In the Kingdom of the Sick: A Social History of Chronic Illness in America

by Laurie Edwards

Overview

Thirty years ago, Susan Sontag 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." Now more than 133 million Americans live with chronic illness, accounting for nearly three-quarters of all health care dollars, and untold pain and disability.

There has been an alarming rise in illnesses that defy diagnosis through clinical tests or have no known cure. Millions of people, especially women, with illnesses such as irritable bowel syndrome, chronic pain, and chronic fatigue syndrome face skepticism from physicians and the public alike. And people with diseases as varied as cardiovascular disease, HIV, certain cancers, and type 2 diabetes have been accused of causing their preventable illnesses through their lifestyle choices.

We must balance our faith in medical technology with awareness of the limits of science, and confront our throwback beliefs that people who are sick have weaker character than those who are well. Through research and patient narratives, health writer Laurie Edwards explores patient rights, the role of social media in medical advocacy, the origins of our attitudes about chronic illness, and much more. What The Noonday Demon did for people suffering from depression, In the Kingdom of the Sick does for those who are chronically ill.

Product Details

ISBN-13:	9780802778277
Publisher:	Bloomsbury Publishing
Publication date:	04/09/2013
Sold by:	Barnes & Noble
Format:	eBook
Pages:	304
Sales rank:	894,287
File size:	2 MB

About the Author

Laurie Edwards has an M.F.A. and teaches health and science writing at Northeastern University. She has had several chronic illnesses since childhood. Her blog www.achronicdose.com receives several thousand monthly visitors and is linked to more than 180 medical blogs. Edwards is author of Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties, named one of 2008s Best Consumer Health Books by Library Journal. She lives outside Boston, Massachusetts.
Laurie Edwards holds a Master of Fine Arts in Creative Writing from Emerson College. She teaches a writing course designed for students of the health professional at Northeastern University. Her essays and articles have been published in the Boston Globe Magazine, ChronicBabe.com, and Body1.com, and on her blog, achronicdose.com. She currently is developing a creative writing program for chronically ill children at Children's Hospital Boston, for which she was recently awarded a Teachers as Writers Fellowship from the prestigious Calderwood Writing Initiative at the Boston Athenaeum. This is her first book.

Table of Contents

Introduction 1

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

Acknowledgments 211

Notes 213

Bibliography 225

Index 237

Editorial Reviews

According to the Centers for Disease Control and Prevention, about 133 million American adults suffer from one or more chronic illnesses, ranging from AIDS to fibromyalgia to breast cancer. Edwards (writing, Northeastern Univ.; Life Disrupted) knows her topic all too well: she has, among other chronic conditions, a rare lung disease resembling cystic fibrosis. This work, the title of which owes a debt, as the author mentions, to Susan Sontag's Illness as Metaphor, is carefully researched, well written, and accessible to most readers. It is, as she states in the introduction, a "big-picture book" focusing on the "universal aspects of the circumstances" of chronic illnesses. Although much of the history covered in her first chapters treads familiar ground, it sets the stage for her focus on health care for chronic illnesses after the 1940s. Interviews with chronically ill individuals are included, and coping mechanisms are discussed, but this is not a how-to book. It is broader in scope than Melanie Thernstrom's The Pain Chronicles, which also includes the author's personal experiences and allusions to Illness as Metaphor. References come from a variety of journal articles and websites. VERDICT This is appropriate for academic and public libraries as well as history of medicine collections. Chapters on disability rights, the women's health movement, patient advocacy, and consumer empowerment will be of particular interest to both the interested layperson and the professional.—Martha Stone, Treadwell Lib., Boston

Library Journal

With chronic ailments the new norm, people are fighting for their right to be ill, argues this wan exploration of evolving attitudes toward sickness. Edwards (Life Disrupted) surveys the battle of patients with intractable diseases against disparagement and misunderstanding, including AIDS patients deemed morally unworthy, diabetics blamed for unhealthy lifestyles, and breast cancer survivors who are lionized but also expected to remain cheerful and feisty. But she focuses on people who suffer from poorly defined maladies—chronic fatigue syndrome, chronic Lyme disease, fibromyalgia, and other kinds of persistent pain—that are often ascribed to stress, malingering, or feminine hysteria instead of biological causes. Edwards, who has celiac disease and lung disorders, mostly sides with patients against skeptics; she regales readers with her own and others’ stories of dismissive doctors and unsympathetic jibes, and situates their struggle for credibility within the patients’ rights movement and the Internet’s burgeoning ethos of do-it-yourself medical research and advocacy. She is more interested in activism against prejudice, sexism, and an arrogant medical establishment than in the lived experience of illness, and frequently glosses over scientific issues with anecdotes instead of rigorously analyzing them. One often feels that Edwards misses the heart of the medical problems she addresses. Agent: Matthew Carnicelli, Carnicelli Literary Management. (Apr.)

Publishers Weekly

An informative primer on chronic illness.” —The Wall Street Journal

“An indispensable book for anyone with or concerned about chronic disease, and everyone interested in the health professions.” —Booklist (starred review)

“A timely call to attention to a global health problem.” —Kirkus Reviews

“Wise, generous and a terrific storyteller.” —Publishers Weekly

From the Publisher

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.

Kirkus Reviews