition which adversely affects the pressure in the eye, ultimately causing blindness. In addition to this, June also shared with me that she has been dealt several other traumatic blows in her life. Not only does her daughter Shelley

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(above) have a life-threatening form of leukaemia, her husband was quite recently and senselessly murdered. June has endured numerous surgical procedures in efforts to remedy her eye problems, although without long-term success. Rodney Rodney is a 34-year-old married English man. He has a professional postgraduate accounting qualification and earns between $A100K and $A125K in the private banking sector. Eight months prior to my interviews with him, Rodney was diagnosed with spondylolisthesis.7 Rodney reported having chronic back problems for at least eight months prior to his diagnosis due, in some part, to poor lifting technique and injuries sustained whilst working around the house. Interestingly, Rodney commented, during our first conversation over the phone and again during the first interview, that he didn’t think we would have much to talk about. Linda Linda is a married Australian woman, aged 28 years. She completed high school and now earns between $A25K and $A50K working in the private banking sector as a computer applications engineer. Linda reported enthusiastically to me that she is a regular gym-goer who does not drink or smoke. In May of 1994 Linda was diagnosed with breast cancer,8 which necessitated the entire removal of her breast (a full mastectomy) and a course of chemotherapy. Subsequent metastasis in her sternum (breast bone),9 approximately six months after the mastectomy, necessitated a course of radiotherapy. At the time of our interview, Linda had not gone twelve cancer-free months since finding a lump in her breast. It is traditionally the case with cancer, that those affected can start to relax after five years with ‘clear’ tests, although many would suggest that one should never ‘close the door’ on cancer. Maryanne Maryanne is a 35-year-old single Australian woman, who lives with her mother. She is currently completing a postgraduate qualification at the University of Technology, Sydney and earns between $A25K and $A50K. She is employed as a Liaison Officer for a charitable institution, where she has been working for the past eight years. Her position is one involving multiple administrative and public relations functions, including working with volunteers for the organisation. Maryanne has endometriosis 10 and interstitial cystitis.11 Maryanne volunteered to participate in the interview process when hearing of my work, rather than being ‘recruited’ through an intermediary.

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Rosalie Rosalie is an articulate, 48-year-old married Australian woman with three children, all of whom are living at home. She has a Master’s degree and is in partnership with another woman in a consulting/training business, doing much of her work from home. Rosalie has chronic fatigue syndrome (CFS),12 or myalgic encephalomyelitis (ME),13 as has her daughter, and has been plagued by constant malaise and fatigue since the beginning of 1993. She earns between $25K and $50K. Shirley Shirley is another of the participants with more than one unseen chronic illness. She has endometriosis, lipodystrophy,14, a hearing impairment and a learning disability. She lives with her mother who is also profoundly deaf and who is a kidney dialysis patient, requiring dialysis nursing on a regular basis from Shirley. Shirley has been employed full-time in the public service for the past ten years and also works a weekend job.15 She is Australian, earning between $A25K and $A50K. She is 41 years of age. Shirley faces the possibility of an unwelcome hysterectomy (as a result of her endometriosis) and of her impaired hearing deteriorating to a profound deafness, as has been the case with her mother. Beverley Beverley is also aged 41 and is an Australian single mother living with her two daughters. She has a postgraduate university qualification and earns between $A50K and $A75K in the public sector. She has been with her current employer for the past three years and during that time was diagnosed with multiple sclerosis. Her diagnosis followed a particularly stressful period in her life when she had left her husband and moved from an Australian country region to Sydney, to find a new home and a new life for herself and her daughters. Fred Fred is a 54-year-old Italian man. Fred completed high school and works as a sales representative earning between $A25K and $A50K. He has been with his current employer for six years. Fred was (eventually) diagnosed with a malignant tumour in his lung in October of 1991, after an extremely protracted diagnostic process. He also has a slipped disc in his spine, causing him a great deal of pain. Fred is divorced and lives alone. What follows are stories of life and work with invisible chronic illness – previously silent organisational voices – as reported by these ten participants.16 Many of the themes that follow encompass an entwining of the work-world of people with unseen chronic illness and other aspects of their lives. One of the important early observations made was that respondents did not draw an arbitrary line encircling, and separating, their work from the rest of their lives. This

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phenomenon was noted by Burgess-Limerick in her PhD study of women who own or manage small businesses. She described the phenomenon of the ‘work–home mesh’ (1993: 360) and ‘boundaryless lives’ (1995: 97). Respondents in this study have reported their lives as they were lived: a rich mélange encompassing work and non-work activities and relationships. I have tried to do the same.

A passage of trauma Without doubt, the worst day of my life was the day I had to decide whether or not to allow the doctors to perform a brain biopsy on Michael. I calmly (or so I thought) listened to the neurosurgeon describe the procedure. I recall being told about a circular iron frame that would be screwed onto Michael’s head, through his skin to the skull, so that his head would be completely immobilised. A hole would then be drilled (yes, with an electric drill) through Michael’s skull and a very fine needle inserted into Michael’s brain. The needle would be carefully directed to the exact co-ordinates of the largest and most serious lesions in his brain, which would have been predetermined with the assistance of a computer. From there, some of the abnormal cells that had contributed to his seizure would be extracted for examination leading, hopefully, to a diagnosis. More than most, I knew many of the risks. Apart from what I had already read about some of the medical disasters that had contributed historically to people’s misery over the years, Michael’s neurosurgeon did little to alleviate my growing anxiety. The neurosurgeon calmly pointed out to me, whilst I was at Michael’s bedside in the hospital, the risk of ‘a bleed’ or of death, in terms of percentages. Michael was also trying to take all this in, although without much success. At that time, he had difficulty following conversations. Of course, I couldn’t have cared less about all the other ‘statistics’, or of who had survived or not. I was concerned about Michael. Would he die from this operation? How could I make this decision, to allow this ‘leading edge’ brain surgery, knowing what might happen? Was this up-and-comer in neurosurgery overly anxious to document this rare case for publication? As an academic myself, and something of a sceptic of medical ‘miracles’, I recall how my stomach churned in fear and how I struggled to keep the tears at bay – to ‘be strong’. In the end, I had to allow the operation, with all the reservations I felt, in order to get a diagnosis. Why? Because of administration of the wrong drug (for example, prednisone, if a malignant tumour of the brain remained undiagnosed) would have been disastrous. The prednisone would have allowed a malignancy to go rampant (as it works by restricting the body’s natural defences so as to reduce inflammation). If that happened and a malignancy was responsible for Michael’s problems, the lesions/tumours would have undoubtedly grown in size and would, possibly, have spread elsewhere in his body. No one knew what was wrong with him and we had to try and find out. As an interesting aside, Michael told me that during the operation, for which he was awake the entire time (‘No pain fibres in the brain to worry about’, said the neurosurgeon), Michael heard the neurosurgeon saying, ‘Gee, I’ve never seen anything like this before’. How comforted he must have been, especially given that the sedatives he had been given prior to the operation, to calm him during the procedure, had long since worn off, as the operation was performed hours later than was originally anticipated.

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After the operation was complete, the surgeon then neglected to come and tell me whether Michael was alive or dead, let alone what had been discovered. I waited where I was told to wait – and waited, and waited. Eventually, terrified, emotional, and imagining the worst, I wandered around the hospital trying to find someone to tell me what had happened to him. I finally tracked Michael down in intensive care where he was recuperating from his ordeal. I was swamped with relief to find that he was still alive. I’m glad that day is over. The only communication I ever received from the neurosurgeon after the operation was the bill. (Vickers 1996c) One generally thinks of a journey in terms of getting from point A to point B: a simple linear progression with an end point. The journey that the participants spoke of was different. It was characterised by its iterative nature; its tumultuousness; its uncertainty; and by the fact that it may never end. Chronic illness is, by definition, indicative of long-term illness (Curtin and Lubkin 1990: 2). It is a long journey and its consequences and limitations are reinforced with every exacerbation and remission. It also incorporates an ‘inevitable passage’ (Glaser and Strauss 1971: 15), one that may be ‘non-reversible’ (ibid.: 14) and, like other significant passages of status, has the properties of being central in the life of the bearer (ibid.: 4–5). The passage associated with many chronic illnesses is frequently an ‘undesirable passage’ (Glaser and Strauss 1971: 113) in that it may demoralise, stigmatise and affect other passages (for example, career paths) in that person’s life (ibid.: 114–15). Chronic illness is unpredictable, insidious, episodic (Curtin and Lubkin 1990: 2) and liable to drag on for years, defying efforts by the medical profession to control it (Register 1987: 3). It is also frequently associated with a descendent life trajectory as a result of the disease progress and/or associated stigma. Freidson (1970: 240) described ‘illness as process’; Schmidt (1989: 24) exposed illness as a ‘way of life’; Lipowski (1970–1; cited in Lazarus and Folkman 1984: 177) categorised ‘illness as challenge’ and ‘illness as enemy’. Invisible chronic illness combines all of these outcomes and trajectories with the additional troubles associated with symptoms that are not externally manifested (Donoghue and Siegel 1992: 4). Initial symptoms and a journey begins All participants were able to recount the beginning of their particular journey, regardless of whether their journey began days, months or years earlier. I was conscious, initially, of the need to define some point of commencement for their journey, as they perceived it. Prior to thinking through this particular issue and, certainly, prior to analysing the respondents’ stories, I had assumed that a journey with chronic illness commenced with diagnosis. However, as I thought more about this, it was felt that Curtin and Lubkin’s (1990: 4) ideas about disease onset were more appropriate.They had successfully argued that the time and origin of the disease onset is debatable. I agreed that, just as disease origins are

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debatable (for example, whether the origin is when the first cancer cell divides as opposed to a diagnosis ten years later), the genesis of the personal journey lived with illness was also likely to be debatable. Further reflection also led to a firm rejection of diagnosis as the starting point. It was such a positivist, medicalised notion and didn’t meld easily with what I was hearing from respondents. It was held, instead, that the personal illness journey’s inception is well before diagnosis – in some people’s case, years before. As a phenomenological researcher trying to understand meaning in lived experience, I could not trivialise the essential clarity with which those first symptoms were repeatedly described to me. When I asked respondents to ‘start from the beginning’, this is where they started. When I asked ‘What happened?’, their stories would invariably begin with vivid descriptions of their initial symptoms. Further, this interpretation was reinforced and supported by my observation that, invariably, participants’ recollections were easily and clearly recalled, even if they had taken place months and years earlier. Responses about their initial symptoms were complete with dates and times, indicating their significance. Respondents also did not usually indicate subtle changes as a result of these early symptoms. When reported, these initial symptoms seemed to be recalled as being significant and impacting their lives. For example, the journey began for Fred (Interview #1: 3) with pain in his right shoulder and right arm that would not go away. Daphne awoke one morning to find her sight gone in one eye (Daphne Interview #1: 1). Linda’s life changed – forever – the moment she found the lump in her breast: In May 1994 I was having a shower and I felt a lump under my nipple. I showed it to my husband and asked him what did he think about it, and he said, ‘I’d go to the doctor.’ And I thought, ‘Oh no. I’ll leave it a week and see if it gets any smaller or goes away.’ And of course it didn’t … So I went to the doctor’s, but I thought, I really wasn’t thinking breast cancer. I just thought [it was] a cyst or something. (Linda Interview #1: 1)

LINDA:

The fact that Linda was able, after all this time, to recollect the month, the year and the activity she was involved in so clearly, is indicative of the significance of this life-altering event. She was even able to recall what she thought, why she waited, how long she waited, and what her subsequent activities were. The first inklings of fear were also apparent, even at this early stage. She put off going to the doctor, and she specifically mentions the fact that she was not considering breast cancer. She reported thinking that the lump she had found was a cyst. I would suggest that the reverse might have been more likely. Knowledge of the prevalence and characteristics of cysts in breast tissue is unlikely to be as high as the immediate association of lumps in the breast with breast cancer. Thus, it was this time, described repeatedly by respondents, that was considered the epoch of a changed life (Sheehy 1974: 3), the beginning of the often undesirable status passage (Glaser and Strauss 1971: 113) and, perhaps, indica-

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tive of the incipience of a downward shift in social mobility (Goffman 1969: 31). For some, it also marked the potential genesis of life as a stigmatised individual. The diagnostic process Initial symptoms frequently prompted respondents to seek help. A medical diagnosis is often sought to allay fears (Johnson 1991: 13) or to solve the problem. As argued above, respondents described to me, over and over, the beginning of their journey as being linked to the initial symptoms they had experienced. The diagnosis – which may come days, months, weeks or years later – marks the discovery of the status passage (as defined by Glaser and Strauss 1971: 83) rather than the inception of it. It is ripe with significance, and is characterised by a journey in itself. Coming to a diagnosis is rarely as simple as seeing the doctor, explaining the symptoms and leaving with a firm diagnosis, despite Western objectivist, positivist expectations, as shaped by the Western medical model (Mechanic 1978; Nettleton 1995: 3). It is argued that coming to a diagnosis is a processual experience which may be experienced in terms of hours, days, weeks, months or years – although once reached the speed of the change may be felt in an instant (Sheehy 1974: 3). For 28-year-old Linda, the diagnosis of breast cancer was swift and the life changes irrevocable: So what happened was he sent me off for a mammogram. So I had the mammogram and it came back highly suspicious. So then they sent me off for a needle operation, a biopsy. So I had that, and then that came back very, very highly suspicious. MV: What kind of a time-frame are we talking, since you first found the lump, and all these things? LINDA: About a week. It all happened really quick. And even then, when they sent me off for a biopsy, just under a local anaesthetic, and I knew at that stage, ‘This is cancer.’ But you want to block it out of your mind, even though you know, you still think, ‘Well, maybe it isn’t.’ But then it came back, yes, it was malignant and it had actually spread outside of the duct wall, so it was pretty serious … so they couldn’t actually just take a lumpectomy, they couldn’t just take the lump out. They actually had to remove the whole breast. (Linda Interview #1: 1) LINDA:

For others, the diagnostic process took longer. Daphne reported seven years elapsing between her first MS symptoms and the diagnosis. Over those years, she experienced loss of peripheral vision, aching and complete loss of vision in one eye, extreme fatigue, ataxia (difficulty walking, climbing stairs, feeling drunk), and reduced immune response. Fred similarly reported a protracted diagnostic course: his search for lung cancer took nine months over which time a malignant tumour was growing in size, presenting an ever-increasing threat to his life:

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So eventually I went to the doctor’s about it and he said, ‘Oh, you’ve just got a pinched nerve.’ Because it was all the symptoms of a pinched nerve. So he started treating me for a pinched nerve … And so this went on, and it was dragging on and on for weeks on end, and I kept on trying all these other tablets, because things weren’t working, and then he gave me a bit of heat treatment, and it wasn’t getting any better, and all this sort of nonsense. MV: How painful was this? FRED: It wasn’t very painful, but it was just constant pain. But the worst part about it, not so much the pain in there (Fred indicates the back of his right shoulder), but it was down the arm, because you couldn’t sort of leave your arm hanging loose. You were forever sort of walking around holding your arm like that. (Fred indicates what he means, holding his right arm folded up against his chest with his left arm supporting it. His right arm was bent and his hand held at upper chest level.) It was probably like, you know, you have a lazy arm or something and, you know. And it was just there all the time, twenty-four hours a day, you know, waking me up of a night in bed, and all that sort of thing. So I just kept trusting my doctor, because I’d been to him for a long, long time. And I just kept going back to him, and he kept, you know, using me basically as a guinea pig with these, trying all these different pills out and giving me heat treatment and all the, you know, cortisone injections and all that. That went all right for a couple of days, the pain was going away. Then it come back. So, after about six or seven months of this, which I suppose I was a lot to blame too because I should’ve, I didn’t carry on with it. I just trusted him. I should have went somewhere else. He said, ‘Oh,’ he said, ‘I think I’d better send you to St Vincent’s hospital and see the doctor out there.’ And he had a look at it, and all he said, he said the same thing. MV: He said you had a pinched nerve? FRED: Yes. Nothing else and he didn’t sort of go on with it, to think it could have been anything else. So, he couldn’t find nothing wrong. So I went back to the doctor’s and said, ‘Well, he can’t find nothing. Blah blah blah.’ And so I just got a bit cheesed off and someone said, ‘Oh, look. Go to a physiotherapist, because if it is only a pinched nerve they’ll fix you up in no time.’ So I went to a physiotherapist and they said, ‘Oh, yes. No problems. We’ll fix you up in a fortnight.’ So, two weeks went by. No change. Three weeks: nothing. Four weeks: nothing. And they said, ‘Oh look, we can’t do any more here. You’ll have to go, there’s something wrong with you, you know.’ So from there on I went to — MV: And this had been, how long? Eight, nine months? FRED: This would be going into about nine months by this stage. And —, and then the doctor finally sat up and took notice that there was something wrong. So, he sent me into the Edgecliff Medical Centre to have these CAT scans done, or scans, or whatever you call them, you know … And the doctor said to me at the time, ‘Oh,’ he said, ‘this doesn’t sound very good to me. It sounds like the symptoms of a tumour in the lung.’ I thought, ‘Oh Jesus,’ you know? So, anyway he was right. (Fred Interview #1: 3)17 FRED:

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The medical diagnosis may give the sick person permission to adopt the Parsonian ‘sick role’ (Parsons 1951), which allows the bearer to be (for a nominated period) exempt from their usual obligations, as long as they follow the prescribed course of treatment. However, as Turner (1987: 54) has successfully argued, the sick role does not apply to the chronically ill.18 A more accurate term referring to those with ongoing illness might be an ‘impaired role’ (Lubkin 1990: 47; Curtin and Lubkin 1990: 13), which serves to indicate the possible impairment to function, to the ability of the sick person to continue in normal social roles, whilst also recognising the ongoing nature of the problem. Whatever posture is adopted, some kind of medicalised definition of what is wrong does provide a turning point for the person affected. A diagnosis has powerful outcomes for people with invisible chronic illness. The power of a social label (White 1982: 126) cannot be underestimated. For example, the diagnosis allows the sick person to name and validate their illness, and not feel they are ‘neurotic’ or ‘crazy’ (Register 1987: 3). In Fred’s case, a diagnosis of cancer conveyed a plausible explanation for the pain he had been experiencing and the time he must have taken in trying to find out what was causing it. Rather than being regarded as a malingerer or a hypochondriac, Fred’s diagnosis of a life-threatening illness suddenly gave his mysterious pain a name – and an identity. However, sometimes, and concurrently, a diagnosis can convey (correctly or incorrectly) negative information that will adversely affect the bearer, possibly more than the illness itself. For example, a diagnosis of multiple sclerosis may (inappropriately) evoke perceptions of wheelchairs and incontinence (Robinson 1988: 44). Labelling has been argued to amplify perceptions of deviance (Lindesmith and Strauss 1968: 400; Turner 1987: 73), with the label coming to comprise a constituent part of the social identities of people involved. Labelling others may also become a means of ostracising from the group those that are different (Gething 1984). Under these circumstances, labelling becomes part of the maintenance of relations of dominance and social control (Parsons 1951: 206; Turner 1987: 61). Thus, labelling a person with illness by providing a diagnosis may tend to define the person, rather than one small part of them (Christensen 1992). Shirley, who had been ‘labelled’ by her colleagues as being deaf, shared her feelings about her treatment as a result of having a hearing impairment. Shirley believed that being labelled deaf meant that others would also think she was stupid. She recounted the experience of being called a ‘deaf idiot’ by one of her colleagues and the laughter that this had evoked amongst her peers. MV: And how did you feel when they all had a laugh at your expense? SHIRLEY: — And I, oh, can I swear? MV: Mmm. SHIRLEY: I said, ‘Well, you are all a bunch of bastards.’ I said, ‘Because

you know I can’t hear and, really, you are making fun of yourselves, not me. I mean, I didn’t hear what you said. If you think it’s funny —’. And a couple

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of them got upset. A couple of them got really put out, and felt really bad. And when they came over, I said, ‘Look, don’t talk to me. I don’t like it when you are rude.’ MV: Did you feel, how did you feel? SHIRLEY: — I’ve got to the stage now that I just, I don’t take any, it doesn’t worry me. Like, if it was a personal thing, like if they had of said to me, ‘Oh, jeez. You’re an idiot, or jeez you’re stupid’, then it would’ve hurt me. I would have been more. I don’t really get hurt. I think I’d be more cranky, like, an insult. But, no I didn’t, because as far as I’m concerned they’re the ones with the problem. So it didn’t really worry me, but if someone came up to me and said, ‘Jeez, you’re stupid. You never hear anything I say’, then I would feel bad. Then I would retaliate. (Shirley Interview #2: 5–6) Interestingly, in the earlier interview, Shirley had told me that one of her colleagues had called her a deaf idiot and that she had retaliated by telling the person that what he had said was harassment and that she could have made a complaint. Certainly, such brutishness on the part of Shirley’s colleagues seems hard to comprehend. It is suggested that her statements about not being worried about it might form part of her required ‘armour’ to protect her from the barbs of ill-informed and cruel peers. The hurt was evident in Shirley’s text (or subtext), despite her courageous words. One can also see the possibly negative outcomes that a diagnosis and subsequent label can invoke. The shock of discovery In addition to the social ramifications of finding out about a chronic illness, the personal response of the bearer to the actual diagnosis is likely to be a strong one. The discovery of a serious, chronic, potentially disabling or life-threatening illness is likely to confront psychological, social, physical and economic aspects of the sick person’s life (Curtin and Lubkin 1990: 6). It is, in this context, a personal crisis point.19 The notion of ‘the world crashing down’ may be as a direct result of facing one’s own mortality, of lost control over bodies and lives (Johnson 1991: 27–8), and of a keenly felt loss of ‘personal invulnerability’ (Raphael 1986: 79). June’s response to a diagnosis of glaucoma (a condition which may ultimately result in her blindness) epitomised this: Yes, I actually came back to work the next day, quite shattered. So, I decided, ‘I’m going to go blind’ there and then. I went quite hysterical about the whole thing … I vaguely remember being off my face, saying, ‘I’m not going to go out with Than [then boyfriend, later husband] any more. I can’t bear him —. I can’t live with him if I’m going to be a burden on him.’ And one of the girls said, ‘Come on, I think we need to go for a walk.’ And I remember her saying to someone, ‘Is there any brandy around the place?’ (June Interview #1: 11)

JUNE:

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Most respondents shared a similarly strong reaction to the news of their illness. This, of course, varied depending upon the nature of the condition, the individual involved and the context of events and circumstances that had thus far shaped their lives. Mostly, the reaction was negative, including reactions of grief, fear, anxiety, initial hopelessness, impaired social relations, and negative changes in body image and self-perception.20 Fred recalled his shocked response to a diagnosis of lung cancer, which readers should note was given to Fred in the month of October: So, the next step from there was, they put me into Concord Hospital for a day and they had to do biopsies in, you know — MV: A needle biopsy? FRED: They dig these needles straight in through, into the lung, into the tumour, and that would determine, you know, whether it was a malignant tumour, or, or, it was benign, and you know. So the hospital wouldn’t tell me themselves, so I had to get, I had the X-rays. I had to take them back to him, and the minute he seen it, he said, ‘I’ve got some very bad news for you, Fred.’ I said, ‘Yes, how bad?’ He said, ‘It’s malignant.’ And he said (deep breath in from Fred) ‘With the size of your tumour’, and this is exactly what he said to me, he said, ‘I think you better go and get your house in order.’ In other words, get the will made out and all these sort of things. And I said, ‘Oh, you’re kidding me, aren’t you?’ And he said, ‘Look, you won’t see Christmas.’ Just like that. Yes. It was real, a bit of a sadistic sort of a bloke, you know. And, I don’t, I don’t really think he meant to say it that way, but I just said to ‘give it to me straight’, you know? I said, ‘Just don’t muck around. Just give it to me straight, you know.’ And he said, ‘Well, the way things look at the moment, the size of that, and seeing it is a malignant tumour, and it is growing,’ he said, ‘you know, you’d be lucky to be here around Christmas. Easter the latest,’ he said. ‘Yes’, he said, ‘The latest.’ Oh Jeez, and then the world really fell. You know I just sat in the chair and I froze. Because I’d driven the car there, too, and I thought to myself, ‘How am I going to drive home in this condition, you know?’ It was out at Edgecliff. So —, after I sort of got out of the shock of it (nervous laugh), you know, he gave me a couple of ‘calm-me-down’ tablets. And he said, ‘Look, it’s, all is not lost.’ He said, ‘First thing Monday, the following week, I’m sending you straight to this doctor.’ (Fred Interview #1: 6–7) FRED:

Where there is a negative response to diagnosis, such as was the case for Fred, a major concern of respondents was often what the future would hold and when it might arrive: ‘The rate of passage is of deep concern to agents and passagees’ (Glaser and Strauss 1971: 41). This personal crisis is not merely sudden (in this case, signalled by diagnosis), but may also be gradual and prolonged (Raphael 1986: 5) – a personal crisis experienced at a personal level that is ongoing, creeping and problematic. For example, I recall Daphne’s confession that her

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MS was ‘really going a bit downhill at the moment’ (Daphne Interview #1: 2), which quietly illustrated her likely feelings of powerlessness in the face of the MS disease process (Shroeder and Miller 1992: 179) and her fears of ‘creeping disability’ (Vickers 1997a). However, sometimes there were more positive responses, although still strongly felt. I share Shirley’s triumph with a belated diagnosis of endometriosis, which finally came after years of being misled, trivialised and patronised: So, Shirley goes on and she went and saw another gynaecologist who happens to be with the Women’s Hospital and he told me it was all in my head. So, that’s OK. That’s fine. (Shirley is being sarcastic) That went on for another couple of years. Anyhow, I was finally put on to the guy that was the superintendent of Crown Street Women’s Hospital at that stage and he said, ‘Oh, you’ve got endometriosis.’ So it took four years. MV: And how did you feel when somebody believed you and told you you had this problem? SHIRLEY: I turned around and I thought, ‘All you sickheads that have had all this big education with going to Uni and all this sort of thing, you couldn’t work it out.’ And I thought, all I thought was, ‘One on me.’ (Shirley licks her finger and draws a ‘point’ on the imaginary scoreboard in the air) I just thought, ‘I knew all along.’ (Shirley Interview #1: 3–4) SHIRLEY:

For Daphne, her positive response to a diagnosis of MS was one of relief and understanding: DAPHNE:

It’s good to know exactly what it is so you can deal with it. (Daphne Interview #1: 1)

For Beverley, though, ambivalence: on one hand she was shocked with the diagnosis of MS and yet found it somehow comforting in explaining, even justifying, her perpetual tiredness (Beverley Interview #1: 17). Finally, as a further variation, one must consider what may be the unique experience of Rodney, where no strong feelings were indicated in his response to his diagnosis. A number of possible, and plausible, interpretations might be worth considering. First, his common-sense beliefs about his condition may have resulted in his apparent lack of concern about the future (Klonoff and Landrine 1994: 416). Rodney may have been adopting a normalising stance (Branson and Miller 1992; Robinson 1993: 12), where the significance of the problem was minimised. He may have also been attempting to maintain personal control over the situation (Johnson 1991: 21). He may have been less informed than medical professionals about his condition (Blaxter 1995: 26) and, as a result, unaware of its possible future outcomes. He may have been ‘masking’ his true feelings (Goffman 1969: 17) for any number of reasons. He might have been (consciously or unconsciously) employing Freudian defence mechanisms of denial, rationali-

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sation or repression (Kline 1984: 20; Oldham and Kleiner 1990) to cope with his situation. His response could also have been symptomatic of a male struggle against sentimentality (Schafer 1986/1996: 95), or related to the fact that Rodney did not experience ‘felt stigma’ with regard to his condition (Scambler 1984: 215; Jacoby 1994: 270). Alternatively, perhaps I simply misunderstood or misinterpreted his story due to my own a priori view (Sandelowski 1995: 371). Finally, Rodney may have had nothing to be concerned about. However, during the second interview Rodney did indicate that he could be facing future problems with his back.

Conclusion The passage of trauma has been introduced. We have seen that, for people with unseen illness, there are illness experiences and outcomes that impinge on their working lives that others may not be aware of. For example, Fred was required to attend endless medical consultations over a period of nine long months before getting a final diagnosis. This would have necessitated time off work, perhaps requests for medical certificates, the use of sick leave, and explanations to management – at a time prior to a firm diagnosis. After the diagnosis, he was shocked with the knowledge that his life may have been shortly coming to an end. The stories represented thus far portray some of the difficulties of the commencement of a life with chronic illness. However, the problems certainly don’t end there.

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The crisis deepens for Michael and me.1 Reminding myself of the importance of the researcher’s experiences in this Heideggerian, phenomenological study, especially as an insider to the phenomenon, I feel compelled to record more of my thoughts whilst immersing myself in the task of analysis. This is a rather painful and depressing assignment, but I procrastinate no longer. As I continue working on my thesis, my own invisible chronic illness (multiple sclerosis) increasingly presents problems. Due to the crisis unfolding with Michael, I have, through necessity, pushed thoughts of my own condition to the outer reaches of my mind: it is simply too appalling and too fearsome to comprehend that my own health could be falling apart, as is his. Finally, last week, I admit defeat. Both of my feet are without feeling; my right hand is feeling strange, thick, as if it doesn’t belong to me; and my speech is becoming increasingly tortuous and jumbled. If I continue to ignore this any longer I will shortly not be able to drive the car or sign my own name; reasonably important functions in most people’s lives, mine being no exception. There is no guarantee of resolution but I guess I really should see if anything could be done. A brief consultation with the neurologist confirms that treatment is recommended. A ‘pulse’ of prednisone will be administered intravenously as an outpatient at the hospital. My questions to the neurologist about the likelihood of side effects are met with a definite response: ‘You shouldn’t experience any problems.’ I ask, ‘Can I still work?’ The reply, ‘Oh yes.’ The only problem drawn to my attention was the possible long-term effect (decalcification) on my bones. Well, the rather euphemistically named ‘pulse’ of prednisone actually had one or two shortterm ramifications as well. Since commencing the treatment at the hospital, I have been extremely nauseous, turned yellow, then grey, felt significant pain all over my body, and had palpitations and hot flushes. My face has swelled up like a balloon (as, to my dismay, did the rest of my body), and I have been unable to do anything that meant remaining awake or getting out of bed. As the days passed I also saw my vision go blurry and my thought processes becoming increasingly fuzzy. Stringing a coherent sentence together has become something of a challenge. I also noticed an uncharacteristic aggression for the days following the treatment and what I could only describe as general and complete debilitation. And, no wonder. Michael currently takes 50 milligrams of the drug on a daily basis (what is generally considered a very high dose). I have been subjected to 1 gram a day, for three days. This is twenty times the dose taken by Michael, and straight into the vein. I regarded the symptoms I experienced as being somewhat problematic during sensitive, phenomenological interviews. The interviews were postponed and the respondents inconvenienced were, I thought, rather understanding.

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As I write this, however, the first concentrated effort I have managed since entering the hospital five days ago, I can feel my toes, intermittently, for the first time in six months. I feel an irrepressible and ridiculous sense of optimism. (Vickers 1996c)

Voices of ambiguity, voices from the fringe As the journey continued, I became conscious that the stories I was hearing were voices that characterised ambivalence, ambiguity and multiplicity. They were also, because of this ambivalence and because no one seemed to understand, increasingly seen as ‘voices from the fringe’ of organisational life. One of the most prominent themes that emerged was the fractured nature of the lives of these people. Once respondents had digested the life-altering news of their illness and its potentialities, the realities of maintaining their lives, their careers and their feelings under these new circumstances emerged as a considerable challenge. There are numerous issues of concern that are addressed here: workplace relationships and social support; the choice of illness disclosure; discrimination; and the effects on work performance as a result of the disease process. The respondents shared stories of their lives on the fringe. For them, things were not what they appeared to be and the unreality tended to set them apart from their colleagues. People in organisations tend to rely on their visual senses to determine the ‘reality’ of what is going on around them, regardless of how naive, crude and foolish this may be. Where one is experiencing an illness that cannot be seen, expectations of ‘wellness’ are confirmed by appearances. The flawed belief, that if one looks well one must necessarily be well, is supported. Unfortunately, not only do non-sick people make wrong judgements about those who are ill, sick people suffer as a result. In many instances, respondents found themselves ‘separate’ from the rest – marginalised (Vickers 2000a: 4).

Workplace social support Whilst one may assume that the average workplace may potentially be a good source of social support for the individual (Turner 1987: 77), ‘victims of life crises sometimes have difficulty gaining the support they desire and need’ (Silver, Wortman and Crofton 1990: 397). This may be a function of the feelings of vulnerability and helplessness evoked in potential helpers, in addition to beliefs about what the appropriate reactions to display might be towards people experiencing life crises (ibid.: 398). It seems that not all social ties are supportive (Hobfoll and Stephens 1990: 454) and social support may have a mixed effect (ibid.: 461). Unfortunately, the literature is distressing in its indication that those who have the greatest need for social support are, frequently, the least likely to get it (Silver, Wortman and Crofton 1990: 398). Further, the supportiveness of social ties waxes and wanes as stressful events are confronted and take their toll on the resources of those involved (Hobfoll and Stephens 1990: 455). Social

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support may also be dependent upon the perceptions of others of that individual’s need for support (Sarason, Sarason and Pierce 1990: 18). Nowhere was this more evident than for Shelley, who looked so well and who was so dangerously ill. Her story demonstrated that she, who was so greatly in need of support, did not always get it from colleagues. She pointed out how the support she received tended to fade over time, stating specifically that, over time, her colleagues lost interest in her condition (Shelley Interview #1: 8). Most poignantly, she recalled: MV: Do you think they [colleagues] understand your condition? SHELLEY: Honestly, people haven’t actually sat down and asked

me what it is. I think if they were — . I think if they are aware that it’s something to do with the bone marrow, but people haven’t — MV: And they don’t know how it affects you? SHELLEY: No. I don’t think people have taken the time to ask me, ‘How does this affect you?’ or — MV: And what do you need? SHELLEY: When I was in the hospital they, the material needs were met and people showered me with cakes and all that sort of stuff. I didn’t get flowers this time. There was no emotional support. (Shelley Interview #1: 21) Despite Shelley’s physical appearance (and she looked very well), she was indicating to me here that she needed and wanted emotional support at work. As the stories continue, we will see that she also wanted physical support – and she didn’t get that either. Being a product of social relations, social support is likely to have costs and benefits associated with it (Hobfoll and Stephens 1990: 455). For Shelley, as the support was unthinkingly withdrawn, she no doubt felt more isolated and alone with her life-threatening condition. In a situation where the need is largely invisible and the context is a place that insists that we all be functional and capable, the potentiality for social support being inadequate is very high. The sections below depict some specific instances where social support in the workplace was not only lacking for the respondents, but brutally so. Relationship changes: a lost friendship First, Shelley’s story demonstrates her life, as it was sometimes experienced, on the social fringe at her workplace. The lack of social support in the workplace is not just about what happens at work, hence my use of this particular vignette. For Shelley (and, indeed, for many of us), work is also about belonging, about relationships, about friendships. Shelley described her relationship with her close friend being disrupted by her leukaemia. When an exacerbation sent Shelley back to hospital and made her condition widely known at her current workplace,

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her life in the face of death became a discomforting problem for some, even those apparently closest to Shelley. I asked her: What is the worst thing that has ever happened to you at work to do with this condition? SHELLEY: I think probably the loss of a friendship. That’s probably the worst … I have been good friends with this girl for probably two and a half years. And she has led a very sheltered life as well, so she’s never known death or illness, that sort of thing in the family. So I guess, and we were very close friends. We used to go everywhere together, and go away on weekends … we had the same sort of interests. And when I got sick it was — . I don’t know whether she couldn’t cope with it, or didn’t want to, or whether the easiest way is to have nothing to do with it. I’m not really sure, but that’s what did it … She speaks to me, you know, ‘Hello.’ But that’s it … I don’t think she’s ever had to deal with someone, and the fear of maybe a friend dying. I really, I’m not sure. (Shelley Interview #1: 6; Vickers 2000b: 131)2 MV:

In Shelley’s case, stigma surrounding her illness might have emanated from a number of sources: moral judgements made by her friend, from myths and beliefs about her disease, the ignorance of people with no experience of illness, or fear about the illness (Vickers 2000b). Fear associated with stigma may have been associated in her friend’s mind with the potential outcome of the disease, that is, Shelley’s possible death or disability, which Shelley referred to. Enacted in the workplace, this may have been associated with existential anxiety in dealing socially with the sick person. Many organisational normals find the existence of illness or disability in others confronting, with the presence of a sick person threatening their carefully constructed illusion of ‘personal invulnerability’ (Raphael 1986: 30). Finally, it was possible that Shelley’s former friend may not have known herself why she was unable to remain close (Vickers 2000b). What was clear was that this episode had hurt and perplexed Shelley enormously. By her own admission, this was the worst thing that had happened. Insensitivity To take another tack when looking at the question of social support, it was observed that many respondents initially stated that they had tremendous support from their colleagues. They frequently commented that the organisation had been ‘great’ and their colleagues had been very supportive. However, as I probed more deeply, there seemed to have been little in the way of clear support. Instead, I found evidence of significant – even brutal – insensitivity and callous disregard for people’s suffering. Stories echoed with the ‘human costs’ of the rising managerialism in organisations (Rees 1995a: 15; 1995b: 198) and the managerialist dogma of efficiency under the guise of economic or instrumental rationalism (Vickers 1999a: 60). Managerialist expectations permeate

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organisational life and were seen to have no small impact on the lives of those with unseen chronic illness. Perhaps the most pernicious example of this insensitivity, which was overflowing with managerialist rhetoric, was recalled by Linda. Linda described a meeting with her senior manager only days after her return from seven months’ sick leave as a result of her breast cancer. Rhetoric and euphemism are frequently used in organisations to enable members to do things that, outside of the organisation, would be regarded as reprehensible. However, the rhetoric allows them to believe that what they are doing is ethical, moral, even good (Stein 1998). This has also been described as administrative evil – evil done in organisations that has been socially packaged as being normal and appropriate behaviour (Adams and Balfour 1998: xxi). However, evil such as this, cloaked in ideological and normative assumptions, lurks in organisations everywhere (Vickers 2000f: 475). It is evil masked in righteousness. As I recount Linda’s story, bear in mind that Linda had, in the months leading up to this incident, received a terrifying diagnosis, undergone a complete mastectomy (removal) of one breast which was followed by a course of chemotherapy. After then finding a secondary tumour in her sternum (breast bone), Linda had also undergone a course of radiotherapy. As a result of all of this, Linda elected to have seven months’ sick leave in an effort to let her body heal. Four days after she returned from this leave, this is what happened: So my senior manager came and saw me and said, ‘I need a decision by this Friday where you want to move to. Your job no longer exists.’ … I said, I asked him, ‘Do you realise what I’ve got is a life-threatening disease?’ And he just looked at me and he said, ‘Yes, but I didn’t really factor that in when I was thinking of what to do with you.’ I was just totally blown away … I’d heard actually two days before this he had to cut about four people out of his budget. (Linda Interview #1: 9)

LINDA:

Clearly, Linda and her ‘troublesome’ illness made her a prime candidate for being made redundant. Unfortunately, Linda’s manager hadn’t ‘factored in’ the ordeal that she had been through when he dealt her another blow. He was, as the managerialist is encouraged to do, more concerned about the organisation, efficiency and budgets than the fact that Linda’s life was under threat, that her identity had been smashed and, now, that she no longer had a job. There was little demonstrable concern for her emotional and physical health. Linda’s life on the fringe must have been miserable that day. Her manager, presumably with incomplete illness knowledge, had made a completely inappropriate and insensitive response to her situation. Linda believed that she was capable of making a valuable contribution and yet no effort was made in determining how this might best be achieved. How might she have felt in the face of this callousness? Hurt, confused and unwanted – marginalised.

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Expectations of support Conflicting stories emerged, specifically about expected, actual and desired support in the workplace. First, people with invisible chronic illness did not seem to know what they should do, or what to expect from others. Given the vagaries of their illnesses, their lives and their workplaces, this was suggestive of a kaleidoscope of contextual influences that made it difficult for sick people to know what they wanted or expected of others.3 When I asked respondents what they expected other people to do, there seemed to be a mythical expectation or desire that humanitarian concern from their colleagues would be forthcoming. Sadly, the literature has indicated that organisationally based inhumanity was more likely, given the managerialist, economic rationalist, organisational ideology that currently dominates Western organisations (Rees 1995a: 15; 1995b: 197; Kouzmin, Leivesley and Korac-Kakabadse 1997: 21). It is an ideology driven by efficiency (Landau and Chisholm 1995: 67) and, as you are beginning to see, it can be a profoundly painful experience when responsibility is denied, and no apology is offered or regret expressed (Erikson 1994: 238). What seems worse is that, in many cases, we have come to expect a certain amount of callousness in modern organisations. The preponderance of efficiency, at any cost, has become a guiding truth – that’s business; it’s capitalism; it’s survival (Vickers 1997a: 240; 1999a). It seems that humanitarian concern predominates only if it makes good business sense. Having studied this, I was surprised when respondents indicated an almost universal (initial) portrayal of workplaces replete with support and understanding. However, as I delved deeper, the responses were found to be far more complex and the accuracy of those initial responses came into question.4 For example, Shelley specifically reported that she did not expect special treatment at work. She wanted to be treated ‘normally’, like everybody else. And yet, concurrently, she reported, with some bitterness, the identifiable lack of physical assistance from colleagues at a time when it would have been most appreciated and was certainly expected: Because we’ve moved rooms now, our craft room or our activity room, where all the larger toys are – big, huge Lego blocks. There’s heavy toys, cots, all sorts of things for the children to play with are down one end of the building. Now there’s three demountables to walk through with all this stuff. OK. Now, in between that, there’s doors and there’s baby gates to lift up and open. So, things have to be put down, opened, picked up, put down, turned around, you know, all this stuff. Now, I went through all three rooms numerous times with heavy things and not once did any staff member ask me if they could follow me through the building and open or help me with anything. So, nothing’s changed. (Shelley’s laughter – bitter) Yes. MV: And you don’t do anything as a result of that? (Shelley shakes her head) (Shelley Interview #2: 6) SHELLEY:

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There was a definite expectation on Shelley’s part that help should have been offered by her colleagues. Running parallel to this was evidence that she was not prepared to ask for help, even though she acknowledged needing it. Many of the cognitive behaviour therapists suggest that assertiveness skills (Maltz 1960; Ellis and Harper 1975), self-advocacy (Lindsay and Marler 1989: 33) and an internal locus of control (Shroeder and Miller 1992: 185) are helpful coping strategies, especially in overcoming feelings of powerlessness associated with altered health states (ibid.: 179). Others suggest that the problem may be getting others to listen (Lindsay and Marler 1989: 33). However, for some, there is evidence of considerable difficulty asking for help, perhaps reinforced by an individualistic Western culture. This would seem to be the most likely interpretation for Shelley’s reluctance, especially when combined with her insistence at other times for a desire to be normal and to be treated normally by her colleagues, friends and family. Shelley also described a vast discrepancy between reported and actual managerial support. Early in the first interview, she reported that her manager was very supportive. However, this same manager, according to Shelley, ‘flies off her handle’ if anybody asks to go home because they are sick (Shelley Interview #1: 8). Shelley also reported feeling ‘used’ by her manager to cover staff numbers at the childcare centre where she worked when this was required (Shelley Interview #1: 9). The confusion and ambivalence continues to be evident in this passage. She is describing her manager when she says: I think she does [support me] to a certain extent, but in another one, it’s like, ‘You’re here to work.’ I guess, you’re employed, so — (pause) I’m not sure how to put it. It’s like, you’ve got a job — MV: You get on with it. SHELLEY: Yes. So that’s what I feel. Whether it’s — . I’m not sure. I guess that’s how I feel. It comes across as even though she is supportive in some respects, if I was sick or got a bad blood result or something on the telephone, she would be there. If I was in tears, she’s there for me in that situation. But on the other hand, it’s like, ‘You’re here to work. Do it’ sort of thing. (Shelley Interview #1: 9–10) SHELLEY:

Maryanne also reported supportive behaviour from her manager. However, the actual support she received seemed inconsequential. Maryanne described a phone call with her manager. She was talking about a scheduled meeting with her manager that would have required Maryanne to drive about 30 kilometres (about 20 miles) to her manager’s office. On this occasion, Maryanne had been experiencing extreme pain and heavy menstrual bleeding as a result of having endometriosis. And so I just said to him, ‘Look Barry, I’m just having, really, I’ve got my periods today, a very difficult time, I’m feeling very unwell and look, I just really can’t make it up there.’

