In the Kingdom of the Sick

A landmark book about the growth in chronic illnesses and how science, technology, and culture are impacting the lives of people who are sick.

Thirty years ago, Susan Sontag famously wrote, “Everyone who is born holds dual citizenship in the kingdom of the well and the kingdom of the sick ... Sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” More than 133 million Americans now live with chronic illness, accounting for nearly three quarters of all health care dollars, and untold pain, disability, and heartbreak. What The Noonday Demon did for people suffering from depression, Laurie Edwards does for those who are chronically ill.

Euphoria over antibiotics, vaccines, and other major advances in the prevention and treatment of acute diseases after World War II soon gave way to an alarming rise in mysterious illnesses that defied diagnosis through clinical tests or had no known cure. People with these illnesses were greeted with distrust. For example, those with irritable bowel syndrome and female patients with chronic fatigue syndrome were told their symptoms were due to anxiety; and millions of people with chronic pain faced skepticism from physicians and the public alike. Patients with diseases as varied as HIV, cancer, or type-2 diabetes have been stigmatized, accused of causing their preventable illnesses through their lifestyle choices.

Through research and patient narrative, health writer Laurie Edwards explores patient rights and activism, medical advocacy, funding, politics, social media, and social justice associated with living with chronic diseases, common and rare. We are at a crossroads where we must balance the opportunities technology offers with the limits of science, as well as confront our throwback beliefs that people who are sick have weaker character than people who are well. In the Kingdom of the Sick probes where our attitudes about illness came from, where they stand today, and what the future of chronic illness looks like.

Laurie Edwards has an M.F.A. from Emerson College and teaches health and science writing at Northeastern University. She also has had several chronic illnesses since childhood and has become a vocal proponent for chronic illness issues. Her blog, www.achronicdose.com, receives several thousand monthly visitors and is linked and endorsed on more than 180 medical blogs. Edwards is a freelance writer and author of Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties, named one of 2008’s Best Consumer Health Books by Library Journal. She lives outside Boston, Massachusetts.