IN THE KINGDOM OF THE SICK

The story of “where attitudes about chronic illness came from, and where they stand today.”

Edwards, chronically ill with lung and autoimmune diseases (Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties, 2008), quotes Susan Sontag in describing herself: As a wife, mother and teacher, she behaves as if she were a citizen in Sontag’s “kingdom of the well,” but in truth, she belongs to the “kingdom of the sick,” with daily needs of drugs and lung aids to enable her to breathe freely. And she is not alone. There are 133 million Americans living with chronic disease, which accounts for 75 percent of health care spending. The author offers a well-researched if somewhat overwritten study of how the current state developed, what it says about society and the medical profession, and how science and technology are forces for change. Her review of the past is an exercise in negativity. Societies faced diseases with fear, often isolating, condemning or stigmatizing the sick. With World War II medical advances came optimism: Antibiotics would eliminate infectious disease, for example—until they didn’t. Nevertheless, doctors were respected, and Edwards writes that this was especially true in relation to female patients with chronic pain conditions. Even today, many doctors say that conditions like fibromyalgia, chronic fatigue or irritable bowel syndrome are “all in the head.” That is changing with the growth of disease advocacy groups, new research and the wide use of social media. Many patient groups, writes the author, take inspiration from the civil rights movement or AIDS activists. But the problem for chronic-disease advocates is that the term encompasses so many problems that it’s hard to strike a common agenda. Instead, Edwards argues for better-informed and -empowered patients and greater collaboration among scientists, researchers policymakers and patients.

A timely call to attention to a global health problem, but with no real solutions in sight.