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Law and society professor’s autoethnography/memoir named book of the year

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Chloe Atkins received a nod from the American Journal of Nursing when it named My Imaginary Illness to its list of most valuable texts of 2011. Since the book’s release in 2010, it has earned 3 health sciences book awards.

Medicine has made great advances, but what happens when a patient’s condition doesn’t fit with known symptoms, diseases and treatments? University of Calgary law and society professor Dr. Chloe Atkins found out. In My Imaginary Illness: A Journey into Uncertainty and Prejudice in Medical Diagnosis and using as a backdrop her personal experience she investigates how the medical establishment applies psychological stereotypes to illnesses it is yet unable explain.

At age 20, Atkins awoke from a routine surgery and found her body paralyzed, her eyes blind and her lungs barely able to breathe. Numerous tests indicated no medical reason for her new symptoms and doctors sent her into psychological therapy. Over the following fifteen years, she remained undiagnosed. At times she was wheel-chair bound and at others, she journeyed in and out of intensive care units, was left bedridden living in nursing homes, endured respiratory failure, was resuscitated five times and put on life support. Despite her debilitating condition, doctors refused to diagnose her with a physical disease or to treat her.

“I was a medical mystery and I had become untouchable,” she says. “So many doctors had tested me and determined there was nothing wrong that I was labeled with conversion disorder—a psychological condition where patients are viewed as jeopardizing their own health either consciously or unconsciously.”

Despite numerous doctors from Ontario to the eastern United States advocating that she was psychologically unstable, she refused to believe in the label that had been placed on her. After years, Atkins found a General Practitioner who agreed to put her on medication and a form of chemotherapy—not that she had cancer. Her symptoms improved, but even that wasn’t considered proof of a real illness. Doctors told Atkins she would die.

“It is important for patients to understand that medical diagnoses are theoretical models. They are not absolute. Medicine’s belief in evidence-based practice does not mean that it is devoid of prejudicial views and behaviours that can greatly impair its seeming objectivity,” she writes. “In fact, evidence-based medicine can reinforce clinical and cultural stereotypes because it does not take into account those symptoms and cases that fall outside statistical norms.”

Atkins says her condition was unidentifiable only because her symptoms didn’t fit current models for known diseases. Fifteen years later, her strong will to live and find a treatment persevered. With a move to Alberta, she found a doctor who believes she has a rare presentation of symptoms for a rare condition called myasthenia gravis—an illness associated with muscular dystrophy, and about which little is known.

“My story demonstrates the multiplicity of factors that lead to a psychogenic diagnosis and it explores the malleability and imprecision of such diagnoses and the dangers that all patients face in a medical world in which psychological profiling of disease is increasingly commonplace. It can, at minimum, lead to an individual feeling responsible for his or her illness, or maximally, lead to a patient being vilified and “psychiatrized” for not getting well.”

My Imaginary Illness: A Journey into Uncertainty and Prejudice in Medical Diagnosis is published by Cornell University Press and was released in November 2010.