My Imaginary Illness: A Journey into Uncertainty and Prejudice in Medical Diagnosis

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Overview

How Patients Think

At age twenty-one, Chloë Atkins began suffering from a mysterious illness, the symptoms of which rapidly worsened. Paralyzed for months at a time, she frequently required intubation and life support. She eventually became quadriplegic, dependent both on a wheelchair and on health professionals who refused to believe there was anything physically wrong with her. When test after test returned inconclusive results, Atkins's doctors pronounced her symptoms psychosomatic. Atkins was told not only that she was going to die but also that this was her own fault; they concluded she was so emotionally deranged that she was willing her own death.

My Imaginary Illness is the compelling story of Atkins's decades-long battle with a disease deemed imaginary, her frustration with a succession of doctors and diagnoses, her immersion in the world of psychotherapy, and her excruciating physical and emotional journey back to wellness. As both a political theorist and patient, Atkins provides a narrative critique of contemporary medicine and its problematic handling of uncertainty and of symptoms that are not easily diagnosed or known. She convincingly illustrates that medicine's belief in evidence-based practice does not mean that individual doctors are capable of objectivity, nor that the presence of biomedical ethics invokes ethical practices in hospitals and clinics.

A foreword by Bonnie Blair O'Connor, who teaches medical students how to listen to patients, and a clinical commentary by Dr. Brian David Hodges, a professor of psychiatry, enrich the book's narrative with practical guidance for medical practitioners and patients alike.

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Editorial Reviews

From the Publisher

"I met Chloë G. K. Atkins about fifteen years ago. What struck me about her at that time was that she was a leader: smart, courageous, and good humored. This book shows the same Chloë, but along with the context of the battle that she had to lead herself through. The word that comes screaming through every page of this story for me is humility—and how it is so desperately needed by physicians and other health workers who aspire to care for the sick. Every health care worker would be the better for reading Chloë's story."—Peter A. Singer, MD, MPH, FRCPC, FRSC, Professor of Medicine and Sun Life Financial Chair in Bioethics, University of Toronto

"In this brave account of her severe experiences of illness, medical neglect, and sometimes outright mistreatment, Chloë G. K. Atkins tells a story that needs to be heard by all clinicians. Doctors and nurses today are expected to treat all of their patients empathetically, whether they like them or not. Yet over and over again we see patients with difficult-to-diagnose conditions, or other predicaments that frustrate clinicians, treated disdainfully. Just as justice is most necessary not when people agree but when they are subject to conflicts, skillful empathy is most necessary when clinicians have complicated, negative emotional reactions to patients. The aim in such cases is for the clinician to empathize with the patient's dilemma, rather than to wait until she can neatly diagnose the patient in order to show empathy. Atkins shows how powerfully therapeutic it was for her when caregivers grasped her dilemmas of daily living, from her own perspective."—Jodi Halpern, MD, PhD, University of California, Berkeley, author of From Detached Concern to Empathy: Humanizing Medical Practice

"Chloë G. K. Atkins's gripping book My Imaginary Illness shows scholars and laypersons alike how humiliating and degrading it is for persons with disabilities to routinely face the rampant discrimination that plagues the medical community and society at large. Her compelling narrative reveals how she sought and found her dignity and humanity, all while fighting and recovering from an illness that the medical community could not understand given the limits of biomedical science. In this unique book, Atkins convincingly pokes holes in the biomedical community’s ethical shortcomings and its empirical limitations by employing her own rigorous political theory lens. Doctors, patients, and students of political theory will all profit greatly from reading Atkins's book."—Ruth O'Brien, The Graduate Center, The City University of New York

"Chloë G. K. Atkins's book is a must-read for all student and graduate nurses, physicians, medical sociologists, social workers, and all else who work in health care. It dramatically illustrates the dangers of a totalizing medical discourse that denies patients any control over their disease. All health care workers must learn multiple discourses of illness and treatment and respect the embodied experience of patients, eschewing any approach that shames and blames the patient."—Patricia Benner, RN, coauthor of Educating Nurses: A Call for Radical Transformation

Library Journal
From age 21 into her early thirties, Atkins (communication & culture, Univ. of Calgary, Alta.) lived the nightmare of having real physical symptoms, including intermittent paralysis, attributed to psychosomatic illness. This was partly because her likely myasthenia gravis failed to fit into a diagnostic cubbyhole based on standard tests. Subsequently, Canadian and U.S. physicians, nurses, and therapists, who first approached her sympathetically, rejected her when learning of previous hospitalizations suggesting psychogenesis. Open-minded medics were intimidated into falling in line by peers or the system. Amid the chaos, Atkins still managed to gain professional success and a happy personal life. VERDICT Atkins's description of her struggle is a well-told cautionary tale for patients, their families, friends, and especially caregivers—whom clinical commentator Brian David Hodges (psychiatry, Univ. of Toronto) feels would benefit from what will be an uncomfortable read. The system Atkins encountered deals poorly with uncertainty, and Hodges suggests possible improvements to health-care provider education and communications skills.—Dick Maxwell, Porter Adventist Hosp. Lib., Denver
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Product Details

Meet the Author

Bonnie Blair O'Connor is Professor of Pediatrics (Clinical) and Associate Director, Pediatric Residency, at Hasbro Children’s Hospital/Alpert Medical School at Brown University in Providence, R.I.

Brian D. Hodges is Vice-President Education at the University Health Network, Professor of Psychiatry, Scientist at the Wilson Centre for Research in Education, and Richard and Elizabeth Currie Chair in Health Professions Education Research at the University of Toronto. He is the coauthor of Creating the Health Care Team of the Future: The Toronto Model for Interprofessional Education and Care and coeditor of The Question of Competence: Reconsidering Medical Education in the Twenty-First Century, both from Cornell. He is also the author of The Objective Structured Clinical Examination.

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Table of Contents

Editor's Note

Foreword Bonnie Blair O'Connor O'Connor, Bonnie Blair

Acknowledgments

Introduction

1 Beginnings 1

2 The Original Crisis 6

3 Facing Uncertainty 12

4 Ontological Apprehensions 15

5 Diagnosis: Conversion Reaction 19

6 Credo 23

7 More Paralysis and More Psychological Remedies 31

8 A Pyrrhic Victory 40

9 Becoming a Pariah 50

10 Fire! Fire! 59

11 Love in the Midst of Ruin 79

12 Grasping at a Diagnosis, Hoping for a Cure 92

13 The Crisis Deepens 101

14 Contemplating Hemlock 119

15 Icarus 123

16 A Crisis, American Style 132

17 Gravy 140

Clinical Commentary Brian David Hodges Hodges, Brian David 153

Bibliography 193

About the Authors 203

Index 205

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