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Reviewed by:
  • My Imaginary Illness: A Journey into Uncertainty and Prejudice in Medical Diagnosis
  • Frances R. Batzer (bio)
My Imaginary Illness: A Journey into Uncertainty and Prejudice in Medical Diagnosis. by Chloë G. K. Atkins. Ithaca, NY: Cornell University Press, 2010.

Chloë G. K. Atkins's story of her illness and journey toward a medical diagnosis is compelling in demonstrating the interaction of the medical world with a person who presents a strange symptom complex that does not fit neatly into the usual diagnostic framework. Atkins becomes, as she says, a "person . . . branded with a particular diagnosis that like a scarlet letter, follows the patient and stamps her medical fate" (14).

Atkins's story is the second volume of How Patients Think, part of the Culture and Politics of Healthcare Work series from Cornell University Press, created to engender an essential dialogue between clinicians and patients. Each volume contains the narrative of a patient and his or her encounter with the healthcare system. A health-care expert provides a foreword to the narrative. The format concludes with commentary by a clinician (physician, nurse, or other professional) on the resonances of the patient's encounter, particularly as it reflects on the health-care system. In her foreword, Bonnie Blair O'Conner, a physician educator, [End Page 186] social scientist, and medical ethnologist, sets the stage for the reader—medical-care provider, patient caregiver, or friend—to begin to understand what it means to provide "patient-centered care" (xv) and to comprehend the necessity for it. In his clinical commentary, professor of psychiatry Brian David Hodges reflects on aspects of Atkins's story as they relate to diagnosis and classification, which he calls the "constructions of illness," and the "mind-body conundrum" that Atkins so clearly understands, the "empathy and dignity" (157) more frequently missing in Atkins's care than present, and lessons to be gained from understanding her narrative.

This criticism of the medical world cannot be disregarded or ignored. Yet the medical system, as it is being propagated especially by payment companies and Diagnosis Related Groups, does not allow for patients who have problems outside the box, outside regulated available diagnostic codes. While the recent push for delivery of only evidence-based medicine has in general improved medical care, it does not meet many of the needs of patients, especially in cases like Atkins, for whom the diagnostic evidence does not meet the strict criteria of a named disease. Nor does evidence-based medicine ensure objectivity of the physician. Robert A. Aronowitz, in his illuminating book on the experience of illness and the culture of objectively defined disease, Making Sense of Illness, stresses the critical importance of determining the "pathobiological mechanism in defining and legitimating diseases" (1998, 26). But if a treatment plan works, and is beneficial despite known side effects, it is worth continuing. Whether or not a health plan agrees to provide payments for such treatments under an amorphous diagnosis is another discussion. The kind of independent thinking that doctors feel has always been part of medical care is not rewarded or applauded. Even evidence-based practice does not always fit a code.

"The diagnostic system of medicine itself is problematic," Hodges argues (151). Since much ongoing medical care involves payments and guidelines established by administrators, insurance companies, or government officials, an understanding of the obstacles faced by Atkins is particularly important; her illness pushed her into ICUs with unexplained ferocity. As Hodges states, "Illness, disease, and suffering are messy, intense, and profound aspects of human existence that bring forth a full range of emotional complexity and turmoil" (154). It is up to health-care professionals to bring their greatest humanism and diagnostic skills to cases where symptoms do not fit the usual diagnostic niches. In Susan Sontag's influential appraisal of medical ethics, she writes, "Theories that diseases are caused by mental states and can be cured by will power are always an index of how much is not understood about the physical terrain of a disease" (1977, 55). It is our [End Page 187] system of care that needs to be rethought within the context of patients such as Atkins. While we consider the medical issues...

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