MARYANNE:

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MV: And what did he say to you? MARYANNE: He said, ‘Fine, I’ll come down there’ … MV: Right. Now how did you feel when he offered to come here? MARYANNE: Humbled. Humbled. MV: Humbled. You thought it was a really — . Is there any

other course of action that you would have preferred that he took? MARYANNE: No. I just felt blown away actually. MV: You thought that was really — MARYANNE: Great. MV: OK. That’s great. MARYANNE: Because, the other thing I could have done is not, the easy way out would have been to stay home sick, wouldn’t it? But I didn’t. MV: He didn’t suggest that you go home? MARYANNE: No. No. No. MV: And that was OK? MARYANNE: Yes. (Maryanne Interview #2: 3) My consternation at Maryanne’s response is evident in the transcript. I was having great difficulty understanding why she thought her manager’s response was positive when I could only view it as terribly insensitive. Maryanne had impressed upon me just how unwell she was feeling and how impossible it was for her to get in a car and drive any distance. Surely, if someone is feeling too sick to drive a car, they are too sick to stay in a meeting and concentrate? Perhaps Maryanne did feel good about the response from her manager. Perhaps she was endeavouring to appear consistent with earlier comments made about her very considerate boss. Perhaps she had not impressed upon him how sick she was. In the transcript, she simply referred to having problems with her period. Perhaps she is so unaccustomed to reasonable consideration that any token is greedily devoured. Finally, perhaps the answer lies in the last sentence, where Maryanne demonstrably felt that staying home sick would have been a ‘soft option’. Her own and perhaps her manager’s ideological assumption is that the ‘easy way’ would have been to give in, to take time off – even when you are sick. This seemed especially likely for ‘women’s problems’ (especially those associated with menstruation) that are infrequently discussed, and frequently trivialised. Others just don’t understand Another difficulty experienced by respondents in the workplace was the obvious (and potentially irritating) lack of understanding that colleagues exhibited. It is noted that even when a medical diagnosis exists, there is the frequent danger that assumptions of malingering (conscious or unconscious) on the part of the sick person will be made by others (Yelin 1986). This is especially likely when the illness cannot be seen. I reasoned that if respondents had their leg in plaster and couldn’t walk, others might have had more comprehension (and more sympathy)

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than they did for those who looked perfectly well. For example, Linda reported the total incomprehension of a colleague about her need to take time off to recover from cancer: MV: You mentioned … that other LINDA: I just feel that like — . I

people judge you … Can you explain that? felt when I had the seven months off people were thinking, and I know they were thinking, I just know in my own mind that they were thinking, ‘Why does she need seven months off ? She’s having a holiday.’ I mean even a couple of people said …, ‘Oh where have you been for seven months?’ and you say, ‘Oh, I’ve been really sick, you know.’ And you go into it and they say, ‘What did you have?’ and I say, ‘Cancer.’ They say, ‘Oh. Do you need seven months off for that?’ and ‘You must have had a good holiday then.’ And you think, ‘Bloody hell! It’s not a holiday. I’m trying to get over it.’ (Linda Interview #1: 7–8)

The naive (even cruel) juxtaposition by Linda’s colleague of a holiday (with the attendant images of pleasant hours whiled away in the pursuit of whatever one pleases) against what Linda had actually lived through, presented a particularly evocative contrast. It was a contrast that angered and frustrated Linda. Expectations from others were also reported to be troublesome for many participants. For June (with significant visual difficulties), her colleagues’ expectations sometimes comprised a major hurdle. She reported that looking ‘normal’ added to self-imposed normalising and social presentation pressures. I asked her: What do you think is the biggest problem for people with invisible conditions? JUNE: Probably expectations that people put on you and you’ve got to explain. People expect you to be able to – because you look normal – people expect you to be able to do things the same as what they can do. It’s sort of, ‘I can’t be bothered to explain’ and I don’t think they understand anyway and I don’t expect them to understand it. So it’s that trying to say, ‘Well, I can’t drive at night. I don’t see so well. I really can’t attend that function …’ (June Interview #1: 17) MV:

I was also interested (and appreciative of ) June’s comment that she couldn’t be bothered to explain. June looked perfectly able-bodied. She drove a car. Sometimes she wore glasses, sometimes she didn’t. To the casual observer, the assumption would have been that she could participate in out-of-hours work gatherings. There would be little thought to the difficulties she would experience driving a car at night. However, I also imagined that she did not enjoy bringing additional focus to her visual difficulties, especially in the workplace. Finally, it was a relief to find that support and consideration was sometimes evident in the stories. Certainly, it wasn’t as routinely found as one would have hoped. However, Linda described a particularly supportive supervisor, who

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helped arrange for her to have time off and generally demonstrated a great deal of welcome consideration. Linda, who reported such a pernicious and ugly incident from another colleague, also had this to say: My supervisor then was a lady of my age. She was my age, my project leader, and she probably understood a lot more than my current project leader, who is a man in his forties or whatever. So —. But she was my project leader when I was diagnosed both times, so that made it —. She made it really comfortable for me, and she was always concerned and always, you know, telling me, ‘Go home. Take time off. Don’t rush around. Do this.’ And that sort of thing. (Linda Interview #1: 14)

LINDA:

Illness disclosure at work One of the reflections of the marginalised nature of those who have invisible illness is the challenging question of illness disclosure, especially in employment (Vickers 1997d: 240). Self-disclosure of illness or any other potentially stigmatising trait (Jourard 1971: 6; Philip 1993: 14) is a major and complex decision for people with illness that cannot be seen, especially in the workplace (Vickers 1997d: 242). The difficulty of the choices that need to be made regarding information to be shared about any stigmatising trait can be encapsulated neatly. It is the question of whether: to display or not to display; to tell or not to tell; to let on or not to let on; to lie or not to lie; and, in each case, to whom, how, when and where. (Goffman 1963: 57) The sick person’s response may be mediated by their perceptions of themselves, their body images, and how they feel significant others and society view them and their illness (Mead 1955; Lambert and Lambert 1979: 2). They may also be affected by current circumstances. Theoretically, people with invisible chronic illness have the choice of ‘information control’ (Goffman 1963: 113; 1969: 123), or of playing ‘the information game’ (Goffman 1969: 7) that is not available to those with visible disabilities. These can become important tools in impression management (ibid.: 208) and relate to the need for people with stigmatising conditions or traits to hide aspects of themselves, to control their ‘social being’ and to idealise their social performances. This is very likely, especially in the workplace, to maximise the value that the organisation attaches to their contributions and to minimise any negative information about themselves – especially important in the careerist environment.5 So, whilst it appeared that, theoretically, respondents had a clear-cut choice about how to present socially when and where they chose to disclose their illness, and who they might have chosen to tell about it, this was not always what happened. All of the respondents must have disclosed their illness to someone,

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sometime or they would not have been included in this research process. However, what became manifest during the analysis was that instances of employment disclosure had often been forced on participants, whether they were conscious of this or not. So, while I initially considered that I was talking to individuals who were predisposed to knowingly disclosing their illness, closer consideration revealed that this was not entirely accurate. Many respondents had worked for their current employer during the period of their initial symptoms and subsequent journey through to diagnosis, or during a relapse, making disclosure unavoidable. For example, Fred, Rodney, June, Daphne, Linda, Beverley and Shelley were all working for their current employer at the time of their diagnosis, or during an exacerbation of illness. For them, there had to have been repeated and/or lengthy stays away from their workplaces as a result. Fred illustrated the impossibility of hiding his diagnosis of lung cancer from colleagues: Yes, because they [colleagues] used to see me walking around like this (Fred indicates his arm being up against his chest, supported by the other arm) and doing this, and all sorts of things, and walking around, and they knew. They used to always say to me, ‘What was wrong?’ And then once I started going through all this treatment, going to physio and all these things, everyone was aware of all that. And when I went and had the CAT scan done, and all that type of thing, and then when I actually got the d–, when they actually said to me, naturally the word spread around. Everyone well, you know, you tell one person and they tell everybody, you know. (Fred Interview #1: 17–18)

FRED:

Few with stigmatising conditions will willingly disclose their existence (Jourard 1971). However, even though their condition was largely invisible, the behaviour it evoked, certainly during the period of searching for a diagnosis, was not. For example, respondents would not have been able to hide numerous visits to medical practitioners nor would they have considered it necessary. Because respondents wouldn’t have known, prior to diagnosis, that their illness might have been stigmatising, they wouldn’t have known that, when they did find out, it might have caused them subsequent problems. They would also have been unlikely to have had experience living with a stigmatising condition. Thus, this period, prior to diagnosis and, more importantly, prior to having experience with a stigmatising condition, is a period of great vulnerability. The sick person is likely to be naive to what life is like with a stigmatising illness. They are likely to not have any understanding of how those around them might respond – good or bad. This temporal dimension, which is in keeping with Heidegger’s view that time is the critical standpoint and crucial to our understanding of being (Mackie 1985: 75), arguably influences subsequent disclosure and its timing. Respondents who received a diagnosis of a potentially life-threatening, chronic or disabling illness over the phone, or during an office hours’ visit to the doctor, were unlikely to sit quietly and think through the possible ramifications of their preferred disclosure policy, especially if the news was received via a phone call at work (Vickers

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1997d: 245). Indeed, the events leading up to the diagnosis are frequently protracted and public, making a subsequent non-disclosure policy all but impossible. Linda’s experience was also illustrative. I actually probably only told a few people to start with. And I actually didn’t tell a lot of them. It is just the word got around. But also, every time I got diagnosed, I got the phone call at work. So I was just devastated, and shattered, and I was in tears and people wanted to know and, you know. Like, I know it is none of their business, but they were worried and, you know, a lot of them are nice people and they are genuinely concerned when you’re upset and —. But it’s until you’ve had your treatment, you look okay and you, you know, you’re not upset that they think, ‘Oh, She’s fine now.’ MV: How did you feel about word getting around without you actually telling them? LINDA: It doesn’t, it didn’t, it doesn’t worry me so much the second time around. The first time around, you know, I thought, ‘Oh gosh. How embarrassing. Everybody knows I had my breast removed.’ Like, yes, the first time I wasn’t so comfortable with it, but the second time it didn’t worry me at all. I’d been through so much. I’d learned so much in between times that, ‘water off a duck’s back’. So, but yes, the first time around, I just felt like a little girl again. Like, you know, I just felt like ‘Oh, I want my mum.’ You know, ‘This isn’t happening to me.’ Or, ‘Why is this happening to me?’ and, you know, not somebody else. (Linda Interview #1: 11) LINDA:

In addition to the emotional upheaval associated with diagnosis, those who had not lived through the response of others, as well as their own responses, might well be regarded as being ‘disclosure ignorant’. Until they had lived for a while with the stigma, the possible embarrassment and the likely marginalisation associated with stigmatising illness, they may have been naive to its consequences. Time with a stigmatising illness may be a great educator. The decision not to disclose and the associated ‘pain of silence’ (Vickers 1997d: 247) might well become, for some, worse than the illness itself. It also presents itself as another flag of a marginalised workplace life. Ambivalence surrounding ‘negative self-disclosure’ (that is, disclosure of negative information about the self ) (Crispin 1993: 302) may be for various reasons. For example, realistic concerns about discrimination may exist (Philip 1993: 14–15; Vickers 1997d: 247). Sick people may feel shame (Lazare 1992: 227), they may have a lowered self-image (Vickers 1997d: 247) or feel humiliated (as Linda did initially) as a result of their condition (Lazare 1992: 227). They may feel stigmatised by their condition generally and wish to hide it (Vickers 1997d: 246; 2000b) or they may not feel sufficiently courageous to share such personal and negatively perceived information about themselves (Crispin 1993: 299). Further, the time or circumstance may not be right (Philip 1993: 4), they may not trust the other person sufficiently (Crispin 1993: 300), the bearer may prefer to diminish the importance of the condition in their life (Rosner and Ross 1992:

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149) or, they may prefer to remain in their ‘private place’, especially at work. Ambivalence about disclosure arose in many of the respondents’ stories, where seemingly plausible reasons for non-disclosure were sometimes contradicted. For example, Shelley reported at first: I don’t tell anybody because I guess they don’t have a need to know. I feel they don’t need to; it doesn’t make me any different a person, and I’ve found that, in a lot of ways, people tend to treat you differently if they know. (Shelley Interview #1: 3)

SHELLEY:

And, yet, shortly after this comment, she admitted: I guess in a way they had a right to know if one of their staff, I mean we all work as a team, so in that respect maybe — . It’s probably better that they did know so that when I came back [from hospital and sick leave] they were aware, to sort of help me with things that I couldn’t do. The lifting and stuff like that. (Shelley Interview #1: 4)

SHELLEY:

What does this kind of contradiction mean? The complete answer continues to elude me. The question of disclosure is so complex and difficult. Certainly, it is expected that sick people will disclose such information, regardless of the potential detriment it may have. However, the decision is not an easy one and it is suggested that contradictions such as these are external manifestations of an unconscious wrestling and restlessness within. It was also evidence of the construction of the story as it was being told (Gabriel 1991: 857–8), where narratives were being used to reconstruct reflexively the chronically ill person’s sense of self (Young 1989: 154). In this case, the telling of the ‘life-story’ may have involved addressing experiential truths or challenges (Burgess-Limerick 1995: 23), confronting issues never before consciously dealt with. Jourard (1971: 65) argued that one of the most powerful determinants of (voluntary) self-disclosure is the relationship between the two people. Crispin (1993: 300) confirmed the need for trust, intimacy and reciprocity in authentic relationships for deeply intimate information – such as the existence of a potentially disabling or life-threatening illness – to be revealed. Trust is viewed as a necessary prerequisite for successful adult relationships: ‘a precondition of partnership and responsible participation’ (Bateson 1989: 18). Unfortunately, it seems unlikely that sufficient trust routinely exists in most workplaces, certainly not enough to encourage a voluntary workplace disclosure of a stigmatising invisible illness.

Discrimination Another reason that might encourage people with stigmatising illness to withhold information about it, is that they may have very reasonable concerns about being

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discriminated against (Vickers 1997d). Over the course of the interviews, it became apparent that most respondents had already disclosed their illness to their current employer, although the decision (as explained above) seemed to be mostly out of their hands. Thus, I asked respondents about the likelihood of disclosing their illness to a future employer. All respondents seemed uncertain as to their decision of disclosure to their next prospective employer. Beverley, perhaps more than anyone, uncloaked the truth after a lengthy, rational and (almost) plausible explanation: MV: Do you ever think you’ve been discriminated against because of the MS? BEVERLEY: No. MV: Do you think it ever might happen in the future? BEVERLEY: (pause) I suppose it could, but I mean, I guess I know that I do my

job really well … But I also think that if, you know, I went for any SES jobs, you know, the higher executive jobs and things, or if I wanted to sort of take my path up through that then I’d have to be fairly honest and say, ‘Look I have got MS and this’, because it does place limitations on you and, whether you like it or not, you know, I think you have to be honest about that. So people do have an opportunity to think ‘Well, OK. If she’s got MS, I don’t want her’, and as I said, theoretically in the public service they shouldn’t be able to do that, but I think that they’d have to. I mean, if I was honest with them and told them that there were limitations, then they’d have to take that into account. And I mean I think that’s realistic. I don’t know that that’s being necessarily discriminating. I think it’s probably realism, apart from discrimination. MV: And, and if you told them, you were honest with them and, and then you really thought that it had influenced their choice, a choice against you, how would you feel about that? BEVERLEY: Oh, (pause, indicating discomfort) it would depend on whether I thought that I could do the job myself and then I’d be pretty pissed off. But I mean if it was a job I really wanted and I thought I could do it, I mightn’t tell them anyway (peels of laughter from both! ). MV: The truth comes out! I love it (MV’s laughter). BEVERLEY: Not before I’d signed on the dotted line anyway. (Beverley Interview #2: 15–16) The perception of reduced functionality in sick people, especially by colleagues, is underpinned by the essentially capitalistic, individualistic, functionalist, instrumentally rational imperatives valued in organisational life. Rodney’s careerist comments confirm: MV:

You made a comment in our last meeting and I quote, ‘Generally speaking, I don’t think most people like to admit that they’ve got a problem, or they can’t cope with things, particularly in this sort of environment in here.’ What is the environment like in here?

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I guess what I meant by that was —, not necessarily yuppies, but people who would consider themselves as upwardly mobile, who want to get on … Generally speaking, the people in this department are degreequalified and have a postgraduate qualification, professional, masters or whatever, and want to get on, so don’t want to exhibit signs of weakness. MV: So, tell me why you think exactly, why wouldn’t people want to admit that they’ve got a problem? Why wouldn’t they want to show weakness? RODNEY: Oh, because that would, they would be concerned that it would restrict their progress up the corporate ladder. (Rodney Interview #2: 6–7) RODNEY:

Evidence of enacted stigma or discrimination (Scambler 1984; Susman 1994) towards respondents in the past was also reported in the interviews. For those who had not directly been subjected to discrimination, respondents still often indicated consciously, or unconsciously, their fears in this area. Discrimination was frequently blatant and callous. For example, we know that Linda’s boss told her to find herself another job – fast (Linda Interview #1: 9). Maryanne also described her dismissal by her previous employer as a result of having endometriosis and interstitial cystitis. Her employers sent her along for a medical consultation and this is what happened just afterwards: MV: So they asked you to leave? MARYANNE: Yes. MV: Who asked you, your manager or the doctor? MARYANNE: The manager, after medical consult.

Nowadays, nowadays I’m not naive and nowadays I would take them to court on unfair dismissal. MV: And what, did they give any reason or, what, what did they say? MARYANNE: The letter was just so simple it was ridiculous. I saw it coming. Actually I should have dug it out. I found it the other day when I was going through some stuff. It was like two lines. I just didn’t cry at that stage or anything. (Maryanne Interview #1: 8) Unsurprisingly, Maryanne subsequently took great pains not to disclose her illnesses at her workplace, except to a very trusted assistant. Certainly, her manager was not aware of the extent of her problems and the pain she experienced on an ongoing basis whilst trying to do her job.

Work performance Another reason underpinning the sense of ‘otherness’ felt by people with invisible chronic illness may stem from issues surrounding their work performance. I was concerned about the direct effects of illness on respondents’ ability to do their work. Most respondents confessed to having some problems in this area. While these problems did not appear to prevent them from doing ‘a good job’,

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certain aspects of the job were clearly more difficult as a result of their illness. In addition to the problems that may have been caused by disease, many respondents also attempted to hide the difficulties they encountered from others, so that they appeared not to be affected. This would undoubtedly have added to the difficulties they were experiencing. Not only, for example, were these people feeling pain, they had the additional burden of trying to look as if they were not in pain and were functioning normally. There were numerous examples of the invisible illnesses making the job more difficult. For example, Rodney reported problems with sitting in the office for long periods and with lifting anything substantial such as heavy printouts (Rodney Interview #1: 5). Fred, who was required to do a lot of driving as a sales executive, acknowledged periods when driving the car was extremely painful because of his slipped disc. He also acknowledged difficulties doing paperwork when his arm was out of action as a result of his lung cancer and subsequent radiotherapy (Fred Interview #1: 26). Daphne outlined her feelings of inadequacy when she was required to work at client sites. She particularly mentioned the difficulties she had experienced while walking and carrying a tray of cups of coffee. Getting the coffee was part of the morning social tradition (Daphne Interview #1: 2) – and not one that she could easily participate in because of her balance and coordination difficulties as a result of having MS. Shirley spoke of the extreme pain she sometimes experienced from endometriosis while having to walk around the office, bend down, and get in and out of her chair (Shirley Interview #1: 5). Finally, Beverley admitted feeling ‘fuzzy’, not coping and not doing her job as well as usual during an MS exacerbation (Beverley Interview #1: 2–3 and 11–12). While all these types of problems emerged as the interviews progressed, when asked directly, respondents were often inclined, initially, to deny that their illness affected their work. They seemed especially keen to not admit to weakness or any loss of functionality, perhaps encouraged by a widespread protestant work ethic. Initial reports that indicated very little problem, gave way to significant troubles and, importantly, ambivalence and contradictions in the stories. These inconsistencies were regarded as being symptomatic of an acutely troublesome daily negotiation of the work-world. For example, on the one hand, Daphne explained that she did not think that having MS affected her work, that she still did her job (Daphne Interview #1: 4). However, when discussing travel to client sites, she told me that she preferred not to drive, suggesting that other staff members needed to be available to drive the company cars as she was not comfortable doing that (Daphne Interview #1: 6). In addition to this, Daphne reported her inability to type now with her left hand (Daphne Interview #1: 9), ongoing problems with her vision and, especially, problems with fatigue. When explaining what it is like to have MS and go to work she confessed: I think probably it’s mostly frustrating because I can’t do as much as I used to in that I get tired more easily … I tend to be careful not to go out. Like before, I would go out at lunch for an hour, even a long walk, or to the

DAPHNE:

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Similarly, Shelley reported that her acute lymphoblastic leukaemia did not really affect her at work. Concurrently, she described her compromised immune system (Shelley Interview #1: 2), a great deal of trouble lifting, the iatrogenic result of numerous lumbar punctures she had endured (Shelley Interview #1: 2), the need to go home if she had headaches to avoid them escalating into migraines (Shelley Interview #1: 8), and a day off every three months (Shelley Interview #1: 18) for medical treatment. June who, similarly, reported that her glaucoma had not affected her at work yet (June Interview #1: 14), also described taking three months off work, laser treatment in both eyes, a major operation on one eye, as well as difficulty reading, writing up reports and driving to work. Additionally, she reported the need to ask people to read things for her at the office (June Interview #2). Finally, Shirley (#2: 5) vehemently denied that the pain associated with endometriosis had stopped her from working: If it stopped me from doing my job, I would do something about it. But it does not stop me. It just makes me feel discomfort, and you just, and I’ve been feeling discomfort all my life. You just put up with it. I just take Panadol. (Shirley Interview #2: 5)

SHIRLEY:

Shirley had previously described serious vomiting, extreme pain, not being able to stand (Shirley Interview #1: 2), being white in the face, numerous hospitalisations for curettes, and ‘really, really heavy bleeding’ (Shirley Interview #1: 1) during menstruation as a result of her endometriosis. I am not suggesting that any of the respondents were in any way deficient in carrying out their work. What I am suggesting is that it was harder for them to do what is normally expected. They did their work and made sense of their predicament in the best way they could. One way they may have done this was via normalisation. Wanting to be ‘normal’ certainly permeated these stories. Respondents did not put together all of the problems that they faced, possibly allowing them to ‘manage’ the ambivalence and the difficulties they routinely encountered. They tended, instead, to speak of isolated incidents and difficulties. Respondents also frequently reported that they wanted to be treated normally by colleagues and, importantly, wanted to be seen as competent contributors. They wanted to fit in. For example, Shelley (Interview #1: 5); Linda (Interview #2: 13); Beverley (Interview #2: 21); and Fred (Interview #2: 16) talked about just wanting to be a ‘normal’ person, not ‘different’. They desired ‘normal’ treatment. Linda, in particular, described her desire to return to a normal life after her ordeal with breast cancer – a normal life which, for her and others, included work. Linda regarded her return to work as being an indicator, a ‘milestone’, in her return to a normal life:

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I’ve been back at work since the second of January and, like, that was really, you know, a big milestone to get over, because having all that time off and just thinking well, you know, ‘What’s going to happen now?’ sort of thing. It’s always, you know, every day you wake up and live cancer basically. Every day, you think, ‘Oh dear. Oh, what’s today going to be?’ Yes, so — … I had the chemo [chemotherapy] and then went back to work and, you know, life goes on. The whole world doesn’t stop for you … And like that’s what my husband also said was really hard, because I was coping so well that he didn’t even think that it had happened to me really. So, sort of, he used to always say, ‘Oh, you’ve been coping so well up until now. Why, suddenly [have you become upset?] I said, ‘It’s one of those things. It’s, you know, it’s a really emotional thing.’ MV: What does ‘coping so well’ mean to your husband? LINDA: Being normal. Being normal. Like, just everyday things. Like going to work and cooking the dinner and doing the housework and, you know, not moping around and lying on the bed and sleeping and going to hospitals and, you know, that’s not a normal life. Like a normal life is just everyday life, sort of thing. (Linda Interview #1: 4) LINDA:

I would argue that an excruciating desire to be ‘normal’ and to return to a normal life overshadows the reality of illness limitations in the chronically ill person’s life. This, in turn, may make expectations of normality (for some of the time, at least) unrealistic and, sometimes, even impossible. Being ‘normal’ is not always easy or possible for sick people. Sadly, because respondents looked so well, others rarely understood these tensions. Later in the same interview, Linda shared the constraints that she faced, necessitating her having seven months off work: I mean, I needed a slower pace of life and that’s what I’m finding really. The hardest thing about being back at work now is the faster pace of life. Getting up in the morning, it’s the routine. You get up, you do this, you do that, you’re running around, paying the bills, doing your shopping. I mean it’s hard enough for a normal person, like without a condition, to have to, you know, cope with all that sort of stuff. Let alone for somebody that’s got a condition. So, yes. I just, you know, you sort of say, ‘Oh well, you know, I needed a slower pace of life and I needed to prioritise my life.’ And they think, ‘What’s she on?’ (Linda Interview #1: 8)

LINDA:

Rodney indicated some level of discomfort at possibly not being able to do what is normally expected of what, by outward appearances, constituted a young, healthy male. I asked him about how he would feel about requests for physical (lifting) help from female colleagues:

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So if you had to explain [about not being able to help someone lift something] how would you feel about explaining it to someone? RODNEY: I’d probably feel a little bit embarrassed up front. But nothing — MV: And why would you feel embarrassed? RODNEY: I guess it’s an admission that you can’t do something that prima facie you would expect someone of my age to be able to do. (Rodney Interview #2: 2) MV:

I am not suggesting here that Rodney would have been traumatised if he had been placed in a position of having to decline to give physical assistance to a female colleague. However, this is just another example of the continuing and troublesome negotiations that respondents were faced with, often on a daily basis. Living and working with an unseen chronic illness presented a frame of reference that those without chronic illness (and whom had never experienced it), necessarily, could not share. The ambivalence surrounds, not just the disease, but beliefs about what the bearer should or should not do, or be able to do, and what others might think about that. The uncertainty and unknowability of living with a chronic, potentially disabling or life-threatening condition was also reflected in many of the stories. For example, Fred (Interview #1: 36) described still going to bed at night and thinking about what might happen in his future with cancer. A poignant comment came from Beverley about her future with MS: ‘It’s really scary isn’t it?’ (Beverley Interview #2: 9), whilst simultaneously feeling that the MS had helped her self-confidence (Beverley Interview #2: 14) and helped her to prioritise (Beverley Interview #1: 17). She even told me that she is admired by others for qualities that she does not believe she has (Beverley Interview #1: 19). Certainly, the future disease progress was of considerable concern to many respondents. This is a worry that would not be readily understood by colleagues. Shelley described to me the uncontrolled and unpredictable course of her illness, how the doctors did not know what to do next. She explained this to me, in quite a discursive response which, in its own way, portrayed her feelings about the uncertainty and the unknowability of her future: Theoretically … my doctor went for a cure first time around with the chemotherapy and it didn’t work. It lasted eighteen months. That was off chemotherapy. So, I had two years of chemo, and then I had eighteen months in remission, which was really good going. That was when I was first diagnosed. Then I relapsed. They got me back into remission with more chemo and I went two and a half years. In theory, I should have gone shorter than the last one, but after coming off treatment I went eighteen months. The second time I went two and a half years, which should have been shorter than the eighteen months. Don’t ask me why. I don’t know. (Shelley Interview #1: 10–11)

SHELLEY:

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The problem of getting to work also emerged in the respondent’s stories. If respondents could not get to work, this would present a significant threat to their future livelihood. For example, further visual deterioration would have precluded June from driving to work. Daphne had already reached a point where travelling on the trains during peak hour was too difficult (Daphne Interview #1: 10), necessitating her husband driving her to work each day. Beverley also contemplated future problems driving as a result of having MS, as well as current difficulties standing and hanging on during peak-hour bus travel (Beverley Interview #2: 5–6). She confirmed, apropos her bus travel, that problems were exacerbated because other bus travellers could not see what was wrong. She commented about using the disabled seat on the bus and the problem that someone like her (who did not look disabled) would have in using it, or being afforded any assistance or consideration by fellow travellers: Yes, but I think that’s the most awkward, particularly seeing that you don’t necessarily look disabled. I mean I’ve often thought, ‘Maybe I should just buy a walking stick, so that at times when I’m feeling really bad, I can kind of walk along with the walking stick (laughter) so I look disabled.’ (Beverley Interview #2: 7)

BEVERLEY:

The problems Beverley is describing here are attached to commonly held beliefs about what constitutes a ‘disability’. Usually, notions of disability, even in many of the respondents, were closely aligned with the common symbols of disability, which generally depict a figure seated in a wheelchair. Thus, many of the respondents, even though they were describing varying levels of physical disability in themselves, didn’t see themselves as being disabled. Certainly, those in the wider community and in their workplaces didn’t either. For example, Shelley’s comments about disability reflect these views – that her problems with leukaemia do not constitute a ‘disability’: Does your organisation have any policy about illness or disability for employees that you’re aware of ? SHELLEY: Not that I know of. No. I think it would be very hard to work in a childcare setting with a disability. I really do. No. (I wonder to myself, what does she think she has?) Because there is so much lifting and bending, sitting down on the floor, getting up, running around with the children. It would be very hard with a physical disability to work in a situation like that. I think I would probably, if I was to do my back or something like that, I’d probably have to find another job in that sphere. (Shelley Interview #2: 13) MV:

However, attitudes can and do change when people are encouraged to see things differently. I particularly recall interviews with Rodney, whose attitudes about what might have constituted a disability clearly shifted over the course of the two

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interviews. Presumably, this came as he reflected on the interview content and topic area. Early in the interview process, I asked him: MV: You don’t consider yourself disabled in RODNEY: Hell no! (A strong reaction, almost

any way? an over-reaction to the question. Rodney seemed a little offended or annoyed by the question) (Rodney Interview #1: 7–8)

Yet, in the second interview, when asked about disabilities that could not be seen and a possible example, Rodney responded: Mine. (laughter) Well, walking around the office, no one would know I had a back problem. (Rodney Interview #2: 5)

RODNEY:

Conclusion Life and work with invisible chronic illness is not easy, for a number of reasons. First, colleagues do not understand what is going on for the sick person and may not, with the best will in the world, be able to respond appropriately to assist them. On the other hand, we have also seen that there are many people in organisations who make little effort to consider people who are sick. They can be insensitive, cruel and thoughtless, making a sick person’s working life even more trying. Second, respondents with chronic illness, while wanting to maintain a normal life, were often not in a position to live and work in the same manner as colleagues without a chronic condition. Respondents reported varying problems in doing their jobs. I highlight this, not to send a message that sick people are less able to achieve work objectives, just that doing so might be more difficult than for the non-sick individual. Indeed, those with chronic conditions may be far more adept in the areas of planning and contemplating their requirements in order to get the job done than those without. Difficulties surrounding work tended to be reported in terms of things not routinely considered. Respondents, universally, did not report difficulties meeting deadlines or getting the job done. They talked, for example, of getting more tired or of being in pain (making the meeting of deadlines harder), and of having trouble getting to work (and feared problems getting there in the future). Outstandingly, their problems stemmed from the various social negotiations at work, mostly, because colleagues simply didn’t understand the gravity of their situation or the difficulties that they routinely faced. These are troubles that have remained silent in organisations. They have not been routinely considered or talked about, but they could be and should be.

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Careerist concerns

I have the courage to write again. A lot has happened since the last note. I did recover most of the feeling in both my feet and right hand after the prednisone treatment. It took about a month or so. Unfortunately, my respite was short-lived. For about the past four weeks my entire right side is completely without feeling from my chest down and I have been having difficulty emptying my bladder. This is not good: two successive attacks in just months. The ‘pulse’ of prednisone is not available again so soon after the last one (because of the high level of toxicity). The neurologist says, ‘No more than twice a year’. Perfect. I am terrified that I am sliding into the progressive form of MS where the inexorable downhill shift will become swifter, more far-reaching and without reprieve. I am fearful, so fearful in fact, that I have reached the point of being reluctantly prepared to try the new drug, Betaferon. I have been incorporated, initially, into a trial program prior to it becoming publicly available. Ambivalence reigns. On the one hand, I am heartened; there have been some positive reports of this drug lessening the severity and number of attacks for people with MS. However, Betaferon is still essentially an experimental drug. With all that I have read about iatrogenic illness, I go into this with my eyes wide open. I know that the dosage is likely to be hit-and-miss at this early stage, and the reported side effects don’t particularly thrill me either: depression, even suicide, have been recorded (a definite concern given my recent mental health), aggression, ‘flu-like complex’ (aches, fever, general malaise) and skin reaction at the injection site. Oh yes – it is an injection. I am officially, starting this evening, becoming an injecting drug user. Every two days I somehow have to summon the courage to voluntarily plunge a needle into my thigh or belly. I hear from another that it isn’t much fun. One of my respondents has been involved in an earlier trial and has been injecting herself in this fashion for the past couple of years. I rang her last week to get some moral support. It was a positive, I guess, that from my own research project I have been able to draw some solace and support. She didn’t have any symptoms from the drug (although she doesn’t know if she’s taking the placebo or not) except ‘bruising’ at the injection site.1 She explained how one ‘bruise’ never actually went and she is continuously sporting half a dozen marks from previous injections that take a while to subside. Just what I need at the moment: another threat to my already battered self-image. She also tells me that she hates injecting herself and that it hurts. Great. I don’t need to have the flu every second day, become even more depressed, look bruised and battered, and take more medication (paracetamol for the flu-like symptoms or anti-depressants to ward off suicide) to combat the effects of the first! However, I will give it a go. What choice do I have? I think three months will be my limit if I react badly. I am not prepared to forego a

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complete reversal in quality of life to take a drug that may help, but will not reverse any damage already done or, necessarily, prevent future problems. The difficulty here, of course, is not just that I have MS: nothing in our lives is getting better. There is nothing to look forward to. Michael is getting worse: slowly, almost imperceptibly, but definitely worse. It is no fun to watch your soul mate deteriorate. He is not responding to his drug therapy (although the prednisone also makes him aggressive – what a happy household we’ve become) and a recent review of the literature on neuro-sarcoidosis painted a rather ugly picture. No one has been reported to have improved markedly, let alone recovered completely. In one study, half died directly after the brain biopsy, whilst others died later. Apparently, the best we can hope for is no further decline. Life could be better: Michael is deteriorating; the insurance company won’t pay; we don’t have any money; and my own health has deteriorated to the point of becoming a ‘junkie’. I guess when you think things can’t get any worse, you should prepare yourself for the reality that indeed they can. But I can’t think about that now. What I will do is have another glass of red wine – ‘dutch-courage’ for that first injection. Then it’s on with the training video and start injecting. (Vickers 1996d)

Grief and loss The story continues with themes of personal grief. Once again I found that when illness was not visible and not immediately life-threatening or disabling, it was frequently trivialised by others. However, as we will see, the impact on respondents’ lives was material, reaching into areas of their personal and professional existence that were inevitably intertwined and, frequently, overlooked. The issues described here gain significance because of the invisibility of the conditions, because others tended not to understand and, sometimes, not to care. Respondents demonstrated the chronic nature of the grief and loss they had experienced and the invisible nature of much of their trauma. Grief may be silent, but it is very real. Chronic illness has been reported elsewhere as a source of ongoing grief and loss for the bearer (Bowlby 1980: 100). It resembles the grief associated with death and dying (Register 1987: 21), except that illness persists (ibid.: 24). One of the major reasons for this grief reaction is the number and variety of personal, contextual and physical aspects of one’s life that may be affected. For example, chronic illness may result in losses of physical function, energy, sense of control, independence, resilience, patience, innocence, security, competence, visibility, privacy, body-image, self-image, faith, expectations for the future, social contact, shared responsibilities, financial power, self-esteem, affection, autonomy, optimism, ability to protect, sexual communication, freedom, and equality (Wheeler and Dace-Lombard 1989: 62). Chronic illness may also result in the need to embrace numerous role changes (ibid.: 63).2 As well as having to endure all of these potential losses, respondents frequently had to deal with them alone – or, at least, this is how it would have seemed to them. They also had to deal with them whilst going to work. Unfortunately, the issues associated with ‘chronic

Careerist concerns 95 mourning’ (Bowlby 1980: 138) may be poorly understood by the sick person (Schneider 1984: 25), let alone others. It is another silent aspect of their lives with illness. The theme of loss resonated strongly in the stories recorded. It has been argued that grieving and coping responses can vary tremendously, depending on demographic characteristics.3 In the discussion that follows, I will endeavour to share a number of exemplars of loss that were shared with me. I am not suggesting that there are not many more areas of loss experienced by people with unseen illness. However, these were the ones reported to me. Physical loss One of the major areas of loss associated with a chronic condition is the area of physical loss. One’s body often becomes unreliable and individuals affected feel that their body can no longer be taken on trust (Pinder 1995: 610). Bodily life becomes plagued with uncertainties (Johnson 1991: 14) and physical limitations may require a constant juggling of energy, events and resources to maintain any semblance of normality in that person’s life. Even the physical appearance of those with unseen illness may be altered as a result of disease activity or medical regime (Vickers 2000b), although this still may not render the condition ‘visible’ to others.4 Further, loss of physical abilities, including invisible ones, may be keenly felt by sick individuals.5 Every loss, large or small, can provoke a reassessment of (actual or potential) future problems, and may be exacerbated when others seem blithely unaware or simply cannot understand the loss experienced or what that loss implies. All respondents indicated some form of physical loss that others either were not aware of or did not properly understand. For example, Linda had lost a breast. June had lost a substantial part of her vision in both eyes and anticipated much greater visual impairment in the future. Rosalie never felt healthy any more. Fred had lost the use of his right arm for a lengthy period. Rodney had lost a painless, trustworthy back. Rosalie, Beverley and Daphne reported substantial losses in energy levels. Maryanne had largely lost control over her bladder function, and both Maryanne and Shirley had lost the ability to have children. These are significant losses that others in the workplace were, mostly, unaware of. They were also losses that reached into the deepest recesses of the respondents’ personal and professional lives. For example, losing one’s energy levels is a significant loss, requiring the individual concerned to plan around limited energy levels. Even with the best planning though, overwhelming fatigue can crush the most stimulating and enjoyable of activities, rendering them wearisome and impossible. It can also strike at the most inopportune and unexpected times, and is not necessarily linked (as healthy people tend to assume) with adequate levels of sleep.

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Psychological loss Psychological losses were also manifest in the stories. Loss of self-esteem or reduced self-image can result from either the illness and its ravages, or from the medical treatment it entails.6 The psychological loss associated with the illness or its subsequent treatment regimen may also be ‘invisible’ to others. For example, Linda reported embarrassment that others knew about her lost breast after her mastectomy. I would suspect that, certainly in the early stages, her loss was more profound than embarrassment, as her commentary suggests. Elements of regression seem apparent in an effort to protect herself: I just felt like a little girl again. Like, you know, I just felt like, ‘Oh, I want my mum.’ (Linda Interview #1: 11)

LINDA:

Beverley also commented that her psychological loss was at the deepest levels, impacting her working life. I asked her about this: How does it, how did [the diagnosis] influence your self-image? How did it affect your insecurities? BEVERLEY: Oh, look, it affected me, it affected me at work. I was really not doing very good work. I just was being put in positions with people who were, you know, sort of directors or whoever, and I’d sort of cringe at the thought of having to go and face them and talk to them about things, and, and, it was just, it was really bad. It just threw me so badly for a while. MV: Just your confidence generally? BEVERLEY: Yes. MV: Right. BEVERLEY: And it wasn’t because I have MS. It was just because of what it did to me personally knowing that I had it. It wasn’t thinking, ‘Oh, I’ve got MS therefore I can’t talk to this person.’ It’s just that it shook me at a much deeper level than that, and it took me a long time to work out that I was actually OK and I could do my job. Because you see when I first got it I had about two months off and I just was really disoriented, and while I was getting it, and not knowing, and then after that, and, you know, it was just, it was a really bad time. And it did take a long time to sort of get back on my feet again and get my confidence and, as you say, self-esteem back. Mmm. (Beverley Interview #2: 14–15) MV:

Others who have not been faced by such a challenge to their identity may be completely unaware of the impact that the diagnosis of a disease like MS can have on one’s self-esteem. Certainly, Beverley noted that it ‘shook her at the deepest level’, interrupting her comfort in liaising with senior colleagues and leaving her feeling disoriented and lacking in confidence.

Careerist concerns 97 Relationships Relational loss and/or threat to relationships (past, current or future) was also frequently reported. The literature supports the view that chronic illness can have substantial impact on interpersonal relationships.7 For example, Beverley described her initial reticence in dating men after the diagnosis of MS. Shelley wondered how her boyfriend would react when he saw her when she was ‘really sick’ with leukaemia. Rosalie recounted the strain that her having chronic fatigue syndrome had placed on her marital and family relationships. Rodney suggested, half-jokingly, that his wife would leave him if he injured his back foolishly again. However, perhaps the most poignant relationship losses reported were those experienced by the two respondents with endometriosis. Both reported the resulting absences of partner (sexual) relationships and a loss of the ability to have children. Maryanne (who also has interstitial cystitis) shared her distress, as a result of the thoughtless comments of another: MV: What about other aspects of your life? MARYANNE: Oh, sex, relationships, children.

I mean there’s all of that. There’s this thing of not wholeness. The whole attitude of being a woman and having a family stuff, that you’re not complete … I once, my mother and a friend of mine and one of my sister’s, we were talking one day, and I do have a natural affinity for children. They love me. They just come to me. And it was always, ‘Maryanne will make a great mother,’ and all this sort of stuff … And one day we were sitting there and someone said, ‘You don’t have children. You don’t know.’ I said, ‘That is the cruellest thing you can ever say to a woman that will never have children.’ It’s the only time I get upset when I talk about —, you know. And I said, ‘That is the cruellest thing you could ever, ever say. That is the most thoughtless thing you could ever say.’ (Maryanne Interview #1: 28)

Shirley also spoke frankly about the fears she had regarding endometriosis causing her pain during intercourse. I asked her: Do you think having one or other, or both, of these conditions, do you think it affects the way you relate to other people? Can you tell me about that? SHIRLEY: Definitely. Because I — . I don’t really want to say this, but I suppose I have to say it, I am frightened of endometriosis. I’ve never had a relationship with anyone because I’m too scared, because they have said that once you start into relations with somebody the endometriosis can cause a lot of pain. So I have stayed … MV: This is emotional pain? SHIRLEY: No. Physical pain. (I feel like an idiot at this point). MV: This is a sexual problem, right? (Finally, I get it.) SHIRLEY: (Shirley nods and indicates yes) So I don’t get involved with anybody because I’m fearful of what sort of pain it will be. I mean I can handle pain MV:

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but, from what I’ve heard from others, from what I’ve read from books, I’ve never actually asked another female that’s had it. I’m trying to get the confidence up to ask the lady I work with, but I don’t, I’ve only read in books what it’s supposed to do and how bad it’s supposed to be. So, the endometriosis hasn’t really affected me as far, I mean, the lipodystrophy hasn’t affected me as far as relating to people. That doesn’t make any difference. The endometriosis does, I suppose, if you are talking about having a relationship, but … MV: How do you feel about that? SHIRLEY: I haven’t really given it much thought. I really haven’t really thought about it. I mean, I know that it’s no, that it’s no big deal. I mean I can’t have children anyway, because they’ve told me that I have a … your uterus is shaped like that. (Shirley indicates a normal depiction of a ‘balloon’-shaped uterus by drawing on the desk with her finger) Mine is shaped in a heart. (Shirley also draws this with finger on the desk) There is no room for the baby to fit. So they’ve told me, since I was 19, that I’d never have children. So, I haven’t really worried about getting, because to me, if you have a relationship it’s usually, I mean most of it, it’s because they want to get married and have children. I do not want to get married. Men are a big pain in the backside. So, it hasn’t really been, like I don’t get upset about it, or I’m not going to have a nervous breakdown because I’ll never have children and all that sort of thing, and I’ll never get married. That makes no difference to me. I don’t have time. I work seven days a week. I look after my mother who is a kidney dialysis patient who does kidney dialysis four times a day. I don’t have time. MV: How did you feel when they told you that you wouldn’t have children? SHIRLEY: Well I was only 19, so — . It didn’t really affect me, but I had made this pact, I suppose you would say, that if I didn’t have children by the time I was twenty-four, I wasn’t going to have any at all. So, I just accepted it, just accepted the fact of the way it is. (Shirley Interview #1: 18–20) As a result of her illness, Shirley confided that, as a mature adult, she had never engaged in sexual relations.8 These are the sorts of momentous outcomes for people with unseen chronic illness that colleagues would not be aware of. I asked myself how Maryanne and Shirley might have felt when someone in the office became pregnant and everyone celebrated. I asked myself how they would have felt when other colleagues discussed the ups and downs of parenthood, sharing stories of children’s activities, successes and failures. I also wondered how they felt when others in the office shared joy and sorrow as a result of relationships – good and bad. It was these kinds of losses that were so invisible, so painful – so silent.

