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

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Overview

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 ...

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

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Overview

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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Editorial Reviews

From the Publisher
“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

Publishers Weekly
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.)
Library Journal
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
Kirkus Reviews
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.
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Product Details

  • ISBN-13: 9781620406281
  • Publisher: Bloomsbury USA
  • Publication date: 7/8/2014
  • Pages: 256
  • Sales rank: 626,967
  • Product dimensions: 5.50 (w) x 8.30 (h) x 0.80 (d)

Meet 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.

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Customer Reviews

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Sort by: Showing all of 2 Customer Reviews
  • Posted April 24, 2013

    "In the Kingdom of the Sick" is a fascinating read for

    "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.

    1 out of 1 people found this review helpful.

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  • Anonymous

    Posted May 20, 2013

    In the Kingdom of the Sick is an exceptionally well researched l

    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.

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