New Book From Cornell University Press

This fall, our series at Cornell University Press on the Culture and Politics of Health Care Work published a remarkable new book. It’s entitled My Imaginary Illness: A Journey Into Uncertainty and Prejudice in Medical Diagnosis and its written by political philosopher and professor at the University of Calgary in Canada Chloe G. K. Atkins. The book is part of a collection we are doing at the Press which is called How Patients Think. The series was inspired by Jerome Groopman’s book, How Doctors Think. Each book in the series begins with a short contextual commentary written by a medical professional – in this case by Bonnie Blair O’Connor, a medical educator and ethnographer. The book then moves to the patient narrative and concludes with a clinical commentary written by a physician or nurse. The commentary is intended to ask what we can learn from the patient’s story and consider how clinicians can change their practice and thus improve the patient experience and patient care. In this case, Brian Hodges, M.D a Professor of Psychiatry at the University of Toronto and director of U of T’s the Wilson Centre for Research in Education has written a brilliant clinical reflection about Atkins’ experience.

To say that the the story Atkins tells is important is an understatement. It is one that is too often repeated in a medical culture fixated on rigid categories of diagnosis in which doctors – and nurses – are infected with a very particular disease (or as Atkins would put it, prejudice). The physician is expected – and expects him or herself – to come up with an iron-clad “accurate” diagnosis of the patient’s problem, treat the problem, and fix it – hopefully forever. If the physician cannot come up with a diagnosis – and quickly – the search for blame begins. Rather than blame themselves, the state of science, or simply the human condition; rather than realizing that, in fact, blame is not the appropriate category to apply to the experience, physicians quickly blame the patient. If the physician can’t find a clear organic cause for the illness, then it must be in the patient’s head. He – or in this case, she – is nuts, has conversion hysteria – maybe the patient or someone in the patient’s family is even deliberately making themselves sick to get attention, as in Munchausen’s Syndrome or Munchausen’s by proxy.  Rather than compassion and empathy, terms like “secondary gain,” “wasting time and resources,” “faking it,” are bandied about.

In this case, when she was only 20, Chloe Atkins developed mysterious neurological symptoms. She had serious motor problems, at times couldn’t walk, at times could not even move. Maybe she had a stroke. Maybe she had this, or that. Maybe, maybe, maybe… But no matter how many tests or interventions were delivered, Atkins would recover, slightly, then relapse, then get better, then sicker. No one could figure it out. So, doctors decided it was all in her head. The diagnosis became conversion hysteria and that’s what went into the chart. And the chart was no longer a constructive medical chronicle used to convey relevant clinical information, but a rather what O’Connor correctly dubs “a rap sheet” that contained the allegation and evidence and the patient was, in effect, rendered a medical criminal. Even when she was lying in bed, unable to move a muscle and on a ventilator, doctors and nurses turned against Atkins. (For those nurses who read this, read carefully, because yes indeed, nurses appear little better in this account than MD.s)  Even if she were mentally ill – which she was not – one would imagine that caregivers would deliver compassionate care (after all a mental illness is every bit as much of an illness as a physical one). One would be wrong. People who were immediately sympathetic, suddenly became detached and judgmental when they read the “rap sheet’ and discovered that it was “all in her head.” What made things even worse for Atkins was the fact that she wasn’t the picture perfect patient (is there such a thing?) with a loving family at the bedside waiting to fulfill her every need.  She was estranged from her parents, which simply confirmed the “rap sheet”” conclusion that she was a head case and deserved no sympathy whatsoever .  As Hodges so eloquently puts it, instead of exhibiting curiosity about the patient, they became angry — and,as time went on and she refused to get well,  even angrier — at the patient.

And so it went for 20 agonizing years. With the exception of the odd doctor or nurse, the majority of so-called caregivers who Atkins encountered, were either blaming, or downright hostile. What is even more tragic, from my point of view, is that RNs exhibited as much callousness as physicians. (And, least you be tempted, if you’re a nurse, to dismiss this as atypical, recall all the books and chronicles of patient experiences like Ann Fadiman’s brilliant If The Spirit Catches You and You Fall Down, or renderings of Helen Haskell’s experience of the death of her son Lewis Blackman.  Invariably nurses are as susceptible to the disease of anger at the patient as are MDs.)

Finally Atkins found a physician who was willing to believe the patient and decided that uncommon form of Myasthnia Gravis was the working diagnosis. Atkins was treated with MG medication and is a great deal better. But her diagnosis is still contested and she fears that, if she falls into the hands of the wrong doctor, she will once again be stigmatized as making it all up. For fortunately, her current physician has a concept of what I call a “good enough diagnosis,” – one that works, one that helps the patient but one that may not conform to the strict medical rendering of a disease as it has been defined by the medical gods who dictate the precise parameters of a condition and who seem to think they own not only the diagnosis but the patient’s experience.

In his conclusion, Brian Hodges asks doctors and nurses to think about why they so often react to complex patients with anger rather than curiosity and to ask themselves, “am I part of the solution or part of the problem?’

