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My Imaginary Illness

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

With a Clinical Commentary by Brian David Hodges
Foreword by Bonnie Blair O’Connor
Copyright Date: 2010
Edition: 1
Published by: Cornell University Press,
Pages: 248
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  • Book Info
    My Imaginary Illness
    Book Description:

    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.

    eISBN: 978-0-8014-5994-8
    Subjects: Health Sciences

Table of Contents

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  1. Front Matter
    (pp. ii-vi)
  2. Table of Contents
    (pp. vii-viii)
  3. Editor’s Note
    (pp. ix-x)
  4. Foreword
    (pp. xi-xvi)

    Much press has been devoted to how physicians, nurses, and other clinicians acquire and apply their knowledge and skills, how they interact with one another as coordinated professionals, and how they relate to and communicate with patients and their concerned family members in the setting of (especially, serious) illness and the care and treatment it requires.

    This book is the second in a collection from the Cornell University Press series on the Culture and Politics of Health Care Work that focuses on “How Patients Think”: how they experience their illnesses and the changes these make in their lives; how they...

  5. Acknowledgments
    (pp. xvii-xx)
  6. Introduction
    (pp. xxi-xxxiv)

    Sometimes it occurs only once, but sometimes twice or more often in a day. I might be sitting at my desk typing an e-mail, walking the length of a corridor on my way to lecture, or skiing with my family in the brisk air of a snowy day in the mountains, but the feeling is always the same. It envelops me and then it gently subsides. Initially, the impulse is so strong that I can momentarily sense my chest walls collapsing and oxygen-starved tissues burning as my body craves fortitude and air. And then the sensation passes.

    At least once...

  7. 1 Beginnings
    (pp. 1-5)

    In the spring of 1986, I was twenty years old and finishing my last year of undergraduate education at the University of Toronto. I was much younger than my peers, having entered university when I was two years younger than most Ontario college students (who, at the time, completed thirteen years of school before entering college). I was thus used to being “ahead” of everyone else. But for the first time in my life, I had fallen behind. I left campus without completing my honors senior thesis. I had had to undergo major abdominal surgery for an ovarian cyst in...

  8. 2 The Original Crisis
    (pp. 6-11)

    The first thing I remember is not being able to see. My eyes were open; at least it felt that way. But I couldn’t be sure because I’d just woken up. My eyes shifted heavily. I shut them and waited a little. A voice urged me, “Dear, it’s time to wake up now!” I opened my lids again and saw only opaque shadows moving above me. “Wake up, dear! Wake up! … What’s her name?!” I heard my name over and over, sometimes gentle, sometimes insistent: “Open your eyes!”

    Jesus, I thought, my eyes are open. And then I realized...

  9. 3 Facing Uncertainty
    (pp. 12-14)

    Clinicians often turn to psychosomatic diagnoses when they can find no organic cause for an individual’s complaints. Patients who have symptoms that do not fit into well-understood physiological patterns easily fall under the rubric of “not yet diagnosed” (NYD) and/or somatoform or hysterical disorders. In this sense, they challenge received notions of what it is, in fact, to be “diseased.” Hysterical symptoms are ones that do not fit comfortably within traditional medical conceptions and classifications. They introduce uncertainty into the process of diagnosis. While subjectively the symptoms remain very real for the sufferer, objectively they offer no clinical evidence for...

  10. 4 Ontological Apprehensions
    (pp. 15-18)

    Weeks dragged by in the hospital in northern British Columbia as I awaited transfer to a facility across the country in Toronto. When I awoke each morning, I would try to guess what position my limbs were laying in; I found it astonishing that I often couldn’t tell where they lay without looking at them. Paradoxically, I found that my weaker hand felt surfaces and temperatures in astonishing detail. Water felt hotter and colder than it did with my stronger hand. Smooth surfaces undulated with ridges that were usually imperceptible. These novel sensations both intrigued and terrified me. I sensed...

  11. 5 Diagnosis: Conversion Reaction
    (pp. 19-22)

    When I got back to Toronto, I became acutely aware of my losses. I measured myself against recent memories of myself walking, training, studying, and working in the familiar cityscape. I felt deeply humiliated. Only weeks before I had bragged to my friends of the small fortune I would make tree planting, about how this money would be used to travel the world or attend graduate or law school. Now I couldn’t even work and I was deeply afraid.

    One of the first rules I learned as I child was not to show fear. I thus approached the medical staff...

  12. 6 Credo
    (pp. 23-30)

    After my discharge, I stayed for three weeks with a family I had known since I was four. And then I moved on. Fortunately, I had been able to arrange to rent a room in a house of friends near the university. Once there, I took over the master bedroom of the professor who was away on sabbatical. I unloaded a duffel bag of clothes into the bureau and tried to begin my life anew. My aim was to finish my undergraduate thesis, hold down some part-time jobs, and apply to graduate, law, and medical school for the following academic...

  13. 7 More Paralysis and More Psychological Remedies
    (pp. 31-39)

    In Toronto I continued the ongoing psychotherapy that I had engaged in for two years. Going five days a week had become emotionally addictive. The psychiatrist, Dr. D., espoused a view that if I totally committed myself to an in-depth relationship with him I would ultimately resolve all of my physical and psychological issues. He had taken on my case soon after I had restarted physical therapy at a new hospital. We connected well. The books on his bookshelves were many of the same on my own. Further, he encouraged me to explore any books that caught my eye and...

  14. 8 A Pyrrhic Victory
    (pp. 40-49)

    But I’ve gotten ahead of myself. Let me go back to when I was twenty-two years old and I lay on a surgical recovery ward with profound paresis for a second time (after my appendectomy). I not only suffered from the physical discomfort of my incapacity but also felt utterly alone. I grasped that my caregivers viewed my presence with suspicion and disfavor. The young surgeons who had operated on me had to present my case at “M & M” (morbidity and mortality) rounds in which their actions were reviewed by superiors and peers in the hospital. Despite their affable banter,...