Careerist concerns 99 Life-choices Loss of life-choices, such as those reported by Maryanne and Shirley, were also encountered in association with work outcomes and choices. Dyck (1995: 307) referred to a loss of the taken-for-granted nature of the lifeworld or ‘biographical disruption’. These are, specifically, those aspects of our lives that are planned for in the future and may include such specific things as career or educational choices or, more broadly, the availability of future choices as to how one may live one’s life. For many, the imposition of the physical limitations of a chronic condition, its treatment regimen, possible iatrogenic outcomes, or future physical losses may mean a radical alteration to one’s life. These limitations may be imposed at an enormous cost to the person with invisible chronic illness in terms of choices that can be happily and reasonably pursued. For Maryanne (#1: 28), her illnesses meant a lost career in science or medicine. Rosalie also portrayed a heartfelt sense of loss through truncated careerist aspirations: What’s the worst thing that’s happened to you, with regards to your work, because of having chronic fatigue? ROSALIE: It’s the loss. It’s inevitably the loss. I was a high flier (Rosalie is becoming very emotional now) and it’s, it’s incredible loss. I mean I will never do the sort of things that once were open to me. I will never have the range of opportunities that were once there. I have lost opportunities at working at a very top level that I would, I will never see. So, I suppose there’s a whole lot of words (strangled laughing/crying combination) but the top one would be enormous loss.9 (Rosalie Interview #1: 21) MV:

Life-choices, especially for the careerist, may include lost educational opportunities. For Shelley, the Master’s degree she planned to do did not eventuate, due to the course of her leukaemia. For Maryanne and Rosalie, the completion of postgraduate studies was most difficult. Whatever the unseen condition, loss of life-choices were reported. Whether it was not digging holes in the garden (Rodney Interview #1), or feeling constrained to remain in a job because you don’t have the stamina to change (Linda Interview #1), or staying in a home where you know where everything is, so that when your vision finally fails you will be able to find your way (June Interview #2), loss of life-choices was ubiquitous for the respondents I spoke with. Financial loss Loss of financial security was also perceived to be an issue, although it was not one that was widely discussed by respondents. ‘Environmental constraints’ (Lazarus and Folkman 1984: 166), especially material resources such as money, are usually finite. The threat of illness and disability to one’s livelihood is a central one, especially when there is a need to continue supporting one’s self and others. Having money to survive, for many, means having suitable employment, which is not always easy. Poverty and physical impairment have been correlated.

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Financial difficulties may be an obvious, direct and sudden result of an impairment or accident. For others, chronic illness may result in a slow drift downwards and often sets up a vicious circle where sickness causes unemployment or underemployment, which, in turn, causes more sickness (Blaxter 1976: 89). For Beverley and June, as single mothers, the pressure to continue working to support their offspring was discussed. For June, the imperative of providing her children with the best education she could afford outweighed the potential risks to her sight: Probably the worst ordeal was at the very beginning, nine years ago. Because at that stage I naturally had to go to work otherwise I would have had to take the children out of school. I could survive on a pension to pay the house off, fortunately, but I couldn’t pay for the children. So I pushed myself to go to work and I guess, thinking about it, I probably did put my eyes in jeopardy in a way, because I sort of fiddled around with medications. I’d get up at five in the morning so that I’d have them [the eye drops] in. I’d be able to see to drive to work and I’d be able to run a group when I got to work, because I had to function when I got to work. And by having them in every four hours it worked that I could still see to drive home. And yes, sometimes, I didn’t just about make it, seeing to drive home. (June Interview #1: 7)

JUNE:

Related to the pressing need to earn a living, Beverley reported her future concerns about getting to work. How would she get to work if her MS worsened to the point where she was unable to drive her car to the bus stop or get on the bus? More worrisome than this, perhaps, was her admission that if she were disabled such that she couldn’t get to work, she also wouldn’t be able to live where she lives (a two-storey townhouse). She confided that the stairs would be a problem, the bathroom, everything. Even worse, from her point of view, was her fear that her children might have to go and live with their father as a direct result of her incapacity and disability (Beverley Interview #2: 28). There is no question that financial loss was a significant factor in the lives of those interviewed. However, as is discussed in the next chapter, there was little discussion about actual details of how much worse off, financially, people were. Financial loss, as a potential downhill spiral, was confronted by several of the respondents. They had clearly considered their illnesses both now, and in the future. They had thought about the direct impact on their work lives, both on doing the job and getting to the job, as well as the effect of the illnesses on other aspects of their lives, such as where they might live and what household accommodations might have needed to be made.

Feeling bad In following a hermeneutical method involving the need for a common and valid understanding of meaning (Kvale 1983: 185), there was a deliberate decision to

Careerist concerns 101 retain the use of simple terminology – feelings.10 Talking to respondents revealed a great many instances of them ‘feeling bad’, which I have attempted to interpret in the following pages. These ‘negative’ feelings varied widely and stemmed from a large array of experiences. These feelings had an enormous impact on individuals, both at work and at home. They were observed and discussed during interviews and later analysis, not merely through the linguistic framework, but from what was not said by respondents – by reading between the lines (Barritt et al. 1984: 6–7). Once again, ‘feeling bad’ may be largely silent. Colleagues cannot see that anything is wrong with the person – an invisible response to an invisible problem. Feeling bad was sometimes experienced by respondents on a chronic basis, although wavering in intensity and duration. Such feelings varied widely and included uncertainty, anxiety, anger, fear, sorrow, shame, humiliation and aloneness.11 The likelihood of a ‘growing aloneness’ (Fromm 1942/1960: 23) increases in an individualist culture. As Fromm (ibid.) reminds us, ‘when one has become an individual, one stands alone and faces the world in all its perilous and overpowering consequences’.12 ‘Bad’ feelings were clearly reflected in the stories shared by Fred, Shelley, Shirley, Rosalie, Daphne, Beverley and June. For example, Shelley articulated her fear for the future, her anxiety and uncertainty, and her aloneness in her concerns with her future with acute lymphoblastic leukaemia: And how do you feel at work, if you’ve got an ache or a pain, and waiting for results [from tests associated with leukaemia], and they’re still ‘on your hammer’ at work? SHELLEY: I think it’s just anxiety (much emotion in her voice now; fear) … I do, I just, even though it could be something negative, I sort of, I do, I wait for mum to ring, just to give me the AOK, or no, so I know. Because I guess if everything’s OK I stop worrying. It’s the worrying that stops and the pain; everything seems to disappear. If there is a pain there, everything feels bigger and larger than life until I feel that it’s been cleared. Yes. (Shelley Interview #2: 11) MV:

Later in the same interview, Shelley confirms the ongoing nature of these concerns and her aloneness in the experience. She confirms the lack of support from her colleagues: SHELLEY:

There’s ongoing worry for me that other people aren’t aware of. (Shelley Interview #2: 15)

Fear also seemed ubiquitous in the stories – and with good reason. Linda’s use of imagery of the time bomb ticking was particularly evocative: MV: What is it like for you to have cancer? LINDA: Scary. Really scary, like, you know,

how I describe it is I feel like a time bomb. (Linda is observed to be trying to control her rising emotion here) I just feel like,

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Humour, jokes, laughter and asides during interviews undoubtedly conveyed meaning (White 1982: 145; Kline 1984: 27; Gabriel 1991: 858). Whether they were used to trivialise the import of what was being said (or felt) (Kline 1984: 31), to ‘normalise’ it (Branson and Miller 1992: 19; Robinson 1993: 8), to resolve contradiction and release tension, or as a reaction to the striking of a ‘nerve’ during a tense, personal moment (Denhardt 1981: 55), humour and laughter were used frequently to lessen tension during the interviews, by both respondents and the interviewer.14 Sometimes, it was what was not said that resonated with the strongest fear. Storytellers frequently left unsaid anything that directly earmarked death or disability. Whilst not always immediately obvious during the flow of the interview, what was ‘unspeakable’ for respondents became evident upon review of the transcripts. For Beverley, it was that she had MS; that she ‘was afflicted by it’ (Interview #2: 21). For Shelley, it was the uncertainty of life itself that was ‘unspeakable’. When I asked about what might happen in the future (Interview #2), the possibility of death was never specifically mentioned, yet its dark presence was palpable. However, it would be wrong to suggest all respondents avoided direct reference to death and disability. Fred, for instance, spoke openly about his fears about the prospect of dying: When he [the doctor] said to you, when he said that you wouldn’t get to Christmas, what month were you in? (Nervous laugh from MV ) FRED: (Fred sighs) I was in October. MV: You were in October? FRED: Yes. So he gave me three months. Six months, maximum. He said, ‘By Easter.’ He said, ‘There’s no way in the world you’d be here by Easter.’ MV: What did you think about that? FRED: Well I just thought about dying. I thought, ‘I don’t want to die.’ You know, I’m not ready to die. And when, you know, you’re going to die in advance, you know, if I walk out the door and get hit by a bus, well that’s an accident. Or if I die in my sleep, no probs [meaning problems], you know? But when you get told, you know, like that, I thought, ‘Oh my God!’ You start, ‘Holy God,’ you know. You start counting the days, you know, ‘Oh Jesus. I don’t believe it.’ You know, it’s just, it’s just like being hit by a ten-ton truck. You know. It’s unbelievable, you know. It’s just like everything just flashes in front of you at the time, and you, you’re in another world, you know. (Fred Interview #1: 7–8) MV:

Careerist concerns 103 Fred is clearly terrified by the contemplation of his own early death. As I think more deeply about what this experience must have been like, I considered that Fred would have needed to have taken time off work, possibly in his lunch hour, to visit the doctor on this occasion. Not only did he have to drive after this shattering news, he may well have taken himself back to his place of work. He must have been in a state of shock. If he had not gone back to work, he would have faced the onerous task of informing someone of his whereabouts and, possibly, what he had just learned. Themes of anger, described by Bowlby (1980: 128) as an ubiquitous feature when mourning loss, also reverberated through the stories. For example, Fred reported irritation with the pity that he felt was his constant companion, both at work and socially, from those around him (Fred Interview #1: 30). Rosalie reported her resentment with anything that placed unnecessary demands upon her very finite levels of energy (Rosalie Interview #1: 15). Linda felt angry that others didn’t understand: MV: How do you feel when they don’t understand? LINDA: Angry! MV: Angry? LINDA: Yes. But for a lot of my questions I’ve said

I’ve been angry. Frustrated and angry and annoyed and — . You know, sometimes I wish they would come up to me and ask me questions about it. (Linda Interview #2: 15)

Interestingly, many of the negative feelings seemed to have been aroused by the response of others towards the respondents and their situation, specifically, their lack of understanding about the invisible condition and its effects, rather than solely from the condition itself. Linda also demonstrated a helpless anger and likely feelings of violation and betrayal at her manager’s callous suggestion that she find another job when she returned from seven months’ sick leave.15 She recalled: I was really angry that he wasn’t considerate … It was just, he just didn’t really care basically. MV: And how did you feel about that? LINDA: Angry. Frustrated. I just wanted to cry, but I knew I couldn’t because, you know, I was in front of my senior manager and like if I just dissolved into tears it wouldn’t look too good. So, yes, just really emotional. (Linda Interview #2: 2) LINDA:

Frustration and anger resonated through many of the respondents’ stories. Linda also reported, specifically, her frustration with her illness, her life and the lack of understanding she felt from other people (Linda Interview #2: 15). Fred described his frustration at the continuing, and well-meaning, phone calls during his illness and protracted convalescence. Again, the sense of not being understood, of not being ‘heard’, continued to unfold. What people who have not lived

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through these experiences may not realise is that it can be extremely painful and tiring to psychically relive events surrounding illness. Fred recounted his frustration at having to continually relive his experiences with his cancer treatment at a time when he wanted and, perhaps, needed to think about other things: MV: What about people ringing up FRED: It drove me nuts. MV: Did it? Did it? Yes. FRED: And it was my own family

all the time to find out?

too, to a certain extent. A lot of friends as well. Because you just found yourself, that’s all you’re doing. All day long, just sitting there, just saying the same thing. ‘I went to the doctor. I had the treatment.’ ‘How do you feel?’ ‘Got home all right?’ 16 (Fred Interview #1: 31)

Another theme that reappeared with monotonous regularity and that has been reported in the literature was that of felt stigma or shame.17 The urge to belong and the intense emotions of shame and pride may be the most powerful forces in the human world (Scheff 1994: 277). Felt stigma was observed in the stories in various forms: shame, embarrassment, humiliation, feelings of rejection, feelings of inadequacy, and, even guilt. For example, Rosalie reported feeling rejected because of the changes that chronic fatigue syndrome had brought to her life and her abilities: How do you think you’ve changed personally since [having chronic fatigue syndrome]? ROSALIE: Oh, enormously. MV: Mmm. In what way? ROSALIE: Much more introverted. I was being very much, very extroverted, very outspoken, very opinionated. MV: Why is that? Is that just because you don’t have the energy, or because you’ve …? ROSALIE: I think it’s energy, but I think I feel like I’ve, what was I saying to [my husband], I felt the stuffing knocked out of me. I think, to survive, I have to be measured about what I can do, so I can’t be spontan- … oh very spontaneous. And I wouldn’t have thought twice about inviting lots of people for a meal, and I was never a brilliant cook, but that would have been, I might have got into a sort of a panic at some level about it, but a lot of easy relating. And, and I have felt, also, a rejection from people, because of the illness. MV: In what way? ROSALIE: I think chronic illness exhausts friendships, exhausts people. It gets them in touch with their own vulnerabilities, and their helplessness. And so unless they’re very aware they, once they try to fix it up and it doesn’t go away, they’re left back — MV: Can you think of an example when this has happened? MV:

Careerist concerns 105 Yes. A very close friend who’s in the church. I mean, I’m in, we’re part of the church. And we refused, you know. She’s into prayer and that God can heal, and that vitamins can help as well. And so all this used to work together. And then, yes, oh I often think it’s, well, the more I think I can add to it. MV: And you just didn’t come through with the right, the right —? ROSALIE: Well, I didn’t get better. I didn’t get better, and I think, I think a person who’s vulnerable reminds people of their own vulnerability and our culture is very big that we can cope, and we can ‘do it all’. The point is we can’t. We just like to put to the side, and pretend that all these people who aren’t coping, aren’t, don’t exist. And I think, it confronts people’s vulnerability and some people are able to do that, and many others are not able to do that. And so the choice I have in a relationship is to pretend everything’s fine, or reasonably fine … MV: Or withdraw? ROSALIE: Or withdraw. And that’s, I mean I guess there’s times relationships just tick over. And I think I want them in my life because they’re part of my past. And they’ll be ticking over relationships, but there’s no intensity or depth, because I guess, I came to a point and thought ‘Well, I can’t lose every relationship in my life (laughter from both) because —’ MV: You’d be very lonely? ROSALIE: Yes, I mean I can’t sort of. So I’d cope. Finally I’d get on the phone a lot, when I’m feeling OK, to maintain — MV: To keep in touch with people? ROSALIE: Yes, some people come around for coffee, which I don’t really like, but I drink. So those are the things, and my husband’s kept friends going. And there’s, there’s a number, well we still, there’s couples that we see, but not to the same extent. (Rosalie Interview #1: 23–4) ROSALIE:

Rosalie is talking about being confronted with the difficulties of maintaining a normal life and, in particular, the difficulties she has experienced with some individuals who have expected her to try harder, to be stronger and to get well. Unfortunately for Rosalie, no matter how many prayers she and her friend said, nor how many vitamins were consumed, many of the limitations that chronic fatigue syndrome imposed on her life remained. As a result, she had learned that some people find sick people and their problems inconvenient and confusing, especially when the inconveniences of ill health don’t go away. Daphne reported her experience of felt stigma in terms of feeling conspicuous walking around the office because of the slight limp she had as a result of the MS (Daphne Interview #1: 6). This limp also made it difficult for her to keep up with others while walking (Daphne Interview #1: 9). As a result, Daphne reported having made a habit of ringing team members when she needed to communicate with them. This was as a result of her embarrassment at having to walk down a long hallway from her office, in full view of all her staff. Linda

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(Interview #1: 11) also expressed feelings of embarrassment, even humiliation,18 that people in the office had known she had lost a breast. Shame and self-blame are also closely aligned with capitalist, careerist organisational expectations of people being required to adhere unstintingly, without question, to the protestant work ethic (Whyte 1956/1963: 18; Perinbanayagam 1985: 94; Argyle 1989: 111) in an individualist culture. For example, Beverley reported that, prior to her diagnosis of MS, she blamed herself for feeling so tired and for not being able to maintain her ‘perfect self ’. She also reported that others were blaming her for not looking after herself, inferring that her constant fatigue was somehow her fault. This is an especially likely outcome for women, who tend to be judged on their ability to care for others and to look good. Beverley must have been so relieved to find a plausible explanation for her fatigue: No, I mean, I guess, probably, you think that too. You think, well, you know, you’re tired, ‘I should get out there. I should get better. I should lose weight. I should do whatever.’ You know. And I should be able to do it. And now, I mean once you know there’s a reason for it and accept that you can’t, then it’s, it’s fine (laughter). (Beverley Interview #1: 17)

BEVERLEY:

Nevertheless, it is still likely to be the case for Beverley that, even with a diagnosis as significant as MS, some people will still attribute her continuing fatigue to something that she is somehow responsible for.

Work-life narratives: a managerialist perspective The most pernicious constraint ever laid on a public organisation is the doctrine of efficiency, a precept that appears so self-evident and so much a matter of common-sense, as to be beyond doubt. If, however, commonsense is not enough of a warrant, we have the weighty pronouncements of economists, accountants and junk-bond peddlers, who continually urge that our salvation is to be found under its banner. (Landau and Chisholm 1995: 67) One of the manifestations of the ‘sick’ organisation is a preponderance of managerialism. The managerialist theme is one that is embedded in the prescriptive doctrines of the market (Rees and Rodley 1995: 3) and has been identified as the inevitable outcome of capitalist ideologies (ibid.: 4). Rees (1995a: 15) defines managerialism as an ideology with two distinct claims: that efficient management can solve almost any problem and that practices which are appropriate for the conduct of private sector enterprises can also be applied to public sector services. It is an ideology underpinning the notion that management

Careerist concerns 107 ‘knows best’ (Rees 1995b: 198). Unfortunately, the managerialist enterprise is sometimes inappropriate – even inhumane. The rise of managerialism does not address the ‘human costs’.19 These are ‘not allowed to cloud the efficiency equation’ (Rees 1995a: 24). Issues such as fairness, justice, representation or participation tend to be treated as constraints whilst striving for greater levels of efficiency (Hughes 1994: 82). As a result, illness may be regarded as a ‘bothersome’, ‘human’ inefficiency detracting from the ‘efficient’ processes of organisational life. If the suitably prescribed ‘solutions’ or policies do not work, it is in some way the organisation’s fault (Rees 1995a: 24) or the failure of the people involved to work hard enough, be smart enough – or feel well enough. The noted managerial obsession with outputs (Hughes 1994: 69) rather than the process of work or the actors involved, and of the strong manager taking tough, rational decisions – regardless of the human cost (Rees 1995a: 16) – provided an interesting thread to follow. During the interview process, I was able to ask several of the respondents for their managerial perspectives. I regarded this as a unique opportunity to find out what people with illness and disability have done or would do, when confronted with someone, like themselves, with an illness or disability in the workplace. It was a chance to see ‘the other side’. Managerial respondents were asked, specifically, how they would feel about hiring a potential employee with a chronic condition, for example, HIV, epilepsy, cancer or MS. First, there seemed to be more understanding directed towards fictional job candidates who had the same (or similar) problems as the respondent themselves. For example, both Daphne and Beverley reported that they would be more understanding towards a colleague with MS (especially, since they had received their own diagnoses of MS) than someone with a different condition. This was not a surprising outcome. The ability to empathise tends to increase as knowledge of a condition increases. However, I also wondered if greater knowledge would, in some cases, have placed managerial respondents in more of a quandary. For example, I wondered if knowing the possible outcomes of a condition like MS (prior to it becoming more visible) might become more of an impediment to a manager faced with the prospect of employing such a person, rather than purely a vehicle of greater understanding. I share Rodney’s paradigm case here, selected because it exposed the managerialist and paternalistic attitudes towards illness in the workplace that can sometimes pervade modern management. The reader may recall that Rodney had a serious chronic back condition: What would you do if you were interviewing a person whom you knew had a bad back? How would it affect you? RODNEY: I would probably ring our HR department first, to find out what I could and couldn’t ask, for fear of digging myself into a major hole that I couldn’t get out of. MV: And if they said it was OK [to ask about the illness]? MV:

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RODNEY: Yes. MV: What would you ask? RODNEY: ‘How’s your back?’ if I knew them. MV: What else? RODNEY: I probably, I probably would raise

it in terms of swapping back stories. Probably. MV: Would it influence you in your decision-making? RODNEY: — I guess if, this really comes back to what I said last week about the fact that if, if they can do the job then it wouldn’t. Then if there was a risk that they couldn’t do the job well, they would let themselves and me down as a result, then it would affect my personal decision. Again, I would need to check with the HR people as to what I’m allowed to affect my decision and what I’m not allowed. MV: When you say, ‘if they could do the job’, would that be in your estimation or their estimation? RODNEY: Mine. And theirs as well. I mean, if they didn’t think that they could do the job, well there’s not much point in me telling them they could. I guess, it’s somewhere in between, I guess. Because they know what their disability is, I know what the job is. MV: What about if you’d spoken to HR and they suggested that it … might not be [a] good idea to ask the person, what would you do then? How would you determine whether they could do the job or not? RODNEY: — Gut feel, I guess, really. MV: Based on? RODNEY: Well, I guess you try and put yourself in their shoes. If you know what’s wrong with them —. I guess there’s two situations. If you know and understand what’s wrong with them, say it’s a back problem, and —. You know it shouldn’t affect what they do, yes, because I’ve got a fairly serious back problem, it’s not the worst that you can get by any means, but it’s not the best … I guess you have to try and familiarise yourself a little with what that involves, what it means, both now and in the short term. But that would only ever become an issue if they were as good as or better than anybody else on a pure qualifications basis. MV: What about if they had cancer? RODNEY: … And I knew they had it? MV: Let’s say it was an internal position and you’d heard on the grapevine. RODNEY: — (long pause) Well, this would not be a decision I’d make in isolation. MV: Go on. RODNEY: I would discuss the whole issue with HR [Human Resources] and my boss as to what they thought was the most appropriate, given that this is a fairly stressful environment, this department, and is this the best, from their own point of view, is this the best place to be, again, in terms of bringing stress in. MV: What about from your point of view?

Careerist concerns 109 From my point of view? — I wouldn’t want to bring someone into a department that, or an area that is not going to help them. MV: But what about how they’re going to help you? Tell me about your perspective as a manager? RODNEY: — (very long pause) On a purely selfish point of view, you’d say if they can’t, they’re either at an increased risk, a greatly increased risk that they’re not going to be as great a help to me or this organisation as the other two. So, from a purely — (pause) personal point of view I guess, you’d really have to look at the position they’re applying for and think ahead as to how you can cover for that position if that person needs to go off sick at short notice for treatment or just goes and doesn’t come back. Yes, there are some positions that are better than others. If it was someone who, if it was a direct report to me, i.e. someone I’d put responsibility onto, then I’d probably be pretty nervous about taking them on. Being realistic. However sorry I might feel for them.20 (Rodney Interview #2: 7–9) RODNEY:

In sum, Rodney, a product of his culture and organisational milieux, demonstrated various aspects of managerialism. He was prepared to have made judgements based on gut feelings, even though these were argued to be rationally derived and, importantly, based on his concern for the prospective staff member. He would have made these judgements seemingly with incomplete knowledge about the fictitious candidates (and their illness, such as cancer), despite the vast consequences his decisions might have had on another’s life. He was, conversely, acutely concerned with organisational (Human Resources) policy, presumably to avoid a possible lawsuit. This seems to be more likely than his need to ‘do the right thing’.21 Finally, Rodney is rationally ‘realistic’ and, yet, overtly patronising in his judgements, as noted in his comments about feeling sorry for the person and of not wanting to place them in a difficult or stressful situation. There seems to be little recognition that the fictitious sick person might have been able to make such a judgement for themselves.22 Daphne (Interview #2) was also asked what her managerialist views might have been prior to her diagnosis of MS. She responded that if a potential job applicant had a diagnosis of MS or cancer, this could have effected a decision against them, in that she believed it might have meant time off for that staff member in the future. She demonstrated less concern about epilepsy, believing that it was less of a problem and could be controlled. Daphne acknowledged that she would have some concerns about staff members with back problems believing them to be unpredictable and incapacitating, and difficult to improve or control. Daphne also, reluctantly, acknowledged that someone with HIV would present the biggest problem for her as a manager hiring new staff. She felt that this condition presented not just problems with being able to do the job (or not), but of potentially placing other staff members at risk, citing the common staff facilities (such as the tearoom) as an example. She said that even surgeons

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who take precautions still catch HIV and die, and that she would not want that responsibility. Daphne admitted to being unlikely to employ a person with HIV. Finally, Rosalie (Interview #2: 9–11) also admitted difficulties hiring others with invisible chronic illness: ‘I’d like to be able to say, “Oh, it wouldn’t make any difference”, but I can’t honestly say it’ (Rosalie Interview #2: 9). The discussion continued: Do you think it would make a difference if someone presented themselves to you who had cancer or who had chronic fatigue? Would your response differ? ROSALIE: Not now. Previously, it would have. MV: Right. In what way? ROSALIE: Oh, because I wouldn’t have taken CFS probably seriously! I mean (laughter from MV), I’m probably back where many people are, because, and I wouldn’t know the complexities, the impact. MV: No. ROSALIE: I wouldn’t have a clue. And cancer, if I’m quite honest cancer would seem, six years ago, much more earnest to me. I mean I, I’m part of my culture as well. (Rosalie Interview #2: 10–11) MV:

What is evident in Rosalie’s commentary is her belief in the lack of validation of ‘invisible’ and fatigue-related conditions, especially those that are not seen as ‘serious’ in the wider community. One of the major thrusts evident from this research is that invisible conditions were not readily understood by colleagues. Certainly, this problem also presented when considering the managerialist viewpoint. It seemed that even people who had an invisible condition themselves could not be expected to understand the nuances of every other invisible condition. As Rosalie confirmed, we are all products of our culture, making it difficult to set aside all relevant (and irrelevant) biases and assumptions.

Illness and the need to hide I note my reluctance to share the difficulties I am currently having with my bladder. Such personal and stigmatising symptoms would be so much easier to omit – to ‘forget’ them and, certainly, not to have to write them down. Lazare (1992: 233) confirmed feelings of stigma attached to diseases associated with sexual or excretory organs, and the anticipated unfavourable reactions of others. That certainly doesn’t make me feel any better about it. I am also struck by the difficulty in sharing the ‘experience’ of these symptoms, and others. How does one explain to another, who hasn’t lived it, what it is like to have no sensation whatsoever over almost half one’s body? Loss of sensation, in particular, is not a problem that is likely to be taken very seriously by others; after all, I can still walk can’t I? If I mention bladder problems, people automatically assume I am incontinent – and are noticeably discomforted by the prospect. I feel certain that they worry that my comments might lead to some kind of lengthy discussion along those lines. But they need not worry. Problems of retention are invisible – in more ways than one

Careerist concerns 111 – and definitely not widely understood. And I am not likely to take it upon myself to enlighten them. How does one explain how disconcerting it is to not be able to empty one’s bladder? How do I make others understand how frustrating, frightening and disruptive to one’s identity (and daily life!) when something so routine, so taken-for-granted, simply stops happening? I have no answer. It is easier – for them and for me – not to talk about it. (Vickers 1996g) For a whole host of reasons, respondents indicated that they needed to hide their illnesses – to be silent about them – even though they were already invisible. Many reported a need to hide their illness or the effects of that illness as a result of what respondents perceived would be the negative attitudes of others towards their condition if it became known. Thus, the need to hide was another silencing factor. Maryanne commented: We make ourselves hide our diseases because of peop–, of perceptions that we have about people and acceptance. And, like, the real irony of that is, you know, that if these people had someone in their family that had the thing, they’d be really supportive … They’d be much more empathetic, much more supportive and have higher expectations on that person’s employer than they possibly would as an employer or a co-worker themselves. And I don’t know if you’d find that generally across the board, but that’s it. You’re dealing with perceptions; you’re dealing with lack of knowledge; you’re dealing with judgements and those things become skewiff. And why people tend to hide their disease is because they don’t know how other people are going to react. You’d be better off walking in the door with a massive birthmark or, or say you have AIDS or something and you have a big AIDS scar or, you know, how they get the scarring on their faces? than that, because people can see – concrete. (Maryanne Interview #2: 15; emphasis added)

MARYANNE:

It is interesting to discuss the question of hiding a disease that is already invisible. Invisible illness is frequently – but not always – hidden. The distinction between ‘unseen’ (or invisible) and ‘hidden’ is an important one, especially in the work context, as I have already discussed.23 Hiding an illness was often a conscious, deliberate act by respondents. Decisions were, frequently, consciously made to make the illness unseen, unnoticed and undetected. This may have been underpinned by the need to convey a picture of essential normalcy (Robinson 1993: 16), especially in the workplace. People with unseen chronic conditions are encouraged not to be sick. They are expected to be and assumed to be ‘normal’, ‘happy’ and ‘healthy’. Paradoxically, being part of a ‘sick’ organisation, one which encourages people to ‘keep up’, to fit in and to be ‘normal’, may make them even more sick (Vickers 1999a).

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I feel like shit.1 I am exhausted beyond belief and I honestly don’t know how much longer I can continue. I have aches all over, a headache and a slight feeling of nausea from the seventh (or eighth) injection last night, and none of the injection site reactions have gone. I am covered in ugly red blotches, all over my belly, and I still have difficulty summoning the courage to plunge that needle into my own flesh. It is 5.30 pm the day following the last injection. I always feel sick and depressed the day after the injection (although I also feel pretty depressed at other times too). This has increasingly become a problem for someone who is trying to finish a thesis, apply for jobs, win a protracted battle with an insurance company, finish a tax return and, somehow, maintain some picture of normality for the outside world. And I have to do it by myself now. I really miss Michael. He used to offer such great insights and suggestions, especially with things like job applications, and he always helped alleviate the agony of putting together my tax return. Not any more. No more. I miss him terribly. I feel like he has died. To the casual observer, no one would know there is a problem, after all, he’s still here and he looks fine. But I know. There’s a big problem and it’s not likely to go away. (Vickers 1996f)

Stories of survival We have seen that life and work with an invisible chronic illness is not easy. The people in this book have shared authentic stories that are indicative of a turbulent, constant inner conflict and of wrestling, consciously and unconsciously, with issues that perhaps have no right answer, no best approach and no easy solution. The problem of having to cope with chronic illness has been explored by other authors.2 However, they have not addressed the peculiarities that pertain to invisible illness and, especially, the problems such an illness may present at work. I came to see that coping with unseen illness, especially for those who were working, as a silent response to an invisible problem. The coping processes revealed here were not things that respondents routinely discussed, certainly not at their places of work.

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Silent responses to an invisible problem Coping has been defined as the ‘constantly changing cognitive and behavioural efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person’ (Lazarus and Folkman 1984: 141). It is a dynamic process affected by numerous variables (ibid.: 142; Dewe 1989: 995). Coping has been described as being comprised of multiple functions which include the need to deal with social and environmental demands, create the motivation to meet those demands, and maintain a state of psychological equilibrium (Lazarus and Folkman 1984: 148–9). Various authors have distinguished between coping styles, coping behaviours, and coping strategies (Dewe 1992: 147; Callan and Terry 1994: 22–4). Coping has been analysed in terms of it being either emotion- or problem-focused (Lazarus and Folkman 1984: 150–154; Dewe 1992: 160; Miller 1992b: 43). Further, coping resources have been argued to include health and energy (not often available to the chronically ill), positive beliefs, problem-solving skills, social skills, social support and material resources (Lazarus and Folkman 1984: 157–64). Coping resources encompass those personal, social and organisational elements that are available to the individual which influence the type of coping strategy which may be implemented (Dewe 1989: 1009). When considering the coping requirements and approaches undertaken by the chronically ill, coping abilities are believed to be maximised through the existence of physical strength, psychological stamina (or hardiness), social support, a positive self-concept, energy, knowledge and insight, motivation and appropriate belief systems (Miller 1992a: 9–14). However, for many people with chronic illness, some or all of these resources are not necessarily available, and are certainly not available all of the time. For this analysis, I have deliberately avoided making any delineation between emotion- and problem-focused coping. I have also not distinguished between coping strategies, resources and behaviours, on the basis that, for those with unseen illness, emotions, problems and responses are closely and inextricably entwined. Further, because the rest of this study has been carried out in a manner that deliberately eschewed reductionism, it seemed contradictory to now introduce the schemata of other scholars and impose them on the stories of these respondents. Thus, it was my approach, instead, to look at the coping agenda from a more holistic vantage point. I was, once again, intent on hearing the voice of respondents and hoped that part of their story would include what they did in order to make things better or easier for themselves when challenges arose. The structure of the model of coping presented here has been designed to make the understanding of their stories easier. It is emphasised that some overlay between constituent themes was impossible to avoid. What was intended was that the chosen themes should not be read as being either mutually exclusive or definitive ‘categories’. They were, simply, my best attempt to depict the ‘structures of experience’ (van Manen 1990), as the respondents reported them.

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Physical coping Reference was made here to ‘physical coping’ in terms of specifically corporeal behaviours or resources employed. These may have been used by respondents to increase or conserve energy resources (Miller 1992a: 11–12; 1992c), to increase physical strength (Miller 1992a: 9), on the basis that improved physical wellbeing may be used as a personal power resource (Miller 1992a; 1992c: 196). Physical strength or energy has also been reported to be a basic mobility resource (ibid.). Intuitively, readers can imagine that if people are not strong enough to get around, or are too tired to think straight, then every task, large or small, can become an insurmountable struggle. Further, in addition to enabling activities to be undertaken, physical strength, energy and mobility help promote feelings of well-being whilst allowing the desired task accomplishment (ibid.: 197–8). Having sufficient energy and strength, and being free of pain, is imperative for most of us to be able to continue and, certainly, for us to exact pleasure and fulfilment from our chosen activities. Unfortunately, the literature confirms the ubiquity of fatigue (Wheeler and Dace-Lombard 1989: 47–8; Miller 1992a: 11–12; 1992c: 196) and pain (Wheeler and Dace-Lombard 1989: 47–8; Stephens 1992: 362–4) associated with chronic conditions. As a result, I was not surprised to find a regular focus from respondents on the improvement of energy levels, on finding ways of keeping fit and means of controlling pain. Respondents employed varying methods to conserve energy, to increase strength and well-being, as well as to mediate pain. First, the use of exercise was commonly reported. For example, Fred took a proactive stance in helping recover his health and, specifically, the use of his right arm by squeezing a squash ball on a regular basis. This effectively gave him physiotherapy, which had a very positive effect in regaining the use of his hand and arm after radiotherapy (Fred Interview #1: 10). Fred shared his experience: The next morning [after his diagnosis] I was laying on the table in the oncology ward at Prince Alfred [hospital] and they put me on a six-week program of radiotherapy everyday. And you only get about two, you’re only on the table for a couple of minutes, because they can’t give you a lot of it. And they just zap you. They zapped me down through here (Fred indicates down from his right collar bone towards the top of the right lung). A cross, a little cross marked on there, and I never rubbed that off. They zapped me through there and that would go directly into the lung, and hopefully kill off the tumour, you know. That’s why I get a bit hoarse at times, too, because I lost a bit of my voice box when they zap you. It just kills anything in its path. It doesn’t separate cancer cells from good cells, and all that type of thing, you know? So, I had six weeks solid of that. And they said, ‘Oh look, you know, we’re going to give you a bonus. We’re going to bomb you for another week.’ And I said, ‘Oh, that’s nice. That’s good. Give me as much as you like. I don’t care.’ (MV’s laughter) So they hit me for, with another week of it, and — . They didn’t, even the doctors there, they said, ‘Look Fred. We’re

FRED:

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not going to muck around with you. We really don’t know, because it [the tumour] is just so big. We just don’t know how much of it we can get. Or if we can get any of it at all, or whatever, you know?’ So, (pause) — once the, once the seven-week period was up they couldn’t give me any more. You can only have so much. I started to lose the use of my, well I did lose the use of my arm for about two years. Because what happens, it — . When they, when they, the ray goes through you to kill the cells, it also kills good cells, and the good cells it kills off control the use of your arm. And they said to me, ‘Most cases, 95 per cent of women who have the same problem never regain the use of their arm again, or hand for that matter.’ And I said, ‘Well that’s no good to me.’ I said, ‘I’m right-handed.’ And they said, ‘Well, be prepared. Because you’re going to lose the use of it.’ You know, so I got a stress ball, a, like a squash ball, and I, see I was sitting around here (Fred indicates his home where the interview was conducted ) for nearly four months. I couldn’t go back to work. I’d lost so much weight, and — because I, I, you know, you couldn’t sleep, you couldn’t eat properly, and not being able to do any exercise or anything. I couldn’t do anything with the arm, and this was just going to jelly (Fred indicates his forearm). You know, it was just getting, you could virtually see the bone, you know. Because you weren’t using it. So I thought, ‘This is not good.’ So I bought a squash ball and I used to sit here watching television every day, and I’d be just sitting there going, doing this (Fred indicates holding the squash ball in his right hand and using his left hand to wrap fingers around it and try to squeeze it. Trying to work his hand.) And I had to go and see him [the doctor] at three months’ time. And, I started getting a little bit of use back in the hand again. And he said, ‘What have you been doing?’ and I said, ‘Oh, just squeezing a squash ball.’ And he said, ‘Oh, it’s incredible.’ So that sort of opened his eyes a bit because, they, they just thought, ‘Oh well, you know, there’s no way in the wide world I’m going to have use of the hand again. Or the arm, you know.’ So I thought, ‘Oh well, I’ve got to nothing to lose.’ I said, ‘Well, I’ve got nothing to lose, and I’m sitting around here doing nothing, at least it gives me something to do. I can’t smoke.’ (Fred laughs) So, I said, ‘This takes the place. I like to give me something to do.’ So I kept on doing that and each time I’d go in there and squeeze his fingers, I would squeeze them a bit harder, and all this sort of stuff, and his eyes were popping out of his head because he couldn’t believe what was going on. And he said, ‘I don’t know. I really don’t know what’s happening here, Frank.’ I said, ‘Well, you know, you told me to think positive. I’m thinking positive.’ And I changed the diet, you know, from junk food to vegetables (Fred indicates fruit bowl with fruit in it), and this is all you can do. You couldn’t do anything else, like, he said, ‘Change your diet. Eat plenty of vegetables, plenty of salads, plenty of fruit, and whatever you do, no smoking of course.’ So that wasn’t a problem. The alcohol, I said, ‘What about a drink?’ (Fred laughs) He said, ‘Well, you can drink beer,’ he said. ‘But don’t drink spirits.’ I don’t know why he said, ‘Don’t drink spirits’, but I wasn’t much of a spirit drinker anyway. But I have a few beers. I wasn’t drinking much at

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Surviving the time, because I was on morphine, you know, and it just sends you gahgahs, you know? So, I just done everything they told me, and the positive attitude thing. Well that came along with being a [sales] rep for nearly thirty years. Because you always have to think positive. And I think, ‘Well, I wasn’t ready to die, you know.’ I thought, ‘Well, I’m not going to die. They’re not taking me yet, you know.’ So, so it’s been a long haul though, because they said the worst part was the first two years. They, you know, he said, ‘Look, you know, we don’t know’. (Fred Interview #1: 9–10)

I have included this lengthy extract from Fred’s interview because, apart from describing the various physical (and psychological) coping approaches he used, it also indicates how important it was to Fred that he needed to do this. He needed to do it, first and foremost, because he wasn’t ready to die. Fred was prepared to change his diet, his lifestyle, his drinking habits, give up smoking and undertake a self-imposed exercise regime in order to help himself regain the best quality of life and length of life that he was able. Fred also seemed, with his self-therapy, to have made a significant and positive impact on the disability that arose as a result of his course of radiotherapy. Fred regained almost all of the use of his right hand and arm.3 Fred had also used diet to assist with his recovery. Other respondents used other means to assist energy levels. For instance, special rest periods were incorporated during the day by Rosalie, as well as planning her time very carefully. Linda returned to the gym as soon as she could and June tried to make time for her gardening, which she found therapeutic and physical. Conversely, some variations on the theme were reported. For example, Shelley commented that she did not have time for rest. She told me that her body simply ‘shuts down’ when she needs to rest (Shelley Interview #1: 9). Overall, Shelley tended to believe that there was little she could do to improve her physical situation, especially if she was having difficulties while at work. I asked her about this: What sort of things, during periods when you don’t feel well, what sort of things do you do to make your work life easier? SHELLEY: At work? MV: At work or at home. SHELLEY: There’s nothing really. MV: Nothing you can do? SHELLEY: There’s nothing I can do. In a situation when I am at work, your weight has to be pulled. There’s not somewhere I can be sitting on a chair as a secretary and slow down my typing pace. MV: So it’s full on? SHELLEY: Yes. MV: Does it ever make it worse, make you feel worse? SHELLEY: Yes. Yes. Usually if I carry on through the day by the time I get home it’s twice as bad and I’m really sick at night. So I suffer for it. But there’s MV:

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nothing you can do when you’re at work. If you go in to work and you’re not well, you can’t ask to go home, even if you’re on death’s door. It’s not worth it. MV: It’s easier to stay there than ask [to go home]? SHELLEY: It’s easier to stay there and suffer for the rest of the day than say, ‘[her boss’s name], I’m going to be sick. I am not well. I’ve got to go.’ If she’s sick she goes home, many times. I guess that comes with being a manager. But if any of us are sick, it’s just easier to be quiet and stay there. It’s not worth it. It’s not worth it at all. MV: You mentioned about your low immune function. Do you do anything to avoid getting sick, or to boost your immune system? SHELLEY: I don’t know that there is anything you can do. MV: Maybe take vitamins? Or, I don’t know, whatever? SHELLEY: No. They said to me to take the vitamins doesn’t make any difference because the ‘chemo’ will cancel it. I exercise, and at work I have, it’s nonstop at work anyway, running around and that sort of stuff. Like in the backyard, and we often take them [the children] to the oval and they play out there, so, yes. I’m on the go all the time anyway. That sort of thing and, I guess I’m fairly good with food, and that sort of thing. But I don’t know if it makes any difference, not to the immune system anyway. And I sort of figure, with all the rubbish in me [referring to the chemotherapy] I don’t think what I eat is going to do anything (laughter). That’s a pretty slack attitude, but — MV: What about extra rest, or anything like that? SHELLEY: Rest? (Shelley laughs) I don’t think I have time for rest. MV: Don’t have time for rest? (more laughter from Shelley) OK. SHELLEY: I guess if I’m really really sick, then my body sort of shuts down anyway, and that’s it. I have to lie down. Yes. It gets so bad that you have to. Yes. But I wouldn’t ordinarily just put time out to rest. (Shelley Interview #2: 8–9) Shelley believed that there have been so many chemical and foreign substances introduced into her body that the value of a good diet and the taking of vitamins would not be helpful. She had formed this opinion with help from members of the medical profession. Shelley also indicated, quite strongly, that she regarded rest as a waste of time, something she could not afford and did not have time for. Certainly, this was understandable, given the seriousness of her condition and may have been directly related to having a life-threatening illness. Cognitive coping People can be encouraged to be more proactive and problem-focused (rather than passive) in their efforts to deal with stressful events that threaten their wellbeing (Callan and Terry 1994: 34). It was certainly my observation that the respondents were, in the main, employing many successful cognitive coping