Since publishing this book a few short months ago, I have encountered more and more patients who are having or have had this experience.  A friend in California is suffering from unexplained and debilitating dizziness.  Doctors examine, probe, investigate.  They can find “nothing” physical, so as my friend’s life becomes more and more constricted, they declare that it must be all in her head — which, by the way, it probably is, but not they way they mean.  Another friend’s 24-year-old daughter has mysterious stomach problems — can eat barely a thing, is constantly constipated.  More probing, more head scratching, until finally, violating every patient privacy rule on the book, the physician calls the mother (without the daughter’s permission) and asks her about her daughter’s mental status.  The mother is shocked.  Finally, he effectively fires the patient by telling her there is nothing he can do for her –maybe she should go to a psychiatrist.  Finally, another friend, an internist who teaches residents at a teaching hospital here in Boston confided that when he and other physicians and physicians-in-training see a chart the size of the one Atkins had produced, they inwardly groan.  Patients with charts like telephone books are referred to as “frequent flyers,” and the object of the exericse is to  try to get rid of the patient like a hot-potato, as quickly as possible.    In our increasingly Midas muffler shop like, industrial medical system, the idea is throughput, getting the patient in and out not exploring and sticking with it over the long-term.

When I read Chloe Atkins book in manuscript, I was convinced it had to be published.  I have never had a similar experience — at least not one so serious and persistent.  But I have, like the people above, encountered doctors who couldn’t figure it all out and who decided I was to blame.  I sympathize with their dilemma, as does Brian Hodges in his clinical reflection.  I can only imagine how hard it must be to see a parade of patients, day after day, year after year, all suffering from something, all wanting to know why, all pleading to be fixed.  With our obsessive fixation and promotion of medical miracles and those who perform them, our society and our medical system often make it impossible for doctors to arrive at a “good enough diagnosis,” and thus we inadvertently encourage the kind of callousness and arrogance Atkins and so many other patients encounter.  It’s the opposite side of the miraculous coin.   And it needs to be changed.

I hope everyone who reads this will read this book and more important, that they will reflect on Hodges’ question and suggestions.  Medical professionals need to be able to express and explore their anger and frustration.  It shouldn’t be turned inward, and it certainly shouldn’t be turned toward the patient.  It should lead instead to the curiousity and compassion for the human condition that Hodges prescribes.  Ultimately, that is the only Rx that will actually work.

Showing 6 comments
  • Allison Clough MD MPH

    My practice was filled with patients who had been rejected, fired and frustrated by the medical system. During waves of medical reform, which have, in effect, resulted in the monopolization of health care by insurance companies, it has gotten increasingly difficult to take care of patients who take more than a couple of visits of 10 to 20 minutes to diagnose. As I blithely struggled with these “difficult” patients, my practice collapsed financially. I helped many, it’s true, but there were many others whom I did not know how to diagnose, and who suffered many referrals without success.

    One diagnosis haunts me still: celiac disease or gluten enteropathy. As an undiagnosed celiac myself, I condemned my patients with abdominal pain to suffer, like me, in silence, or to take the latest (often dangerous) wonder drug. Now that I rarely suffer the pain of wheat poisoning, and as I have come out from under the brain fog, I am interested in the stories of celiacs and in the epithet of hypochondriasis. I am particularly interested in other rheumatic symptoms associated with gluten enteropathy.

    Celiac disease is newly on our radar, but it is not a new condition.

    Thanks for publishing this important book, and for your report, Suzanne.


    • Suzanne

      thanks alison for your thoughtful comment

  • Gregg

    I wish I could write that Dr Atkins experience, particularly at the hands of registered nurses, was the exception. Sadly, it is not. Dr Arthur Frank, a sociologist, wrote a compelling piece entitled “At the will of the body: Reflections on illness” which describes a story strikingly similar to Dr Atkins’ experience. It seems to me that as soon as nurses began to be paid what we were worth, we suddenly had careers to manage rather than patients to care for.

    Regardless of the workloads, short staffing, variable levels of organizational and practice autonomy, nurses have choices. More and more, those choices reflect the blade more than they do the chalice. Vulnerable patients, lingering in that bed, uncertain, often in pain or uncomfortable, have become a nuisance for nurses. It is the most unkind cut of all. And it WILL NOT change until we – WE – all health care providers begin to name uncaring, disengaged, hostile behaviour for what it is – INEXCUSABLE – and sanction it.

    I am aware that my post reads as intolerant; and frankly it is. No one ought to be exposed to vitriol and hostility while at the same time recuperating from illness or injury. I am also aware that the system is filled to the brim with crabby conversation, something this post only add to. And for this, I am at a loss. How can we change systemic behaviour without first redrawing a non negotiable line in the sand representing the patient’s best interests, as opposed to the providers?

    • Suzanne

      I would love to know if anyone has any ideas about how to deal better with this?

  • Rita Batchley RN

    My Imaginary Illness, sounds like a book relevant for anyone who has had the frustration of feeling anxiety as a patient because mysterious symptoms won’t allow for a cut and dry diagnosis. Medical practice is just that a practice, we learn through trial and error within scientific framework to find the answers to problems effecting the body, mind and spirit. Many of us forget the spiritual aspect of kindness that begs the highly trained to meet the average person who has little or no medical knowlege with dignity and grace. Setting aside ego is a difficult task especially since it is the spacesuit that allows our souls to have a human experience. This collection of case studies is a great way to remind all of us to treat others how we would want to be treated ourselves.

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