  15. 9 Becoming a Pariah
    (pp. 50-58)

    I was now twenty-four, and my life had resumed a rhythm of sorts, until one morning when I bent over to tie my shoes and my stomach suddenly rushed down my throat and emptied onto the carpet. I hadn’t actually vomited. It was as if a portal had suddenly opened up and my body just let go of the food it was digesting. I thought little of it, until it happened again a few days later. During this period I fell ill with yet another bout of pneumonia. I took a course of antibiotics but then had another round a...

  16. 10 Fire! Fire!
    (pp. 59-78)

    In an effort to make myself feel more independent, I took physical risks that, in hindsight, I should not perhaps have taken. Moreover, despite my best efforts, I could not avoid feeling frustrated and ashamed by my condition.

    An ancient parable of hysteria recounts the story of a young emir who seemed to be paralyzed. The attending physician, after much deliberation, believed the man to be perfectly healthy. One day, while he was visiting, he instructed a servant to come running into the room shouting “Fire! Fire!” In an effort to save himself, the emir jumped up and ran out...

  17. 11 Love in the Midst of Ruin
    (pp. 79-91)

    The neurosurgical unit overlooked a dilapidated but busy downtown intersection. Chain stores occupied three corners. A bramble of telephone and streetcar wires wound itself in a chaotic tumult over the heads of pedestrians and cars. From where I lay, I could hear a chorus of car horns rise up from the street when, invariably, an electric bus’s or a tram’s power rod would become dislodged in the melee and the transit car’s inert body would obstruct three or four lanes in several directions. The driver would then get out and wrestle with two large bungeelike cords and half-haul and half-bounce...

  18. 12 Grasping at a Diagnosis, Hoping for a Cure
    (pp. 92-100)

    Originally, Dr. O. met with me for over an hour. He didn’t perform a physical exam but simply asked me to recount the tale of my illness from the very beginning. Typical of his peers, he said little except to ask for occasional clarification about dates and symptoms. We booked another appointment for the following week. During this meeting, he examined me thoroughly but again said little. When we sat down in his office afterward he asked whether I would be willing to undergo more tests. We agreed to repeat a spinal tap, nerve-conduction tests, and an MRI. I had...

  19. 13 The Crisis Deepens
    (pp. 101-118)

    I was thirty years old when I lifted myself from a bath on a gray February morning into my second respiratory failure in nine months. Within seconds, as my breathing became slower and shallower, I could no longer speak. Aruna managed to shift me from my wheelchair onto the bed.

    “Are you okay?” She asked.

    I shook my head.

    “Oh shit! We’re going to Emerg again, aren’t we?”

    I nodded.

    Her face creased with worry, “You’re sure? You’re sure you want me to call 911?”

    I looked at her. I knew exactly what she was asking. Could I bear another...

  20. 14 Contemplating Hemlock
    (pp. 119-122)

    Within two days, I lay in my own bed. While my family physician agreed to restart medications for myasthenia gravis, I was still very ill, and Aruna and I were utterly alone. We knew that the general proviso was that somatizing patients should not have access to more than the bare minimum of medical care because access to medical resources would only legitimate the erroneous belief that they were ill. Given the sheer depth and degree of my incapacity during the past weeks, along with the positive Tensilon test administered in the ICU, we thought that this might have finally...

  21. 15 Icarus
    (pp. 123-131)

    My recovery was a rebirth. I had been in a crucible of suffering for many years. I emerged from this with a chronic and gnawing fear of dying—not of death, but of dying. I had lain, expiring, for weeks in ICU, and I did not think I could bear to take that on again. The only downside to being alive, I reasoned, was that it meant that I must at some point die. Death was not the problem—dying, however, was. Dying was lonely and painful. So, even as I got better, I was shadowed by this silent morbid...

  22. 16 A Crisis, American Style
    (pp. 132-139)

    I returned to the nonspecialized care of my GP in Toronto. Within a year and half, I wrote and defended my doctoral dissertation. Our family now lived in a small semidetached house on a street near midtown. I still had fluctuations of strength and pain that were sometimes difficult to weather. But for the most part, my family and I were blissfully happy.

    I now started to probe the academic job market. Much to my surprise, I won a Fulbright fellowship to study law in the United States. But for several weeks it seemed that I might not be abel...

  23. 17 Gravy
    (pp. 140-152)

    It has been seven years since we set out westward across the vast expanse of the continent. And many things have changed, but many things also remain the same.

    When we first arrived in Calgary, I quickly found a family doctor. Even as I did so, I followed the advice of the pain specialist who had treated me in Toronto. When he knew I was moving, he told me, “Look, I hope you can get a new start there. You have to be truthful about your medical history. But hopefully, they will want to come to your rescue.” He chuckled...

  24. Clinical Commentary
    (pp. 153-192)
    Brian David Hodges

    For any doctor or nurse—anyone whose work is caring for the sick—reading the story of Chloë Atkins’s decades’ long encounter with the medical system will be as familiar as it is distressing. It certainly was for me. Nonetheless, it has profound resonance with the experiences I have had over the past twenty-five years as a medical student, generalist intern, psychiatry resident, and finally as a professor of psychiatry and medical education. As Atkins’s narrative unfolds we meet a cast of characters: some effective, some not; some who convey a sense of warmth and trust, some who are repellant...

  25. Bibliography
    (pp. 193-202)
  26. About the Authors
    (pp. 203-204)
  27. Index
    (pp. 205-212)