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strategies to enhance their psychological and physical well-being. Personality factors have been noted in influencing, positively or negatively, mental health (Roskies, Louis-Guerin and Fournier 1993: 617), with psychological hardiness being related to successful coping (Argyle 1989: 272; Miller 1992a: 5) and personal attributes allowing some to positively cope with stress better than others (Argyle 1989: 272). Specifically, a sense of control over one’s life and the inclination to face adversity with a sense of challenge and a sense of commitment in life are juxtaposed here against aimlessness, purposelessness and meaninglessness (Blaney and Ganellen 1990: 298). Positive adjustment to chronic illness has been linked to knowledge, coping resources, a problem-solving attitude, a sense of personal mastery and motivation (Miller 1992a: 7). The respondents’ stories demonstrated various examples of what I would loosely determine ‘positive’ cognitive coping strategies in that they assisted the actor to improve their physical and emotional well-being. For example, ‘positive thinking’ was usefully employed by Fred to help him feel better emotionally and to aid in his recovery (Fred Interview #1: 11). This was done in addition to a deliberate change in his outlook which included no longer ‘abusing’ his body with drinking, smoking and not eating properly (Fred Interview #1: 23). Rosalie contacted the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Society to obtain information about her condition (Rosalie Interview #2: 3) in addition to writing things down to aid her memory and planning her day (and her week) very carefully (Rosalie Interview #2: 15) to best utilise her finite energy reserves. She described her conscious efforts to her get through the day: Are there any other things that you do, either when you’re on site, or at other times, to make your life that day easier? To help you get through? ROSALIE: I write down everything, I plan my sequence — plan very carefully where I’m going, and what I’m doing. — What else? (long pause) I think there’s an acceptance that I can’t recall. I mean I try to accept it now, but I’d have to say that’s not true that I accept that one … I don’t know, there’s sort of in between that I can’t do and work at the level I could easily [before]. I’ve learned techniques, but I say, ‘Look I’ve got to think about that’, rather than bowling in quickly. I’m much more considered in my style. People, some people, may not see that, but I see a difference … Oh, and I suppose, I, those are probably the core things. But I’ve done a lot more. And then, I just make sure too, I mean I’m, that I’m not rushing madly at the end of the day. I’m not rushing back, that I take my time, and I allow plenty of time in getting there and coming back as well, and if I have to stop along the way I do that. (Rosalie Interview #2: 15) MV:

Other examples of what I regarded as cognitive coping were actions taken by respondents to ‘think about’ their illness and try to plan ways to mediate illnessrelated problems. Linda reported that she tried to avoid stress and mediate its

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effects through meditation and relaxation exercises, as well as pursuing craft and embroidery as a stress relief (Linda Interview #1: 8). Linda also specifically remarked on the positive aspects of having cancer, especially that it had helped her to understand others, and their plight with illness and, also, that it helped her reprioritise her life to advantage: MV: What LINDA: In

is it like for you to have cancer? a way I’m glad I did have cancer. It’s taught me so much. Like, it’s taught me that life is so precious, that things are more important than just work, as well. Like, work to me is not a high priority. So I, I’m more understanding to other people, too. Like, with other illnesses or even if they’re just a little bit sick, with just the flu or something, you think, ‘Oh, the poor things’. But, yes, I’m more, I’m probably, before I had cancer, I was probably similar to other people too, being not so understanding. So I can understand how they feel. (Linda Interview #2: 4)

Shelley also sought to actively reduce the stress in her life by ‘switching off ’, by not taking extra work home with her any more (Shelley Interview #1: 12) and by trying to remove herself from what she described as a ‘burn-out’ situation at her work. Finally, problem-solving skills were employed by Rodney, who described carefully assessing a situation before attempting to lift any object that might harm his back (Rodney Interview #1). Maryanne also reported planning her future use of continence pads to free her from having to be so eternally close to a toilet (Maryanne Interview #2: 20). These responses, whilst quite varied in many respects, indicate that the respondents were all thinking about their life with illness and trying to find ways to avoid exacerbating the illness, in addition to finding the best possible avenues to continue life and work in the future. Cognitive coping skills were also influenced by lay or ‘folk’ beliefs about illness,4 especially in terms of their individual response to illness. These beliefs are reported to be heavily ethnically and culturally influenced, genderinfluenced, socially and ideologically influenced, and can also be very complex and multifactoral.5 They are also frequently problematic, illogical and inconsistent (Fitzpatrick 1984: 17–18). Lay beliefs about health and illness were apparent in the stories, and were seen to contribute to respondents’ ‘active sense-making’ (ibid.: 25) of the situation. These beliefs may have contributed to the problems some respondents experienced. For example, Fred (Interview #2: 23–24) who had a slipped disc as well as having lung cancer, would not submit to any form of operation to fix the problem in his back. The reason for this was that Fred believed that being cut open, and the subsequent exposure of his internal organs to fresh air, would adversely affect his cancer. Fred also hoped that his back problem, which was ‘driving him crazy’, would simply right itself (Fred Interview #2: 26). Both June (Interview #2: 6) and Rodney (Interview #1: 12) shared the current community

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faith that advances in medical science would ultimately come to their rescue. From June: I usually don’t think about it [going blind] because I think medical technology changes so quickly that, that maybe something, you know, a head transplant or something (laughter). Things are happening so much, but, but I don’t, I used to really worry. But then occasionally it’ll hit me and I think, ‘Yes, I will go blind.’ (June Interview #2: 6)

JUNE:

Varying attempts at normalisation6 were also evident as cognitive coping strategies of respondents. For example, Linda seemed pleased when telling me that she was treated ‘normally’ by her colleagues at work. She enjoyed being treated like just another team member. Notably, both Linda and her husband appeared to equate coping well with ‘being normal’, ‘everyday things’ and an ‘everyday life’ (Linda Interview #1: 4). Linda described the need for normality in the face of her trauma with breast cancer: So yes … it was really emotional. Like when you find out it’s just like you reprioritise your whole life. Like different things are more important to you. Like, work to me isn’t really important or a high priority. The only real reason I’m back at work now is because for me to try and get back into a normal life again. It’s so artificial, like living a life of running backwards and forwards to hospitals, when you’re first diagnosed and, you know, everybody ringing you up. I mean, people mean well, but sometimes you just get sick of it. You just don’t want to speak to anybody, you know? I’ve had enough. And it’s just really artificial. So I thought, ‘Oh, I’ve got to get back into the routine of going back to work, going to the gym and just trying to get on with it.’ And the other scary thing is, once you’ve finished your treatment you think, oh, everybody has sort of forgotten about you. Like, you know, ‘you’ve had your treatment, you’re OK now’. (Linda Interview #1: 4)

LINDA:

It was notable that Linda commented on the need for her to reprioritise her life. Certainly, traumatic and life-threatening events are known to provide catalysts for people to reconsider their priorities. Even more interesting (especially after Linda reported the insensitivity of her senior manager) is that work was no longer a high priority for her. What was a high priority for her was to engage in work to regain control of her life, and to establish the normality that she so prized. Finally, a need for control might also be cited as a means of cognitive coping with the demands and vagaries of living and working with chronic illness. Lazarus and Folkman (1984: 170–1) have argued that, intuitively, it would seem that to cope with a situation is to attempt to control it – whether this is via altering the environment, changing the meaning of the situation, and/or

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managing one’s emotions and behaviours. Maryanne specifically reported becoming very controlling of her life as a result of her illnesses: Do you think, then, that the people that you work with, do you think that they understand what’s going on for you? MARYANNE: No, because I don’t tell them and how can people understand something that they don’t even know that’s happening? I think that they’re — . I’m reserved. I’m overly fond of rules because it allows control and rigidity. That’s maybe just a personality thing. I just think I would have been a totally different person if I’d never had those diseases. But, I’ve worked out it’s no use pining for that lost person because you’d never get on with your life. I’d be one of the 12 per cent that commit suicide with interstitial cystitis and I don’t know what the suicide rate is for endometriosis. (Maryanne Interview #1: 27) MV:

Clearly, the need for a sense of control, of normality, of living one’s life was very important to these people. Their displays of what I have termed cognitive coping seem to have gone at least some of the way to assist them in achieving this. Social coping Co-workers can make a job a blessing or a curse, and co-worker relations are important for humanising the workplace. These relations constitute the ‘social climate’ at work, providing opportunities for meaning and identity (Hodson 1997: 426). Co-workers provide a very pervasive and powerful influence on the behaviours of their colleagues, whether this is through teams and groups, or via core values. Much to the delight of management, these values are often found in the corporate vision statement (ibid.: 428). Co-worker relations traditionally provide four functions: occupational socialisation, solidarity and mutual defence, resistance to authority and role-distancing, and the affirmation of class and gender identities at work (ibid.: 429). However, for the invisibly chronically ill worker, these co-worker relationships may serve to intensify, rather than ameliorate, feelings of isolation and alienation, because co-workers rarely understand what is going on for the sick person. Within the organisation, social behaviours employed by respondents and the issues surrounding social support were regarded as especially important because the illness is invisible. As we have seen elsewhere, the fragmented and fractured nature of life with an unseen illness is, much of the time, related to the expectations that respondents had of themselves and others, as well as the indeterminate path of many of their illnesses. I was interested to see how respondents handled this particular challenge. Given that many of the problems they experienced were related, in whole or in part, to social negotiations, it seemed that to cope well might have required some quite extraordinary and varied social coping skills. These might have included, for instance, the ability to communicate and

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behave with others in ways that were socially appropriate and effective, as well as facilitating problem-solving (Lazarus and Folkman 1984: 163). The ‘success’ or otherwise of these coping mechanisms was difficult for me to judge. I have taken special care here to report what the respondents’ experiences were, and my interpretations. These are not judgements about what others ‘should’ and ‘should not’ do under similar circumstances. For example, one of the social coping responses that frequently arose in the stories was the need to cover up, to hide and to conceal their illness or disability, and to pass themselves off as normal. The stories were replete with evidence of specific defensive and protective practices (Goffman 1969: 12) related to the concealable dimension of the stigma (Jones et al. 1984: 24).7 Some of the time, attempts to hide difficulties were helpful, at other times, unhelpful. The concept of a ‘mask’ was actually referred to by some respondents. For example, Linda spoke of putting her best ‘face’ forward (Linda Interview #2: 5) and Shelley referred to the need for her and others with unseen illness to ‘mask’ everything (Shelley Interview #2: 14). Similarly, Shirley (Interview #2: 12) hid her learning disability during training courses and Maryanne spoke of hiding her bladder problems, especially from men, being rather scornful of a perceived male lack of understanding of women’s bladders (Maryanne Interview #1: 7). For Linda, part of looking normal, meant concealing the fact that she had lost her breast. She shared her embarrassment about others knowing: And I remember last time, you mentioned about when you got back to work, you said something about that ‘they would all know that I’ve had my breast off ’. Tell me about that, about going back to work. What happened? LINDA: I felt very self-conscious. To me, like, I thought everybody could tell that I had this fake boob. (nervous laughter from Linda) And like, really, it’s like, all my friends and family say, ‘Oh, it looks really natural. You wouldn’t even know.’ But to me, I just felt really self-conscious and that people were looking at me and I’m always really self-conscious if I wear a shirt, like not to bend down, because then people are going to see it and —. Probably, there are certain people that I didn’t mind knowing but then there’s other people that I think, ‘No. It’s not their right to know. It’s none of their business’. (Linda Interview #2: 9) MV:

Rosalie also reported hiding the problems that she experienced from her clients. Rather than feeling that she was hiding from people who might be prying into her life, she felt that, in the workplace especially, clients would be uninterested in her illness. While, professionally, she believed that clients just wanted her to do the job and to keep her troubles to herself, clearly, the burden of hiding her problems was likely, some of the time, to have made her working life with illness worse: They [the prospective clients] don’t want to know. They’re there. They’re paying me as a professional. They don’t want to know. They, it’s not

ROSALIE:

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part of their issue. I’ve contracted to do a job. That’s my issue and my problem, and it would contaminate the process enormously if it was otherwise. And I think for me, that’s one of the incredible costs of having an illness is, is that, that subterfuge, that’s the word I want, subterfuge, that needs to go on, where you are functioning in a world that, that assumes everyone is healthy, well, and in control. So, all of a sudden my energy has to go into pretending to be something that you’re not. And so it’s not just the energy of trying to make sense of the job, with your head, but it’s the emotional energy. (Rosalie Interview #1: 15) Social support at work was also an issue.8 I have already discussed in Chapter 5 the problem of social support not being available, being withdrawn over time and, when it did exist, that it was not necessarily supportive nor positive. It was clear that, unfortunately, sick people sometimes had trouble getting the support that they required. However, as Hodson (1997) has suggested, positive social support can exist in the organisational context. Respondents did sometimes seek and receive solace from colleagues, and successfully so. For example, Fred was able to share cancer stories with several colleagues who also had cancer (Fred Interview #2: 20).9 Rosalie described the empathy and understanding between herself and her business partner (also with an unseen chronic illness), and particularly noted the similarities between their respective situations which helped to ‘make it work’ (Rosalie Interview #1: 17). Beverley also reported a supportive work environment, with colleagues looking out for her and being good to her daughters (Beverley Interview #1: 10), even an incident of being sent home early when completely exhausted (Beverley Interview #1: 14). Fred was told to take off all the time he needed to get over his cancer and his job would still be there for him when he got back (Fred Interview #2: 12). He also reported his relief to be able to inform his employer what was going on. It seemed that Fred welcomed the opportunity to validate his increasing difficulties at work: As I said, I just went up to, to my boss [his supervisor’s name] and told him … And then I went up and saw [the general manager] … and had a chat to him about it. And I told him what the result was and he was the one who said, ‘Look, you know —’. MV: He was the one that told you to take as much time as you needed? FRED: Oh, yes. ‘Whatever it takes,’ he said, ‘Don’t worry about the job. Just get on with it and get yourself right.’ You know, he said, ‘The job will be here when you come back.’ MV: Oh great. FRED: So, even though he’s a general manager, you know, he’s a pretty ‘knockabout’ sort of a guy, you know. He doesn’t, there’s no, no airs and graces about him. He’s pretty good. MV: Did you, how did you feel about telling them? Did you find it an emotionally difficult thing? FRED:

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Oh, I found it a bit of a relief I think, because I wasn’t doing my job 100 per cent … MV: Because of the worry? FRED: Because of this constant, oh no, the pain more than anything else. It was hard to drive the car. It was hard to use my arm, you know. It was, you’re sort of forever doing, or cradling your arm because the only relief you got was holding your hand up like this. (Fred indicates holding his right arm with his left, supporting it at his elbow) So I found it very, very hard, you know, to do paperwork, and reports, and the physical side of the job. So you know, it sounded like I was just making excuses all the time when things came up and I couldn’t do them, you know what I mean. And the other guys were probably saying, ‘Oh, he’s having a bludge on us’, so to speak. MV: So it was kind of making it all valid for you? FRED: Well, I think it sort of said, ‘Well, hey. This guy has got a problem. He is sick.’ I wasn’t, he wasn’t a ‘goldbricker’ [Australian slang for a lazy person]. You know what I mean … Yes, but. Yes, but it was, it was a bit of a relief. I think it was a relief all around, too, because I knew then what the problem was, more than anything else, because I’d had it for so long. And the doctor, because he carried me on for so long with this thing, I was just sort of glad it was all over, and so at least now we know what the problem is. (Fred Interview #2: 12–13) FRED:

However, my concerns about social support were revisited when considering Fred’s story carefully. Despite reporting relief at being able to share his diagnosis with his colleagues and, in particular, that he would not have to worry about his job, Fred was only able to take the sick leave accrued to him over his many years of service. When that ran out, he had to return to work. The promises by management, hastily made it would seem, were not kept. Fred also later reported his fears for his job in the future, although confirmed that assistance was given on the job after others knew of the seriousness of his condition: FRED: Yes. Well, I had … MV: You had that numbness. Yes. FRED: I couldn’t use the arm at

all. Yes. Yes. I lost the use of my arm completely. MV: Right. Right. How did you feel when you were in the office, or wherever you were, at work, trying to fill in paperwork and your arm wasn’t … FRED: Well, I didn’t. MV: You just didn’t do it. You just couldn’t do it. FRED: They had to do it for me. MV: Right. FRED: But the thing that I was worried about more than anything else, it, if I wasn’t going to get use back into my arm, there’s no way they could carry me, and I’d lose my job. Because you know, I am a rep [sales executive], you

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know, and there’s no alternative to what I do, for the money they were paying me, you know. MV: … How did you feel about getting someone else to fill in your paperwork? How did you go about doing that? FRED: Oh, I didn’t worry about it. If I could have done it I would have, but I couldn’t. MV: I’m sure. How did you, who did you ask? FRED: I tried left-handed actually and I couldn’t do it. Oh, [colleague’s name] would help out. [Another supervisor] the other supervisor guy, would help you out. The girls in the office, you know. But at that stage, see, because I wasn’t actually out on the road, so there’s really nothing for me to do, because I wasn’t actually doing my job. I was just sitting in the office answering telephones. So basically, all they, all they needed to fill out for me was your daily timesheets, you know your time you start in the morning, and how much, how long you have for lunch, and the time you finish, and basically, that’s it. There was nothing, nothing to it really. MV: And did anyone say anything to you about it? About having to fill in your forms for you? FRED: Oh, no. They all knew I couldn’t use my arm, you know. They knew I couldn’t pick up a bit of paper with my right arm, you know, so they knew the reason why. (Fred Interview #2: 16–17) Linda’s comments reaffirm the potential for contradiction, ambivalence and inconsistency surrounding social support: You mentioned also, in our last interview, that people don’t know what it means to have cancer. That they don’t understand … That no one really understands what it is like. How do you feel about the fact that no one understands? LINDA: A lot of people try to understand though. Like family-wise and friendswise, they try to understand. But when it comes to work, they just don’t want to know really, a lot of people. You just, they just come across that, ‘It’s no big deal.’ You know, ‘You’ve gone through your treatment. You should be right now’, sort of thing. MV: How do you feel about that? LINDA: (pause) It’s OK. Like, I don’t really expect them to fully understand because I shouldn’t really have gone back to work if I didn’t think I could handle being back there. And not being able to handle what people think of me having cancer or not understanding that I do have cancer. So, it all comes back to people’s attitudes. And you can come across some people that will be really sympathetic to you, who really understand and try to understand. But some people, they just don’t want to try to understand. (Linda Interview #2: 3) MV:

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I couldn’t agree more with Linda on this point. Apart from the fact that, within the organisational context, people seem to take on the mantle of efficiency and effectiveness (at the expense of all other values), there are individuals who are worse than others, and some who, even within the organisational arena, are caring and thoughtful. The question of individual responses and individual behaviour in response to people’s needs cannot be overlooked. Thus, I take great care not to suggest here that all social coping initiatives for sick people are negative in their outcomes. They are not – but, sometimes, they are. Spiritual coping Finding solace through religious or spiritual pursuits (Wheeler and DaceLombard 1989: 182; Shroeder and Miller 1992: 190) and belief systems (Miller 1992a: 13; 1992b: 25) has been reported to provide strength and an increased ability to cope for some people. I am referring here to the spiritual part of us as the essence of our being. It is our spirit that searches for the meanings in life and in suffering (Brallier 1992: 209–10). Religious spirituality is reported in the literature as being a frequent source of support to assist chronically ill people in handling the difficulties they may face (Shroeder and Miller 1992: 190). Prayer has also been reported as a common response for many people even if not previously religiously inclined, perhaps as an attempt to invoke an omnipotent force to help them (Raphael 1986: 70). Whatever one’s view of spirituality, it has been argued that spiritual malaise does not assist healing, coping or well-being. It has also been argued that hope is derived (for some) from spiritual well-being (Miller 1992a: 14). For example, Rosalie reported much comfort in prayer and her involvement with the church (Rosalie Interview #2: 15), among other social, physical and cognitive coping modes. I emphasise again, as Rosalie has, the interrelated nature of many of the coping mechanisms described in this chapter. Rosalie shared: Oh, I’m involved in the church. I tend to, the church, to me, that’s, for me, that’s meaningful. So prayer is very much a part of my life. I try and walk, and I’d just got back to gentle aerobics before I got this (Rosalie refers to her broken arm) and that was really good. And I thought, ‘Oh’. Yes, and I try —. For the first two years, I had a friend who —, one particular friend. I haven’t talked about friends and their support. And I had one particular friend that, she and I would get together regularly each week. And she’d come here and we’d talk about what was happening to both of us. She’d often bring a meal or two. I mean I had a couple of friends, three friends that had worked out between them, they provided meals. So, it’s all those sort of things. And I couldn’t have got, I mean my children used to laugh, because one friend was a much better cook than I’ll ever be (Rosalie laughs). MV: Oh, good. ROSALIE: The meals, [friend’s name], for twelve or eighteen months, was always so wonderful … (more laughter). So, there’s, like that. And I guess one ROSALIE:

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of the ways, I mean I’m a mad reader, and one of the ways I also cope is through novels, escapist novels. Ron’s sister has given me, well all these more educated novels. And I’m afraid I have to do enough for my work. MV: Yes. ROSALIE: And so my, I mean there was, there’s a lot of novels. I think all sorts of authors I’ve discovered which, are essentially escapism ones, but they make a difference. Yes, so friends and the church. And there’s other things I’ve talked about, practical support, etc. (Rosalie Interview #2: 15–16) Rosalie was the only respondent who specifically talked about the use of prayer and her connections to the church. I also noted that Rosalie discussed in this passage, and others, numerous means of coping that she used. This would suggest that the church was by no means her only avenue of support, although it was one she clearly valued. In contrast to this, Linda reported that she preferred to meditate whilst listening to relaxation tapes (Linda Interview #1: 8). Whilst the literature suggests a strong emphasis on spiritual coping being utilised by the chronically ill, this was evident in few of the stories I listened to. This outcome may be representative of an increasingly secular society (Gadamer 1996: 66) or a researcher who failed to uncover this coping mechanism sufficiently well.10 Further questions directed specifically toward spirituality and religious pursuits may have portrayed a different picture than the one presented here. As it was, few respondents volunteered any spiritual issues or their reliance upon or assistance from religion as a form of coping. Material coping Illness and disability are likely to affect what William James termed our ‘material selves’ (Wilmot 1975: 41) or our ‘achieving selves’ (Parsonson 1989: 219). Material resources refer to money and the goods and services that money can buy (Lazarus and Folkman 1984: 164). Interestingly, material resources were rarely mentioned as a coping resource. However, material considerations are demonstrably important when considering issues of economic status, stress and adaptation. There is little question that people with money, especially if they have the skills to use it effectively, generally fare much better than those without (ibid.). This is certainly the case for people with illness and disability. Having money may also reduce the person’s sense of vulnerability (ibid.). For many, financial security is directly linked with having satisfactory employment (not always easy for the chronically ill). Poverty and disability have been correlated in the past. For example, it has been argued that financial difficulties may be an obvious, direct and sudden result of an impairment or disability. On the other hand, chronic illness may begin a slow drift downwards and often a vicious circle may be set up where sickness causes unemployment or underemployment which, in turn, helps to cause more sickness (Blaxter 1976: 89). Loss of one’s job leads to lost income for most

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people. It also leads to the likelihood of increased expenses in other areas, such as heating and lighting (Argyle 1989: 287) because that person is at home more, as well as additional costs directly associated with illness, such as medical consultations, tests, treatments and medication. These can all be very costly. Few of the respondents discussed their financial situation. It is suggested that one of the reasons why this issue is under-represented in the literature pertaining to chronic illness might be because people are unwilling to readily discuss their personal financial details. However, those who did respond with regard to financial difficulties indicated the substance of the problem. Rosalie and Maryanne both articulated the problem of lost income in direct response to their illness. June and Beverley both raised the question of their concerns about getting to work, and that changes in their health might preclude them being able to get to work. The unspoken outcome of this would have been their loss of employment. Illness and disability pensions were also raised. For example, Linda described her good fortune at getting a (work-based) temporary disability pension from her employer, which she described as being around 70 per cent of her wage (Linda Interview #1: 14).11 Finally, Shelley described the impossibility of living on a government-sponsored disability pension (around $300 a fortnight) when she was actively participating in life (Shelley Interview #1: 21), emphasising the pension’s sufficiency only when she was lying in a hospital bed. Shelley also recounted a most astounding story about her experiences with receiving a government pension when she decided to return to work. I don’t know whether it’s relevant to tell you, that I had trouble with Social Security and working? MV: It is very relevant. SHELLEY: I went on to an invalid pension against my —. I just didn’t want it. Being independent, I didn’t want any of it. But the social worker convinced me to go on it, which I thought, well, you know. MV: When was this? SHELLEY: I can’t remember if I was on it when I was in Camperdown [hospital], but I know at St Vincents [hospital], the lady convinced me … And when I went —. I rang them and said I wanted my pension stopped, because I wanted to go back to work. All hell broke out. I had so much trouble from the Social Security Department about me going back to work. MV: They didn’t want you to? SHELLEY: They didn’t want me to go back to work. They kept saying to me — now this is the joke — it wasn’t like I was asking for money. I wanted the money to be stopped. Now my understanding of a disabled pension, or an invalid pension, is that within a two-year period, if you relapse or whatever, you can go back on to the pension. And that was my understanding. So, I knew that by going back to work, if it didn’t work out, I could go back, and I would have money there still to pay my health funds and the rest of it. And I was really, really told, I was told not to go back. [They told me,] ‘You realise your rights? You’ve got money coming in. There’s no need for you to go SHELLEY:

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back to work.’ And I had, I mean, I had massive arguments with Social Security to the point where I was an absolute mess and had to get Mum on to the phone. They really gave me the run around. MV: Why would they? What was the reason? SHELLEY: Because, I’ve got a girlfriend in Social Security, and I said to her exactly the same thing and she said to me, ‘Because they are really pressured to make it known to us, with an illness, what our rights are.’ MV: Right. I understand. SHELLEY: So, I guess this guy, whether he was covering his own, sort of, turf, but I really felt like I was —. I was really quite excited about going back and getting some normality back into my life. And I needed to get back to work. I really needed to get my mind off things. I needed to be out of the home environment: the bedroom, the TV, the soapies, everything. I needed to get back. And this guy just did everything to discourage me. I mean, I still can’t believe it. I mean, if I rang up, you know, they wanted me to go for an interview down there. I mean, all I wanted was my money stopped … And I did say that to the guy. And on the telephone, I was a mess to him. I was in tears. And he just could not see that all I wanted was the money stopped and I wanted to go back to work. [My friend] told me that they really have to make it quite clear to us, as a disabled person, that we don’t have to go back to work. We can live on $300 a fortnight. I mean, I can’t live on $300. Sure, I can if I’m in a hospital lying flat on my back doing nothing, but when I’m living and out and about in the community, no, I can’t. (Shelley Interview #1: 20–1) I was absolutely flabbergasted by this story. Clearly, the staff at the Social Security Department had had it impressed upon them that people with disabilities should be made aware of the financial entitlements, especially in the form of government-funded pensions. While I applaud the sentiment here, which presumably was to protect the rights of people with disabilities, this is another example of the respondents feeling that they weren’t being heard, that others didn’t understand. In this case, it was Shelley’s voice that was silent. The staff member at the Social Security office was not listening to Shelley – not hearing what she wanted to do and needed to do. Shelley had an escape hatch. She knew that if she returned to work and it didn’t work out, or her illness relapsed again, she would be able to resume the pension if she did so within the specified timeframe. However, the Social Security Department representative did not take account of her story, her need for normality and the important part that work played in this. More importantly, he did not take account of Shelley’s wishes. Just as Linda wanted to return to her work routines and a ‘normal’ life, so did Shelley. Her need to regain her independence, self-esteem, identity and links with her working life were clearly of such importance to her. Further, as far as she was concerned, the pension amounts fell short of what she required to live on when she was participating fully in life. Shelley’s financial coping, in this

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incident, was as much related to her quality of life and her self-esteem, as it was to her security for the future. The intervention of the state in the lives of people with unseen illness is also of concern. The individual affected frequently has no input to, or recourse from, this particular type of intervention. Support organisations can unwittingly engender powerlessness in those they are trying to help. Whilst recognising some of the positive aspects of many support groups, for example, in providing a sense of solidarity and encouraging independence (Nettleton 1995: 97), support organisations can also be inclined to foster a negative, dependent view of illness and disability (Robinson 1988: 114; Szasz 1991: 94). Shelley’s story confirms the likelihood of the outcomes noted in the literature continuing into the future, however well-meaning the intentions of the individual or organisation might be.

Concluding thoughts In sum, it would seem that the entwined and interrelated aspects of coping via physical, cognitive, social, spiritual and material responses have assisted the respondents in their life and work with invisible illness. Whilst not always providing a perfect outcome, evidence of their ability to cope was seen simply in the respondents’ continuing existence in the face of sometimes severe adversity. For example, at the time of the interviews, June faced a future life of blindness; Shelley and Linda faced a premature death; Beverley, Shirley, Rodney and Daphne faced the prospect of increasing disability. All of these people were still living, still going to work, still pressing on with their lives as best they could. I marvelled at their capacity for survival. Having said that, I draw to your attention the problem of assuming that these people were resilient and unaffected by their trials. Resilience describes objects that are capable of regaining their original shape after bending, stretching, compression or other deformation (Wilkes 1979: 1241). When referring to people, the essence centres around a quick and easy recovery from shock, illness or hardship (ibid.). One who is resilient may be considered irrepressible, buoyant, enduring, flexible: the person who bounces back – unchanged – from exposure to trauma (Vickers and Kouzmin 2001). Unfortunately, these assumptions of resilience are, in my view, somewhat misplaced. Whilst ‘coping’ continued, and was helpful to those interviewed, I doubt that one can endure some of what has been reported in this volume without some residual, emotional scars. Coping with unseen chronic illness presents a special set of conundrums for organisational actors and further research into the coping requirements and responses for those affected will reveal further understanding of an underresearched area. Why is it, for example, that some actors are prepared to discuss losing a breast, never having children, and their career’s being irrevocably truncated and, yet, on the other hand, find themselves largely unable (or unwilling) to discuss their finances? Is it really the case that the spiritual side of coping with illness (and other trauma) is significantly on the decline and, if so, what might

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the ramifications of this be? Is there a better way to present a model of coping, for example, via behavioural responses? What is presented here is food for thought. Hopefully, it might also provide directions for future research about coping with unseen chronic illness.

8

Notes from a survivor witness

What a strange world I am inhabiting. A twilight zone … On the weekend we went to the beach … I wanted so desperately to just walk off down that beach, away, away, diminishing, as in the final frames of a movie and never coming back … My own pain was no longer something I could carry – this bag of broken glass, and splintered wood, and gravel and shards of steel and bone, this sack of grotesqueries that I dragged clattering and clanging behind me … I lay with this ecstatic, exquisite sense of finality, this final solution … Meanwhile, I haul my bag of trash on and on. (Aisbett, cited by Hawley 1997: 21)

The dark hood of melancholy once again envelops me – slowing me, constraining me, bringing unimaginable loneliness. As I consider my life, I feel hollow, empty, numb. What seems to have sparked this particular episode of depression (among the many) is that I have just learned from a routine, three-month, blood analysis that my liver enzymes are all higher than normal. These blood tests are required regularly to check certain things whilst I am taking the Betaferon. Now, it would appear that my liver is not functioning properly and it is highly likely that the Betaferon injections are the culprit. This cruel paradox presents itself during another hour of bleak reflection: the only current preventative treatment available for people with MS (which, for me, is currently heading downhill like a runaway train) that is considered to have any positive effect on slowing the progression of the disease, is now affecting other, previously healthy, parts of my body. If this trend continues, the Betaferon treatment will be stopped. Ambivalence remains about this drug: I seem to have gone through the worst of the manifest ‘flu-like complex’ side effects (although the depression seems worse), but I firmly believe (or want to believe?) that the MS symptoms experienced would be far worse if I wasn’t taking it. I feel that I need the Betaferon to mediate the downhill trend the MS seems to have taken and, yet, it is now apparently having nasty affects upon other aspects of my life. I guess the decision will be taken out of my hands anyway: it is unlikely that I will have much input. Once again this depression comes the day after an injection and, for once, I have the fortitude to sit down at the keyboard and record my feelings. Half an hour ago as I lay trying to medi-

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tate, instead of clearing my mind, I found myself contemplating a very dismal future. I am not happy any more. I want things to be the way they were; they never will be again. I exist now. I do not enjoy, rarely feeling anything but a hollow, emptiness. I record another day of unhappiness; another spoke in the wheel carrying me down, but where? My liver doesn’t work so well now. What will be next? What else can go wrong? A lot. That’s the truth. A lot more can go wrong. I may as well just sit back and wait for it to unfold. I don’t tell anyone how I feel. I doubt anyone will really understand or care for that matter. I just want to run away – but where would I run? There is nowhere to run, nowhere to hide from all this stuff. I cry a lot. My thoughts are interrupted and the tears are hastily brushed away. I take a phone call from one of the intermediaries from the study: Shelley is not going very well. ‘She is the classic “invisible” chronic illness’ he says. ‘She looks fine, but she is dying.’ She is bubbly and cheerful, but her blood is full of leukaemic cells. I ask myself, ‘How much longer will she be with us?’ I don’t have the courage to call her. I am so sad. What am I doing? What is the point? More ‘fabulous’ news to contend with. I am crying again. Michael thinks the tears are for Shelley. The tears are for me: for my pain, my fear, my loss. Not hers, not his – mine! (Vickers 1997b)

A survivor’s mission Most survivors seek the resolution of their traumatic experience within the confines of their personal lives. But a significant minority, as a result of the trauma, feel called upon to engage in a wider world. These survivors recognise a political or religious dimension in their misfortune and discover that they can transform the meaning of their personal tragedy by making it the basis for social action. (Herman 1997: 207) I commence this final chapter with trepidation. Having heard and reported the voices of the respondents, I am confronted, as Tal was (1996: 247). How do I finish? I reflect upon the ‘worlds of hurt’ ( ibid.: 1) that have been witnessed. Not only have I had the opportunity to share the existential agony in the lives of these people with unseen chronic illness, I have, concurrently, witnessed it in my partner and lived it myself. I have found recurring themes of finitude, guilt, alienation, despair and death (Macquarrie 1972: 17). I have also found evidence of hope, of reassessment and of happiness, in spite of all of this. With all that I have heard I remain convinced that, as writers, we need to write about what we know (Swisher 1996). I ask myself again – as a person and as a researcher – how might I most effectively and authentically report this? This volume is one such effort. One of the most difficult, and conflicting, experiences while completing this work was knowing where my place as a researcher, ‘insider’ (Wilmot 1975: 59), partner and traumatised person with invisible illness began and ended. I asked

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myself, how much should be disclosed in this ‘psychological ice age’ (ibid.: 3) in which we live? I remain unsure. It is difficult to know in this situation (as with many aspects of life with unseen illness) how much to expose and how much to hide. I ask myself – again – where stands the line between responsible phenomenological research and cathartic self-indulgence? For me, there is no solid answer. What is offered here depicts what I thought was reasonable and necessary under these particular circumstances. I am reminded that bearing witness is an aggressive act, born out of a refusal to bow to outside pressure to revise or repress experience (Tal 1996: 7). Knowing that individual experiences are so central to the ways in which we put together a sense of our selves and our identity (Abrahams 1986: 50), I reason that readers will most likely have their own thoughts on where ‘the line’ should be drawn. Whether I have inadvertently crossed this arbitrary and personal point of demarcation or not, my resolve, as articulated in the opening pages of this volume, is renewed. To remain ‘an authentic writer’ (Jourard 1971: 58) is, in my view, to accept that research must be expanded to include those artist-like processes (Steier 1991a: 4). Artists are known for their ability to feel and share pain. As one who considers herself a writer of ‘personal stories’ related to the ‘self ’ (Lemert 1994: 101), I am (with some trepidation) prepared to accept the risk that goes with that. I recall that, at the beginning of this journey, I was clumsily seeking some form of truth. As I near the end of this journey, I know that, for me, ‘the truth’ that matters is narrative truth, which succeeds if it somehow captures the ‘real trouble’ that people experience (Bruner 1990: 111). I am so grateful to the people I interviewed, who disclosed such painful and personal information about themselves and their lives. They enabled me to continue my search for ‘meaning’, that commenced over a glass of wine with friends, and which was reminiscent of Denhardt’s (1981: 56) explanation that meaning is concerned with getting in touch with one’s own evolving experiences. Meaning is about opening one’s world to its fullness, rather than rationalising its incompleteness, and facing up to the fact that we must live with light and dark, love and hate, joy and sorrow. Indeed, the acts of self-disclosure undertaken here by me and by others, are those which allow others to perceive (Jourard 1971: 19, my emphasis). As a researcher privileged by insider status, doing this remained an imperative – an unavoidable aspect of this work. I have carefully (and tentatively) embraced Steier’s (1991a: 5) notion that researchers must be included in their own research. Steier (ibid.: 3) understood that we come to understand and become aware of our own research activities because we are telling ourselves a story about ourselves, as well as others. I found myself doing exactly this. I was reliving some of my journey so that readers knew what was going on during the research process. Research generally tells a story about others. However, qualitative research can also be a story about ourselves (ibid.). I am convinced that by holding our own assumed research structures, beliefs, logics and experiences as themselves researchable – and not immutable – and by examining how we are a

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part of our data, our research becomes, not a self-centred product, but a reciprocal process. The outcome of this sharing, melding and reflection is that the voices of those with whom we interact are enhanced rather than lessened (ibid.: 7). I believe that my hesitant steps into the darkness were worth it. Hopefully, they will encourage others to take similar risks. The critical nature of reflexivity, self-disclosure and sharing were recognised. Reflexivity is a circular process (Steier 1991a: 2) that, increasingly, leads one to a place of greater self-awareness (Gouldner 1976: 55). These were vital constituents of Heideggerian phenomenology and the hermeneutic circle. Thus, for this research, it was necessary to develop my awareness (Steier 1991a: 3). What I hope to have presented are ‘transparent narratives’ (Bruner 1990: 113) – ‘self-stories’ (ibid.: 112) – of the respondents and myself.1 The narrative is opaque, it is circumstantial and contextual, and these factors become as important, or at least, inseparable from the content of what is being said (ibid.: 113). Even where Heideggerian phenomenology has been successfully conducted, there has been very little attention devoted to the part of the researcher in this process. There has been too little interest as to how the cultural norms and professional expectations of the researcher enter into the collection and reporting of materials, much less what was happening to the collector that might have made a difference (Abrahams 1986: 54). Here, I hope that this has not been the case. Public self-disclosure is not an easy thing. As an academic, I pondered the outcomes of these disclosures, both professionally and personally. I have been asked, many times, by readers of my PhD thesis (which also included some of the personal accounts rendered here), how I was able to share all of those personal things about myself. I don’t know. I just did it. The writing of the journal entries during times of turmoil was a cathartic process. However, it is something of a leap from quietly writing in the privacy of my study, to committing publicly, forever, and in writing, my own personal trajectory. It was not something undertaken without repeated consideration of the consequences, both positive and negative. The experience of being asked during personal interactions to ‘give yourself away’ is not unusual (Abrahams 1986: 56). However, those personal revelations are generally made in an atmosphere of trust, and the sharer may choose how, what, when and where the disclosure takes place. This is not the case when journal entries are displayed in the public domain. As a ‘survivor-witness’ (Tal 1996: 2), I was also faced with the difficulties of bearing the burden of sharing what had been seen, lived and felt, and yet knowing that the testimony would always, somehow, be inadequate (ibid.: 16). In knowing that the understanding of others after they have read this will still be insufficient, how could I go about bridging the gap between words and experience? How might I best convey an authentic view of their suffering (Zola 1992: 13)? The problem facing the humanist is one of finding a language to ‘celebrate the survival of the human spirit’ effectively (Abrahams 1986: 47), especially as it survives in organisational life. I accepted that in some cases ‘no witness is competent to speak, given the magnitude of the devastation’ (Carroll 1990: viii).

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However, sharing stories and knowing that they may not be perfect or sufficient is better than silence and continued invisibility. Differences clearly lie between those who have experienced trauma in their lives and those who have not. One of the reasons that communication is hindered is not necessarily because the audience refuses to listen, but because they are unable to comprehend what is being said. Their frame of experience is limited and this affects their ability to see and feel the experience of another. Those who have not experienced, for example, illness that does not get better, or disability that increasingly creeps into one’s life, have a different view of the world than those who have lived these things. Goffman (1974b: 439) would have termed these as different and pertinent vulnerabilities in framing. Those who have not been traumatised have frames of experience that are insufficient to share meaning. Living through troubles gives new meaning to certain words. While, on the surface the language appears unchanged, for those with an unseen chronic illness, words such as death, disability, pain, fatigue, fear, loss and limitation all have a meaning for those who have lived in their shadow that is different to those who have not. Following Heidegger’s ontological guidelines, and utilising a phenomenological methodology that celebrates the acknowledgement of ‘background’ and ‘pre-understanding’ (Koch 1995: 831), required an acknowledgement of the importance of ontology. I found myself privileged, even emboldened, by method, yet simultaneously burdened with it. I asked myself, what has this process done to my voice? I reflect on the ever-widening polarisation of my feelings. At the conclusion of this project I feel defeated, yet strangely empowered; angry, whilst also accepting; more fearful, but also with renewed faith in my abilities to survive; wildly emotional, and yet often-times numb, with no feeling at all; despairing and joyful; feelings of discontent aligned with those of immense pride and satisfaction. My voice, as with the multiple voices that have been heard here, seems heightened in its complexity, fragmentation and ambiguity – and in its need for expression. In many respects it is trivialising for me to have tried to tell these stories and impossible to truly share my own. However, what is more terrifying to me than getting some of this wrong, incomplete or partially incomprehensible,2 is the continuation of the silence. I have tried to share the anger, the confusion and the fear (amongst everything else). However, I remain struck by the difficulties and complexities of explaining to those who have not experienced it, how it is to experience the loss of bodily capacities – visible or otherwise. How might I explain to another what the experience is of awaking each day and wondering what this day may hold; of waiting, powerless, as one’s physical abilities decline; or how it might be to wait for one’s own death? How is it possible to explain the notion of ‘fatigue’ to someone who understands the notion of ‘feeling tired’ as being an experience of just wanting to sleep? How does one transform understanding, when the word ‘tiredness’ itself is completely alien to the experience of a complete, wearisome, shut-down of the body that corresponds to dragging a body through wet sand? How to explicate a heavy and rebellious body that

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simply will not continue no matter how much you might want it to and no matter how inconvenient this may be? Fatigue can ruin the happiest day, spoil the most awaited experience, intrude upon relationships and plans for the future. And how does the knowing witness explain to the ‘outsider’ the powerlessness and fear – tantamount for this writer – whilst acknowledging and explicating that the experience of another sick person rests more closely with anger and, for yet another, in frustration and loss? How might I accurately portray this ubiquitous existence of fear that has been witnessed in others and lived with so closely myself, so that others may truly understand it? How to elucidate this silent and unwelcome ‘life-partner’ that simmers gently, just below the surface, out of sight to others, yet always within reach for me? How to explain to another who does not have this identity ‘additive’, this ‘schizophrenic’ multiplicity of their person? How to explain how it feels to keep at bay something that constantly threatens to overwhelm, to overtake and to undo? And how can this be tolerable one day and unbearable the next – and how might one accurately convey this? I feel the shackles tighten. I am not even close. The words remain inadequate, the chasm unbridged. I am resigned: There is, in this case, no substitute for experience – only [B]eing is believing. (Tal 1996: 15) This notion of Being is, of course, inextricably interleaved throughout this work. Heidegger’s emphasis upon the ontological brings this methodological quest full circle.3 As I have wrestled with the essential question of how it is to Be a person with unseen chronic illness, I find myself landed with the now equally difficult question of how to convey what I have learned. I remain with few concrete answers and many questions. However, at least the silence has been broken.

