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

by Chloë G.K. Atkins

At age twenty-one, Chloe 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 immersion in the world of psychotherapy, and her excruciating physical and emotional journey back to wellness.

Genres: Nonfiction, Medicine, Memoir, Health, Disability, Science

248 pages, Hardcover

First published November 1, 2010

Reviews

[Jenny Brown · Rating 4 out of 5]

A very well-written narrative of one woman's struggles with a medical system that treats a severe but difficult to diagnose condition as "psychosomatic" to the point of withholding care. In this case, the disease, which seems to be a form of Myasthenia Gravis results in severe paralysis and crises that land the author in the hospital for months.

Unfortunately, her experience is repeated daily by tens of thousands of us who have rare conditions unfamiliar to our doctors--especially women. If a few standard tests don't immediately produce a diagnoses we are routinely dismissed as neurotics with notations being written into our charts that keep subsequent doctors from listening to us and helping us find out what is wrong with us.

The worst part of this book was an afterward written by a patronizing psychiatrist who over-intellectualized away the serious problems Professor Atkins book reveals. His distancing over-elaborate but basically empty paragraphs made it clear that doctors are not going to change the way they do things just because they cause immense amounts of suffering for people whose maladies are not the ones they have memorized during their training.

If you do suffer from a painful, life-limiting chronic condition that doctors dismiss, don't give up. There are a few good doctors out there and with time you may get to see one. There is also a lot more medical information available on the web nowadays--Professor Atkins' ordeal occurred 20 years ago at a time when it could take all day to find two journal articles in a medical library. With more information, those of us with rare conditions have been able to find the information that our doctors are too busy--or uninterested--to find, and this often leads to finding appropriate and effective treatments.

But it's infuriating to me that the M.D.s we pay to help us are so often NOT the people who find us the help we need. As Atkins points out Doctors' training makes them uncomfortable with ambiguity. If they can't immediately pinpoint the problem, they want you gone because you make them uncomfortable.

Until we train doctors more like engineers and put the emphasis on problem solving and accountability for the treatment they dole out, medicine won't change. As it stands now, doctors are rewarded for getting rid of difficult patients and concentrating on those with simple conditions that they can immediately address.

Highly recommended for anyone in good health who trusts their doctor. Many of us used to--until we came down with something serious and experienced the kind of treatment Atkins so painfully recounts.

[Signe · Rating 5 out of 5]

I finished reading the book in one fell swoop. Thank you so much for writing it. I can't believe it is 2010 and the patient story has not otherwise been succinctly told. I have had a very similar experience in many ways, except that my mother was around, which just gave them an excuse to say I didn't want to walk to "get revenge on her for being a neglectful parent". You know, either way they make it so you can't win. You are stuffed into their narrow paradigm created by preconceived notions of your life experience and there you most likely stay. All your truths are overlooked, and your own experience negated so that the higher god of the medical establishment can be sufficiently pandered to.

We need to get every physician in Canada a copy of your book. I see how they fall into their traps and into hospital and ministry politics, but it is wrong and things need to change

[Deodand · Rating 4 out of 5]

Not sure why the rating on this book is so low. It's a true account of Atkins's struggles with diagnosis and treatment of her health issues, due to an early diagnosis of somatizing disorder - otherwise known as "it's all in your head". I found it hard to put down. This is like the non-fiction version of a "House" episode, only the doctors and nurses have already made a psychiatric diagnosis of the patient's organic disease.

This is an eye-opening book. I'm not sure how a medical professional could justify some of the behaviour that is recorded here, as it reaches disgustingly poor levels. Atkins was left to struggle for her life unaided in a hospital bed so many times it's embarrassing. Her experiences are important to everyone, as one day, nearly all of us will wind up in the hospital, incapacitated in some way or another. And if it's not you, it's someone you care about.

[Caran-marie · Rating 4 out of 5]

Thought provoking and scary at the same time. What happens when the doctors are convinced that you're not sick even when you're dying?

[Michelle · Rating 5 out of 5]

A real life horror story that was difficult to read but worth the effort.

My full review: http://bit.ly/YOKnvm

[TyLean · Rating 5 out of 5]

Once I started Chloe's section of the book, I couldn't put it down and finished it in one sitting. I wish I could give it 10 stars.... this is a must read for every human. It's an extreme example because of the life-threatening nature of her particular condition, but this bullshit happens more than you normal, healthy people could ever wrap your heads around. I have seen it as both a person working in healthcare and as a person who has a rare genetic condition that seemingly defies the laws of nature.

The behaviors of these sort of megalomaniac healthcare professionals betray them for the hair-brained lunatics they truly are. Of all possible scenarios to explain a situation, they default to the most manipulative nonsensical notions.... for example, Chloe didn't fall and break her neck (as shown clearly on an extension X-ray) and tough it out for a weekend because she's a badass hardened by a lifetime of pain and medical humiliation being psychologically bludgeoned..... no, no, she's making it all up, and she's a contortionist seeking attention. That's - apparently - more plausible to these so-called "educated people of medical science." My particular brand of genetic dysfunction means that events like this broken neck Chloe experienced happen for me caused by things as simple as sleeping with one extra pillow. You would not believe how I have been treated for NOT going to an emergency room in these circumstances... unless you already knew how I had been treated FOR going to an emergency room in these circumstances. You are damned if you do and damned if you don't.

At the end of the day, medical professionals have a religious sort of idealism and cult like belief in what they do. Medical science is a misnomer.

Allow me a small rant from my years working in an emergency room.... They love to lord it over everyone how many years they spent in education, but they treat every patient like a drug seeker, hypochondriac or Munchhausen's case, because they see a small handful of these people on a regular basis. They're so incapable of dissecting the information in front of them that they cannot see that this accounts for an absolutely minuscule portion of the patient population, and - furthermore - that these people (despite being considered socially unacceptable) are sick as well and deserving of their time and attention. I have also seen people denied medical care and discharged with smashed knee caps and having heart attacks, because they were drunk only to be life-flighted or called back in and rushed to an OR a few hours later when there was a shift change and someone bothered to look at the charts. If you knew how often they fuck up.... and how often they do it sadistically to be punitive to patients.... you wouldn't be having a circle wank over them right now and calling them heroes.

[Abigail Westbrook · Rating 5 out of 5]

Such a fascinating book - well written and hard to put down. The story gives a glimpse into the struggles that many chronically ill people face in getting an accurate diagnosis and needed treatment. I was fascinated by the many observations on the connection between mind and body - just how are they inter-related, and how can doctors be appropriately aware of both areas of health/illness? I did feel like the author may have been an unreliable narrator at points, but what can any of us do but tell our own stories in the manner that we experienced them? Unreliability aside, she has truly survived a great deal of trauma, much of which could/should have been avoided.

The clinical commentary at the end of the book was also very interesting, though I felt like that doctor was not adequately horrified at the ways the author had been treated by caregivers. Somehow the medical field MUST learn to do better. And as a whole, our society needs to learn how to support those who are struggling with chronic health issues, whether of the mind, body, or both.

[Leanne · Rating 5 out of 5]

Loved this book. Insightful, painful, honest, courageous, well-written. Thank you for your story.

[Anaceci · Rating 1 out of 5]

hated it. really disliked it.

[Stella Fouts · Rating 3 out of 5]

Not the best of reads - interesting nevertheless.

[Sara Ann · Rating 4 out of 5]

Every current or aspiring healthcare professional should read this IMO. I’m so glad the author was brave enough to share her story, one that unfortunately is all-too-common in our “healthcare” system