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. 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. People with irritable bowel syndrome and female patients with chronic fatigue syndrome have been told their symptoms were due to anxiety; and millions of people with chronic pain have faced skepticism from physicians and the public alike. What The Noonday Demon did for people suffering from depression, Laurie Edwards does for those who are chronically ill, championing their cause and giving voice to their lament.
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About the Author
Laurie Edwards teaches science writing at Northeastern University. She has several chronic illnesses and is a vocal proponent for chronic illness issues. Her blog www.achronicdose.com receives several thousand monthly visitors and is endorsed on 180 medical blogs. Edwards is the 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.
Table of Contents
Chapter 1 From Plato to Polio Chronic Disease in Historical Context 9
Chapter 2 An Awakening Medicine and Illness in Post-World War Two America 29
Chapter 3 Disability Rights, Civil Rights, and Chronic Illness 49
Chapter 4 The Women's Health Movement and Patient Empowerment 69
Chapter 5 Culture, Consumerism, and Character Chronic Illness and Patient Advocacy in the 1980s and 1990s 87
Chapter 6 A Slight Hysterical Tendency Revisiting "The Girl Who Cried Pain" 109
Chapter 7 Into the Fray Patients in the Digital Age 129
Chapter 8 Participatory Medicine and Transparency 159
Chapter 9 What Future, at What Cost? 183
Most Helpful Customer Reviews
In the Kingdom of the Sick is an exceptionally well researched look at the history and culture of illness in America. It is also a very personal book which intersects intellectual ponderings with historical facts and patient stories. As a patient, it was fascinating to read about the beliefs and advocacy that have shaped my current medical experience. Edwards tackles sensitive topics such as the controversies around chronic Lyme, fibromyalgia and chronic fatigue syndrome, and she explores the successful advocacy efforts for women's health, AIDS and breast cancer. The book continually dances along the boundary between how the kingdom of the well relates to the kingdom of the sick. Specifically, the persistent belief that illness is connected to personal failings in lifestyle and/or character. In the end, Edwards calls readers to see that illness is a natural process of living. Illness is a complex web that catches threads from society, environment, genetics and personal responsibility. Seeing those that are sick with a narrow view does not allow for the compassion needed to address the policy and treatment needs of those who must step into, even for a short while, the kingdom of the sick. I highly recommend this book to patients, care givers, health care professionals and health care policy makers. It is a game changer.
"In the Kingdom of the Sick" is a fascinating read for anyone with a personal and/or professional connection to chronic illness. It begins by giving you a strong foundation in the history of illness, research, and patient advocacy movements. It then challenges you to consider the impact of advances in patient rights, science, communication, and technology on the incidence, treatment, and perception of chronic illness. One look at the book's bibliography will demonstrate that Laurie is a talented researcher- a breadth of resources and perspectives are offered in the book. As with her first book "Life Disrupted", I found it effective that she threads real patient stories/quotes throughout the book to demonstrate key historical movements and to highlight the personal experience of illness. As a public health professional and health educator, I know too well how often we speak of people in the aggregate (e.g., "More than 133 million people suffer from chronic illness"). It can be easy to become removed from the individual stories of patients. That is why Laurie's dual role as historian and patient is so unique and so important. I highly recommend this book for patients, clinicians, researchers, and public health professionals.
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