A return to inception In reaching for some kind of closure, I return to the original objectives. Readers will recall that, in addition to a unique research design, the primary driver for this work was to upturn the fallacy that the majority believe to be true – that if you look well, you must be well. That character is still being read from appearance (Finkelstein 1991: 1) seems extraordinary and, whilst we may decline to endorse such a practice as being superficial and unjust, it remains apparent that we continue to do it (ibid.: 8). Not only do we continue to do it, we do so knowing about the ‘halo effect’ (ibid.: 49; Vecchio, Hearn and Southey 1992: 122–3), and knowing that appearances can and do manipulate our sympathies and reactions (Finkelstein 1991: 50). Nevertheless, judgements about sick people continue to be made and are often flawed. Concurrently, sick people deliberately manipulate the impressions they give to others – sometimes, just to survive. It is terrifying that the quality and depth of our academic endeavours to date depicts that so little has been learned about what we cannot see. That the constancy and primacy of the visual senses have remained as the basis for

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justification and assumptions of ‘truth’ is of grave concern. That antiquated claims of external physical appearances corresponding with internal psychological and moral predispositions (Finkelstein 1991: 42) still survive is testament to the naivety and the crudity of our organisational and sociological processes. There is a continuing simplistic and flawed reliance on one sense, one dimension. These flawed assumptions seriously impinge on the lives of sick people. Second, I commenced by encouraging some reflection and critique of the managerialist imperatives, rhetoric and euphemism that continue to guide institutional life. We have seen, for people with unseen illness, that these factors may make life very difficult. Humanitarian concerns need to be given consideration, not because ‘it makes good business sense’, but because organisations need to make a return to human values. These are the leadership cues that will set apart those organisations of excellence. Quality in organisations is not just about product. It is about interpersonal relationships, about fundamental concern and compassion. It is about caring about the people involved. Further, it would appear that the sterile words and actions which comprise the ethic and process of organisation – rationality, efficiency, objectivity – continue to remain foreign to our actual experience. And yet still the rhetoric of organisations continues to influence our thoughts and deeds. It is impossible to ignore those surges of emotion and meaning, those ‘special moments’ (good and bad) which occur from time to time in life and work. They remain incomprehensible in instrumental terms. For those who perceive that no such emotional charge exists, think back to the last time you heard an unfounded rumour about you. Think back to the last time you were lied to, or the last time you were passed over for promotion or told that the organisation didn’t want you any more. These experiences are the stuff of organisational life. They are important, vital experiences, deserving of our attention, because they represent the reality of our existence in organisational life. That any of us should feel the need to hide our true selves, responses and feelings is of great concern. It is no surprise, then, that people with stigma (visible or invisible) feel the need to hide their true selves. Those who exist on the fringe of organisations – for whatever reason – continue to cover their perceived flaws, to hide and to mask. The costs of capitalism, individualism and managerialism should be revisited, especially with consideration for marginalised groups who are frequently silent and silenced in their troubles.4 The modern individual shows a marked sense of self-consciousness (Finkelstein 1991: 155) and a degree of anxiety about how to perform in public and what the opinions of others may be (ibid.: 156). The performance is socialised (Goffman 1969: 30) and the mask becomes the truer self – what we would like to be (ibid.: 17). In the case of sick people, the mask is one depicting health and capacity. Unfortunately, the emotional and physical effort in maintaining this front is high. For people with unseen illness, the quest for an authentic existence is especially difficult. For them, their everyday being-withothers is inauthentic and symptomatic of their especially distorted social relations (Macquarrie 1972: 118).

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What has been achieved? I ask myself (again), what has been achieved? I believe that, for those who have participated, there has been some feeling of acknowledgement of what they have endured – a sense, at last, that they have been heard. The narrativisation of illness has been described elsewhere as being, sometimes, part of the therapy (Kleinman 1988: 53; Fox 1993: 112). For myself, the same need for validation, affirmation and release is acknowledged. The literature of trauma is usually written from the need to tell and retell the story of the traumatic experience, with the objective of trying to make it ‘real’, both for the victim and to the community. Such writing serves as a validation and a cathartic vehicle for the traumatised author (Tal 1996: 21). However, additionally, people are drawn to projects and activities in which they see themselves as best able to express their desires and potentialities. Those of us in this vein seek action contexts in which we can show the world not only who we are, but also seek activities which will provide opportunities for growth and a means of drawing forth, literally, the best that is in us (Denhardt 1981: 60). At a social and organisational level, old questions are revisited. For example, why must experiences with the medical profession be so dysfunctional? Why must organisational life be so difficult for sick people? Why must management insist on making judgements on behalf of other people, especially when they involve feelings and situations of which managers (often) know nothing, and that impact so mightily and nastily on the lives of those involved? What policy implementations could be made that might ameliorate these situations? How is it that we can still focus on the instrumental, the rational, and the ‘bottom-line’ in the face of such misery? How can a shift to humanity be successfully made in modern organisations? One thing is clear: ‘We must seek complexity rather than avoid it’ (Tal 1996: 22) if we are to ever move closer to answers or to understanding. The personal disasters described in these pages are indicative of a chronic disaster, a creeping disaster: one that gathers force slowly and insidiously, creeping around one’s defences rather than smashing through them. People are unable to mobilise their normal defences against the threat, sometimes because they have elected consciously or unconsciously to ignore it, sometimes because they have been misinformed about it, and sometimes because they cannot do anything to avoid it in any case. (Erikson 1994: 21)

Insights from postmodernism As I consider the tricky questions listed above, it seems reasonable to return to Heidegger’s philosophical underpinnings to point to some way forward. I also thought it relevant to comment on Heidegger’s influence on the postmodernist agenda, given the nature and outcomes of this work.5 It was Heidegger’s work

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that contributed to and influenced the phenomenology and existentialism of Sartre, the hermeneutics of Gadamer, and the work of the poststructuralists, Derrida and Foucault (Audi 1995: 317). Thus, the roots of postmodernism are in Heidegger’s (and also Husserl’s) phenomenology (Hummel 1997: 19), making the relevance of postmodernism for this final consideration all the more pressing. The postmodernist sensibility of disorganisation, untidiness and flexibility (Hassard 1993: 115) lent itself well to this study, which concludes with numerous unanswered questions and unsolved problems. The ‘wicked problems’ (Rittel and Webber 1973; Harmon and Mayer 1986: 9) referred to earlier have been vivified in the stories shared. We have seen the difficulties for the person with unseen illness trying to continue working during the dramatic journey of illness diagnosis. We have seen the difficulties they endure on a daily basis continuing in their workplaces – while they are unwell – surrounded by colleagues who think they are fine, free of pain and feeling good. I have also indicated that the conundrums faced by these individuals are not those that easily lend themselves to policy ‘cures’. These are the continual, multiple, ‘one-off ’ incidents. Every sick person’s experience might be slightly different and slightly the same. Managers might be concurrently knowing and unknowing of what is happening, and of what their workers might endure. These are problems that are not easy to write rational, enduring policy for. In fact, the instigation of such policy might do more to marginalise such individuals than assist them (Keirnan and Vickers 1999). Hopefully, this work will assist in sensitising some managers to the problems that exist. ‘Unseen’ illness presents many ‘reality’ paradoxes. It was not that the people themselves were invisible, but that such central components of their lives were. I recall Beverley’s comments when I asked her if anyone had ever discovered that she had MS without her telling them: No. Most people would not know. I mean they wouldn’t. If I say to them, ‘Oh, I’ve got MS’, they say, ‘Oh. You’re kidding. Have you? Oh. Oh.’ You know, because things are never noticed. (Beverley Interview #2: 2; Vickers 1998b)

BEVERLEY:

However, whilst they may not be noticed by others, they are certainly noticed by the person affected. And that is the problem. Other people, especially at work, just don’t seem to understand, even when they do know. When they do know, many of them don’t seem to care. I recall June sharing her irritation when colleagues didn’t understand her failing vision, even though, concurrently, she thought this was understandable. I don’t think this guy, who I’ve known for some years really. He probably doesn’t know about my glaucoma. Because he knows I’ve got glaucoma, but I don’t think he knows what glaucoma is or how it’s affecting me. He keeps on saying, ‘Well, put your glasses on.’ And I’m saying, ‘But it doesn’t make any difference.’ So, every time I see him he says, ‘Glasses that don’t make

JUNE:

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any difference’, and shakes his head. Yes, so, I feel a bit irritated. I don’t know if irritated is the word but, yes, I felt a bit annoyed that he —. I didn’t want any sympathy or empathy or anything from him. I just wanted him to recognise the fact that the glasses don’t make any difference and, yes, I do have an eye problem and that I could lose my eyesight … But there is no way I can actually make him realise, because I’m doing normal things. I mean I’m driving. MV: He sees you driving and working? JUNE: Yes. So he doesn’t —. And he sees me with glasses on sometimes. Sometimes without. (June Interview #1: 12; Vickers 1998b) The postmodern turn allows a questioning of assumptions and a recognition and acknowledgment of uncertainty (Farmer 1997: 112) that is sorely needed when considering many organisational problems. Postmodernism makes explicit that many interpretations are possible, which is vital when listening to multiple, divergent and fractured voices (Vickers 1998b). Postmodernism is an acknowledgement that real knowledge should be sought from a variety of perspectives, both modernist and postmodernist (Farmer 1997: 116). Finally, postmodernism allows a privileging of the place of the marginalised (Vickers 1998b). Postmodernism accepts that many of our basic assumptions are fiction (Hummel 1997: 25), including the appearance of health. It also allows us to consider the possibility that for many of the difficulties presented here there may be no solutions. Postmodernism is, as Farmer (1997: 110) depicts, a useful gadfly, stinging us into the realisation that our intellectual grids are deficient, stinging us to recognise the need for scepticism about our cherished beliefs, and stinging us to be more sensitive to the injustices that result from our faulty knowledge. Comfort was found in the postmodernist recognition of multiple interpretations whilst I was clumsily attempting to give volume to silent voices, whilst spotlighting a fractured existence and expressing the suppressed in lives replete with physical and social pathology.6 The respondents in this study sometimes reported the absurdities and the difficulties of their working lives. The people here have demonstrated that many of the problems they experience are not particularly malleable and, sometimes, no amount of common sense or ingenuity will solve them. These wicked problems frequently ‘have no definitive formulation and, hence, no agreed-upon criteria to tell when a solution has been found’ (Harmon and Mayer 1986: 10). The storytellers often presented an ‘aching picture’ (Somers and Gibson 1994: 68) of life and work with invisible chronic illness. Their experiences as workers remained inextricably interconnected with the larger matrix of relations that shaped their lives (ibid.: 67). Their stories clearly presented daily dilemmas. For example, who should they tell? What may they expect from others? Is this reasonable? How might they feel? How should they behave, especially at work? What will life hold for them in the future? How will they respond to that? Conversely, for colleagues of sick people, equally difficult questions from another

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stance emerged. How should one respond to the person at work with cancer? What should one say? What should one do? How might that person feel? How would one feel if placed in a similar situation? Might those responses change, from day to day, even from minute to minute? Is this reasonable? How might this affect their work? I set out, artlessly, naively, to find answers to such perplexing, and impossible, questions. What I conclude with is something quite different; something far more powerful – authentic voice – and the acknowledgement that, sometimes, the quest for answers only serves to raise more questions. This work depicts ‘an analysis rather than a solution’ (Fromm 1942/1960: x). Rather than offering another anticipated and irresistible management ‘recipe’, what are proffered are life experiences, sometimes raw, sometimes engaging, sometimes discursive – always enthralling. Whilst I am one who does not support all of the ranging views of postmodernist philosophy, I recognise that postmodernism offers some valuable insights to some of the difficult and irreducible problems of organisational life, such as those that have been described here. It is the aspects of the critical postmodernist standpoint (Boje, Fitzgibbons and Steingard 1996: 64), particularly the recognition of heterogeneity and multidimensionality, that sparked interest for me as I foundered while trying to find some answers and closure to stories replete with ambiguity, conflict and discontinuity (Vickers 2000a). As Flax (1990: 189) asserted, postmodernism offers an ability to think in fragments, rather than eternally searching for consolidation and answers. The postmodernists encourage us to create alternative modes of thinking and practice outside the modernist project. Postmodernism generates warnings and limitations by telling us that certain modes of thought point to grandiosity, illusion and the seductive tyranny of thinking in terms of what ‘truth’ and ‘reality’ might be. The postmodernist viewfinder allows one to question many of the assumptions of modernist thinking. One such assumption that has been challenged here is the reliance on our visual senses as conduits of ‘truth’. The voices that we have heard here have confirmed, repeatedly, that if you look well, you may not be well. Another modernist assumption jettisoned here is the expectation that all problems, including those articulated here, will have solutions. They do not. Indeed, Flax (1990: 222) concludes her monograph along the lines that I have sought, by suggesting that it is reasonable (even imperative) to conclude that there are no conclusions. She wrestles with the fundamental and unresolved question as to how to justify or frame theoretical and narrative choices (including her own) without recourse to ‘truth’ or dominating ideas. She feels compelled, as I do, to provide some justification, but does not find it helpful when justification needs to include solutions or representations of truth. Flax (Ibid.: 236) concluded her work with the confession that many of the questions that motivated her to write have remained unanswered. Flax’s final response was to leave them unanswered and reflect on the nightmare that lies behind them, of what ‘really is’ going on out there. I shall do the same.

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Further, I will conclude with another plea for humanity in organisations. We have seen that the rhetoric and euphemism of capitalism, economic rationalism and managerialism serve to enable organisational members to feel free to absolve themselves of philanthropic responsibility as a direct result of the individualism, utilitarianism, rationalism and managerialism currently saluted in the West. ‘Administrative evil’ (Adams and Balfour 1997) allows people to pursue harmful and hurtful organisational strategies and tactics, thinking that what they are doing is morally defensible and good. Organisational rhetoric encourages people to de-emphasise the bad and to shift attention away from what is really going on (Stein 1998). Euphemism goes further. It actually recloaks the bad as being good. Those who remain inconsiderate of others in the organisation, through ignorance or ideology, may truly feel exempt from responsibility. In this, they are being ‘terrifyingly normal’ when they feel no moral guilt over their actions (Twining 1997: 95). This is one of the outcomes of administrative evil. In this case, the evil is masked by ideology (Adams and Balfour 1998). It is normalised by the managerialist rhetoric that demands that efficiency (at any cost) is ‘good’ and that sick people would be better off at home – ‘relaxing’. Rational managerial action has come to be identified with what one does to further the goals and objectives of that organisation (Harmon and Mayer 1986: 15). Unfortunately, managerial action does not always correlate with consideration and concern for others. Claims to innocence, whether grounded in unconnectedness or inadvertence, raise a special issue of how far such claims can be pressed convincingly. The answer, unfortunately, seems to be ‘very far indeed’ (Goffman 1974b: 330). It is increasingly unclear just what employees and employers owe one another in terms of fulfilment of tacit obligations surrounding the psychological contract (Morrison and Robinson 1997: 226). What is clear is that violations of trust are increasingly occurring and, when they do, result in decreases in trust, job satisfaction, as well as any perceived obligations to the organisation and intentions to remain (ibid.: 227). This feeling of ‘violation’ (ibid.: 226), of betrayal, is a multifaceted blend of first-order feelings. Central to the experience are feelings of anger, resentment, bitterness, indignation, even outrage that comes from the perception of betrayal or mistreatment – a feeling experienced at a deep visceral level (ibid.: 231). Stories of betrayal and violation have been shared here. I conclude this story by considering what I have increasingly come to consider as my transgression. I have transgressed because I have dared, as an academic, to report my personal story. I have transgressed because I am a marginalised person daring to speak up, daring to be heard. I have learned, as Highwater (1997) did, that being ‘outside the walls’ of normality sometimes has its advantages. Sometimes it can even be a luxury: Because it allowed me to evade the rules governing conformity. For me, to be left out was to be forced in a personal quest I may not have dared if I had other, less arduous options. For as long as I can recall, I have always seen my

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Indeed, they are not. Highwater (Ibid.: 11) continues, asserting that many major human achievements have been made by those who are not necessarily members of the pack, but by mavericks, loners, misfits, oddballs and nonconformists. And it is their unique and offbeat contributions that come to be regarded as sublime or appalling, depending on one’s point of view. It is possible that this work might, similarly, evoke such a polarised response. Transgression, in Highwater’s sense, is a positive and adventurous process. Every step of an adventurous life risks a trespass into the forbidden zone. Yet, I am reminded that the only way the rules have ever been successfully modified has been when someone has dared to disobey (Highwater 1997: 33). I hope he is right.

Epilogue A pause …

Human life – that is, a life of consciousness and self-awareness – is unimaginable without suffering. Without pain and sorrow, there could be no pleasure and joy; just as without death, there could be no life; without illness, no health; without ugliness, no beauty; without poverty, no riches. (Szasz 1977/1988: xvii)

For the people whose lives have been glimpsed, who have shared of themselves and their fears, the journey with their unseen illness often never ends, except in death. I feel obligated, having accepted from the outset the risks inherent in ‘authentic writing’, to also mark for the reader a pause, a semi-colon, some semblance of closure. Indeed, it is imperative that the reader should not be left thinking that these stories all have a happy ending – sometimes they do not. For me, exposing my story, letting other people know my voice, occupied a major risk, the chief difficulty and an area most exposed to procrastination. The reader may recall that this research journey began with some private thoughts over a shared bottle of wine. Little remains of that life now. Michael’s brain seizure spotlit symptoms of memory loss and cognitive difficulties that had been troubling him for weeks prior to that catalysing event. In the days and weeks that followed, the seriousness of his illness became clear. I recall one of our doctors telling us to make sure his Will was up to date, to ‘get our house in order’. Since then, Michael has not recovered, but neither has he deteriorated significantly of late. In fact, some good news recently: the lesions that occupy his brain, disturbing function for him (and life for us), have reduced. The bad news is that this has in no way been related to the medication given. The disease, seemingly with a mind of its own, waxes and wanes of its own volition. Michael continues to have good days and bad. He worries that it can flare up again at any time: his concern is reasonable. If it flares up again, it can continue to damage other aspects of his brain and body. If the sarcoid presents in his heart or hypothalamus (the part of the brain that controls body temperature, thirst, hunger and autonomic nervous functions, such as regular heartbeat or intestinal movements), he may well die. Given that the sarcoid has already presented in his lungs, joints and brain (that we know of), this is of much concern. Many of the symptoms of his neurological illness are subtle, although their impact on our lives is not. Michael remains with significant memory problems; we all do. However, it is not that Michael forgets to buy the newspaper when he goes to the shop; it is that when he gets home he has no recollection of having been asked. There is simply no recall of that particular event. Other events stick. There seems to be no rhyme or reason; no pattern which the modernist can’t

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help but seek.1 Michael still has difficulty taking in new information, whether this is through written or spoken word and, once digested, has difficulty remembering it. He has similar difficulties relaying his own thoughts to others. This reduced ability to comprehend complexity reveals itself in many ways: he becomes disoriented easily; he is less sophisticated and demonstrates less insight. There are shifts in personality and intellect: the man who was once punctilious, even obsessive, about time, is now often late and completely unconcerned about this. The man with an incisive grasp of numbers, of tax legislation and of financial matters, now leaves the wrong money when paying the bill at a restaurant. The man who, before, carefully corrected the dripping tap, now leaves one running full-on for hours – the result of a momentary distraction. Some things are remembered, some are forgotten. Some things are understood, some are not. And day to day, there is no way of knowing which is which – but we are grateful for some improvement. Michael remains grieving for the loss of his ‘mind’; for the person he was. So do I. We ache for the loss of abilities most take for granted. Michael is in many respects a different person: we both are. How could we have experienced what we have and remain the same? Few around us comprehend this and it is so painful. The cruellest irony is that no one would know, to look at him, that Michael is sick: his is another invisible chronic illness. He remains, in many respects though, the Michael of old: humorous, gentle, generous and almost eternally good-natured and cheerful, especially given what he has endured. Some aspects of Michael’s intellect remain relatively untouched, making for a very confusing situation for us both and one few would understand. Most assume that Michael is just ‘getting better’ now; that the crisis has passed. Others assume Michael is an idiot. They-speak-ver-y-slow-ly and can be extremely patronising. We have learned much over the past year, about ourselves, about one another and, most pointedly, about other people. Many of the lessons have been harsh, the changes unwelcome; and we have learned firsthand of the stigma surrounding intellectual disability. Michael has retired from work permanently. Thankfully, he was never forced to return to his former place of employment. My own condition has also worsened significantly over the past year. After completing interviews for the pilot study (around the time Michael was hospitalised), the MS exacerbation reported on at the commencement of Chapter 5 left me exhausted and despondent. I could not look at this project, let alone complete it. I was sick of sickness, sick of doctors, sick of the implications of it all and fearful for both our futures. Somehow, though, I did return. I don’t know how, except that I felt a compulsion, a need, a desperate burning, stronger than ever, to tell these stories. I also needed something sufficiently engaging to occupy my thoughts as a diversionary tactic. This task has certainly provided such a diversion and has remained one of the few constants in a life marked with change, turmoil and difficult choices. It has also remained one of the few links back to ‘the old life’. As I write this note, the MS remains unstable. The sensation lost in my right side did, mostly, return, seemingly of its own accord, but other MS symptoms have remained and worsened. Several months of high-dose oral steroids (prednisone) were only reluctantly acknowledged by the MS necessitating another ‘pulse’ of prednisone in hospital. The ‘pulse’ evoked a face swollen like a volleyball (worse than the first ‘pulse’, due to the long-term oral prednisone use preceding it), ten pounds gained in a month, a body puffy and blotchy, purple facial blotches, acne, palpitations, hot flushes, and general and complete malaise for a couple of weeks. This was, however, cheerfully accepted given that this dose of medication had some impact on the

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disease process. The relief was palpable: a definitely failing body resumes reasonable working order once again. As I write one of the final drafts of my PhD thesis, symptoms begin quietly, stealthily to re-appear. Perhaps they won’t get any worse. As I near the end, I reflect again on the ‘So what?’ question underlying all that we do as researchers. I believe I have ‘pushed the peanut forward’ even though many questions remain unanswered, and new, insistent and troubling ones have emerged. The journey continues for people with unseen illness and so, presumably, does the pain. I reflect on my ability to have shared the fractured lives of others given the one I live: the grief and tragedy that has surfaced in many of the respondents’ lives has continued to surprise and, at times, overwhelm me, as does my own sense of loss. Our dear friends at the beginning of this work are still with us: I have the greatest admiration for anyone who ‘sticks it out’ with us. A recent dinner with these two friends found me once again reflecting on the dilemmas faced by the four of us: Katherine still sees a psychologist on a regular basis since her accident. She has had a bad year in her sales work, and has resumed account management responsibilities to reduce the stress. Don, fortunately, reports much better health and a much lower dose of prednisone these days (only 10 mg per day). Michael no longer works and is plagued with headaches, arthritic joint pain, confusion, fatigue, clumsiness and an ever-present threat of seizures. However, he is not getting worse currently and, given the outlook we pondered a year ago, this is a very positive sign. Hopefully, this spontaneous remission will continue. I no longer see a psychologist: whilst very helpful during a period of protracted crisis, in the end, I felt that she was unable to ‘fix’ my life – that was up to me. One step taken to improve my quality of life was to cease taking the Betaferon. I made a conscious choice between continuing to take a medication which significantly worsened my quality of life, through depression and other side effects, in an effort to return to some kind of normality. I am glad I did. Also, Michael and I are more settled financially and emotionally now. However, I continue the battle to get a frightening disease to settle down, fervently hoping that it hasn’t shifted to a more progressive form. I feel a changed person: hardened, cynical, traumatised – and finding, also, that these words hold new meaning for me now. I am often surprised at the harshness evident in some of my comments, my actions and my thoughts. I also find myself surprised at my continuing emotionalism. In the final analysis, though, I have survived. The dark mantle of depression that has periodically overtaken my life for days, and sometimes weeks at a time, is finally receding. I have learned that I am extraordinarily capable and have been startled with what has been achieved. I remain unable to contemplate what that future might hold. The purpose of this epilogue is also to report an ‘afterwards’ on the lives of some of my generous respondents. As is the general tenor of this note and of life with invisible chronic illness, the news is sometimes good, sometimes not-so-good. As with the four of us at dinner at the outset, for the respondents who participated, there is variability in outcome. For some, there has been an improvement in their lives. Rosalie has reported some improvement in her condition, chronic fatigue syndrome. She reports feeling better, more in control and having better energy levels than she has had for years. I’m glad for her. Unfortunately, there is also bad news. Of the ten people interviewed last year, three have left their places of work.2 Daphne has left her job indefinitely on unpaid leave. I understand that her boss was making her life at work so miserable that she couldn’t deal with him and her dete-

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riorating MS, choosing to take some time off to get her life back in balance. The reader may recall this is the same boss who was initially described by Daphne to have been ‘great’ and, yet, was suspected by the researcher to be unkind, thoughtless and inconsiderate. I wish those suspicions had been wrong. Linda has, like Michael, retired from work permanently. She has recently been found to have more secondary cancers. In a young woman, two metastases are indicative of a rather poor prognosis. Linda also complained, at some length to her intermediary, about how badly her employer had treated her and how insensitive they were to her needs, failing to reveal to her when she would find out about her retirement, how much money she would receive and when she would receive it. My suspicions during the analysis process have again, and unfortunately, been confirmed. This doesn’t make me feel any better. Finally, there is Shelley. Shelley spoke hesitantly during our interview, early last year, about her fears for what would happen to her when August 1996 arrived. Unfortunately, she didn’t have to wait until August: in July, Shelley’s acute lymphoblastic leukaemia relapsed, necessitating a lengthy hospital stay in the bone marrow unit. She had to choose whether to have a bone marrow replacement (if they could find a donor) or a brain stem cell transplant (of her own brain stem cells previously taken and frozen). She chose the latter, insuring a period of no contact with the outside world for several weeks due to the risk of infection. She must have been terrified. Unfortunately, the transplant did not ‘take’. I was informed in November that Shelley’s normal white cell count was slowly dropping. She was dying. Shelley then faced choices, every day, of balancing how much she could do without over-tiring herself and compromising her already weakened immune system, against the vivid pressure of living every day to the fullest. I wrote to tell her I was thinking of her. When I last spoke to Shelley’s intermediary in April 1997, I was told that she was very sick: vomiting, diarrhoea, infection; a very low normal white blood cell count. On Sunday, 27 April, at around 4 pm, Shelley died quietly in her home. I think of her, of her life and the loss her mother June must be feeling. I also recognise the blatant confrontation of my own fears: of fear and lost control, over life, over illness – my own and Michael’s. This project has encompassed a most extraordinary turn of events. Not only have I had the opportunity to witness and report the respondents’ passage of trauma with invisible illness, I have concurrently witnessed my partner’s crisis with illness unfold, and my own. I truly feel like a survivor witness: privileged, traumatised and exhausted. In the meantime, as I turn away from this endeavour and move on to the next, more fervently than before, I dare not consider what the future might hold. Michael and I live in ‘the parallel world of illness: oppressive, consuming, difficult’ (Jennings 1997: 17). Like others before me, I have no idea sometimes how I continue: ‘One day at a time, I suppose … you can’t do anything but live one day at a time’ (ibid.: 18). I am also conscious of being ‘wise beyond [my] years, filled with resolve’ (ibid.). I conclude, though, on a positive note as the analysis did, referring to some thoughts from June; words that echoed with me during my own pain, continuing to inspire and epitomising the resilience and renewal that is possible. Knowing that she was losing her sight and (then) facing the prospect of losing her daughter to leukaemia, having already lost her husband to a senseless murder, she said:

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But I’m still here. I’m still living. I’m still laughing. I’m still enjoying life. (June Interview #2: 1) And, somehow, so am I. (Vickers 1997b)

Another word It is not possible for me to finalise this work for publication without providing another update, at least for some of those involved. The journey from field to final publication can, and often is, a long one. I recall that Chase (1996) talked about a period of seven or eight years elapsing between her fieldwork and the eventual publication of the book. This work, hopefully to be published in 2001, followed fieldwork conducted in 1996. Along the way there has been the submission of a PhD for examination, as well as the publication of numerous journal articles. I hope these efforts have been enough to get things going in this area of research. As I re-read some of the journal entries included at the commencement and throughout the chapters in this volume, I am shocked. It is difficult now to conceive of my clearly desperate and depressed state of mind. I am glad, however, that I had the courage to capture those thoughts and feelings as they happened. To try and do so now would have been impossible. There is, simply, no way I would be able to arrest and portray – so long after the fact – my state of mind so nakedly and so thoroughly. I also remain convinced that doing this was an essential part of the research process. However, with my shock on these reflections comes further reflection. It is now more than four years since Michael’s brain seizure in the office. A great deal has changed over those years. I am now thirty-eight years old and, like most of us, wonder how I got here this fast. I believe that the traumatic period that gripped and ruled both our lives served to ‘blot out’ several years – hence my very real sense of not having existed through my mid-thirties. I recall clearly events during my early thirties. I recall clearly events in my late thirties. It is those years in between that remain something of a blur of pain, worry and fear. I still find it difficult to talk about all that has transpired and, especially, how I felt about it. After all this time, I am conscious that some things have never surfaced – and probably never will. I am speaking here of the fear and the dejection as well as shifts in my mind and values that have been just too painful to let ‘out of the box’. I just haven’t been able to deal with them. Time passes and I feel better. To recall means to relive – and I still don’t particularly want to do that. Having said that, as I reflect on those earlier entries, I am overwhelmed with joy and satisfaction in how far we have, individually and jointly, come from that place. I recall, distinctly and repeatedly, lying in bed and seriously contemplating whether it would be worth my while to get out of bed that day – actually, whether I should bother to ever again. I seriously contemplated taking my own life. I can’t even believe it now, but I did. I used to lie in bed in the middle of the night pondering my ‘final solution’. Just as clearly, I realised that it probably would have been Michael that would have been the one to find me. So, I procrastinated – and finished my thesis instead. I’m very glad I did. We now have rich, rewarding (but not perfect) lives. Michael has remained unable to return to a ‘normal’ business employment. What he has embraced instead is stand-up comedy. After many years of hard slog and periods of considerable difficulty remembering his lines, he is

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making excellent progress in his new career. He declares, frequently, that he is thrilled that he is now paid money to stand up and make people laugh. I agree. This is definitely what Michael was put on this planet for. What a shame we had to go through so much for him to get to it. He laughs a lot. We both laugh a lot. It feels good. However, more than ever, I am reminded of what I have tried to do here. People continually (and irritatingly) underestimate the difficulties, fears and worries that we, individually and jointly, face with our respective illnesses and with the future. Michael’s cognitive abilities have improved markedly over the past few years. His conversational ability is now such that those who are not aware of what has happened would be unlikely to pick any irregularity. Regular brain scans (MRIs) reveal that the five lesions which were originally found in his brain have now reduced to one. The last one has stubbornly remained over a number of years without change. So, some permanent damage has been done, but not so much that we cannot enjoy life. Michael’s memory (despite the efforts of those closest to us to convince us otherwise) is still affected and, particularly when he is tired, his thought processes are frustratingly obscure to me. I try to be patient but I know that, sometimes, I am not. My own fears and frustrations with illness and other life events leave me tired and drained, and with less patience than I would like. Nevertheless, his sarcoid has finally taken its rightful place in the background of both our lives – for the moment. There is, still, no cure or treatment for him if it flares up again. We simply make sure he gets lots of rest and hope very much that it won’t. It seems that the vast quantities of prednisone had little or no effect on the course of the disease, serving only to make him gain weight and become aggressive. No more prednisone. For myself, I can finally say, after many years, that the MS is also resuming its rightful place in the background of my life. I am now, finally, in the longest remission I have had since Michael became ill – seven months. Things were starting to settle down when another part of my life became traumatic and stressful, necessitating two hospital visits in March and October 1999 for ‘pulses’ of prednisone – but that is another story. I have been left with some permanent disability that is slightly more visible and impacts more on my life than before. My legs now have a permanent ‘heaviness’ that prevents me from running or climbing stairs with ease. Problems with balance and co-ordination have also worsened slightly, making descending stairs and turning quickly difficult, among other things. I am markedly more clumsy and generally more unsteady on my feet. This might not sound like much of a problem until one tries to cross a busy road – especially when impatient drivers think you can skip out of their way. I cannot. But when walking on the flat, most people would probably still not notice a problem. And, I remind myself, I can still walk. The invisibility largely remains for the time being as does my ambivalence. Whilst it is frustrating that others don’t understand what I am going through, I also reflect on my good fortune. I am still pretty much able to do whatever I want. I still love, laugh, write, cry, argue, think, feel, eat, drink and walk. I still feel fear, frustration and loathing, but I also enjoy merriment and irony – regularly. I remain with difficulty dealing with other people’s problems. I also know that my fear of death and permanent disability (for both of us) remains simmering, out of sight mostly, but just beneath the surface. It leaps into my mind occasionally – but is only a visitor now. I hope it stays that way for a while. (Vickers 2000g)

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A bit more I found out that Linda died yesterday morning. She had been on morphine to make her last weeks with cancer comfortable. Yesterday morning they switched off the life support machines at the hospital. It is over for Linda. As I write this, tears prick my eyes again at the thought of her youth and her spirit. I think about how her young husband will be feeling today. I also recall – with fury – her memories shared with me. Her senior manager at the bank telling her to find another job because he didn’t really ‘factor in’ her life-threatening disease when he was considering what to do with her. I also recall her idiot doctor telling her not to be paranoid about having cancer. This was his response when she initially presented with early indications of the spread of her cancer, which, essentially, sounded her death knell. I wonder if they know of her fate? My only comfort is that her words, as those of Shelley, remain as a legacy to others. Will it help? I hope so. I also feel the need to include the story, briefly, of one of my intermediaries who has been diagnosed with serious heart disease in recent years. He is another person with an invisible chronic illness who has been close to this study, and a wonderful friend throughout all that I have been trying to do. Adrian [a pseudonym] has been so supportive of my research. He introduced me to a number of respondents in this study, not the least of whom were Shelley and her mother, June. It was he who phoned me to tell me when Shelley was dying. He was with Shelley in those final days. He was the one to share with me what happened to her. Adrian has had heart problems for some time. In recent weeks, he found that he had to have open heart surgery – two bypasses. Michael and I went to visit him at the hospital and, again, when he got home. When seeing him at home a few weeks ago, he tells me that he will shortly be returning to work, after seeing his heart specialist. Last week, I get a phone call from Adrian. ‘I’ve got another chapter for your book.’ At first I laugh and then I stop, realising what this might have meant. ‘That could be either positive or negative’, I respond. Adrian tells me that earlier that week he did go and see his specialist. His specialist advised him to take it easy and return to work on a half-time basis at first, for the first week only. Adrian went to the office from the doctor’s surgery to sort out with his employer about returning to work on half days. He tells me, with uncharacteristic emotion, that they tell him not to bother. He is not to return to work. They have made him redundant whilst he was away sick. His job no longer exists. There has been a restructure. Anyway, they rationalise, ‘You will be able to stay at home and relax.’ Adrian is stunned, but refuses to go until he can say goodbye to his staff. He confides to me that this scene was very difficult for him and very emotional. Adrian’s story will also be told another time. It is a particularly nasty case and one that deserves to be heard. I can’t help but wonder – again – at the inhumanity that continues under the protection of organisations and the rhetoric of efficiency. As I move on to the next project, I am left wondering if I will ever be able to leave this behind? I doubt that I could, even if I wanted to. One thing is sure – these voices are no longer silent and that is a step in the right direction. In finishing, I return to Orwell. I wanted to draw attention. I wanted to get a hearing. I wanted to expose the lie. I hope I have succeeded. (Vickers 2000h)

Notes

Introduction: The authentic writer 1 2

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In Australia, the Australian Bureau of Statistics (ABS 1990) suggested that up to 60 per cent of working age adults might fall into this category. This phenomenon will be discussed at greater length in Chapter 1. Donoghue and Siegel (1992: 13) have also noted the following as exemplars of invisible chronic illness: Charcot-Marie-Tooth disease (CMT); endometriosis; fibromyalgia; HIV infection; colitis; Crohn’s disease; irritable bowel syndrome (IBS); lupus erythematosus; lyme disease; post-polio syndrome; premenstrual syndrome (PMS); and thyroid disease. Other authors have written specifically about examples of hidden illnesses (although the careful distinction between hidden and invisible will be made shortly). Documented under this banner were psychosis (under which the problems of schizophrenia, depression and bipolar disorder are subsumed) (Polk and Kramer 1994: 51), epilepsy (Scambler 1984), multiple sclerosis (Fitzgerald and Paterson 1995: 19), arthritis (Seymour 1990: 17), heart disease (Johnson 1991), and chronic fatigue syndrome (Conant 1990; Manu 1992; Shepherd and Lees 1992; Blake 1993a; 1993b). Others that are equally relevant might include cystic fibrosis (CF), head injuries, multiple chemical sensitivities (MCS), sarcoidosis, and nephritis. I’m sure there are many more. In this study, the term ‘chronic illness’ is chosen deliberately, although I believe the distinction between chronic illness or disease, and disability is one where, as Gergen (1991: 119) suggests, the boundaries grow fuzzy. Illness frequently ‘dis-ables’ one from doing things that one would like to do, that one must do, that one should do and, sometimes, that one does not want to do. Disablement is, in my estimation, a continuum, not a bin. It is on this continuum that many people with unseen chronic illness shiftingly reside. The visibility of the disability or illness does not confirm a static, or even a shifting, place on the continuum. It certainly does not confirm residence at either end. Having unseen chronic illness is a ‘shifting’ experience, and where one resides on the disability continuum is a matter of current circumstance, rather than visible criteria. Following Susman (1994: 16), I have adopted the term ‘normal’ (Goffman 1963; 1974a; Susman 1994: 16), as others before me have, for convenience and with no pejorative implication intended. The term is used, as Goffman (1963; 1974a) has done, to describe the unstigmatised. This is certainly confirmed for some individuals with stigmatising illness. For example, this has been reported widely for individuals with HIV (Cacioppe 1988; Sontag 1988; Stone 1994: 55; Vickers 2000b). See, for example, Register (1987), Schmidt (1989), Wheeler and Dace-Lombard (1989), Conant (1990), Curtin and Lubkin (1990), Szasz (1991), and Donoghue and Siegel (1992).

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There have been some works completed that pertain specifically to invisible illness, disability or injury (for example, Falvo, Allen and Maki 1982; Whittington and Wykes 1989; Baggerly 1991; Kantor 1991; Donoghue and Siegel 1992; Vickers 1997a; 1997d; 1998a; 1999a; 2000a; 2000b). On the other hand, there have also been those who have commented specifically on hidden illness and disability (for example, Laurent 1985: 543; Lawson 1987: 250; Day 1988: 21; Seymour 1990: 17; Gaze 1991: 49; Haydon 1991: 18; Tate 1991: 25; Ayala and Lederman 1994: 9; Polk and Kramer 1994: 51; Dyck 1995: 307; Fitzgerald and Paterson 1995; Shearer and Davidhizar 1995). Whilst others have not distinguished these two terms, I have. Something not witnessed by routine powers of observation is not the same as that which is deliberately concealed or masked. In this study, both phenomena were manifest – but they were recognised as being different. 8 Issues that have been raised elsewhere include: the difference between appearance and reality (King 1981), the potentially serious nature of a disease such as lupus erythematosus, even given its invisibility to others (Kuper 1994: 26), the difficulties surrounding unseen illness at work (Cacioppe 1988; Tate 1991; Kantor 1991; Vickers 1998a; 1999a; 2000a; 2000b); the fact that some hidden conditions, such as psychosis, may constitute medical emergencies (Polk and Kramer 1994: 51), the revision of the self-concept, disruption of roles and lengthy adjustment processes involved (Falvo, Allen and Maki 1982: 3), the problems of the stigmatising nature of some invisible conditions (Scambler 1984; Leonard, Hocking and Leggatt 1989; Jacoby 1994; Nijhof 1995; Small 1995; Vickers 1997d; 2000b), the dilemma associated with the disclosure of invisible illness in the workplace (Vickers 1997a; 1997d), and the fact that chronic illness remains a neglected management challenge (Vickers 1995a; 1995c: 363) and one warranting long-overdue organisational consideration (Vickers 1995a; 1995c: 365). 9 Actually, whilst I use the terms invisible and unseen interchangeably throughout this work, one could argue a distinction here also. The knowing observer will often be able to ‘see’ illness that is invisible, through being tuned into the behaviour (or other indicators of illness) of that person in certain situations. For example, the knowing observer might note the deaf person lipreading, or the person with multiple sclerosis taking special care holding the railing when scaling or descending stairs. Thus, it is possible, in my opinion, to ‘see’ illness that is invisible. However, the stories reported here demonstrate how infrequently this actually occurs. Hence, the stickler might prefer the term unseen rather than invisible. I have chosen to use these terms interchangeably. 10 The difficulties surrounding social support, especially for sick people in organisations, are discussed at length in Chapter 7. 11 Any illness can be diagnosed and labelled (deviant) by a medical practitioner (Veatch 1981; Register 1987: 3; Turner 1987; Liggett 1988: 264; Nijhof 1995: 200), leading to all the problems identified with labelling theory (Gething 1984; Yelin 1986: 623–4; Turner 1987: 73; Liggett 1988: 275) and associated implications for the people in a normalising society. 12 Psychosocial disability is also invisible, and refers to the ‘repertoire of skills needed to function independently in the community … vocational/avocational, interpersonal relationships and living skills’ (Tate 1991: 25). Psychosocial disability, like memory loss, can have a profound and silent impact on affected individuals. 7

1 A silent problem 1

I am indebted for this idea to Professor Camilla Stivers, Cleveland State University, who was the Plenary speaker at the 10th National Conference of the Public Administration Theory Network. The theme of the conference was ‘Discussing the Un-discussable’. Professor Stivers spoke, almost as if directing her communiqué

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personally to me, beginning with the distinction of the two areas of the ‘undiscussed’. First, she reminded the audience that there are those issues that aren’t discussed that could be and should be. I agreed, inwardly, thinking hard about my work. Then she pursued what she described as the ‘constitutively un-discussable’ – those issues that we can’t always talk about; that defy our attempts to explain them. For example, the ‘other’ of otherness, the uniqueness of our own experiences, the necessary vagueness and ‘betweenness’ of relationships. Those things that cannot easily be communicated and the limits of our abilities to communicate them, including the difficulties of understanding the point of view of another, given that one can never truly occupy their place. These words (or, at least, my very best attempt at recollection from hastily scribbled notes) resonated with me so profoundly – on both counts. Certainly, this research is about an area that had previously been undiscussed and that could be and should be. However, the whys and wherefores of me conducting the research I found it difficult to explain, especially the overlap between my need to do this, as a professional researcher, a sick person, and a friend and colleague of many who had unseen illness. I also had an early sense that much of what I was confronting was difficult, for me and for others, to articulate. The seemingly parochial distinction between East and West is made deliberately. Eastern medicine and culture have a unique range of properties, treatments and cultural ethics, which should be explored at another time. It is widely documented that beliefs about death, disease and illness differ between cultures and are influenced by cultural differences (see, for example, Fabrega 1981a: 503; Helman 1990: 117; Good 1994: 52; Hooijberg, Price and Talsma 1994: 385) and socio-economic differences (Calnan and Williams 1992: 248–9). For example, the modern reliance on the grand-, master- or meta-narratives of ‘science’ as a source of legitimation (Lyotard 1979: 23; Connor 1989: 8–9; Boyne and Rattansi 1990: 16; Jameson 1991: xi) to achieve ‘objective’ truth in defining, legitimising and understanding illness, is characterised and confirmed by the biomedical or medical model (Freidson 1970; Mechanic 1978; Veatch 1981; Fitzpatrick 1984: 16; Thorogood 1992: 47; Blaxter 1995: 26; Nettleton 1995: 21). I will elaborate on this important aspect of the research journey in later chapters. However, it is important for readers to understand at the outset that it was considered vital to include my perspective as a researcher (Oiler 1982: 181; Swanson-Kauffman and Schonwald 1988: 103), particularly as an ‘insider’ or ‘intimate’ to the phenomena (Wilmot 1975: 59). Elements of the ‘postmodern consciousness’ (Gergen 1991: 111) had started to emerge at this early stage and without my being aware. The increasing acceptance of a multiplicity of perspectives demanded that I stray from the straightforward, modernist, structured, bordered, ordered, simplistic, ‘truth-seeking’ discourse. What unfolded, instead, was the dissolution of these borders through the most creative use of multi-disciplinary knowledge that I could muster: an eclectic blend of structure and stream-of-consciousness; of rich stories overlaid with current, and extant, theoretical groundings; and, of multiple perspectives, theirs and mine. Many authors have noted this. For example, Kubler-Ross (1969: 2), Fitzpatrick (1984: 20), Gould (1985), Turner (1987: 8), Helman (1990) and Nettleton (1995: 11). Some may reasonably argue that only spurious conclusions can be drawn from these figures, given the regional, definitional and statistical reporting differences. I could respond by citing other sources that confirm chronic illness is increasingly problematic in the West due, in part, to increasing longevity arising directly from improved treatment of acute and life-threatening conditions (Bates and Lapsley 1985: 193–4; Gould 1985: 4–7; Turner, 1987: 8; Nettleton 1995). However, I take this opportunity to remind readers that this research is anti-positivist. The statistics included are purely to elucidate and exemplify this potential problem, rather than to ‘scientifically’ and unequivocally prove it.

