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In the Kingdom of the Sick: A Social History of Chronic Illness in America Hardcover – April 9, 2013

4.3 out of 5 stars 22 customer reviews

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Editorial Reviews

From Booklist

*Starred Review* The scariest revelation for anyone with a chronic illness is the realization that it isn’t going to go away. Ever. Edwards, a health and science writer, recalls endless doctor and hospital visits when she was a child. As an adult with lung and autoimmune diseases, her visits continue. But she is not alone. According to Edwards, almost 130 million Americans suffer with some kind of chronic illness. Her book is a hybrid, a combination of research, literature, and personal stories from patients. Edwards addresses such important issues as the long-standing gender biases in the treatment and diagnosis of pain, how technology will change the doctor-patient relationship and empower patients, and the implications of what it means to be sick. She discusses what the ancients thought about the nature of disease, patient rights and medical ethics from the 1950s to the ’70s, disability rights and the chronically ill, the women’s health movement, the early HIV–AIDS movement, chronic fatigue syndrome, prevention and the stigma of chronic disease, and chronic disease and health-care reform. An indispensable book for anyone with or concerned about chronic disease, and everyone interested in the health professions. --June Sawyers

Review

“Laurie Ediwards, a science writer who suffers from chronic illness, seeks to bridge a communication gap - between society and the chronically ill. In the Kingdom of the Sick offers an informative primer on chronic illness.” ―Amy Finnerty, Wall Street Journal

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

“Carefully researched, well written, and accessible.” ―Library Journal

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

“This is a fascinating overview of the myths, stigmas, events, and cultural attitudes that have shaped people's perception of illness and disease throughout history. By sharing the personal accounts of individiuals who have suffered from ignorance, misdiagnosis and skepticism, In the Kingdom of the Sick shines a bold light on chronic illness.” ―Phyllis Greenberger, MSW, President and CEO of the Society for Women's Health Research

“Laurie Edwards draws on the historical and scientific literatures, the reflections of patients and patient leaders and her own life as a person living with multiple chronic conditions to tell a compelling story. In the Kingdom of the Sick is surprising, revealing, and beautifully written.” ―Jessie Gruman, President of the Center for Advancing Health

“A probing, clear-thinking examination of the new medical crisis on our hands: chronic illness. Edwards brilliantly illustrates why our cultural assumptions and medical systems must change if we are to remove the parentheses that chronic illness places around so many American lives.” ―Donna Jackson Nakazawa, author of The Autoimmune Epidemic and The Last Best Cure

“Very original, enlightening and informed analysis of chronic illnesses, experienced by a growing number of people. Edwards goes beyond explaining illness as metaphor and acknowledges the biological realities of having illnesses most poeple don't understand - such as chronic pain and fatigue - which are too often subject to stigma.” ―Paula Kamen, author of All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache

“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.” ―Publishers Weekly

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Product Details

  • Hardcover: 256 pages
  • Publisher: Walker Books; 1 edition (April 9, 2013)
  • Language: English
  • ISBN-10: 0802718019
  • ISBN-13: 978-0802718013
  • Product Dimensions: 6.5 x 1 x 9.4 inches
  • Shipping Weight: 1.2 pounds (View shipping rates and policies)
  • Average Customer Review: 4.3 out of 5 stars  See all reviews (22 customer reviews)
  • Amazon Best Sellers Rank: #1,050,200 in Books (See Top 100 in Books)

Customer Reviews

Top Customer Reviews

Format: Hardcover
In the Kingdom of the Sick by Laurie Edwards is an eye opening look at society's view of chronically ill persons living in the u.s. It gives a cultural context to the struggles people with "invisible" illnesses have had to face in this country. I, particular, liked the point Edwards makes that the lack of visible "defects" makes it hard for society at large to emphasize or understand the gravity of illness such as autoimmune conditions.

In the Kingdom of the Sick by Laurie Edwards is an eye opening look at society's view of chronically ill persons living in the u.s. It gives a cultural context to the struggles people with "invisible" illnesses have had to face in this country. I, particular, liked the point Edwards makes that the lack of visible "defects" makes it hard for society at large to emphasize or understand the gravity of illness such as autoimmune conditions.

As a person suffering from a rare condition, the person stories illustrating how society's laws and attitudes have shifted over the decades was the most effective element in the book. When you have a name and a story to go with an issue, it makes it easier to identify with and understand.

