INVISIBLE ILLNESS

A medical anthropologist at Georgetown University examines the fraught relationship between those who suffer from disabling chronic conditions and the American medical establishment.

Invisible illnesses like endometriosis, Lyme disease, and long Covid typically present as a constellation of vague, sometimes intermittent symptoms that include pain, chronic fatigue, and brain fog. As different as these conditions are from each other, they are also similar in how misunderstood they are in the medical community. Drawing on cultural history and interviews with scientists, policymakers, and activists (many of whom suffer from chronic conditions), Mendenhall argues for transforming the health care system by recognizing the experiences of complex patients as “legitimate sources of knowledge.” A large part of the problem comes from the fact that complex patients and doctors “speak different languages” and do not understand each other. Patients may feel unseen by clinicians who lean into authoritative discourse and a “one size fits all” approach to diagnosis, while clinicians may not fully comprehend the patient’s (often very individualized) experiences. In discussing endometriosis, for example, the author shows how female complaints get labeled—and ultimately dismissed—as functional neurological disorder (FND), an updated version of the Hippocratic notion of hysteria or “wandering uterus” syndrome. She argues that symptoms for this and other chronic ailments must be considered in context of what she terms a patient’s “bodymind,” since body and mind, along with the patient’s environment, are “deeply integrated.” Only then can the chronically ill begin to more successfully navigate their conditions and remake their lives in more substantive ways. Elegantly written and rigorously researched, Mendenhall’s book offers a much-need challenge to a monolithic health care system to respond in more humane and holistic ways to the suffering of those facing complicated, long-term health issues.

An incisive study that illuminates the myriad complexities of chronic illness.