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Problems associated with employment for people with disabilities have long been explored. For example, Safilios-Rothschild (1970), Blaxter (1976), Junor (1985), Nothdurft and Astor (1986), Yelin (1986; 1989), Buhler (1991), Navran and Zibula (1991), Robins (1991), Weisenstein and Koshman (1991), Gilchrist (1992), LaPlante (1992), Rayner (1992), Hooijberg, Price and Talsma (1994), Klimoski (1994), Jones and Stone (1994), Klimoski and Donahue (1997) have all written about various employment difficulties and issues. 8 It is relevant here to also mention the experience of the United States of America (USA) where, similarly, prior to the Americans with Disabilities Act (ADA), a melange of disparate programs was also administered on a state-by-state basis (Putney and Atchley 1994: 25). The ADA was regarded as a potential catalyst for initiating change in the US community, not just in the employment and judicial setting, but with the spirit of the law enabling opportunities to open for qualified individuals (ibid.: 26). Unfortunately, there have been some unintended and unforseen side effects of the ADA. For example, it has been suggested that the fear of litigation resulting in this legislation may actually increase discrimination against the disabled, rather than reduce it (Klimoski 1994). Despite the passage of the ADA, the proportion of individuals with disabilities who are working actually declined between 1986 and 1994 (ibid.: 110). There is also a lack of understanding by many of the implications of the legislation (Bento 1994: 12) with over 63,000 employment discrimination claims filed in the first four years of the ADA’s existence. Charges involved diverse issues of hiring, accommodation, harassment, benefits, but most especially, allegations of wrongful discharge (which accounted for 52 per cent of charges) (Klimoski and Donahue 1997: 110). 9 Unfortunately, I found comments like these nauseating and patronising. They remain, sadly, characteristic of the attitudes of community members, business leaders (and academics). I have elsewhere described other people’s attitudes as ‘the most malignant disability’ (Vickers 1994: 67) and have included the comments above deliberately, as part of the conceptual attitudinal map. They portray the ubiquity of these attitudes towards people with illness and disability, even from those who purport to be on their side. The attitudes of ‘normals’ remain a barrier for the disabled in the workplace (LaPlante 1992). Indeed, they are the major problem facing those with disabilities and chronic conditions in the workplace (Kantor 1991). 10 Marx wrote of the worker’s self-estrangement from the human essence, both from others and from oneself (Marx 1975/1994: 389). Blauner (1964) wrote of alienation in the workplace and the dichotomy of happiness and unhappiness in human relations, with alienation being regarded as a function of powerlessness, meaninglessness, isolation and self-estrangement (ibid.: 1–3). Blauner was strongly influenced by the Marxian hypothesis of the alienated worker and was one of the earliest writers to attempt to dispel the myth of the ‘happy worker’. Fromm (1963/1994: 394–5) also wrote of the alienated worker, whilst Braverman wrote of the degradation of the work process, where production units (workers) were seen to operate like a hand: watched, corrected, controlled by a distant brain (management) (Braverman 1994: 385). 11 Those interested in reading more about the lifeworld may wish to consult, for example, Kvale (1983: 184 and 195), Cohen (1987: 33), Good (1994: 116), Dyck (1995: 307) and Nijhof (1995: 193). 12 This section is not intended as a critique of capitalism. Such a discussion would require a book in itself and would certainly demand a heavier emphasis on critical theory (and consulting more widely, for example, Fromm 1942/1960; 1956; 1962; Adorno 1951; Marcuse 1964; Giddens 1982; Habermas 1987; Agger 1992; Therborn 1996: 56) as explored by the Frankfurt School (see Gouldner 1976; Burrell and Morgan 1979: 291; Denhardt 1981: 60; Agger 1992) under the leadership of Max Horkheimer (Denhardt 1981: 60). At its core is the ‘Marxian concept of

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exchange’ in a capitalist society (Therborn 1996 : 57); the positivist debate (Burrell and Morgan 1979: 291; Therborn 1996: 58); the problems of capitalist, bourgeois, money-focused organisations (Adorno 1951: 34); and technology being seen as a political force and an increasingly effective means of domination and social control (Burrell and Morgan 1979: 293). What is intended here, instead, is to underscore only those aspects of capitalism which were viewed as concerns for people with unseen chronic illness as they live and work. 13 One particular respondent actually reported, when talking about her problems with chronic fatigue syndrome, that no matter how much she ‘tried’ to get well, her failure to get better was not well received by some of her friends. She commented that she was considered, by others, not to have been praying enough, thinking positively enough or trying hard enough. This is a classic example of how responsibility may be unfairly and unreasonably placed on the shoulders of the sick person. Some non-sick people will insist that one can pray, think or try their way out of disease problems. The outcome for the sick person may be frustration with themselves and their ‘weakness’, a greater sense of aloneness in their experiences, even guilt, when they are unable to summon sufficiently positive thoughts to rectify their situation. 14 However, legally, businesses and public enterprises pay little attention to the health of their employees at their peril. For example, the Australian Occupational Health and Safety Act 1991 (Brooks 1993) demonstrates that employers have a bona fide obligation not to further exacerbate an existing illness or disability. This issue was tested in Australia with the case Zanardo v. Continental Check Point Pty Limited where the question of reasonable foreseeability was raised with a worker who was susceptible to hearing impairment at a level of noise that would have affected only 3 per cent of the population. Australian employers may be surprised to learn that the Supreme Court of New South Wales (Court of Appeal) found that, even if the condition is only found in approximately one in every 33 persons in the community, this is significant enough to warrant consideration from an employer: If there is a greater risk of injury to a worker with a disability, in that the injury is more likely to happen because of the disability, then the accident to that worker may be reasonably foreseeable even though it would not be foreseeable as happening to another worker. (Brooks 1993: 56) 15 Paradoxically, people with unseen chronic illness may be considered by others to be ‘good’ physical specimens; ‘normal’, even ‘attractive’, by current Western social standards. This is ironic, given that the reality of life may be considerably different. The visual paradox adds to the burden of expectations, providing an ever-widening gulf between what is ‘seen’ and what ‘is’. 16 For more examples of the medical profession reinforcing this social intolerance of the unusual (or, indeed, the usual) through performance of cosmetic ‘miracles’, refer to Finkelstein (1991: 92–9). The dominant postwar symbol is a healthy and sexy body, achieved at great cost (physical, emotional and financial) to the individual (Siebers 1994: 30). The recent penchant for commodification of the body ‘to display power, prestige and status’ (Finkelstein 1991: 4) is utilised to great advantage by a medical profession who are ready, and armed, with the appropriate ‘remedies’. 17 For example, D.H. Lawrence’s (1960) Lady Chatterley’s Lover (described in Battye 1974: 93–4) demonstrated societal mistrust, pity and disdain towards ‘cripples’. Kesey’s (1962/1973) One Flew Over the Cuckoo’s Nest illustrated institutionalisation and maltreatment of those who did not fit in. Biblical references describe the need to expel ‘unclean people’ (Good News Bible 1976: Numbers 5.1–4). Also, American comedian, Paul Reiser, suggested that we idolise the cute and penalise the unattractive. He reminds readers that ‘we get all upset when dolphins get caught in tuna nets, but no

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one cares about the 10,000 dead tuna on the same boat. Little ugly tunas, one on top of the other, screaming for help’ (Reiser 1994: 292–3). Actually, many of the able-bodied find it inconceivable that someone who is paralysed can experience a life worth living (Morris 1995: 108). This may be because social efforts to help the disabled could be construed as trying to make disabled people ‘normal’ (for example, through technology usage) in order to result in less discomfort for the able-bodied around them (Galbally 1988: 8). Efforts to make people walk involving experimental, painful (and often hopeless) spinal procedures provide a case in point. Readers interested in reading a more complete review of the literature related to stigma and illness may wish to consult Vickers 2000b:134–7. Others have described achieved stigma previously as behavioural deviance (Becker 1963; Berger and Luckmann 1966), deviant conduct (Erikson 1964: 10–11) or nonillness deviance (Fabrega 1981a). It is a property ‘conferred upon’ the person by the social audience (Erikson 1964: 11) as a result of chosen activity that is deemed unacceptable. Traditional examples of achieved stigma would include criminal activities, promiscuity and drug use. Illnesses attracting achieved stigma, such as HIV, lung cancer or cirrhosis of the liver, are frequently believed to be ‘God’s punishment’, a form of instruction to the soul and deserved by the bearer (Scott 1974: 108; Sontag 1977: 46; 1988: 25; Turner 1987: 21; Saylor 1990: 66). However, it must be remembered that these illnesses can also be contracted through no fault of the bearer. For example HIV can be transmitted via blood transfusion or needle stick injury, and lung cancer can develop without connection to smoking. Felt stigma is the stigma felt by the individual (Scambler 1984; Jacoby 1994: 270; Nijhof 1995: 201) and may be explained, in part, by the psychology of impression management (Forgas 1985), the playing of social roles (including hiding the self or staging a presentation) (Wilmot 1975: 50) or ‘persona presentation’ (Harré, Clark and De Carlo 1985: 144) which demonstrates the importance of ‘how to appear in public, how to put on the best show, to demonstrate the best persona, to be ascribed the right kind of personality’ (ibid.). People who feel stigmatised may feel an almost desperate need to ‘pass’ as normal (Goffman 1963; Kleinman 1988: 161) and nothing exists to protect people from the shame of a stigmatising condition (Ibid.: 168). Enacted stigma, or discrimination, has been well documented against those with visible disabilities (see, for example, Treves 1923/1980; Safilios-Rothschild 1970; Nothdurft and Astor 1986; Cacioppe 1988; Noel 1990; Kerr 1992; Rayner 1992; Dean 1993; Singer 1993; Klimoski 1994; Jones and Stone 1994; Klimoski and Donahue 1997). However, as we will see, there is evidence that enacted stigma also occurs for those with invisible chronic conditions as well. Discrimination does take place against those with invisible conditions. Evidence of this can be found at a broad level, for example, in work by Safilios-Rothschild (1970), Scambler (1984), and Jacoby (1994). However, there have also been more specific examples of discrimination reported against those with invisible conditions such as AIDS and/or HIV (Cacioppe 1988; Stone 1994: 55; Small 1995), multiple sclerosis (Kantor 1991), schizophrenia (Leonard, Hocking and Leggatt 1989) and epilepsy (Scambler 1984; Jacoby 1994). Many have reported the importance and influence of lay ‘beliefs’ about illness (see, for example, Freidson 1970: 283; Fitzpatrick 1984: 17; Kleinman 1988; Thorogood 1992: 48; Klonoff and Landrine 1994: 408; Archer 1995: 89; Helman 1995: 18; Nettleton 1995: 39). These are also referred to as lay ‘concepts’ (Fitzpatrick 1984: 11), ‘folk understandings’ (Fabrega 1981b: 139; Helman 1995: 18), ‘folk epistemology’ (Good 1994: 116) or ‘commonsense beliefs’ (Klonoff and Landrine 1994) about

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illness. Lay beliefs are heavily ethnically and culturally influenced (Fitzpatrick 1984: 11–12; Turner 1987: 54; Kleinman 1988: 100–20; Helman 1990: 117; Klonoff and Landrine 1994: 408), gender influenced (Helman 1990: 130), socially and ideologically influenced (Nettleton 1995: 46). They may be very complex and multifactoral (Fitzpatrick 1984: 17). They are also frequently problematic, illogical, inconsistent, seldom formalised and syncretic in origin, and may be adjusted according to the current concerns of the individual (ibid.: 17–18). They frequently affect health behaviour (Nettleton 1995: 39), health maintenance and disease prevention behaviours (ibid.: 44), and lifestyle (ibid.: 49). They serve as a non-professional basis for understanding and action towards illness, as we will see. Once again, the distinction is made between Western and non-Western medicine. Non-Western medicine has a unique range of properties, treatments and cultural ethics (Foster and Anderson 1978: 123–41) that were deemed to be beyond the scope of this investigation. However, use by respondents of non-Western remedies was not precluded. Talcott Parsons (1951) was the first to articulate the notion – and benefits – of the sick role (see also Mechanic 1978; 1981: 486; Lambert and Lambert 1979: 2; Fabrega 1981a; Becker and Rosenstock 1984: 186; Harrison 1984; Yelin 1986: 623; Turner 1987: 45–6; Curtin and Lubkin 1990: 13; Morse and Johnson 1991: 2; Nettleton 1995: 70). The sick role includes a definition of illness behaviour, as prescribed and enforced by society, as the set of societal expectations of the individual in this role and the set of norms associated with it. According to Parsons’ analysis, when a person’s illness has been legitimised by medical sanction, or that of intimates and/or persons having influence over them, that person occupies a special role in society. During the time of the illness, they may be relieved of usual demands and obligations. The ‘sick role’ takes priority. Moreover, the person is expected to seek help in restoring their full energies and to co-operate in the treatment process. Persons may be motivated to adopt the sick role to obtain release from various kind of responsibilities. Society assigns the sick role to those who have been evaluated as having the aberrant or ‘bad’ characteristics associated with being sick (Veatch 1981: 526). However, there are also those who fear the dependence of the sick role or who are suspicious of physicians. These individuals avoid seeking medical advice even when serious symptoms appear (Mechanic 1981: 486). James (1869/1950; cited in Goffman 1974b: 2) asked, ‘Under what circumstances do we think things are real?’ Along these lines, I have asked, under what circumstances do we think illness is real? Western perceptions of the ‘reality’ of illness seem totally dependent on the sanction of the medical profession and the inherently positivist approach to illness definition. Accordingly, if illness is not diagnosed, it is deemed not to exist. This rule seems to apply in community, family and organisational life. However, the medical profession’s ability to ‘see’ (read diagnose) illness is limited to current medical ‘knowledge’, diagnostic efficacy and medical technology. If physicians cannot ‘see’ illness, having performed the battery of currently available tests, then it is presumed non-existent. This provides an interesting parallel with the starting point for this work. Both medical and social ‘diagnoses’ rely on one’s ability to ‘see’ illness. If one cannot ‘see’ illness, it does not exist. In the case of medical diagnosis (as opposed to ‘social diagnosis’) the medical practitioner’s sense of ‘sight’ is merely extended through the use of current technology (Vickers 1999b). Iatrogenic disease or illness (Illich 1975; Gould 1985; Archer 1995: 28; Garrett 1995: 447–8), a term first coined by Ivan Illich (1975), is disease resulting from treatment, either as an unforeseen or an inevitable side effect (Martin 1990: 341). Examples of this might be side effects from drugs taken, inexplicable and continuing pain after an operation, or procedures that make the underlying illness worse. Sadly, as the stories later will confirm, iatrogenic illness is still a significant problem for people with

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chronic conditions. This is despite the ‘first commandment’ of Western medicine which is Priumu non nocere (First, do no harm) (Szasz 1977/1988: 1). 30 Unfortunately, the public record is littered with examples of pernicious inhumanity at the hands of the medical community. They are too numerous to describe here. Interested readers may wish to consult, for example, Treves (1923/1980), Brown (1954), Foucault (1961), Goffman (1961), Szasz (1970; 1980), Illich (1975), Gould (1985), Helman (1990), Ferguson (1991), Konner (1993) and Archer (1995). 31 I would be delighted to report that this patronising and infuriating practice had come to an end but I am inclined to think otherwise. My own experience, at age twentyone, was that a suspected diagnosis of MS was withheld from me. It was about eight years later that the final diagnosis was made. During those passing years, I could have used this essential (albeit unconfirmed) information to have influenced career, health and lifestyle choices, which may (or may not) have altered the course of the disease or my quality of life, both then and now. Unfortunately, these choices were effectively and completely taken from me by two of those closest to me – my parents – who were practising medical professionals at the time. In trying to understand the motives for this behaviour and my (initially, very angry) response to it, a quite unusual situation became apparent. My parents were both medical practitioners. As such, they were necessarily imbued with the doctrines and ideology of their profession. I am certain that, at the time, they believed that they were doing the ‘right’ thing for me, having had, presumably, much experience in upholding the medical profession’s ‘code of silence’ for the ‘benefit’ of others. The extraordinary situation existed where my parents became the conduits of information from the doctor (neurologist) treating me all those years ago. I was effectively separated from the primary information source by my anguished parents. My opportunity for adult and efficacious decision-making was silently taken from me. My recollection is that all diagnostic information was relayed through my parents (colleagues of the neurologist), who took it upon themselves (probably unconsciously) to act as a ‘filter’ on my behalf. However, I must add that, as I was also an adult at the time, it is extraordinary that I allowed this to happen. Some reference to Freud’s Oedipus complex (Freud 1963/1974; Kline 1984: 10; Simon and Blass 1991: 161) seems relevant. I refer specifically to the complex associated with the entire range of feelings the child may experience in relation to their parents, including the interactions they may have with them (Simon and Blass 1991: 161). As children devote themselves to the great task of detaching themselves from their parents (Freud 1963/1974: 380), as one moves, with maturity and understanding, from a ‘parent–child’ relationship to one of ‘adult-to-adult’, it is argued here that when the crisis of illness confronts the actors involved, the ‘daddy-mommyme triangle’ (Deleuze and Guattari 1984: 51) may re-emerge. The forces of parental anguish, professional ideology, Freudian defence mechanisms (repression or denial) and whatever else, have long since been forgiven. Even when the spectre of illness arises, we now strive to approach these challenges with an ‘adult togetherness’ rather than a ‘parent–child’ distance – with varying degrees of success. 32 These ‘human costs’ are increasingly emerging in the literature. They include, for example, the rise of greed and bullying (Rees 1995b: 197), the dehumanising nature of organisational, capitalist-based ‘success’ (Ibid.: 204), a loss of social conscience (Ibid.: 206), feelings of betrayal in organisational life (Solondz 1995: 212; Temby, Richardson and Howe 1996; Morrison and Robinson 1997), a loss of trust in organisations (Britton 1995: 225; Morrison and Robinson 1997: 227), a focus on instrumental, as opposed to non-instrumental, ethics in business (Quinn and Jones 1995: 23–5), cronyism (Rees 1995b: 207), unemployment (Ibid.: 209; Temby, Richardson and Howe 1996), feelings of job insecurity (Rees 1995b: 209; Solondz

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1995: 218), a persistent sense of powerlessness (Rees 1995b: 209), and, problems of stress, fatigue and anxiety at work (Britton 1995: 221; Rees 1995b: 209).

2 An insider’s methodological journey Sanday (1983: 34), Field and Morse (1985: 12), Leonard (1989: 41), Minichiello et al. (1990: 23), Baker, Wuest and Stern (1992), Cohen and Omery (1994: 136), Dreher (1994: 281), Stern (1994) and Koch (1995: 827) all make mention of this point. 2 For further discussion of this important point, please refer to Cohen (1987), Leonard (1989), Baker, Wuest and Stern (1992: 1357), Boyle (1994), Cohen and Omery (1994: 136), Ray (1994: 117) and Stern (1994). 3 I have deliberately included this section in an effort to comfort new researchers. So often, our research journey takes us along blind alleys. 4 Boyle (1994: 169) described a classification of ‘types’ of ethnographies, including: processual ethnographies; classical or holistic; particularistic; cross-sectional; and ethnohistorical. Boyle (Ibid.: 174) also described other distinguishing characteristics of ethnographies including binary, spatial or geographical, linguistic and theoretical ethnographies. My head was spinning. 5 For further discussions regarding stigma and illness, please refer to Nijhof (1995: 196); Falvo, Allen and Maki (1982: 5); Scambler (1984); Vickers (1997d; 2000b). The choice of disclosure may change when a special, trusting relationship has been developed (Van Maanen 1983: 46). However, in organisational life this still may present problems. 6 Another of the principles of data collection that Yin (1989: 95–103) proposed included the need to maintain a chain of evidence, which is dealt with in the next chapter. 7 As part of the data-gathering process, interviewees were asked if they had any documentation they thought was relevant, especially surrounding problems they had experienced in the workplace. These were not to be used as ‘validating’ sources, but as exemplars only. For example, I was interested in viewing documents relating to employment, dismissal or superannuation medical examinations. However, just one respondent had a letter of dismissal she felt was relevant, but was unable to find it. 8 Along these lines, it was suggested that I also interview ‘knowing others’ (Goffman 1963) within the organisation, to gain another perspective, another view of the phenomenon under review. However, I felt that the need for verification presented problems for me as a researcher who valued the interpreted experience of the informants. It was felt to be a managerialist intrusion to conclude that the informant’s interpretation or experience was somehow incorrect or incomplete. It was also perceived to contravene directly the existentialist underpinnings presented here. It was my contention that a ‘knowing other’, or any other, was unlikely to have a great deal of understanding of what is experienced by the respondents (let alone a better one!). 9 See, for example, Sanday (1983: 20) and Van Maanen (1983: 38). 10 Further, ethnography generally requires a long residence in the culture (Sanday 1983: 19; Lipson 1994: 346) in order to understand it. The extended nature of participant observation, with at least a year needing to be devoted to the task (Sanday 1983: 20) for any effective cultural analysis, made it financially difficult for a full-time student to embrace, though its value was acknowledged. 11 The German phase actually resulted in three approaches: the Husserlian (descriptive or eidetic) approach (Ray 1994: 118), the Heideggerian (interpretive and ontological) approach (Leonard 1989: 55; Cohen and Omery 1994: 140; Ray 1994: 118) and the ‘Dutch school’, which combined the Husserlian and Heideggerian approaches (van Manen 1990; Cohen and Omery 1994: 149). Because of my preference for 1

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Heidegger’s work (which will be explained shortly), I was most interested in distinguishing these varying approaches, rather than combining them. Understanding the experiences of each individual on their own terms is the fundamental objective of phenomenological inquiry. The phenomenological model portrayed in later chapters demonstrates many elements of generalisability of themes and common structures of experience (Oiler 1982: 181; Omery 1983: 60; Barritt et al. 1984: 13; Swanson-Kauffman and Schonwald 1988: 104; Osborne 1990: 80; Sandelowski 1995: 372). It also, importantly, incorporates the unique experience. This seems a good time to provide a rejoinder to those who regard Heidegger’s work as anti-humanist. It is important to distinguish Heidegger’s early and later work, especially, to note that it was his early metaphysical explorations in Being and Time (1927/1962) that the philosophy and methodology employed here are based upon. Heidegger’s early philosophy was centred around questions of metaphysics and questions regarding the being of entities in general. Over time, there was a substantial shift in Heidegger’s thought, away from the metaphysical towards the mystical, encouraging what he described as an ‘end of philosophy’ (Caputo 1986: 1). The much-debated absence of ‘humanism’ in Heidegger’s later thought provoked Versényi (quoted in Caputo 1986: 42) to argue that ‘because his thought is “a kind of negative theology and mysticism” … his only message is the rejection of all human experience and thought’ (ibid.). This anti-humanistic vein is not one sought nor embraced here, nor one that, in my opinion, rules out the value of his earlier work. Gadamer was strongly influenced by Heidegger in that Gadamer’s hermeneutics were also about ontological understanding; about being-in-the-world. Gadamer, like Heidegger, believed that the interpreter’s prejudices cannot be bracketed during the process of interpretation and suggested that the interpreter should be aware of one’s own prejudices through the process of self-reflection (Walters 1996: 97; Gadamer 1975; Heidegger 1927/1962) – which is what I endeavoured to do. The reflexivity required by the researcher (Steier 1991b: 163; Sandelowski 1993: 214; Boyle 1994: 165) is demonstrated here via the numerous personal vignettes shared along the way. Those interested in reading more about the researcher’s perspective (including its potential dangers) might wish to consult Oiler (1982: 181), Swanson-Kauffman and Schonwald (1988: 103), Etter-Lewis (1996), Josselson (1996) and Price (1996) on this point. The concept of ‘bracketing’ (Schutz 1932/1967: 43; Oiler 1982: 179; Omery 1983: 50; Swanson-Kauffman and Schonwald 1988: 98; Drew 1989: 437; Wilkes 1991: 233; Sandelowski 1993: 215; Koch 1995: 830; Street 1996a: 51; Walters 1996: 97) or ‘objectivity’ was central to the Husserlian strategy (Koch 1995: 830), and was deemed an anathema to this study. I found it impossible to imagine that I would be able to set aside what I had personally lived in an effort to be more ‘objective’ – a notion that I didn’t agree was feasible, and one that was not philosophically in keeping with the research objectives stated or the paradigm chosen. There were, fortunately, others who questioned whether the bracketing and ‘objectivity’ required in transcendental phenomenology was actually possible (see, for example, Lyotard 1979; Mackie 1985: 32). Thus, Heidegger’s path became increasingly enticing. However, I became increasingly aware of the differences between the methods purported to be grounded theory. Stern (1994: 213) referred, for example, to the methodological differences between Glaser and Strauss’s work. They originally, jointly, developed the methodology described in their book The Discovery of Grounded Theory (1967). However, their separate approaches are now referred to as grounded theory (for the Glaserian school) and conceptual description for the Straussian school (Stern 1994: 213). This, of course, does not cover the myriad of unclassified approaches taken by numerous researchers that may correctly, or incorrectly, be identified as grounded theory – a point also underscored by Stern (ibid.: 212).

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18 Even when one considers the cultural influences on Heidegger’s life, it is difficult to ignore the question mark hanging over Heidegger’s reputation as Nazi conspirator and anti-humanist (Champagne 1995: 27). There are those who oppose Heidegger’s phenomenological approach because of his past association with Nazism (Bernasconi 1993: 56). As has been explicated above, it is Heidegger’s early work that is embraced as foundational; the Being and Time philosophy, rather than the later, more mystical and much criticised, post-Nazi Heidegger. It is, however, impossible to simply dismiss the ‘Heidegger affair’ (Caputo 1986: 31; Lyotard 1990: 4) as irrelevant. For those unfamiliar, the affair concerns his politics which were denounced, not so much for embracing Nationalist Socialism, but for keeping silent about the extermination of the Jews (Lyotard 1990: 4). Lyotard describes this as ‘a mute silence that lets nothing be heard. A leaden silence’ (Lyotard 1990: 52). Lyotard is dogmatic: ‘If a great thinker, then not a Nazi; if a Nazi, then not a great thinker’ (ibid.), contending that one cannot possibly acknowledge the coexistence of the two faces of Heidegger (ibid.: 53). It is also noted that followers of Heidegger are frequently enthusiasts who disregard such critiques as ‘misunderstandings’ of Heidegger (Caputo 1986: 31). Others may explain that Heidegger’s relationship with the Nazis was a logical and necessary move, in direct response to his arrogance and his nationalism (ibid.: 32). Whatever one concludes about Heidegger, his politics, his shift to anti-humanist thought and his silence on the ‘Jewish question’, the notion that one must automatically dismiss the work of a great thinker on the basis of his political leanings is rejected here. One may not necessarily endorse Heidegger’s politics, but accept a coexistence (as did Carroll 1990: xxi), albeit a perplexing and discomforting one. One can distinguish between a person’s politics and their being and, it is noted that other writers have also been incorrectly associated with their politics. Nietzsche, Jefferson and Heidegger have all had politics attributed to their writings that differed from the ones the original signature intended (Champagne 1995: 31). It seems reasonable, especially given a postmodern consciousness, to separate and recognise the complexities, the ambiguities and the contradictory nature of the human psyche. This contrary phenomenon is also reported in association with the respondents’ lives. If it is accepted in their case, then one must surely extend this liberty to Heidegger’s life as well. Finally, one must ponder what life may have been like for a German philosopher, as rector at a major university during the rise of the Nationalist Socialist Party in Germany pre-World War II. In doing so, some attempt must surely be made to consider these events (as much as it is possible) outside of current ideologies and the benefits afforded by hindsight, and to winnow out emotion, prejudices and judgements that necessarily surround the tragedy of the Holocaust (Vickers 1997a). 19 The same could be said when considering other existentialist phenomenologists, such as Sartre, Schutz and Merleau-Ponty (Burrell and Morgan 1979: 243).

3 Doing research – from the inside 1

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I have preferred to value a subjectivist standpoint for its own sake. However, I highlight other approaches for those interested. For example, Kvale’s response to the common objection that qualitative research is not objective, but ‘merely’ subjective, was to demonstrate the fallacy of intersubjectivism. Kvale argued that ‘the sheer number of observers reporting the same phenomenon is no guarantee of truth’ (1994: 152) and that objectivity may also be measured in terms of truth, reality and goodness (ibid.: 153). These views might be helpful to others undertaking qualitative research. However, I clung tenaciously to the view that a subjective perspective had value in its own right. Some have argued that reliability is increased by asking expert colleagues to review transcripts, with the suggestion being that this will assist the informants in validly

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sharing their experience (see, for example, Swanson-Kauffman 1986: 66). However, I chose not to do this. I felt that my ‘insider’ status made it impossible for ‘outsider’ colleagues to come up with better or more helpful interpretations than I had formed. I asked myself: how could they possibly come up with more reliable interpretations than I could when they weren’t in the room during the interview? Further, how could they understand the informants’ experience better than I did if they had no knowledge of illness, especially unseen illness? To my mind, their interpretations would have been less reliable than my own. Having said that, I remained acutely aware of my inexperience as a researcher, but pressed on regardless, trusting my illness ‘experience’ to be crucial to this study and assisting in its reliability. I endeavoured to adhere to Yin’s suggestion, setting out as carefully as possible exactly what transpired. However, it should be recognised that if I were to undertake this study again now, when my life has moved to a different place, it is doubtful that the research conclusions would be the same. However, the process and decision points can be and should be able to be followed though – hence the level of detail included. Construct validity involves establishing correct operational measures for the concepts being studied. Internal validity requires establishing an internal causal relationship and, as such, is not suitable for an exploratory study such as this one. Finally, external validity requires that one establish the domain to which one may generalise the study’s findings (Yin 1989: 40–4). I concerned myself later with the question of generalising one’s findings. Emic data refers to those data derived from the informants and addresses the ‘meaning’ that informants ascribe to phenomena (Dreher 1994: 290). Emic and etic refer to differing modes of understanding. The emic mode is the ‘native’s’ perspective, their relation to life and their vision of the world (de Laine 1997: 45). Etic analysis, on the other hand, refers to the development of the model from the analyst’s perspective (ibid.: 46) and is unlikely to be pursued by a researcher who is an insider. Etic analysis is more likely to be associated with research undertaken by those seeking a more ‘objective’ perspective. I arrived at this seemingly simple decision after a great deal of thought. I had to decide very carefully how to focus my study, especially given my anti-reductionist choices. Was I, for example, more interested in the stories of women than men? Was a certain age group of wider interest? Did I want to study people who worked in public or private institutions? Or, was I more concerned about an industry subgrouping? In the end, I returned to the philosophical underpinnings of this work. Given that phenomenology seeks understanding of people’s lives and experiences – from their perspective – it was the stories of those lives that were sought. It was their experience of life and work with an unseen chronic illness that held my interest. I persevered with my belief that this had value. However, as I listened to other researchers presenting their progress, at conferences, colloquia and symposia, I remember feeling quite alone in my efforts (except for the occasional paper I came across). I became equally certain that I was taking a risk. What I was doing was not how organisational research was routinely conducted. In Australia, all universities are required to abide by statutory obligations requiring the careful scrutiny of all research involving human participants. I am unsure how I might better phrase this. As I re-read the previous few lines, I cannot help but visualise myself thrusting referrals for psychologists into the faces of sobbing respondents. It wasn’t like that. Referrals were never used, but it was reassuring to be prepared. The question must be addressed as to whose authority should be paramount in the research. It is widely accepted that interpretive authority normally resides with the researcher. There are also those who encourage researchers to seek the feedback of participants on their interpretations (Miles 1983; Swanson-Kauffman 1986; Morse 1994; Peterson et al. 1994). If interpretive authority is retained by the researcher, this

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carries with it the implicit understanding that research will be conducted ethically, honestly and transparently (Vickers 2000c). It also allows decisions about what remains and what is cut, to remain with the researcher. However, with the privilege of choosing what is included, comes the ability to leave out many of the mistakes, blunders, failures, regrets and disasters that take place in organisational research. These are the aspects of research that, frequently, don’t get published (Price 1996: 207), calling into question the accuracy of ‘knowledge’ that reaches the mainstream. Feminist methodologists have challenged the conventional hierarchy of researcher and researched in their attempts to resist the potentially exploitative aspects of the research relationship through raising questions about authorship and ownership of the research (Chase 1996: 49). However, I had chosen to include many of the blunders, trials and decisions that were made along the way. With that in mind, I became more comfortable with my decision to retain interpretive authority. I chose not to have respondents review and edit transcripts or interpretations. I was aware that, as a researcher, the outcome might well have been the imposition of my themes and ideas on the experiences of another (Price 1996: 213). However, given the peculiarities and necessities of this research journey, I felt that it was impossible to do otherwise. There was also the very real pressure on me to find work, which will become clearer as this volume unfolds. I clearly understood that, in terms of finding work, a completed PhD was a much stronger employment vehicle than one that was ‘almost finished’. There was a point when my ‘special’ vantage point – my ‘insider’ perspective – became overwhelming. The deliberate seeking and valuing of subjectivity and proximity was not an easy thing for me to continually engage with. I became conscious of the development of a cynical, ‘hardened’ edge in response to my tumultuous life events unfolding in parallel with the research effort. I observed a definite (if unconscious) attempt to distance myself from informants’ pain, especially during the main study and when performing the ongoing analysis. I was reminded of Whyte’s (1955) experiences as reported in Street Corner Society (cited in Field and Morse 1985: 119), where the researcher engaged in various strategies as a process of survival. I was trying to survive. It was important to acknowledge the impact that events unfolding in my life were having. This is another attempt to declare the vagaries and imperfections of the research experience. After receiving no responses to this advertisement, deep reflection (even panic?) resulted. I thought that the following were contributing factors. First, the notice had been heavily edited prior to publication. The planned heading was changed and any description of what constituted an ‘invisible’ illness, or of its workplace context, was deleted. Second, the term ‘chronic illness’ was used. The wide variation in lay understandings of ‘health’ (Blaxter 1995: 25) and ‘illness’ (Parsonson 1989: 217) may well have translated into wide variations in perception. There was also concern that many with unseen illness would not have regarded themselves as ‘sick’ (Stone 1995), with the invisibility of the condition being translated, consciously or unconsciously, into one that is trivial (Whittington and Wykes 1989: 30; Stone 1995). Third, the circulation, being small and directed to Australian Human Resources professionals, was perhaps not the most appropriate placement for such a notice. Fourth, potential respondents may have felt that their privacy was at risk. Finally, potential respondents may have wished to avoid being reminded of their illness and associated issues, choosing (consciously or unconsciously) a defence strategy of ‘repression’ (Oldham and Kleiner 1990) or ‘denial’ (Parsonson 1989: 212; Oldham and Kleiner 1990) to secure their illusion of ‘personal invulnerability’ (Raphael 1986: 30). It is important to realise that the process described here was not risk free. Error in selection was possible given the peculiarities and ambiguities of social discourse. For example, intermediaries may have incorrectly identified informants, for example, by

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not realising they no longer worked, or by suggesting a person whose illness was or had become very visible. Fortunately, all introduced respondents met the criteria and were prepared to participate. It was gratifying to find that all consent forms and surveys were either promptly returned by mail or brought to the first interview. Reminders or follow-up phone calls were never required. This indicated a level of interest and commitment on the part of participants that was very humbling. It was originally planned that the second interviews would be held approximately four weeks after the first, to allow time for transcription, analysis, coding and review of interview questions. However, four weeks was found to be far too long between interviews, both for the researcher and the respondents to have clear recollections of what was discussed during the first interview. Consequently, during the main study and towards the end of the pilot, second interviews were scheduled one week after the first whenever possible. This had the added bonus of forcing me to complete a swift transcription and initial analysis to be ready for the next interview. It also assisted with the necessary ‘immersion’ in the data required for qualitative analysis. Necessarily, no more than two or, possibly, three interviews were scheduled over the course of a week. Follow-up phone calls had also been suggested by SwansonKauffman (1986) and Minichiello et al. (1990: 251) in order to clarify facts, events or meanings or further explore issues of importance. However, these were never used. I preferred to maintain the face-to-face contact and have the discussion taped. However, this was not always what happened, as noted later in this chapter. I found that during the interview, I was so busy remembering to check the tape, set the alarm, explain what was going to happen, ask respondents if they had any questions, collect the consent forms, listen to and engage with respondents, think about the next question and try to stay reasonably composed, that some valuable points were missed at the time of interview. It was later, when I was reliving the interview whilst transcribing and doing the initial analysis, that I would be ‘hit between the eyes’ with a comment, a phrase, with the auditory evidence of emotion and, especially, with what had been left unsaid. I found the process of personally transcribing the interviews time-consuming but incredibly worthwhile. One respondent, in particular, was very upset after the first interview, although this wasn’t known to me until I arrived for the second. She ‘shared’ her feelings with me then. The interview process, understandably, had dredged up vast amounts of emotion for her, and her anger was, naturally, directed at the person who was responsible for this – me. I managed, with some difficulty, to maintain my composure during what I perceived at the time to be an attack on my professionalism, humanitarianism and ethical deliberations. After listening carefully to her response and offering her the option of not going ahead with the interview, we proceeded with the interview. However, I felt agitated throughout and pressured to hide that agitation and remain calm. As a result, I was conscious of being rather distracted throughout. Upon finishing the second interview and leaving her, it was my turn to be upset. First, because she had accused me of not considering my ethical responsibilities – when I had taken such care in this regard. That hurt. Second, she spoke to me as if I had no knowledge of or concern for what she was going through. I was dumbfounded and angry. Why did she think I was doing all this? She seemed to have forgotten that I, also, had an invisible chronic illness, as did my husband. That hurt too. However, finally, and overwhelmingly, I was faced – again – with the pain and the loss that both routinely and unexpectedly is encountered by people with invisible illness. I shed a few tears as I drove home, regrouped and got back to work. On one particular occasion, I recall heading to an interview feeling unwell, exhausted and, correspondingly, emotional. As I travelled to the respondent’s home in the car, I wondered how I would succeed in ‘keeping it together this time’, given the depth and richness of what had been revealed at the previous interview with this particular

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respondent. I was afraid of the respondent’s emotions escaping the ‘cage’. I was more afraid of my own running away and what a mess I might find myself in. In fact, I did keep my emotions in check, but the interview data gathered was correspondingly flat and colourless. I recalled the ‘transactional nature’ of the interview (Wilmot 1975: 10), especially, that each person influences, and is influenced by, the other (ibid.: 12). I promised myself that I would reschedule if I felt like that again. I thank participants at the Department of Management and Administration Research Colloquia, University of Western Sydney for this insight. Colleagues at this forum pointed out to me the value and uniqueness of my special viewpoint, especially when interviewing people with MS, pressing me to continue. It was worthwhile to do so, although it was not easy. Interestingly, the potential problems surrounding interviews with sick people gave me a ‘reason’ to seek counselling. However, the ‘real’ need for counselling stemmed from life events outside the research process. This will become clear in the following chapters. I recall, on one particularly disastrous occasion, the tape was turned off inadvertently by the participant. She was very quietly spoken and, as a result, I had asked her to hold the tape recorder, like a microphone, in her hand. As I was driving home, I was reviewing the interview in my mind and sensed that something was not right. I pulled over to the side of the road to find that the entire interview was lost. I was devastated. I was also extremely embarrassed. Fortunately, reconstruction of the majority of the substantive aspects of the data was possible the following morning, given that it was a second interview with that respondent, and the question schedule had been quite structured in accordance with particular issues I had planned to cover. However, the details and timing of the affective component and the actual narrative had been lost forever. A harsh lesson was learned: a better quality tape recorder was immediately sought prior to conducting any further interviews. Another minor, but noteworthy, problem encountered during interviewing was the intrusion of sexuality. I also note that few have had the courage to discuss these kinds of problems, and I look to Fine’s (1993) frank, if not cynical, comments for support. Whilst there were no ‘obnoxious or brazen attempts at sexual acquaintanceship’ (ibid.: 283) and, certainly, no spicy trysts, there was a recognised and somewhat distracting intrusion during one particular interview that was simply not present at the others. The intrusion could perhaps have been attributed to the female researcher’s existence in a sexist world or, perhaps, a male respondent endeavouring to portray a ‘macho’ persona. Whatever the reason and whatever was sensed, I believed that it served to block the normal development of trust and openness during that first interview. Concurrently, I recognised that my comments here could be rather simplistic, biased or wrong (Wilmot 1975: 63). However, I felt that the issue was worthy of comment. I found this out the hard way also. A couple of the early interviews were very difficult to hear. Further, I made the mistake of often allowing a week or more to pass before commencing transcription. Some of the narrative was lost, especially given the observed tendency for respondents to speak more quietly when levels of emotion rose. Transcription was very difficult and very time-consuming without the aid of recent memory. I now regard it as imperative that interviews be transcribed within twentyfour hours of the interview, or as soon as humanly possible. I also found that significant early analysis takes place during the transcription process. The act of reliving the interview shortly after conducting it, especially given the need to concentrate so closely on what was being said (and felt) was very helpful. It also served as a great preparation for subsequent meetings. One participant suggested to me that it might be useful for participants to be encouraged to jot down any thoughts, recollections or incidents they believed relevant in between interviews for review at second interview. However, reflection and subsequent discussion with colleagues returned me, again, to the difficulties associated with

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participants reflecting upon their stories, and influencing their future storytelling. I decided not to pursue this suggestion. One respondent during the main study requested a copy of the transcripts. When the first transcript was supplied at the commencement of the second interview, she didn’t bother to read it, instead handing it back to me. She seemed pleased that I had responded to the request and I sensed that the request was one relating to trust. She then seemed satisfied and didn’t want copies of further interview transcripts. I also noticed that the second interview with this respondent was rather richer and more detailed than the first. Exacerbations of my own unseen chronic illness, MS, were of some concern during the field study. My own fear and feelings of personal vulnerability (Lawson 1987: 252) had surfaced to a significant extent, due to both the actual illness exacerbations and my constantly having to confront what ‘might be’ as it was depicted in transcripts and vivified during analysis. Every interview became a living reminder of what could happen to me. I found, especially when interviewing Daphne (a respondent with MS), that my fears for the future were revived and heightened, and at a much greater level than was anticipated. My routine and (until then) unconscious use of repression (Oldham and Kleiner 1990) as a defence mechanism was just no match for the ‘reality’ of looking across the table at my possible ‘future’. This woman was only a few years older than me, and the disease was creating significant problems in her life. It was very discomforting. I revisited the appropriate literature to refresh my mind on the specifics of analysis approaches (for example, Miles and Huberman 1984; Yin 1989; Minichiello et al. 1990; van Manen 1990; Sarantakos 1993; and Morse 1994). I also reconsidered an early draft of this chapter to assist with coding and analysis. I found that this was also an experience shared with another: The reflective nature of qualitative research must leave room for the fact that ideas are ‘intuited’; and by their very nature intuitions come where and when they will, which is not always where or when they are sought … My reflections on miscarriage became my constant companion: I lived, walked, talked and slept my study. (Swanson-Kauffman 1986: 65)

30 This particular suggestion from a colleague sounded very workable at the outset. The tape recorder was kept at hand to record thoughts whilst driving or working. However, when it came to transcribing the ‘gems’ that had been captured on tape, the task soon proved an onerous, cumbersome burden. I had given myself additional transcribing work. This was not what I needed. After the pilot study, I returned to the ‘old faithful’, pen and paper, as well as keeping typed journal notes on the computer. Once the idea was down, it was quick and easy to access via notebooks, journals or computer files. 31 Others have described this as ‘narrative analysis’ (Peterson et al. 1994: 206; Brown and Williams 1995: 697). 32 I also briefly canvassed the possibility of using the number of repeated observations of a theme (or code) as an additional analysis tool, to give some perspective as to the value or importance that the particular respondent attached to that category. However, I felt that the use of repeated observations was not likely to reflect all of a case study’s concerns (Yin 1989: 122). Using repeated observations might have been used as a supportive mechanism – another way to view the data – rather than a means in itself. However, the folly of using statistics for problems involving complex situational and emotional content was recognised (Sanday 1983: 29). I decided against doing ‘frequency counts’ (Minichiello et al. 1990: 289), or repeated observations of

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particular words (Yin 1989: 122), for those reasons. Counting how many times a word appeared seemed to detract from a sensitive and rich phenomenological study. 33 In developing a phenomenological model, as opposed to a grounded theory, I was particularly heartened to find that unique experience could be incorporated into the model as a variant, rather than deviant, characteristic that did not need to be ‘explained away’ or reviewed. Unique outcomes were valued here as the experience of each individual in their unique circumstances. They could also, perhaps, have been recognised as being a unique (or incorrect or incomplete) interpretation by a researcher who was, similarly, in a unique position. The importance of locating a negative case – one that will not confirm the proposition – is important (Yin 1989: 114; Minichiello et al. 1990: 288); this is termed ‘agon analysis’ – the analysis of oppositions or contradictions between themes (Peterson et al. 1994: 207). Although this was performed, it did not necessarily result in a revision of the model but, rather, an appreciation of a unique experience or context. This was in contrast to grounded theory development, where agon analysis should be continued ‘until you feel that you can no longer find a negative case which will force you to revise your proposition’ (Yin 1989: 115). Recognition of multiple and diverse realities and perspectives remained as an issue of tantamount importance. 34 The importance of this was discovered during the early interviews when I asked respondents to tell me about their ‘coping strategies with unseen illness’ (where coping strategies have been described by Kasl 1981: 65; Dewe 1989: 1009; Miller 1992b: 19; Koeske, Kirk and Koeske 1993: 319–35; and Callan and Terry 1994: 39). It became clear to me that respondents were uncertain how to respond. The question was reframed. When I asked respondents, instead, how they managed with having an illness and going to work – for example, what things they did or didn’t do to make life easier – I was much more successful in eliciting the information I sought.

