Is It All In Your Head?: True Stories of Imaginary Illness by Suzanne O’Sullivan, M.D.

It is not necessarily the greatest suffering that receives the greatest consideration and sympathy. Illness is not scored in that way. Deadly disease obviously scores higher than others. After that there is an unofficial ranking system for illness in which psychiatric disorders are the out-and-out losers. Psychiatric disorders manifesting as physical disease are at the very bottom of that pile. They’re the charlatans of illness. 

In Is It All In Your Head? True Stories of Imaginary Illness, M.D. Suzanne O’Sullivan, whose specialties are neurology and clinical neuropathy, offers a casebook of patients who presented with powerful physical symptoms and yet in time various illness and diseases were systematically ruled out. This left these ill, debilitated people, technically speaking, or at least in the eyes of the doctors who treated them, with nothing wrong, no diagnoses.

Up to one-third of people seen in an average general neurology clinic have neurological symptoms that cannot be explained; in these people an emotional cause is often suspected. It is very difficult for a patient to be given the news that their physical illness may have a psychological cause. It is a difficult diagnosis to understand, let alone accept. And doctors can be reluctant to offer it up, partly for fear of angering their patients but also for fear of what they might have missed. Patients often find themselves trapped in a zone between worlds of medicine and psychiatry.

The book’s introduction builds a pathway to the case histories here, and I particularly loved the way the author pointed out that “modern society likes the idea that we can think ourselves better,” and while accepting that a “positive mental attitude” is invaluable, Suzanne O’Sullivan argues that “society has not fully woken up to the frequency with which people do the opposite–unconsciously think themselves ill.” The lead-in intro paves the way with commonly acknowledged physical symptoms caused by emotions or stress, and from this common point of acceptance, the author takes into her patient casebook.

 is-it-all-in-your-head

As for the case histories, there’s a range: Pauline, a 27-year-old woman with an extensive medical history, whose been ill since age 15. A general feeling of being “unwell” morphed into burning pain when passing urine. Then followed years of, how can I say this, being bounced around the medical community, being given vague diagnoses and even an unnecessary appendectomy. Finally after losing the use of her legs, Pauline ended up in a wheelchair. If you think this sounds bad, well just keep reading Pauline’s case; it’s truly appalling. I’m not going to blame the doctors here because if a person keeps complaining about pain & various other symptoms, the doctors are going to keep looking for causes (that’s their job,) and that, at the very least, led to even more complications for Pauline who ended up being kicked out of the hospital only to suffer seizures right before her release.

Wheelchair-bound Matthew is convinced that he has Multiple Sclerosis ( he can’t feel anything in his lower body, yet “despite the lifelessness of his legs the reflexes reacted as they should”) ; Shahina‘s problems began when someone accidentally steps on her hand. Yvonne becomes blind after a few drops of glass cleaning solution accidentally land in her eyes.  The treatment given her by the junior doctors and medical students is appalling, (“there’ll be no Oscars for that performance.”) Alice, I found perhaps the most interesting of the case histories, since her story started with breast cancer and from that moment on, the experience tapped into Alice’s subconscious mind. Camilla spent years with unacknowledged grief which manifested itself in other ways.

The most disturbing, controversial chapter concerns Rachel, who suffers from Chronic Fatigue symptom/ME and ends up in a locked psychiatric unit. Rachel seems to be the other end of the spectrum–someone who does indeed have something physically/clinically wrong with her even though Dr O’Sullivan argues that “psychological factors and behavioral issues, if they are not the entire cause, at the very least contribute in a significant way to prolonging the disability that occurs in chronic fatigue syndrome. Do I know that for sure? No, nobody does: but I am influenced by the lack of evidence for an organic disease. ME/CFS sufferers do not usually have any objective physical findings to explain their fatigue. They have been likened to those who had multiple sclerosis before that disease was properly understood.”  Fatigue (CFS) is a problem as it tends to gather up the label of malingering and that is so unfair. And on the subject of Rachel, just because a patient makes a big demonstration of being unable to do something doesn’t necessarily mean a thing. We all bring our characters to our illnesses and our diseases. Some of us suck it up and some of us don’t.

The chapters go back and forth from the case history under examination to other cases and also the history of various medical practices. This can be distracting, even though I can understand why the author took this approach. Some of the stories were tied up too neatly with a bow, but I suppose that is how the doctor’s casebook ends when the patient walks through (or wheels out of) the door for the last time and lands on someone else’s patient list. Ultimately this was an interesting read–even though I didn’t agree with the author about every issue.

In a matter of semantics, I had a bit of a problem with the book’s byline: True stories of Imaginary Illness as it implies, at least to this reader, that the patients in these pages ‘imagined’ their illnesses as in fabricated. But the whole point of the book is that these patients suffered very real physical symptoms as a result of psychological distress. They weren’t imagining anything.

Review copy

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13 Comments

Filed under Non Fiction, O'Sullivan Suzanne

13 responses to “Is It All In Your Head?: True Stories of Imaginary Illness by Suzanne O’Sullivan, M.D.

  1. Fascinating stuff. I saw that she won the Wellcome Prize in today’s Guardian. Great cover too.

  2. It does sound fascinating and sad. I’m sure there are some very tragic cases in the book. Just imagine, you’re in pain all the time and nobody finds out why.

  3. I recall hearing this author discussing the book on a radio arts programme last year, possibly in connection with the Wellcome Prize. Such a complex and subtle subject to investigate…

  4. Sounds very interesting.
    I read the neurosurgery memoir Do No Harm a couple of years ago, very worthwhile (although terrifying as well).

    • Yes neurology must be a depressing field to be in. Oddly enough I know someone who could have very well made it into this doctor’s casebook. He dropped out of university w/o telling anyone only to be discovered at the end of the year by the wife who was supporting him. Right when she found out, he collapsed and ended up in a wheelchair. Unknown causes ….

  5. This sounds equally fascinating and horrifying. I think that doctors perhaps try to pre-empt the mental effects of a physical illness more than they used to although that isn’t the same as illnesses that they consider to have no physical cause. I was shocked when I slipped a disc in my back a few years back that part of the treatment was about overcoming the fear of pain which could hinder recovery – in fact I was quite indignant as it was horrendously painful but in hindsight, it made sense and perhaps helped me recover completely and relatively swifty.

  6. I have a friend who suffers from something nobody can diagnose. She’s always tired, she suffers from various allergies that strike any time. She lives as a recluse. It is awful for her but also for her husband and her son.

    I’m not sure I’d have the courage to read this.

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