I think Edwards does a fantastic job at pointing out how the blame game has been used to blame people with chronic illnesses for their problems, as well. Often it's believed that conditions, especially those which require special dietary consideration, are easily controlled or preventable by the afflicted. Edwards dispels this myth, giving all those with diabetes, AIDS, etc. legitimacy again in society.

Make no mistake thought, In The Kingdom of the Sick is a book for everyone. As she so eloquently illustrates and points out in the title of her book, sooner or later everyone will be a part of the kingdom of the sick. This book will just help one navigate it better, with an attitude of can do and not can't so chronic illness will not define you.
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Format: Hardcover
The author did a lot of research for this book, as evidenced by the ten pages of (single-spaced, small print!) bibliography as well as the informationally dense text. The book has a slightly academic feel to it, especially in the early chapters. But it was so fascinating at the same time that I was never tempted to abandon it. I did have to read it in chunks because it gave me too much to think about and want to respond to. My copy has a thick, pink fringe to it from dozens of Post-It flags I littered the pages with every time I came across something that made me say, "Huh!" or "Wow!" or "Grrrr".

As in her first book, Life Disrupted!, Laurie interspersed In the Kingdom of the Sick with stories from real people living with chronic illness or treating it, which helps keep the book more accessible to the average reader. I also really appreciate the way she shares bits of her own experiences as a person who has lived In The Kingdom of the Sick for her entire life.

My full review can be read here: [...]
Full Disclosure: I received an advance copy of the book as an interviewee. I received no compensation, either for sharing my story/opinions with Laurie or for doing this book review. My opinions are my own, although I think anyone with any sense at all would agree with me that this is an excellent book. :-)
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Format: Hardcover
You have to take Kingdom of the Sick for what it is - a cry of frustration. If you're looking for answers, you won't find them. If you're looking for breakthroughs, you won't find them. If you're looking for reinforcement that you are not alone, there's tons of it.

Laurie Edwards is not a doctor or a scientist, so there should be no expectations along the lines of solutions. She does a fine job of chronicling the miasma of chronic disease through history. But she also misses the greater picture: 1) Chronic disease has been increasing exponentially since the 1950s in western society, and 2) Those with one chronic disease are extremely likely to develop others (co-morbidity). But the book is too heavily focused on the doctor/patient relationship to notice.

The frustration comes from doctors being unable and then unwilling to understand chronic disease, like Edwards'. She says they withhold information and minimize the symptoms. They get their patients to do the same, creating a downward spiral of miscommunication. Sooner or later they tell the patient it's all in her head - it's stress, anxiety, fear - instability in her brain, not her body. The result is the patient gets nowhere, but becomes self doubting - and stressed.

At the root of the problem is the medical framework itself. Doctors are rigorously trained to treat an organ. Everything they know is focused on tracking down the culprit organ and treating it. But what if there are multiple organs involved? What if a matrix of organs are the victims and not the problems? At that point, docs are at a loss. And that's precisely where chronic disease patients find themselves.
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Format: Hardcover
About 30 years ago, in her book "Illness as Metaphor," the noted writer Susan Sontag said: "Everyone who is born holds dual citizenship, in the kingdom of the well and in 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."

Author Laurie Edwards, who has been chronically ill most of her life, is intimately acquainted with being a citizen of "that other place." She uses Sontag's famous quote as a jumping off point for her new book, "In the Kingdom of the Sick: A social history of chronic illness in America."

Although the author's personal experiences (with celiac disease and a genetic lung disorder) are interwoven throughout, the book mostly takes a "big picture" look at how chronic illness is viewed in our society. More than 130 million Americans now live with such conditions as HIV, various cancers, diabetes, autoimmune disorders, chronic fatigue, asthma, and Lyme disease. Most of the healthcare dollars spent in the US go for the treatment of chronic illness. Yet many of the chronically ill are viewed with mistrust by doctors and the public at large. Either their largely invisible symptoms are disbelieved entirely (such as with CFS or Lyme) or they are blamed as being the cause of their own illness due to perceived lifestyle choices (HIV and type-2 diabetes).

"In the Kingdom of the Sick" examines the rise of the disability rights movement, AIDS activism, the women's health movement (with its emphasis on breast cancer awareness), gender bias in the treatment of pain, and patient activism in the digital age. The book reports on academic research as well as the stories of individual patients from across the spectrum of chronic illness.
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