4 A passage of trauma 1

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I returned to the task of being an authentic writer, believing that it would be irresponsible of me not to equip the reader with some modicum of understanding as to what was transpiring in my life whilst I was gathering, analysing, describing and interpreting the respondents’ stories. I recalled the importance of the researcher’s perspective and that the researcher’s experiences are data. I also knew that my experiences would influence the interpretive outcomes. So, in keeping with the philosophy of Heideggerian phenomenology, I made no attempt to ‘bracket’ events impinging on my life or the insights available from the literature. Indeed, you will see either or both referred to as often as was necessary. I have attempted to include my journal entries in such a way as to parallel the chronological series of events that took place in my life whilst I was creating this work. The Prologue was written before methodological decisions were made, being a record of the decision point to follow the ‘invisibility’ theme, hence its placement as a Prologue. Commentary about the first meeting with June and Shelley was made early during the pilot study and, thus, was deliberately placed at the head of the research design chapter. Michael’s seizure took place after the pilot study interviews had been completed, but prior to the main study commencing. As a result, I was, literally, embroiled in the trauma of the lives of my respondents when my own personal, illness-related crises began to unfold. My experiences, thus, are declared as data. Their influence on subsequent interpretations is noted. Details were correct at the time of interview and, naturally, pseudonyms have been used to protect privacy of participants. I have included details about each person in the present tense deliberately. I had no wish to speak of any of my respondents in the past tense as some of them had life-threatening diseases.

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Multiple sclerosis (MS) is an unpredictable neurological disorder (Scheinberg 1987: 2). It is a chronic and sometimes disabling disease (ibid.: 1) where the insulation surrounding nerve fibres of the central nervous system (the brain and spinal chord) is damaged (Whitaker 1987: 13). The presence of this insulation, which is called myelin, reduces, causing leakage of ‘current’ (electrical impulses) along the nerve fibres. When the myelin sheath is damaged, transmission of messages along these nerve fibres may be delayed or cease completely. When the myelin is damaged, certain other cells proliferate and form dense tissue at the site of damage. This proliferation causes a firmness of the tissue, which is the sclerosis. This loss of myelin – the sclerosis – and the fact that the lesions (often referred to as plaques) occur in many sites throughout the central nervous system (CNS) are what account for the name ‘multiple’ or ‘disseminated’ sclerosis (Ibid.: 14). 5 Leukaemia is defined as any of a group of malignant diseases in which the bone marrow and other blood-forming organs produce increased numbers of certain types of white blood cells (leucocytes). Overproduction of these white cells, which are immature or abnormal forms, suppresses the production of normal white cells, red cells and platelets. This results in the bearer having an increased susceptibility to infection, anaemia and bleeding. Other symptoms include an enlargement of the spleen, liver and lymph nodes. Leukaemias are medically classified into acute or chronic varieties, depending on the rate of progression of the disease. They are also classified according to the type of white cell that is proliferating abnormally (Martin 1990: 387). In Shelley’s case, her leukaemia was characterised by the medical community as being acute, with an overproduction of lymphoblasts (abnormal cells in the blood). Nevertheless, as we will see, this was also a chronic condition, as Shelley had been living and working with it for many years. 6 Glaucoma is a condition in which loss of vision occurs because of an abnormally high pressure in the eye. In all types of glaucoma, the aim of medical intervention is to reduce the intra-ocular pressure. Drops are put into the eye(s) at regular intervals to improve the outflow of aqueous humour from the eye, and drops and tablets (diuretics) are used to reduce the production of aqueous humour. If this treatment is inadequate, surgery may be performed to make a channel through which the aqueous humour may drain from the eye in sufficient quantities to allow the pressure to return to normal (Martin 1990: 287). Unfortunately, interventions of this nature were not successful for June. 7 Spondylolisthesis is a painful condition affecting the spine. There is a forward shift of one vertebra upon another, due to a defect of the joints that normally bind them together. This may be congenital or may develop after injury. The majority of cases in which pain is present are treated with rest and a surgical belt or corset. However, in a small minority of cases, where severe disability results because of pressure on nerve roots, surgical fusion of the vertabrae may be required (Martin 1990: 654). 8 Breast cancer is the commonest form of cancer in women and involves a malignant tumour. This is an especially virulent form of cancer, especially for young women. The classic sign of breast cancer is a lump in the breast, which is often noticed after minor local injury. The tumour may also spread to the bones, lungs and liver (Martin 1990: 87). 9 Metastasis is the distant spread of a malignant tumour from its site of origin. This occurs by three main routes. First, it can spread via the bloodstream. Second, it can spread through the lymphatic system. Third, it can spread across body cavities, for example, through the peritoneum. Highly malignant tumours, like breast cancer, have a greater potential for metastasis (Martin 1990: 426). 10 Endometriosis can be an extremely painful chronic illness affecting women (Donoghue and Siegel 1992: 13). It is characterised by the presence of tissue similar to the lining of the uterus (endometrium) at other sites in the pelvis. In women with endometriosis, this tissue may also be found in the ovary, fallopian tubes, pelvic liga-

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ments, on the pelvic peritoneum, and even in the cervix and the vagina. This tissue undergoes the periodic monthly changes similar to that of the endometrium, causing pelvic pain and severe dysmenorrhoea (menstrual pain), with the pain continuing throughout and after menstruation (Martin 1990: 226). As is the case with the lining of the uterus, the endometrial growths usually respond to the hormones of the menstrual cycle. They build up tissue each month, break down and cause bleeding. However, unlike the lining of the uterus, endometrial tissue outside the uterus has no way to leave the body. The result is internal bleeding, degeneration of the blood and tissue shed from the growths, inflammation of the surrounding areas, and formation of scar tissue (Endometriosis Association 1992: 1). Endometriosis is regarded as a ‘woman’s problem’ and, as such, is not widely nor comfortably discussed (Vickers 2000d). Interstitial cystitis is a chronic, non-bacterial inflammation of the bladder of unknown cause (Martin 1990: 357). It is an extremely painful and uncommon bladder condition, often producing very disabling symptoms including severe frequency in the need to urinate, dysuria (pain, burning or stinging during urination) and lower abdominal and urethral pain. It may affect women or men. Chronic fatigue syndrome (CFS) is a condition characterised by muscular fatigue and pain, lack of concentration, memory loss and exhaustion (Martin 1990: 447). There has been more than a passing suggestion in the literature that CFS is psychosomatic (Conant 1990: 18; Blake 1993a: 26), related to depression or to psychiatric disorders (Manu 1992: 71; Price et al. 1992: 514). It is posited here that such an assumption is made because no ‘scientific’ test currently exists to definitively validate the presence or absence of this disorder (Vickers 1999b). The question also remains unresolved as to whether the disease is associated with depressive disorders in the first instance or whether the depression associated with CFS follows the illness experience, including scepticism received. Where the a priori assumption is made that CFS is psychosomatic, the assumption may follow that CFS only affects neurotics, hypochondriacs and malingerers. Women, substance abusers and the depressed all become likely candidates. Despite the prevalence of CFS today, its causes and even its authenticity remain in question by health professionals and the general public. What cannot be questioned is the profound impact it has on the lives of those who suffer from it (Blake 1993a: 28). It was not my place, nor intention, to question the authenticity of this, or any of the conditions of respondents in this study. I was interested in their story. David Bell exaggerates little referring to CFS as ‘The Disease of a Thousand Names’ (1991; cited in Blake 1993a: 26). Conant (1990: 4) listed possible names as including chronic monolike illness, chronic epstein-barr virus syndrome (CEBV), chronic fatigue and immune dysfunction syndrome (CFIDS), chronic viral syndrome, chronic epstein-barr-like syndrome, and post-viral fatigue syndrome. It is also commonly referred to as myalgic encephalomyelitis (ME) or ‘yuppie flu’. The label also appears to be culturally determined. For example, in the United States the illness is called CFS, whereas in the United Kingdom and Canada, ME is more common (Blake 1993a: 25). Lipodystrophy is a very rare chronic condition. It is a more ‘visible’ chronic condition, as opposed to the numerous other invisible chronic illnesses described here, in that if one knows what to look for, some evidence of the condition can be seen. However, it was included here because Shirley lives with it in conjunction with three other invisible chronic illnesses and because it is not a condition that would be obvious to the uneducated observer. Lipodystrophy involves any abnormality or disturbance of fat metabolism or fat distribution in the body (Martin 1990: 391; Anderson, Anderson and Glanze 1994: 915). In Shirley’s case, she has a thinner upper body, with larger deposits of fat on her buttocks and legs. However, given that this tendency of fat distribution is not

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unusual for women, I wouldn’t have noticed the problem unless it had been pointed out. As I considered Shirley’s story, I was reminded of authors, such as Asher (1972/1995: 157) who ‘defined’ malingering in sick people, and Ford (1992: 338) who wrote about the phenomenon of ‘illness as a lifestyle’. When I pondered Shirley’s life, I found the association that many make between malingering and chronic illness offensive. Shirley, with her four chronic conditions, two jobs and a very sick mother to take care of, epitomised anything but a malingerer. I was heartened to find that others have been similarly offended. For example, Yelin (1986: 623–4) described the ‘myth of malingering’. Falvo and colleagues (1982: 3–4) described a lack of social validation for invisible chronic illness and the commonly associated perception of malingering (Ibid.: 5). Conant (1990) devoted an entire chapter to a discussion of ‘Fighters and Malingerers’ in an effort to improve understanding. An important postscript – of the ten participants interviewed in 1996 for this study, to the author’s knowledge (without specific investigation to find out), only seven remain in the workforce. Daphne has stopped working. Shelley and Linda have both died. The rest, presumably, struggle on as best they can. Readers might not believe that such long quotations are necessary to make the point. However, in this case Fred was describing a most protracted journey, and his lengthy and earnest description served to underscore this very point. I was aware of the importance of reporting faithfully the meaning uncovered in qualitative research as well as using the extract to support the author’s arguments (Street 1996a: 9–10). I deliberately adhered to the obligation that qualitative researchers have to ‘report what a person actually said and meant’ (Sandelowski 1994: 480). Thus, after much deliberation, this passage has not been heavily edited for fear of reducing its impact. Others are also included later in the same vein and for the same reasons. Those interested in finding out more about the sick role, will find many references to it in the literature. For example, Lambert and Lambert (1979: 2), Mechanic (1981), Falvo, Allen and Maki (1982: 5), Becker and Rosenstock (1984), Harrison (1984), Yelin (1986: 623–4), Lubkin (1990: 53), Morse and Johnson (1991: 2), and Ford (1992: 338). This would indicate the significance of the concept and its likely influence in social negotiations for sick people. Unfortunately, because the trajectory of chronic illness rarely follows the required path of getting sick, seeking and following medical advice, followed by recovery, the wider expectation that chronically sick people should and will get well is one that creates significant problems for them. I distinguish here between the medicalised notion of an illness crisis point and a personally experienced crisis point. The medical crisis point is traditionally defined as a turning point; where the patient either gets worse and dies, or gets better and lives (Maltz 1960: 196; Martin 1990: 162). It is easily envisaged, for example, by considering a fever ‘breaking’, after which the patient improves relatively quickly. Whilst disease-related crisis points may have existed in the chronic illnesses reported here, they were of less concern than the personal and emotional crisis experienced by the bearer at the point of discovering the change in their lives as a result of such an illness. For many individuals diagnosed with a chronic and often degenerative or overtly life-threatening illness, a ‘life crisis’ (Montgomery and Morris 1989) or ‘psychological crisis’ (Reber 1985: 166), resulting in a state of disequilibrium and tension, anxiety and feelings of helplessness (Aguilera 1994: 1), may follow. Those interested may wish to consult other authors who deal with the various and numerous reactions of sick people to their illness. For example, Spicer (1978), Lambert and Lambert (1979: 5–15), Maslow and Mittelmann (1981: 49–50), Schneider (1984), Register (1987), Montgomery and Morris (1989), Friedman and VandenBos (1992: 1178), and Miller (1992e: 419).

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5 Organisational fringe dwellers 1

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I have discussed the serendipity and benefits associated with insiders researching areas that they have lived and understood, as well as the difficulties and dangers associated with doing this (Vickers 2000c). However, knowing this did not diminish the perceived need to report the epiphanies that altered my life and my view of the world, especially when they were so closely related with the material in this study. So, despite my personal reservations about displaying such sensitive (and, sometimes, negative) material about myself, I proceeded anyway. How could I not? Those interested in reading about a more complete analysis of this particularly painful episode in Shelley’s life may wish to consult Vickers (2000b), where I explored, at some length, the ramifications of stigma when associated with illness. I especially focus on the outcome for people like Shelley when the illness is knownabout as opposed to when it is not-known-about. For people with unseen illness, the choice of disclosure (Vickers 1997d) is a significant one that has all sorts of ramifications on social and workplace relationships. It was certainly my experience that I didn’t know what to expect from others. When I did form some idea, this varied wildly from day to day, even from moment to moment, depending upon what was going on for me at the time. I particularly recall the difficulties I had with my expectations of friends and colleagues when Michael was ill. I found that I simply could not continually rehash the depressing story of his illness, and of mine, when friends and family made contact. So I stopped answering the telephone. When people left messages, I failed to call them back. I simply could not continually go over the story with them. I would tell people, when I did speak with them, that I couldn’t keep reliving the story (a requirement, for me, when telling the story). I would hear the word come back to me that I was in denial. ‘Denial!’ I would scream inwardly – silently. ‘Why wouldn’t they ‘hear’ me? Why wouldn’t they listen to what I was trying to tell them? Why wouldn’t they understand? I was just trying to survive!’ At the same time, I churlishly wondered of others, ‘Why don’t they call?’ As I wallowed in my rage, hurt and fear, I was conscious of my own inconsistency, anger and withdrawal. I also felt powerless to do anything about it. The reader should also be reminded that at no time during this study was I trying to find fault or dishonesty in these stories. I was not judging inaccuracies or inconsistencies as being a problem or an absence of truthfulness. On the contrary, I felt that uncovering inconsistencies was imperative to underscore the respondents’ pain and suffering. I was also exquisitely aware of my own fragmentation, ambivalence and inconsistency, and my own (at that time) inconsolable pain, and how forcefully they were all entwined. I had wondered, ‘Was I the only one?’ Apparently not. Those interested in the question of the need for sick people to idealise their social performances (Goffman 1969: 30), especially at work, will find that others have commented on this phenomenon. For example, impression management (Goffman 1969: 208) can also be associated with ‘validating the self ’ (Lindesmith and Strauss 1968: 286), ‘self-knowledge’ (Gergen 1989: 75), knowing how to present the self (Gergen 1989: 75; Turner 1991: 124) and ‘protective practices’ (Goffman 1969: 12). There is a perceived need, especially acute in people with stigmatising conditions, to engage the hiding, displaying and controlling of the social self – of ‘social being’ (Harré 1993: 12). This becomes especially important in the workplace where health is routinely expected and regarded as a commodity. It is, perhaps, another aspect of being a human ‘resource’.

6 Careerist concerns 1

These marks are actually injection site reactions, as opposed to bruises, and are characterised by areas of redness on the skin at the injection site, indicating inflammation

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as a result of the serum being rather acidic. A bruise, on the other hand, would indicate bleeding has occurred under the skin. The various ‘tasks’ of grieving (Schneider 1984: 63) were witnessed. These accompany Kubler-Ross’s famous ‘phases of grieving’ (Kübler-Ross 1969; Schneider 1984: 66; Register 1987: 21; Sellick and Bolton 1989: 177–8) and may be associated with multiple ‘status passages’ (Glaser and Strauss 1971: 142) associated with the crises of diagnosis and continued existence with an unseen illness. Unfortunately, many of these grief tasks, phases and outcomes are not readily understood by others. These variations in response might be attributable to, for example, gender (Bowlby 1980: 103; Helman 1990: 143–4; Klonoff and Landrine 1994: 414), culture (Bowlby 1980: 126; Curtin and Lubkin 1990: 12; Helman 1990: 117), levels of social support (Argyle 1989: 277; Hastings 1992: 236; Ray 1992), and the personal or internal characteristics (Schneider 1984: 35; Robinson 1988: 49; Callan and Dickson 1992: 49–50; Miller 1992c: 196; 1992d: 397; 1992e: 414; Koeske, Kirk and Koeske 1993: 319) of that individual. These can all influence the grief reaction and how that person copes. This seems contradictory. However, an illness can remain invisible to others, even though there are (substantial) changes to an individual’s appearance. For example, heavy steroid use can result in oedema and weight gain, although others may be unaware of the cause. I recall this happening to Michael. As a result of his puffy face and weight gain, those around him assumed that not only was nothing wrong, but continued to tell us that he was ‘looking so well!’ It was a cruel irony. For myself, I also recall circumstances (June/July 1997) after a second ‘pulse’ of prednisone, which coincided with me starting a new job. As, the evening before, I prepared for my first day at the new job, I remember finding, to my horror, that I had to wear my ‘fat’ clothes because of the weight I had gained on the prednisone. The ‘pulse’ came on top of months of oral steriod use and rendered most of my wardrobe unavailable. (Women readers, in particular, will know that one’s ‘fat’ clothes are rarely the favoured choice for one’s first day at a new job!). I also recall my puffy, blotchy, acneridden face (all outcomes of the prednisone treatment) and the impossibility of disguising this with makeup. Ugh! I wailed to Michael. At least he understood. No one else would have. The staff card photograph taken when I commenced remains as a reminder of my misery. Speaking of invisible symptoms reminds me, once again, of the bladder problem I encountered which meant I had difficulty voiding. This particular MS symptom was so invisible and yet influenced so significantly my self-image and self-esteem, particularly with respect to my feelings about my own sexuality. I wondered what life would be like in the future as I contemplated the very real possibility of having to catheterise myself on a regular basis in the future (or, worse, having to leave a catheter in all the time) with the associated embarrassment, pain, inconvenience and urinary tract infections that can accompany their use. Fortunately, I haven’t had to find out, but the possibility was too terrifyingly close for comfort on a couple of occasions. Readers interested in learning more about loss of self-esteem in association with chronic illness may wish to consult the following: Lambert and Lambert (1979: 2), LaRocca, Kalb and Kaplan (1987: 207), Robinson (1988), Miller (1992d), Callan and Terry (1994). See, for example, Curtin and Lubkin (1990: 7), Miller (1992d: 409), Rosner and Ross (1992: 154). I recall leaving the interview with Shirley feeling overwhelmed by my responsibilities as a researcher, of bearing the burden of her pain and loss, of desperately wanting to help her and, yet, clearly not being qualified to do so. I was wondering what to do in response to such a momentous confession. I felt that she was asking for help, asking for advice as to what she should do. I reminded myself of my place in the research process. I was not a counsellor, nor a relationship expert. After the interview

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concluded, I asked her if she had attended any endometriosis support groups and suggested that she get in touch with someone to discuss this further. However, as I walked away, I was left with the sinking feeling that if Shirley had reached the age of 41 without having sought this kind of support, that she was unlikely to do so after I left her. But I so hoped that she would. I am struck, whilst reviewing this section, how the ‘words-on-the-page’ have failed to adequately capture this moment. My recollections reconstruct a picture of this passage that the reader would, unfortunately, not be able to share. It is a case of not being able, using just ‘words-on-a-page’, to capture sufficiently the emotion, the electricity and the pain that was rendered here. Rosalie recounted her story with tears streaming down her face, confronting the pain and loss she had endured from lost career aspirations perhaps, consciously, for the first time. I did consider using the term ‘affect’, rather than ‘feeling’. However, I wanted to avoid sounding overly scientistic (Harré, Clark and De Carlo 1985: 5) and, in keeping with Heidegger’s preference for the use of ‘ordinary language’ (Dreyfus 1991: 7), use of the term ‘affect’ was avoided, although it did capture the world of ‘feeling’ being discussed. I wanted to use a term that was a general term which could be used more or less interchangeably with various others such as emotion, emotionality, feeling, mood (Reber 1985: 15, emphasis in the original). At the broadest level, I have attempted, in this section, to report ‘bad feelings’. The literature comments on the existence of uncertainty (Robinson 1988: 36; Wheeler and Dace-Lombard 1989: 13), anxiety (Lawson 1987: 255; Ray 1992), anger (Register 1987: 17; Lane and Hobfoll 1992) and fear (Bowlby 1980: 40; Lawson 1987: 256; Register 1987: 17; Maslow and Mittelmann 1981: 49–50) associated with having a chronic or terminal disease, or of being disabled (Szasz 1991: 168). Threat of loss may arouse anxiety, whilst actual loss results in sorrow. Both may arouse anger (Bowlby 1980: 40). This notion of a ‘growing aloneness’ was a concept that leapt off the page, when I considered my experiences of ‘feeling bad’. During the final periods of data analysis, as I became closer and closer to these stories (and to my own), I was conscious of my own withdrawal from the world and of my increasing numbness. I was also noticing my lack of response to the pain of other people. As a result of this, at times, I wondered if what was presented here was somehow ‘insufficient’, ‘weak’, somehow ‘lacking’ in the rawness that had been anticipated. I began to blame myself for trying to distance myself from their pain in order to survive my own. However, I clung to my belief that these stories were rich. After all, I thought, what more could be asked of people – strangers – than tears shared, the sharing of an absence of sexual relations, fears of losing one’s children or of never having children, of having to urinate in the street in desperation or, simply, of not being understood by colleagues or family. I was, of course, fortunate enough to be able to place a person behind these stories, making them more authentic. I was able to recall the shaking hands, the nervous laugh, the uncomfortable shift in the seat – constituents of the voices that remain out of reach to readers. The burden and the difficulty in sharing the essence of these experiences is reconsidered in Chapter 8. With hindsight, I consider both Linda and Shelley’s remarks here to have been particularly prophetic. Readers who make it through to the Epilogue will find that the fears that these two delightful young women felt were very reasonable. Of course, it was recognised that humour and laughter are not the same thing. Laughter was definitely used as a release of tension, as I found to my own embarrassment when reviewing Shelley’s transcript. My feelings of fear and inadequacy, particularly when confronted with the spectre of her premature death, were demonstrable as I relived the interview, when checking the transcript against the tape. I recall my own anxiety, as the seriousness of Shelley’s condition emerged. My nervous

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laughter was noted during a break in proceedings when it was time to change the tape. I recall the conversation just prior to this: MV: So at the end of this period, this two years you’re on at the moment [referring to her current period of remission], are they aiming to take you off medication altogether? SHELLEY: Yes. Well, there’s only so much medication I can have now. I have really been whacked with chemotherapy and because it’s so highly toxic, they don’t know what it does to the organs and that sort of thing. So, I guess I’m assuming that at the end of the two years they will probably take me off the treatment and, say, give me a little bit of time, not —. I wouldn’t say it would be too long for fear of me relapsing off treatment. They’d be giving me the bone marrow, an unmatched bone marrow. So that, in respect, is really my last chance. If that doesn’t work, there isn’t anything they can do [tape ends]. (Nervous laughter from MV) (Shelley Interview #1: 11) 15 Betrayal and feelings of violation in the workplace have been discussed by Temby, Richardson and Howe (1996), and Morrison and Robinson (1997). 16 Fred’s story resonated so strongly with me here, as is evident by my obvious enthusiasm when he responded that people ringing him up all the time drove him ‘nuts’. Over the crisis period of Michael’s illness, I became less and less able to recount the depressing story of his condition, his decline and our awful situation. Friends just didn’t seem to understand that in order for me to survive I could not continually talk about, think about and relive Michael’s illness – or my own. Use of the Freudian defence mechanisms of avoidance or repression (Parsons 1951: 203; Kline 1984: 21; King and Singh 1989: 63; Parsonson 1989; Storr 1989: 12; Oldham and Kleiner 1990: i), in my case, saved my sanity. At the time, I was angered by the judgement of others that I was avoiding them, denying reality. I was angered by their inability to empathise. I was also angry that I was not ‘heard’ when I did take the time and effort to try and explain. Ironically, though, I remained unsure how I did want them to behave and what I did expect. Whilst I was conscious of avoiding those who continually called, I was also very hurt by those who did not. I was neither consistent nor reasonable. And still the rollercoaster surged ahead, faster and faster. 17 Those interested in reading more about felt stigma, or shame, especially when associated with chronic illness, should consult Freidson (1970: 205), Scambler (1984), Jacoby (1994), Scheff (1994: 277), Susman (1994), Finerman and Bennett (1995) and Nijhof (1995). 18 Humiliation is distinguished from shame by some authors, but not all. Those who do, distinguish it on the recognition of ‘others’ knowing about the feelings of shame and embarrassment. I would argue that, if one adheres to this distinction, many people with invisible chronic illness would not experience humiliation, because of the invisible nature of the illness and many of its consequences. Others rarely know what is going on. However, Linda’s experience in other people knowing of her mastectomy made her experience of shame (involving her lost breast) an especially social one – a humiliating and embarrassing experience, involving a consciousness and reflexive viewing of the self from the point of view of the other (Scheff 1994: 287). It must have been awful. 19 It is acknowledged that modernity and bureaucracy are similarly noted for outcomes of dehumanisation and feelings of powerlessness – other human costs – in organisations that may exist beyond the capitalist sphere. However, without dismissing the Weberian distinction from Marxist thought – that is, that problems of modernity and bureaucracy being attributable to more than just capitalism, and being inherent in

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groups and classes, and forms of action, authority and legitimation (Beilharz 1991: 226) – it is felt that for me to wade into a more comprehensive analysis of bureaucratic process on this basis would be beyond the scope of this work. It is the notions of alienated labour (Marx 1975/1994: 387) where the worker becomes estranged from the human essence, from themselves and from others (ibid.: 390) through capitalist processes, that have long been equated with devaluation. The actor (in this case, a sick person) moulds and changes themselves to fit the work process (Fromm 1963/1994: 394). The Marxian hypothesis of alienated workers (Blauner 1964: 3) is reinforced through a recognition of alienation in the workplace through feelings of powerlessness and social isolation (ibid.: 2–3) which were especially relevant to this analysis. This lengthy narrative was deliberately included as a paradigm case. Leonard (1989: 54) and Lawson (1987: 254) have both used paradigm cases (read exemplar cases) as ‘strong instances of particular patterns of meaning’ (Leonard 1989: 54) to demonstrate a particular phenomenon (Lawson 1987: 254). Leonard’s (1989) articulation of interpretive analysis was particularly close to van Manen’s (1990) and was specifically presented for use with Heideggerian phenomenology, making it especially relevant in this analysis. This was my interpretation anyway. I am not suggesting that Rodney was some kind of monster. Indeed, I thought exactly the opposite after our two meetings. I am pointing to Rodney’s comments as an example of an organisational actor engaging in ‘administrative evil’ (Adams and Balfour 1998). Administrative evil encourages people in organisations to say and do things they would not otherwise do, while genuinely believing that what they are doing is morally and ethically reasonable, especially within the context of the organisation. Rodney did, on several occasions, make reference to being concerned about stress levels for the fictitious individual. However, he was concurrently demonstrating the desire to pursue the managerialist imperative of efficiency at all costs. Rodney, like many managers, was prepared to make his decision, with less than complete information, because of the efficiency requirements of the organisation. I am still concerned that I am painting an unreasonably bleak impression of Rodney, which was not warranted. Rodney, like many of us, was a product of institutional life. One of the notable themes that emanated from this study was that people, when at work, were seen to be capable of downplaying their humanistic concerns in the name of conforming to the managerialist rhetoric that pervades modern organisational life. I am trying to demonstrate what nice people can do within the confines of organisational life. I have always maintained the difference between invisible and hidden illness. Many other authors use these terms interchangeably (see, for example, Lawson 1987: 250; Day 1988: 21; Ayala and Lederman 1994: 9). But I disagree. As stated earlier, those with unseen illness have, much of the time, a choice of disclosure.

7 Surviving 1

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I feel increasingly uncomfortable about including my perspective on this research process. However, as I review drafts of this work, I continue to be convinced that I cannot edit all the ‘ugly’ bits. Actually, I could, but not without presenting an inaccurate portrayal of my state of mind during the analysis of the respondents’ stories. I make another, difficult, return to authentic writing. I remind myself – again – of my place in this research process: as an insider, as a researcher, as a sick person, as a partner and as an interviewer. I am overwhelmed. Those interested in reading in this area might be inclined to consult, for example, Watson and Kendall (1983), Wheeler and Dace-Lombard (1989), Szasz (1991) and Miller (1992a; 1992b; 1992c). This would be a good time to make a comment about our cultural expectations of the power of positive thinking. I am absolutely delighted to report that Fred had such a

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positive outcome with his cancer experience. Certainly, he reported that the medical profession thought, at the time of his diagnosis, that his life was unlikely to continue for much longer. As a result, and all credit to Fred, he appears to have done everything possible to assist with his recovery: changes in diet, exercise regime and positive thinking. However, I am one who becomes incensed when ‘the power of positive thinking’ is routinely and uncritically proffered to people with serious illness. There is no doubt that having a positive outlook can be helpful. If nothing else, it improves one’s quality of life for as long as one is on the planet. It encourages one to do all the things that Fred (and many others) have done. And there is evidence that it also enhances one’s prospects of overcoming some very serious conditions. However, the constant brandishing of these mystical (mythical?) powers places an unreasonable burden on those who have a less successful outcome. From my perspective, I recall a similar determination from Shelley and Linda. Linda, in particular, was a health fanatic before she got sick. If one follows the cultural expectation, she shouldn’t be sick at all. I become so angry when people tell me – and others – that what is really needed is to think positive, to have more faith, to try harder. I have written this footnote on a day (in June 2000) when a colleague asked me about the effects of multiple sclerosis (which this colleague told me he knew nothing about and had not even heard of). After explaining, at some length, how it works and some of the effects on me and on others, I was promptly told that what I needed was a ‘step of faith’ (more religion) and a more positive attitude. Indeed, he added as a serious afterthought, ‘perhaps your research into the lives of sick people is making it all much worse in your mind’. I am furious as I recall his comments! The common practice of encouraging sick and disabled people to be more positive places the imperative – the sole responsibility – for their illness (and, presumably, its cure) on their shoulders. Following this person’s logic, as it was conveyed to me, assumes that it is somehow my fault that I can no longer leap up stairways. It is also Michael’s fault that he can’t add up as reliably as he could before, and June’s fault that she can’t see properly, and Linda’s fault that she has had one breast hacked off. As my anger subsides, I am reminded of an exercise (borrowed directly from McWilliams and McWilliams 1990) that, for me, seems to illustrate perfectly the pure idiocy of this line of thinking. For those who believe in the unassailable power of positive thinking, and who are agreeing with my colleague who thinks that the problems I (and others) experience with chronic disease are all in our minds, or related somehow to my lack of religious faith, I invite the reader to try and turn the next page of this book (or any book) by the power of their positive thinking. Try very hard. Be as positive as you can and take as long as you wish. You may also call on any religious powers you value. Keep trying. I suggest that, no matter how hard you try, no matter how positive your thoughts or how much prayer is devoted to the task, you will not be able to turn the page without using more than positive thought. People with a physical illness or disability (visible or not) are, equally, unable to wish their incapacities away. Believe me, I have tried – long and hard. Those interested in learning more about folk beliefs about illness may wish to consult Fitzpatrick (1984), Kleinman (1988), Klonoff and Landrine (1994) and Helman (1995: 18). Readers interested in cultural, gender-related and other social influences on illness may wish to consult Fitzpatrick (1984: 17), Fitzpatrick and Scambler (1984), Turner (1987: 54), Kleinman (1988: 100–120), Helman (1990: 130), Klonoff and Landrine (1994: 408), and Nettleton (1995: 46). Readers interested in finding out more about normalisation, especially for people with chronic illness or other stigmatising conditions, may wish to refer to Goffman

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(1963: 155), De Swaan (1990: 1), Branson and Miller (1992: 19) or Robinson (1993: 9). 7 The literature informs us that social practices such as covering or hiding (Goffman 1963: 125; Wilmot 1975: 52; Robinson 1993: 16), passing (Goffman 1963: 92; Glaser and Strauss 1971: 170), the use of masks (Goffman 1969: 17; Jones et al. 1984: 136; Parker 1989: 67), fronts (Goffman 1969: 19) and other social performances (ibid.: 21) are commonplace. This is especially likely when associated with stigma and/or what is perceived to be a stigmatising illness. It was no surprise to find them here. 8 Those interested in finding out more about social support may wish to consult the work of Blaney and Ganellen (1990: 300), Dunkel-Schetter and Bennet (1990: 267), Hobfoll and Stephens (1990: 454), Sarason, Sarason and Pierce (1990: 10), Silver, Wortman and Crofton (1990: 397), Hastings (1992: 236), Ray (1992), and Roskies, Louis-Guerin and Fournier (1993: 618–19). 9 However, when one of these colleagues died from their cancer and another took a turn for the worse, it must also have been a tremendous source of anxiety for him. 10 I became conscious of my own personal background and choices, which tended not to hold a strong focal point on spirituality or religion. When the time came to report on spiritual coping, my ‘background’ as the researcher (Benner 1985: 6) became apparent. I had not enmeshed religion or spirituality in my life with invisible chronic illness and, consequently, did not ask respondents directly about this during the interviews. If I had directed more questions specifically toward spirituality, I may have been presented with a different picture than what is evident here. As it was, few respondents mentioned spiritual issues. This outcome, which may have been evidence of increasing secularism, may just as easily have been the result of unintentional researcher-induced bias (Kvale 1994: 154) where the impossibility of my value neutrality (Sarantakos 1993: 19) may have, in this instance, detracted from the findings. 11 Readers should be alert to the fact that the temporary disability calculations were, at that time (with the large private corporation where Linda worked), based on an employee’s ‘superannuation salary’, which was the sum from which superannuation payments are calculated. This did not include any salary package components or benefits, and the take-home pay could be far less than what is presumed to have been around 70 per cent of normal. While the temporary disability payment is recognised as being infinitely better than nothing, Linda’s mortgage payments still had to be made on top of additional and unanticipated medical and personal expenses, as has been articulated in the literature. I learned that Linda also, subsequently, experienced difficulties ascertaining permanent disability payments from her employer. The employer failed to start them at the appointed time, and the Human Resources representative refused to give her a reason, or a date when they would start. I understood, all too well, the difficulties of relying on temporary disability payments. Michael also received 70 per cent of his ‘superannuation salary’ when he finally received his temporary disability pension. The superannuation salary figure was used to calculate superannuation contributions for staff as well as superannuation pay-out figures. For Michael, the believed-to-be 70 per cent of his salary (which is how the Human Resources representative had put it to me) was, in truth, about half of his previous ‘take-home’ pay. Further, as did Linda, we were experiencing problems with temporary disability payments. In addition to the payments not starting at the specified time (that is, at the time when Michael’s holiday pay ran out), Michael’s employers decided – for their convenience, and without informing us – that they would simply start his pension money in the following pay run. This left us, without warning, with no income and lots of bills. An angry letter from me, indicating my concerns in the area of the organisation’s lack of concern for our situation, let alone their discriminatory and thoughtless practices, got things moving swiftly. However, it was just one more angering, worrying and avoidable aspect of a very traumatic time.

Notes

179

8 Notes from a survivor witness 1

2

3 4

5

6

I also acknowledge the importance of autobiography and self-narrative, where the form is as revealing as the substance (Bruner 1990: 119). I am strongly committed to academics writing about ‘what they know’ and advocate the use of researcher memoir as a powerful, innovative research strategy (Vickers 2000e). I am equally certain that there will be those who will roar with laughter at the prospect. Believe me, the fear surrounding the possibility that respondents might read this and think that I had misunderstood or misrepresented their lives in some way was not inconsiderable. I hadn’t really been able to articulate my discomfort in this area until I read Chase’s (1996) work concerning the issues surrounding personal vulnerability and interpretive authority in narrative research. Having decided not to collaborate with respondents about the interpretations I had made, I was prepared for their possibly less than sanguine reactions if I got it wrong. I was concerned that my interpretations would fail to have captured the messages that they, collectively and individually, had tried to convey. What if my best was just not good enough? Again, I can find no answer and hope for the best. Those interested in reading about Heidegger’s emphasis on the ontological may wish to consult Leonard (1989: 42), Sass (1990: 126), Cohen and Omery (1994: 140), and Walters (1996: 94). Interested readers may wish to consult, for example, Adorno (1951), Fromm (1942/1960; 1956; 1962; 1963/1994), Blauner (1964), Weber (1948); Marx (1975/1994; 1976), La Bier (1986), Hochschild (1983; 1989; 1997), Fineman (1993; 1996), and Rees and Rodley (1995). It was Nietzsche who first made inroads into postmodernism. From Nietzsche’s philosophy sprang two distinctly postmodernist paths: the first was followed by Heidegger and, later, Derrida; the second pursued by Bataille and Foucault (McCarthy 1987: xi). Habermas refers specifically to Nietzsche’s ‘Entry into Postmodernity’, suggesting his work acted as a ‘turning point’ (Habermas 1987: 83). McCarthy (1987: vii) suggested that Nietzsche and Heidegger ‘furnish[ed] the inspiration and set the agenda’ for the tendencies to disempower the purity of reason and its unavoidable entanglement in history and tradition. Habermas (1987: 86) refers to Heidegger and Nietzsche as ‘the firstlings’ of the postmodern age. However, the comfort in embracing heterogeneity must be weighed carefully. An affirmation of cultural diversity, a reconsideration of the classical, traditional distinctions such as race, gender and ability presents its own set of problems. Diversity for its own sake is not necessarily good, presenting other problems that need to be dealt with and which, also, may not have solutions. For example, this research has demonstrated that there remains a problematic negotiation between the divergent groups of the ‘sick’ and the ‘well’, and an unbridgeable chasm between those who understand the trauma of illness and disability, and those who don’t.

Epilogue: A pause … 1

2

We are often asked if it is Michael’s short-term or long-term memory that is affected. I see so clearly evidence of a social construction here; a medicalised category that has absolutely no bearing on Michael’s problems. He has problems with both, and with neither. The categories of ‘short-term’ and ‘long-term’ are, simply, irrelevant. That is, that I am aware of. The truth is, I haven’t had the courage or the stamina to make personal contact with each of the intermediaries to find out. I simply was incapable of hearing that things may have been getting worse. This may seem an irresponsible end to this research project, but I just could not.

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Interview transcripts Daphne, Interview #1, 19 February 1996. Daphne, Interview #2, 27 February 1996. Shelley, Interview #1, 13 February 1996. Shelley, Interview #2, 4 March 1996. June, Interview #1, 13 February 1996. June, Interview #2, 4 March 1996. Rodney, Interview #1, 22 February 1996. Rodney, Interview #2, 6 March 1996. Linda, Interview #1, 15 February 1996. Linda, Interview #2, 3 March 1996. Maryanne, Interview #1, 17 July 1996. Maryanne, Interview #2, 24 July 1996. Rosalie, Interview #1, 26 August 1996. Rosalie, Interview #2, 6 September 1996. Shirley, Interview #1, 19 July 1996. Shirley, Interview #2, 1 August 1996. Beverley, Interview #1, 10 August 1996. Beverley, Interview #2, 21 August 1996. Fred, Interview #1, 19 August 1996. Fred, Interview #2, 7 September 1996.

Name index

Abrahams, R.D. 134, 135 Abramo, L. 16 Adams, G.B. 76, 143, 176n.21 Adorno, T. 155–6n.12, 179n.4 Agger, B. 155n.12 Aguilera, D.C. 171n.19 Aisen, M. 24 Allen, H. 153nn.7, 8, 160n.5, 171n.18 Alvesson, M. 26 Anderson, B.G. 158n.26 Anderson, K.N. 170n.14 Anderson, L.E. 170n.n14 Archer, J. 5, 22, 157n.25, 158n.29, 159n.30 Argyle, M. 106, 118, 127, 173n.3 Armstrong, D.5 Asher, R. 171n.15 Astor, H. 155n.7, 157n.23 Atchley, E.K.P. 155n.8 Audi, R. 140 Ayala, L.P. 153n.7, 176n.23 Baggerly, J. 153n.7 Bakan, D. 30, 44 Baker, C. 31, 32, 33, 42, 160n.1 Balfour, D.L. 76, 143, 176n.21 Bar-On, D. 31 Barritt, L. 35, 101, 161n.12 Bates, E. 12, 23, 154n.6 Bateson, M.C. 36, 84 Battye, L. 156n.17 Becker, H.S. 157n.20 Becker, M.H. 158n.27, 171n.18 Beilharz, P. 176n.19 Bell, David 170n.13 Benner, P. 34, 35, 36, 37, 178n.10 Bennett, G. 12 Bennett, L.A. 18, 175n.17 Bennett, T.L. 178n.8 Bento, R.F. 155n.8

Berger, P.L. 157n.20 Bernasconi, R. 162n.18 Biernacki, P. 47 Blake, L.S. 152n.2, 170n.12 Blaney, P.H. 118, 178n.8 Blass, R.B. 159n.31 Blauner, R. 155n.10, 176n.19, 179n.4 Blaxter, M. 19, 20, 70, 100, 127, 154n.2, 155n.7, 164n.12 Boje, D.M. 142 Bolton, B. 173n.2 Boorse, C. 18 Bowlby, J. 94, 95, 103, 173n.3, 174n.11 Boyle, J.S. 32, 33, 52, 160nn.2, 4, 161n.14 Boyne, R. 154n.2 Brallier, L.W. 126 Branson, J. 102, 178n.6 Braverman, H. 155n.10 Brentano, Franz 34 Britton, S. 159–60n.32 Brooks, A.S. 156n.14 Brown, C. 159n.30 Brown, S. 48, 55, 167n.31 Brown, S.E. 8 Bruner, J. 134, 135, 179n.1 Buhler, P.M. 13, 14, 155n.7 Burgess-Limerick, T.A. 84 Burrell, G. 37, 39, 155–6n.12, 162n.19 Cacioppe, R. 21, 152n.5, 153n.8, 157nn.23, 24 Callan, V.J. 113, 117, 168n.34, 173nn.3, 6 Calnan, M. 23, 24, 154n.2 Caputo, J.D. 161n.13, 162n.18 Carroll, D. 135, 162n.18 Champagne, R.A. 162n.18 Chase, S.E. 44, 45, 149, 164n.9, 179n.2 Chisholm, D. 17, 77, 106 Christensen, C.A. 67

200

Name index

Clark, D. 157n.22, 174n.10 Cohen, M.Z. 34, 38, 42, 56, 155n.11, 160nn.2, 11, 179n.3 Conant, S. 152nn.2, 6, 170n.12, 171n.15 Connor, S. 39, 154n.2 Crispin, W. 83, 84 Crofton, C. 73, 178n.8 Curtin, M. 63, 67, 68, 152n.6, 158n.27, 173nn.3, 7 Dace-Lombard, J. 7, 94, 114, 126, 152n.6, 174n.11, 176n.2 Davidhizar, R. 153n.7 Davis, G. 27 Davis, K. 36 Day, L. 153n.7, 176n.23 De Carlo, N. 157n.22, 174n.10 de Laine, M. 163n.5 De Swaan, A. 20, 178n.6 Dean, A. 25, 157n.23 Deleuze, G. 159n.31 Denhardt, R.B. 3, 11, 15, 27, 102, 134, 139, 155n.12 Denzin, N.K. 29 Derrida, Jacques 140, 179n.5 Descartes, René 5 Dewe, P.J. 113, 168n.34 Dickson, C. 173n.3 Donahue, L. 13, 155nn.7, 8, 157n.23 Donoghue, P.J. 4, 6, 8, 25, 26, 63, 152nn.2, 6, 153n.7, 169n.10 Doob, A.N. 26 Dreher, M. 30, 41, 42, 46, 57, 163n.5 Drew, N. 11, 35, 161n.16 Dreyfus, H.L. 35, 37, 38, 174n.10 Dubos, R. 20 Dunkel-Schetter, C. 178n.8 Dyck, I. 99, 153n.7, 155n.11 Elian, 24, 25 Ellis, A. 78 Erikson, K.T. 6, 77, 139, 157n.20 Etter-Lewis, G. 161n.15 Fabrega, H.J. 21, 22, 26, 154n.2, 157nn.20, 25, 158n.27 Falvo, D.R. 153nn.7, 8, 160n.5, 171nn.15, 18 Farmer, D.J. 141 Ferguson, K. 14, 159n.30 Field, P.A. 44, 46, 57, 160n.1, 164n.11 Fine, G.A. 166n.23 Fineman, S. 26, 179n.4 Finerman, R. 18, 175n.17

Finkelstein, J. 137, 138, 156n.16 Fiske, S.T. 5 Fitzgerald, M.H. 6, 7, 152n.2, 153n.7 Fitzgibbons, D.E. 142 Fitzpatrick, R. 12, 119, 154nn.2, 5, 157–8n.25, 177nn.4, 5 Flax, J. 142 Foddy, W. 57 Folkman, S. 63, 99, 113, 120, 122, 127 Ford, C.V. 171nn.15, 18 Forgas, J.P. 157n.22 Foster, G.M. 158n.26 Foucault, Michel 24, 27, 140, 159n.30, 179n.5 Fournier, C. 118, 178n.8 Fox, N.J. 139 Free, 14 Freedman, J.L. 260 Freidson, E. 22, 24, 63, 154n.2, 157n.25, 175n.17 Freud, S. 159n.31 Friedman, H.S. 171n.20 Fromm, E. 18, 101, 142, 155nn.10, 12, 176n.19, 179n.4 Gabriel, Y. 26, 84, 102 Gadamer, H.G. 35, 126, 140, 161n.14 Galbally, R. 3, 19, 157n.18 Ganellen, R.J. 118, 178n.8 Garrett, L. 158n.29 Gay, P. 52 Gaze, H. 7, 13, 153n.7 Geertz, C. 11 Georgopoulous, B.S. 24 Gergen, K.J. (1991) 12, 36, 152n.3, 154n.4 Gergen, M.M. 36, 172n.5 Gething, L. 3, 19, 153n.11 Gibson, G.D. 141 Giddens, A. 155n.12 Gilchrist, M. 155n.7 Glanze, W.D. 170n.14 Glaser, B.G. 56, 63, 64, 65, 69, 173n.2 Goffman, E. 4, 5, 21, 25, 26, 65, 70, 81, 122, 136, 138, 143, 152n.4, 157n.22, 158n.28, 159n.30, 160n.8, 172n.5, 178nn.6, 7 Goldin, C.S. 21, 22 Goldstein, G. 13 Good, B.J. 154n.2, 155n.11, 157n.25 Gould, D. 23, 24, 154nn.5, 6, 158n.29, 159n.30 Gouldner, A.W. 135, 155n.12 Guattari, F. 159n.31

Name index 201 Habermas, J. 155n.12, 179n.5 Harmon, M.M. 27, 140, 141, 143 Harper, R.A. 78 Harré, R. 157n.22, 172n.5, 174n.10 Harrison, J. 158n.27, 171n.18 Hassard, J. 140 Hastings, D. 12, 173n.3, 178n.8 Hawking, Stephen 14 Hawley, J. 132 Haydon, S. 153n.7 Hearn, G. 13, 137 Heidegger, M. 8, 33–4, 35, 36, 37–8, 39, 56, 82, 136, 137, 139–40, 161nn.13, 14, 16, 162n.18, 179nn.3, 5 Helman, C.G. 19, 23, 154n.2, 154n.5, 157–8n.25, 159n.30, 173n.3, 177nn.4, 5 Herman, J. 133 Highwater, J. 143–4 Hobfoll, S.E. 73–4, 174n.11, 178n.8 Hochschild, A.R. 179n.4 Hocking, B. 153n.8, 157n.24 Hodson, R. 121, 123 Hooijberg, R. 154n.2, 155n.7 Horkheimer, Max 155n.12 Howe, J. 159n.32, 175n.15 Huberman, 17, 53, 54, 55, 167n.28 Hughes, O.E. 27, 107 Hummel, R. 140, 141 Husserl, Edmund 34, 36, 37, 140 Huxley, A. 14–15 Illich, I. 23, 158n.29, 159n.30 Jacoby, A. 22, 71, 153n.8, 157nn.22, 24, 175n.17 James, William 127, 158n.28 Jameson, F. 154n.2 Jennings, K. 148 Johnson, J.L. 6, 65, 68, 70, 95, 152n.2, 158n.27, 171n.18 Jones, E.E. 6, 122, 178n.7 Jones, G.E. 6, 155n.7, 157n.23 Jones, T.M. 15, 159n.32 Josselson, R. 161n.15 Jourard, S.M. 1, 26, 35, 81, 82, 84, 134 Junor, C.L. 3, 14, 19, 155n.7 Kalb, R.C. 173n.6 Kantor, A. 5, 8, 153nn.7, 8, 157n.24 Kaplan, H.B. 25 Kaplan, S.R. 173n.6 Kasl, S.V. 168n.34 Keen, E. 35

Keirnan, E. 140 Kellehear, A. 2, 16 Kendall, P.C. 43, 176n.2 Kerr, P.G. 157n.23 Kesey, K. 156n.17 Kets de Vries, M.F.R. 18 King, L.S. 18, 153n.8 King, N. 175n.16 Kirk, S.A. 173n.3 Kleiner, B.H. 71, 164n.12, 167n.27, 175n.16 Kleinman, A. 139, 157nn.22, 25, 177nn.4, 5 Klimoski, R. 13, 155nn.7, 8, 157n.23 Kline, P. 71, 102, 159n.31, 175n.16 Klonoff, E.A. 157–8n.25, 173n.3, 177nn.4, 5 Koch, T. 33–4, 37, 38, 49, 136, 161n.16 Koeske, G.F. 168n.34, 173n.3 Koeske, R.D. 168n.34, 173n.3 Konner, M. 24, 25, 159n.30 Korac-Kakabadse, N. 77 Koshman, H.L. 155n.7 Kouzmin, A. 11, 77, 130 Kramar, R. 13 Kramer, T.S. 152n.2, 153n.7 Kübler-Ross, E. 154n.5, 173n.2 Kuper, B.C. 153n.8 Kvale, S. 38, 42, 101, 155n.11, 162n.1, 178n.10 La Bier, D. 20, 179n.4 Lambert, C.E. 18, 25, 26, 81, 158n.27, 171nn.18, 20, 173n.6 Lambert, V.A. 18, 25, 26, 81, 158n.27, 171nn.18, 20, 173n.6 Landau, M. 17, 77, 106 Landrine, H. 157–8n.25, 173n.3, 177nn.4, 5 Lane, C. 174n.11 LaPlante, A. 155nn.7, 9 Lapsley, H. 12, 23, 154n.6 LaRocco, N.G. 173n.6 Laurent, C.L. 153n.7 Lawrence, D.H. 156n.17 Lawson, B.Z. 48, 153n.7, 167n.27, 174n.11, 176nn.20, 23 Lazare, A. 83, 110 Lazarus, R.S. 63, 99, 113, 120, 122, 127 Lederman, P.S. 153n.7, 176n.20 Lees, H. 152n.2 Leggatt, M. 153n.8, 157n.24 Leivesley, R. 77 Lemert, C. 134 Leonard, D. 31

202

Name index

Leonard, V.W. 55, 153n.8, 157n.24, 160nn.1, 2, 11, 176n.20, 179n.3 Liggett, H. 153n.11 Lindesmith, A.R. 67, 172n.5 Lindsay, A. 78 Lipowski, Z.J. 63 Lipson, J.G. 32, 44 Louis-Guerin, C. 118, 178n.8 Lubkin, I. 63, 67, 68, 152n.6, 158n.27, 171n.18, 173nn.3, 7 Luckmann, T. 157n.20 Lyotard, J.F. 39, 154n.2, 161n.16, 162n.18 McCarthy, T. 179n.5 Mackie, F. 82, 161n.16 Macquarrie, J. 133, 138 McWilliams, J.R. 177n.3 McWilliams, P. 177n.3 Maki, D.R. 153n.7, 160n.5, 171n.18 Maltz, M. 78, 171n.19 Mandel, E. 17 Mankoff, M. 21 Manu, P. 152n.2, 170n.12 Marcuse, H. 155n.12 Margolis, J. 20 Marler, R. 78 Marshall, G. 21 Martin, E.A. 158n.29, 169–70n.5–12, 14, 171n.19 Marx, K. 155n.10, 176n.19, 179n.4 Maslow, A. 3, 17, 20, 171n.20, 174n.11 Mayer, R.T. 27, 140, 141, 143 Mead, M. 26, 81 Mechanic, D. 65, 154n.2, 158n.27, 158n.27, 171n.18 Mencken, H.L. 11 Merleau-Ponty, Maurice 162n.19 Miles, M.B. 17, 30, 31, 50, 53, 54, 55, 163n.9, 167n.28 Miller, A. 15 Miller, D.T. 70, 102 Miller, J.F. 78, 113, 114, 118, 126, 168n.34, 171n.20, 173nn.3, 6, 7, 176n.2, 178n.6 Mills, C.W. 29 Minichiello, V. 32, 34, 41, 51, 53, 55, 56, 160n.1, 165n.15, 167nn.28, 32, 168n.33 Mittelmann, B. 3, 17, 20, 171n.20, 174n.11 Montgomery, B. 171nn.19, 20 Morgan, G. 37, 39, 155n.12, 162n.19 Morris, J. 19 Morris, L. 157n.18, 171nn.19, 20 Morrison, E.W. 143, 159n.32, 175n.15 Morse, J.M. 44, 46, 56, 57, 158n.27,

160n.1, 163n.9, 164n.11, 167n.28, 171n.18 Moss, D.M. 35 Mulgan, R. 3 Navron, F.J. 155n.7 Nettleton, S. 12, 23, 25, 27, 65, 130, 154n.2, 154nn.5, 6, 157–8n.25, 158n.27, 177n.5 Nietzsche, Friedrich 179n.5 Nijhof, G. 153nn.8, 11, 155n.11, 157n.22, 160n.5, 175n.17 Noel, R.T. 13, 14, 157n.23 Nothdurft, J. 155n.7, 157n.23 Oiler, C. 33, 36, 37, 154n.3, 161nn.12, 15, 16 Oldham, M. 71, 164n.12, 167n.27, 175n.16 Omery, A. 34, 36, 56, 160n.11, 161n.12, 179n.3 Orwell, George 1, 151 Osborne, J.W. 35, 161n.12 Parker, I. 1, 178n.7 Parsons, T. 3, 18, 22, 23, 67, 158n.27, 175n.16 Parsonson, B.S. 24–5, 26, 127, 164n.12, 175n.16 Paterson, K.A. 6, 7, 152n.2, 153n.7 Perinbanayagam, R.S. 106 Peterson, T.R. 163n.9, 167n.31, 168n.33 Philip, C.E. 81, 83 Pierce, G.R. 74, 178n.8 Pinder, R. 95 Polk, D.A. 152n.2, 153nn.7, 8 Poser, C.M. 24 Price, J. 161n.15, 164n.9 Price, R.H. 154n.2, 155n.7 Price, R.K. 170n.12 Putney, D.M. 155n.8 Quinn, D.P. 15, 159n.32 Raphael, B. 68–9, 75, 126 Rattansi, A. 154n.2 Ray, C. 34, 36, 173n.3, 174n.11, 178n.8 Ray, M.A. 160nn.2, 11 Rayner, M. 155n.7, 157n.23 Reber, A.S. 171n.19, 174n.10 Rees, S. 27, 75, 77, 106–7, 159–60n.32, 179n.4

Name index 203 Register, C. 67, 94, 152n.6, 153n.11, 171n.20, 173n.2, 174n.11 Reiser, P. 156–7n.16 Richardson, M. 159n.32, 175n.15 Rittel, H.W.J. 140 Robins, G. 155n.7 Robinson, C.A. 7, 70, 102, 111, 178n.6 Robinson, I. 67, 130, 173nn.3, 6, 174n.11 Robinson, S.I. 143, 159n.32, 175n.15 Rodley, G. 106, 179n.4 Rosenstock, I.M. 158n.27, 171n.18 Roskies, E. 118, 178n.8 Rosner, L.J. 83–4, 173n.7 Ross, S. 83–4, 173n.7 Safilios-Rothschild, C. 19, 155n.7, 157n.23 Sanday, P.R. 31, 32, 160nn.1, 9, 167n.32 Sandelowski, M. 71, 161nn.12, 14, 16, 161n.16, 171n.17 Sarantakos, S. 29–30, 34, 40, 41, 42, 44, 51, 54, 167n.28, 178n.10 Sarason, B.R. 74, 178n.8 Sarason, I.G. 74, 178n.8 Sartre, Jean-Paul 140, 162n.19 Sass, L.A. 35, 36, 179n.3 Saylor, C. 19, 21, 157n.21 Scambler, G. 21, 22, 71, 84, 152n.2, 153n.8, 157nn.22, 24, 160n.5, 175n.17, 177n.5 Schafer, R. 71 Scheff, T. 104, 175nn.17, 18 Scheinberg, L.C. 169n.4 Schmidt, S.A. 63, 152n.6 Schneider, J. 95, 171n.20, 173nn.2, 3 Schonwald, E. 154n.3, 161nn.12, 15, 16 Schutz, A. 161n.16, 162n.19 Scott, R.A. 21, 157n.21 Sellick, K. 173n.2 Seymour, J. 152n.2, 153n.7 Shearer, R. 153n.7 Sheehy, G. 64, 65 Shepherd, C. 152n.2 Shroeder, P.S. 70, 78, 126 Siebers, T. 156n.16 Siegel, M.E. 4, 6, 8, 25, 26, 63, 152nn.2, 6, 153n.7, 169n.10 Silver, R.C. 73, 178n.8 Simon, B. 159n.31 Sims, D. 26 Singer, P. 26, 157n.23 Singh, N. 175n.16 Small, N. 21, 153n.8, 157n.24 Solondz, K. 159–60n.32

Somers, M.R. 141 Sontag, S. 19, 152n.5, 157n.21 Southey, G.13, 137 Spicer, J. 171n.20 Steier, F. 35, 134, 135, 161n.14 Stein, H.F. 15, 16, 76, 143 Steingard, D.S. 142 Stephens, M.A.P. 73–4, 178n.8 Stephens, R. 114 Stern, P.N. 31, 32, 33, 39, 42, 160n.1, 161n.16 Stivers, Professor Camilla 153–4n.1 Stone, D.L. 6, 19, 155n.7, 157n.23 Stone, R.A. 152n.5, 157n.24 Stone, S.D. 7, 164n.12 Storr, A. 175n.16 Strauss, A.L. 56, 63, 64, 65, 67, 69, 172n.5, 173n.2, 178n.7 Street, A. 37, 161n.16, 171n.17 Stumpf, Carl 34 Susman, J. 21, 84, 152n.4, 175n.17 Swanson-Kauffman, K.M. 33, 42, 49, 50, 57, 154n.3, 161nn.12, 15, 16, 163nn.2, 9, 165n.15, 167n.29 Swisher, K.G. 133 Szasz, S. 8, 130, 152n.6, 174n.11, 176n.2 Szasz, T. 15, 24, 145, 159n.29, 159n.30 Tal, K. 15, 133, 134, 137, 139 Talsma, A. 154n.2, 155n.7 Tate, R.D. 5, 7, 153nn.7, 8, 12 Taylor, B. 33, 37 Temby, D. 159n.32, 175n.15 Terry, D.J. 113, 117, 168n.34, 173n.6 Therborn, G. 155–6n.12 Thorogood, N. 154n.2, 157n.25 Treves, F. 157n.23, 159n.30 Turner, B.S. 3, 18, 22, 24, 67, 73, 153n.11, 154nn.5, 6, 157n.21, 158nn.25, 27, 177n.5 Turner, J.C. 172n.5 Twining, D.T. 143 Van Maanen, J. 45, 160nn.5, 9 van Manen, M. 31, 36, 50, 55, 113, 167n.28, 176n.20 VandenBos, G.R. 171n.20 Veatch, R.M. 23, 153n.11, 154n.2, 158n.27 Vecchio, R.P. 13, 137 Vickers, M.H. 2, 4, 8, 12, 13, 21, 25, 26, 27, 40, 45, 46, 49, 59, 60, 73, 75, 76, 77, 81, 82–3, 85, 94, 95, 111, 112, 130, 133, 140, 141, 142, 149, 150, 151, 152n.5, 153nn.7, 8, 155n.9, 157n.19,

204

Name index

158n.28, 160n.5, 162n.18, 164n.9, 170nn.10, 12, 172nn.1, 2, 179n.1 Virtanen, P. 11, 18 Walters, A.J. 35, 37, 161n.14, 161n.16, 179n.3 Wang, C. 19 Watson, D. 43, 176n.2 Watters, J.K. 47 Webber, M. 140 Weber, M. 17, 34, 179n.4 Weisenstein, G.R. 155n.7 Wheeler, E.G. 7, 94, 114, 126, 152n.6, 174n.11, 176n.2 Wheelwright, T. 27 Whitaker, J.N. 169n.4 White, C.J.M. 67, 102 Whittington, R. 153n.7 Whyte, W.F. 164n.11

Whyte, W.H. 106 Wilkes, G.A. 36, 130 Wilkes, L. 161n.16 Williams, A. 48, 55, 167n.31 Williams, S. 23, 24, 154n.2 Wilmot, W.W. 46, 47, 127, 133, 154n.3, 157n.22, 166nn.19, 23, 178n.7 Wortman, C.B. 73, 178n.8 Wuest, J. 31, 33, 42, 160n.1 Wykes, T. 153n.7 Yelin, E. 79, 155n.7, 158n.27, 171nn.15, 18 Yin, R.K. 29, 32, 40–1, 42, 43, 51, 55, 57, 160n.6, 163nn.3, 4, 167–8n.32 Young, J. 84 Zibula, P. 155n.7 Zola, I.K. 135

Subject index

Adrian (friend of MV) 151 AIDS 21–2, 111 alcoholism, as a self-inflicted condition 21–2 aloneness, feelings of 101, 174n.12 Americans with Disabilities Act (ADA) 155n.8 analysis: of chronically ill 16, 32; data 53–6; hermeneutic 37; units of 43–4 anger, feelings of 101, 103–4, 136–7 asthma 26 Australia Occupational Health and Safety Act (1991) 156n.14 Australian Bureau of Statistics (ABS) 13, 152n.1 author (MV): and authentic writing 1–2, 35, 133–4, 168n.1; and fears 148, 150; as an ‘insider’ and ‘survivor witness’ 45–6, 133, 134–6, 143–4, 148; journal entries xii—xiii, 58–9, 72–3, 93–4, 112, 132–3, 145–51, 168n.2; and multiple sclerosis xiii, 72–3, 93–4, 112, 132, 146–7, 150; PhD thesis 135, 147, 149; and stigmatisation 110–11 back problems 60, 61, 107–8, 109, 119 background and hermeneutic circle 38 bad feelings 174n.10; see also negativity Being 137 Being and Time (Heidegger) 35, 161n.13, 162n.18 Betaferon xiii, 93, 132, 147 Beverley (interviewee: multiple sclerosis) 61; diagnosis 70, 82; and discrimination 85; fears and negativity 100, 101, 128; and invisibility of illness 140; on managerialism 107; and physical limitations 91, 95, 100, 106, 128; social

relationships 97; work performance 87; workplace relationships 88, 123 bladder function problems 95, 110–11, 122, 173n.5 blindness see visual impairment bodily perfection myth 7, 19–20 Brave New World (Huxley) 14–15 breast cancer 60, 169n.8; see also Linda (breast cancer) cancer: coping strategies 88–9, 114–17, 118–19, 119, 122, 123, 130; and employment prospects 123–5; and fears for future 89, 90, 101–4, 130; in interviewees 60, 61, 64, 80, 90, 104, 148; metastasis 60, 169n.9; research studies 16; social support 125–6; see also Fred (lung cancer); Linda (breast cancer); Shelley (lymphoblastic leukaemia) capitalism 138, 143, 155–6n.12; and the labour market 17–18; and managerialism 106–7; negative perception of illness 3, 17–18 car driving difficulties 87, 88, 91, 100 career issues 9, 85–6, 99 case studies 41; and data gathering 42–3 cerebrovascular accidents 26 chronic fatigue syndrome (myalgic encephalomyelitis: ME) 20–1, 61, 97, 104–5, 110, 147, 156n.13, 170nn.12 13 chronic illness: centrality of 5–6, 23; and desire for normality 78, 80, 88–9, 102, 111, 120, 122; and diagnosis 22–5, 43, 65–8, 140; and disclosure 7, 8, 26, 81–6; effects (physical/social/spiritual) 16–28; and efficiency dogma 17–18, 27–8, 75–6, 77, 106–7, 107, 138, 143, 151; and employment 43–4; exemplars

206

Subject index

152n.2; and feelings of isolation 74, 101, 121; and grief reaction 94–106; as a hidden problem 11–28, 87, 110–12, 122–3, 138; initial symptoms 63–4; as a journey 63–5; lay concepts/judgements of 8, 11, 22, 73, 79–80, 85–6, 106, 137; lifeworlds of individuals 16–28, 42, 55, 136; literature and studies 3, 6, 12, 13, 16–17, 30, 97, 104, 114, 126, 139; as a major Western health problem 12–13, 154n.6; material impact of 94; and negativity 9, 100–6; and potential losses 94–106; and reductionism 5; selfesteem 25–6, 81–2, 83–4; stresses of 26; visual paradoxes 7, 156n.15; and work performance 85–92; work–home mesh 61–2 co-constitution 33–4, 38 cognitive coping 117–21 colleagues: lack of understanding 103; perception/misconceptions of unseen illness 6–7, 79–81, 85–6, 110; and support 101, 123 concepts: mask 122; of participants/researchers 56; of unseen chronic illness 8, 11, 22, 73, 79–80, 85–6, 106, 137 control, as a coping strategy 120–1 coping 112–31; cognitive 117–21, 130; material 127–30; physical 114–17, 130; social 121–6, 130; spiritual 126–7, 130–1, 178n.10; strategies 113, 115, 116, 117–18, 120–1, 126–7, 168n.34 co-workers see colleagues cultural studies 32 Daphne (interviewee: multiple sclerosis) 59, 167n.27; diagnosis 65; disclosure 82; fears and negativity 70, 101, 130; and felt stigma 105–6; initial symptoms 64, 65; on managerialism 107, 109–10; physical limitations 87–8, 91, 95; workplace problems 148 data 32–3, 50; analysis 53–6, 167–8n.32; bracketing 37, 161n.16; coding 54–6, 167–8n.32; computer programs 56; emic/etic 42, 163n.5; gathering 12, 30, 42–3, 160nn.6 7; ideational themes 55; interpretation 33, 45; qualitative 30, 41; reliability and validity 41–2, 163n.4; sifting 55–6; standardisation 41 deafness 61; and social labelling 67–8 death and dying 16, 130, 133; fear of 75,

102–3, 150; Linda’s death 151; Shelley’s death 133, 148, 151 diabetes 26 diagnosis: and appearances of wellness 79–80, 140, 158n.28; and ‘code of silence’ 25, 83; and disclosure 81–4; importance in Western culture 22–4; Parsonian ‘sick role’ 67; process 65–8, 140; reactions to 68–71; and self-image 96; and social labelling 67–8; timing of 82–3; validation of 43 diet, as a coping strategy 115–16 disability: definition/perception of 91–2; and poverty 127–8; psychosocial as an invisible illness 153n.12 Disability Discrimination Act, Australia (1992) 13 disabled: employment of 13–14; fears of 100, 102; government pensions 128–30, 178–9n.11; international symbol for 7–8; lay perception of 6–7; marginalisation of 3, 9, 73, 76, 81; rights of 13, 14, 129; stigmatisation of 21–2 disablement 152n.3 disclosure of illness 7, 8, 26, 81–6, 172n.2; ambivalence about 84; see also under named interviewees Discovery of Grounded Theory, The (Glaser and Strauss) 161n.17 discrimination: and disclosure 84–6; and invisible conditions 22, 157n.24; legislation against 13; in the workplace 5, 6, 8 disease: as a deviation from normality 20–1; management of 23; progress issues 90–1; as self-inflicted concept 21–2, 106; subjective indicators of 24 Don (friend of MV) xii, 147 Eastern medicine 154n.2 ECT (electro-convulsive therapy) 24 efficiency dogma 17–18, 27–8, 75–6, 77, 106–7, 138, 143, 151 electro-convulsive therapy (ECT) 24 employment: fears and insecurity 124–5, 127–30; loss/redundancy 76, 86, 103, 148, 151; participants’ managerial perspectives 107–9 endometriosis 60, 61, 70, 78–9, 86, 88, 121, 169–70n.10; effect on sexual relationships 97–8 energy levels: demands upon 103;

Subject index 207 improvement strategies 114, 116; reduction in 95, 104–5; rest periods 116, 117 ‘Entry into Postmodernity’ (Nietzsche) 179n.5 epilepsy 22, 26 ethics in research 44–6 ethnography 31–3, 44, 160n.4 euphemisms, organisational use of 15–16, 76, 138, 143 exercise, therapeutic 114–16 experiences: of grief and loss 94–106; of participants 39, 41; and phenomenology 37, 55; and selfidentity 134; subjective 42; and trauma 136, 139 fatigue, chronic 95, 106, 114, 136–7 fears: of death and dying 102–3; of disablement and incapacity 100, 101–3; and future uncertainty 89, 90–1, 101–4, 124–5, 130, 137; and stigma 75 feelings: of anger and frustration 103–4; negative 100–6 felt stigma 21, 22, 71, 104, 105–6, 157n.22 175n.17 financial aspects: disability pensions 128–30; illness associated costs/expenses 128; losses 99–100, 128; security/insecurity 127–30 folk beliefs 119, 177n.4 Fred (interviewee: lung cancer) 60; back problem 60, 119; coping strategies 114–16, 118; on death and dying 102–3; diagnosis: process and effects 65–6, 67, 69, 71; disclosure 82; fears and negativity 101, 102–3; frustrations 104; initial symptoms 64; physical limitations 87, 123–5; sick leave 123–5; workplace relationships/problems 88, 123–5 friendships 74–5 functionality of sick people 85–6 Gadamer’s hermeneutics 35, 161n.14 genital herpes 26 glaucoma 59, 68–9, 88, 140, 169n.6 grief and loss experiences 94–106, 173n.2 Guilt, Blame and Shame in Sickness (Finerman and Bennett) 18 health: bodily perfection myth 7, 19–20; as a commodity 3, 18, 23, 172n.5; lay

concepts of 19–21, 22; and postmodernism 141 hearing impairment see deafness heart disease 6, 26 Heidegger affair 162n.18 Heideggerian phenomenology 8, 34–6, 43, 49, 72, 135, 136, 139–40 hermeneutic circle 38, 135 hermeneutics 37, 49, 56 hidden illness 153nn.7, 9, 176n.23, see also chronic illness HIV: and managerialist views 109–10; and stigmatisation 21–2 Human Ethics Review Committee, University of Western Sydney 48 Human Resources, departments/policies 108–9 Human Rights and Equal Opportunity Commission (Australia) 13 humanitarian issues 25 humiliation, feelings of 101, 104, 106, 175n.18 humour 102, 174–5n.14 Husserlian phenomenology 34, 35, 36–7, 39, 49, 140 iatrogenic effects/illnesses 24, 88, 93, 99, 116, 158–9n.29 identities, multiple 36 ideographic research 34 illness: distinction between unseen and hidden 111; iatragenic 24, 88, 93, 99, 116, 158–9n.29; and intolerance of organisations 26–8; lay concepts of 8, 11, 18, 21–2, 23–4, 73, 79–80, 85–6, 106, 119–20, 137, 157–8n.25; and need to hide 110–11, 122; negative perception of 16–17; psychological impact of 25–6; reality of 25, 29, 30, 153n.8, 158n.28; and sick role 23, 158n.27; social acceptability 26; and stigmatisation 4–5, 6, 8, 19, 21–2, 65, 75, 84–5, 110; see also chronic illness incapacity, fears of 100, 101–3 individuals/individualism 138; and morality within organisations 3, 15–16, 106; and negativity towards illness 18; as units of analysis 43–4 insecurity: employment 124–5, 127–30; financial 127–30; workplace 4, 90–1, 96 insider status of researcher 41, 45–6, 133, 134–6, 143–4, 148, 163n.2, 164n.11 interpretation and hermeneutic circle 38

208

Subject index

interstitial cystitis 60, 86, 97, 121, 170n.11 interviews/interviewees 165–8nn.15–34; contact and selection 42, 43–4, 46–9; criteria 47–8; early problems 51–3, 166nn.21–3; focus areas 49–50; humour in 102; lifeworlds 39, 99; participants 59–61; post-interview updates 147–9, 151; pseudonyms 49, 151; recording 51–2, 166n.24; responses to research process 57; rights and privacy 29, 44, 47; transcripts/transcription 45, 51, 52, 56, 102, 162–3n.2, 167n.26, see also Beverley; Daphne; Fred; June; Linda; Maryanne; Rodney; Rosalie; Shelley; Shirley invisible illness 153nn.7, 9, 176n.23, see also chronic illness June (interviewee: glaucoma) 40, 59–60; coping/strategies 116, 119–20, 130, 148–9; diagnosis 68–9, 82; disclosure 82; financial problems 100, 128; frustrations 140–1; negativity 101; and ‘normality’ 80; physical limitations/impairment 80, 95, 130, 140–1, 148–9; sick leave 88; workplace: performance/relationships 80, 88, 140–1 Katherine (friend of MV) xii, 147 labelling 5, 67–8 Lady Chatterley’s Lover (Lawrence) 156n.17 lay beliefs 119, 177n.4 lay concepts of illness/disability 8, 11, 18, 21–2, 23–4, 73, 79–80, 85–6, 106, 119–20, 137 learning disability 61, 122 legislation: Americans with Disabilities Act (ADA) 155n.8; anti-discrimination (Australia) 13; Australia Occupational Health and Safety Act (1991) 156n.14; Zanardo v. Continental Check Point Pty Limited 156n.14 leukaemia 59, 74–5, 88, 91, 97, 133, 169n.5; death of Shelley 148; and negative feelings 101 life-choices 99 lifeworlds of chronically ill 16–28, 31, 42, 55, 136, 155n.11 limitations in chronic illness 89, 95, 99, 105; see also under individual interviewees

Linda (interviewee: breast cancer) 60; coping strategies 88–9, 116, 118–19, 122, 130; death 151; desire for normality 88–9, 120; diagnosis 65, 76, 82, 83; disclosure 82, 83; fears and frustration 89, 101–2, 103–4, 130; financial situation 128, 148; initial symptoms 64; managerial insensitivity 76, 80, 103–4, 148; mastectomy and treatment 60, 76; physical limitations/losses 95, 106; redundancy/retirement 76, 86, 103, 148; sick leave 76, 80, 82, 103; and social support 125; workplace relationships 76, 80–1, 83, 106, 120 lipodystrophy 61, 170–1n.14 literature: on fatigue and pain in chronic illness 114; on felt stigma 104; on invisible chronic illness 6, 77, 97; on neuro-sarcoidosis 94; on spiritual support 126; of traumatic experience 139 losses: career 99, 128; financial 99–100; life-choices 99; mourning 94–5, 103; physical 94, 95; psychological 96, 173n.6 lumbar puncture 88 lung cancer 61, 119; diagnosis and disclosure 69–70, 71, 82; physical effects 87; symptoms 65–6 lymphoblastic leukaemia see leukaemia malingering, lay assumptions in unseen illness 79–80, 171n.15 managerialism 106–10, 138, 143; participants’ perception towards 107–10 marginalisation, of disabled 3, 9, 73, 76, 81 Maryanne (interviewee: endometriosis/interstitial cystitis) 60; career issues 99; coping strategies 119, 121; disclosure/ non-disclosure 86, 111, 122; dismissal/redundancy 86; financial losses 128; managerial insensitivity 78–9, 86; physical limitations/problems 78–9, 95, 97, 99, 122; social relationships 97, 111, 122; workplace problems 78–9, 99 mastectomy 60, 76, 96 medical profession 22–5, 139; ‘code of silence’ 25; and cosmetic miracles 19, 156n.16; and diagnosis of illness 22–3;

Subject index 209 inhumanity of 24–5, 159n.30; and sexist ideologies 25 meditation 119, 127 methodology 8, 164n.9; choices 31–9, 49; ethnography 31–3, 44; and ontology 136; phenomenology 136; qualitative 30 Michael (MV’s husband) 112, 149, 150; brain biopsy 62–3, 94; progress of illness 58–9, 94, 145–6, 179n.1 models: coping 113, 131; economic 3; medical 16, 23–4, 25, 65, 154n.2; phenomenological 42, 43, 56, 161n.12, 168n.33; of world of work 16 Modified Chain Referral Technique (Watters and Biernacki) 47–8 morality in the workplace 3, 15–16, 106 motherhood, and effects of chronic illness 97–8, 100 multiple sclerosis (MS) 20–1, 59, 61, 107, 140, 169n.4; diagnosis of 24, 67, 96; and discrimination 85; effects of drug therapy 93–4; effects on relationships 97; emotional responses 26, 70, 96; fears and uncertainty 90, 100, 101, 128, 148, 150; and managerialism 107, 109; physical difficulties/problems 87–8, 91; and stigmatisation 22, 105–6; symptoms 65, 106; see also author (MV); Beverley; Daphne Multiple Sclerosis (MS) Society xiii myalgic encephalomyelitis (ME) see chronic fatigue syndrome (CFS) Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Society 118 narrative research 30, 44, 84, 134, 135, 142; metanarratives 39, 154n.2; worklife narratives 106–10 National Conference of Public Administration Theory Network (10th) 153–4n.1 National Health Surveys, Australia 13 negative perceptions of disability 6–7 negativity 8, 9, 100–6, 128; see also under named interviewees neuro-sarcoidosis 94 nomothetic research 34 normality 152n.4, 178n.6; as a coping strategy 120–1; desire for 78, 80, 88–9, 102, 111, 120, 122; and health equation 20–1; and respondents’

limitations 88–9, 105; within organisations 27, 143–4 objectivity: in organisations 138; in research design 38–9, 41 obligations of researchers 44–5 Oedipus complex 159n.31 One Flew Over the Cuckoo’s Nest (Kesey) 156n.17 organisations: co-worker relations 121–2; and efficiency dogma 17–18, 27–8, 75–6, 77, 106–7, 138, 143, 151; ethics of 138, 143; and individual morality 3, 15–16, 106; inhumanity of 77, 138, 139, 143, 151; insensitivity of 76, 92; intolerance towards illness/disability 26–8; and ‘invisible’ problems 4, 10; and postmodernism 142; and reliance on medical model 25; use of euphemisms 15–16, 76, 138, 143; see also workplace pain 16, 19, 52, 61, 64, 66, 67, 87; controlling 114; of silence 83; and work performance 87, 88, 92 parenthood and chronic illness 97–8 participants in research study see interviews/interviewees pensions: disability 128–30, 178–9n.11; and Social Security Department 129–30 phenomenology 8, 33–9, 41–2, 140; eidetic 56; German phase 34, 160–1n.11; hermeneutic 37, 38, 49, 56; models 42, 43, 56, 161n.12, 168n.33; in studies 42–3, 56 physical impact of chronic illness 95, 99; coping strategies 114–17 physiotherapy 114 pity: and anger 103 positive thinking 118–19, 156n.13, 177n.3 postmodernism 39, 139–44, 179n.5 poverty and disability correlation 127–8 prayer and spirituality 126–7, 130–1 pre-understanding 38 prednisone xii, xiii, 62, 93–4, 146–7 pressures: of hidden illness 18–19; of Western society towards health 19–20 priorities, and coping strategies 120–1 Protestant Ethic and the Spirit of Capitalism, The (Weber) 17 psychological factors: in health 18–19, 20;

210

Subject index

in illness 25–6, 68, 96; in research 33–4, 113 rationalism 143 reality(ies) 20, 33, 140; of illness 25, 29, 30, 153n.8, 158n.28; multiple 36; and phenomenology 33–4, 55 reductionism: and illness 5; in research 35–6, 113, 163n.6 redundancy as a result of illness 76, 86, 103, 151 reflexivity 31, 52, 135, 161n.14 relationships: and disclosure 84; interpersonal 97–8; in research 45; sexual 97–8; social 74–5, 77–8, 97, 104–5, 122–3; workplace 9, 67–8, 74–5, 77–8, 91, 121–2 research project: approach 11, 29–30, 33, 35–6, 41; demographic survey 49, 53; design 8–9, 40–1, 51, 53, 137; and ethics 44–6; generalisability and representativeness 42–3; influence/input of researcher 12, 29, 35, 36, 165–6n.19, 161n.15; insider status of researcher 41, 45–6, 133, 134–6, 143–4, 148, 163n.2, 164n.11, 172n.1; limitations of study 57; methodology 8, 29–30; objectives 29–30; pilot/main study 29–31, 42, 50–1; reporting 40–1; terminology 56; and theory 36–9, 56, see also data; interviews; phenomenology research project: validity 41–2, 163n.4 resilience and coping 130 respondents see interviews/interviewees rhetoric of managerialism 15, 16, 17, 27, 76, 138, 143, 151 Rodney (interviewee: spondylolisthesis) 60, 176nn.21,22; coping strategies 71, 119–20; diagnosis 70–1, 82; disclosure 82, 85–6; managerialist views 107–9; physical limitations 87, 89–90, 91–2, 99; social relationships 97; workplace perceptions 80–1 Rosalie (interviewee: chronic fatigue syndrome) 61; career/financial losses 99, 128; coping strategies 116, 118, 126–7; disclosure 122–3; managerialist views 110; negativity 101; physical limitations/progress 95, 104–5, 147; social relationships 97, 104–5, 122–3; spiritual beliefs 122–3; workplace relationships 122–3

sarcoidosis xii, xiii, 59, 94, 145 security, financial 127–30 selection of participants 42, 47–9 self-disclosure 81, 83, 84, 134, 135 self-esteem: and disclosure 81–2, 83–4; and financial coping 130; loss of 96, 173n.6; and psychological impact of illness 25–6, 96 self-estrangement from workplace 155n.10 self-image: and disclosure 81–4; and experience 134; and psychological loss 96 self-therapy 114–16 sexual relationships, impact of illness on 97–8 shame and felt stigma in chronically ill 21, 22, 83, 102, 104, 106, 175n.18 Shelley (interviewee: lymphoblastic leukaemia) 40, 57, 59; career loss 99; coping strategies 116–17, 119, 122; disclosure 82, 84; dying and death 74, 75, 133, 148, 151; fears and anxiety 101; finances and disability pension 128–30; physical limitations 77, 91, 116–17; and research participation 57; and social relationships/support 74–5, 77–8, 97; state support 128–30; workplace relationships/support 74, 75, 77–8, 91 Shirley (interviewee: endometriosis/lipodystrophy/hearing impairment/learning disability) 61, 173–4n.8; fears 97–8; and labelling 67–8; life-choices/losses 95, 98, 99; negativity 101; physical effects and limitations 87, 88, 95, 122, 130; social relationships 97–8; symptoms and diagnosis 67, 70, 87; workplace relationships/problems 67–8, 122 sick role 23, 158n.27, 171n.18 sick leave 88, 103, 123–4 sight problems see visual impairment silence: conspiracy of 26; and disclosure 83–4; of unseen chronic illness 136–7 slipped disc (prolapsed invertebral disc) 61, 87, 119 social coping 121–6 social interaction 4–5 social labelling 5, 67–8 social support 73–81, 123, 125–6, 178n.8 spirituality of participants 126–7, 130–1, 178n.10 spondylolisthesis 60, 169n.7 state intervention 130

Subject index 211 stereotyping, and chronic illness 5, 6 stigma/stigmatisation: achieved/ascribed/enacted 21–2, 157nn.20,21,23; defensive/protective practices 122, 178n.7; and disclosure 81, 82; and discrimination 84–6; felt 21, 22, 71, 104, 105–6, 157n.22, 175n.17; of illness and disability 4–5, 6, 8, 19, 21–2, 65, 75, 84–5, 110, 172n.2; literature on 104, 157n.19, 160n.5; and self-image 83–4 Street Corner Society (Whyte) 164n.11 stress 26; coping with 115, 119; workplace 4, 90–1 studies: cancer research 16; of chronic illness 3, 6, 12, 13, 16–17, 30, 73, 97, 104, 114, 126, 139; cultural 32; phenomenological 42–3, 56 subjectivity—objectivity 38, 162n.1 support: expectations 77–9; organisational 129–30; social 73–81, 123, 125–6; state 128–30; workplace 73–81, 101, 123–6 survival: material 127–30; narratives 9–10, 112; physical 114–17; social 121–6; spiritual 126–7; strategies 113, 115, 116, 117–18, 120, 126–7, 133 Sydney Morning Herald 47 terminology: agon analysis 168n.33; ‘chronic illness’ 152n; emic/etic data 42, 163n.5; ‘invisible’/’hidden’ illness 153nn.7, 9, 176n.23; ‘normal’ 152n.4 theory: grounded 37, 56, 161n.17, 168n.33; role of 36–9, 56 transcendentalism 39 travel/transport difficulties and problems 80, 87, 91, 100 treatments: and absence from work 88; regimens 99 trust: in research relationships 26, 41, 45, 46, 47, 50, 52; violations of 143 truth(s) 11, 33, 44, 45, 138, 142; and meaning 134

uncertainty, and fears 101, 102, 124–5, 174n.11 understanding: from family and colleagues 121, 125, 140; ‘historicality’ of 38; need for 11–12, 27, 28 unemployment/underemployment 100, 127–8 visual impairment 80, 88, 91, 95, 130, 140–1, 148–9 wellness: and appearances fallacy 3, 73, 79–80, 137; illusion of 8 Western culture, and influence of medical profession 22–5 wheelchairs, stereotypical image of 19–21 women, and inability to have children 97–8 ‘women’s problems’ 79, 122, 170n.10 work-life narratives 106–10 work, and self-esteem 19, 25–6, 81–2, 83–4 workplace: chronic illness literature and studies 3, 12, 13, 73; co-worker reactions/support 74–5, 101, 121, 142; difficulties and problems 141–2; disclosure of illness 73, 81–4; discrimination 73, 84–6; functionality/performance 73, 85–6, 86–92; insensitivity 75–6, 148, 151; marginalisation/alienation 3, 9, 73, 76, 81, 176n.19; physical difficulties and needs 87–8, 89–90; redundancy 76, 86, 103, 151; relationships 9, 74–5, 121–2; self-estrangement from 155n.10; sick leave 88, 103, 123–4; social support 73–81, 123, 125–6; stress and insecurity 4, 90–1 writing see author Zanardo v. Continental Check Point Pty Limited 156n.14