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

door Laurie Edwards

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"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"--Provided by publisher.… (meer)
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Toon 4 van 4
Well balanced look at how chronic illness impacts society. And how societal thinking affects those with chronic illness. ( )
  TheBibliophage | Mar 20, 2018 |
Let me first say, that it’s complicated for me to talk about this book, particularly in any sort of unbiased way, since I’m in it. Quite a bit, actually: Over the course of the last four years, Laurie’s been interviewing me, and asking me a bunch of thoughtful, challenging, questions - both specific and sweeping in scope - and then listening to me blabber on and on in response. She somehow managed to cobble a lot of my bits of nonsense together with the insights of other patients and bloggers and respected health care advocates, and combined them with years of dedicated research into the social, environmental, and cultural implications of chronic illness and come up with a sophisticated, well-rounded, and solid take on what it means to live with chronic illness in America.

I’m going to talk about this book on two different levels - as someone whose personal story was told in its pages, and as just a reader, focusing on the compelling themes and discussions that Laurie manages to include in her chapters.

On a personal level, I have to say how strange it was for me to see my story in print. To have my experience of illness not just represented truthfully and succinctly, but respectfully. If you are a patient, like me, with often invisible/misunderstood chronic illnesses, you learn pretty fast that your word is not to be taken as gospel truth, that your story is to be heard with skepticism, that your experience of what it’s like to live in your body doesn’t translate to how people think it should be, and is therefore invalid. But - as a chronically ill adult herself - Laurie has dealt with these attitudes on her own, and knows how important it is to make sure that she listened to and honored our experiences - I can only speak for my own interview process, but there was never a time when I felt as if what I was saying wasn’t being heard, and that really comes through in the final text.

Which, for me, wound up being quite startling when I actually read the book: there’s my story. All typed up and neat between the covers of an actual book - with my real name attached even! Even knowing my own experiences, they were hard to read: in some cases I was harsh on myself, or my family, and in others, the reality of my story is that it is often stark, as chronic illness often is - at least in this context. But the thing that Laurie manages to do so well here is incorporate all of the random pieces of my story and intertwine them with the stories of so many others, and place them in historical, social, medical contexts that make them so much more than just my stories: she makes them matter, in a way I hadn’t considered before. The book is both my story and not my story - The author is honoring & using our anecdotes and non/mis-diagnoses and perspectives to discuss a more universal story, to show the patterns that surround the lived experiences of individuals & groups with chronic illnesses.

This is one of the things that I found most fascinating about the book (and most relevant to my own experience of living with a chronic illness): that there are certain things that are universal to people living with chronic illnesses and disabilities - “We want science to give us clues when we’re surrounded by darkness, but we do not want to be reduced to impersonal statistics.” for example - but it’s still such an individual process. And that Laurie is able to blend and balance that so well is a credit to her skill as a writer.

Laurie is able to see the big patterns - to identify and illustrate broad themes over long periods of time - but to make them feel real and relevant by using the true stories of actual, living patients. By focusing on how the concepts of illness and patients have evolved over time, and using specific examples from those she’s interviewed, she manages to prove that illness doesn’t exist in a vacuum, but that the “stereotypes, assumptions, and challenges” that accompany our perceptions of illness as a whole, disability & chronic illness in particular are doing real harm (or, could be harnessed to give true benefit) to real people in real time.
...

The book is definitely, as the subtitle proclaims, a “Social History of illness in America” - peppered through with patient interviews and perspectives are the broad trends and social constructs and how they inform our experience of illness - both as patients and as observers/outsiders.

She looks at the Disability Rights movement in the larger context of the times - as emerging from the basic principles of the Civil Rights movement, and the Women’s Rights movement - and how it sometimes has come into conflict with both of those - If you’ve spent anytime on the Internet, then you know that not everyone’s feminism is intersectional, not to mention that if women’s right’s activists were arguing for equality, and certain illnesses were keeping women from being able to claim that equality, well, there would obviously be conflict. Also true is that chronic illness, in terms of the disability movement as a whole, is not always welcomed and appreciated by the decision makers: and that the needs of people with chronic illnesses both intersect and diverge from the ‘mainstream’ disability rights movement (if there even is such a thing any more). As Laurie puts it “Invisibility affords many opportunities for alienation.”

She also provides one of the clearest perspectives about chronic pain I've ever read. And doesn't shy from mentioning the judgements that often come attached to having something so debilitating that people - including doctors -can’t see or often measure reliably (and therefore don’t trust) -

“Chronic pain, especially severe chronic pain, is so encompassing and omnipresent it makes concentrating on anything else other than it nearly impossible. Chronic pain can make it excruciating to engage in physical activities, keep up with a regular work schedule, or even leave the house. Over time, chronic pain erodes so many aspects of the patient’s identity that it sometimes seems all that is left is the minute-by-minute experience of simply surviving the pain itself. It makes the threads of everyday life blurry and out-of-reach, yet pain becomes the narrow, sharp lens through which everything else that matters is filtered. This is the reality behind the statistics, the jobs left behind, the co-pays for painkillers that invite as many problems as the fleeting relief with which they tempt. .. It’s an untenable situation: patients are considered lazy or indulgent if they remain housebound, but should they manage some activity or productivity, then their pain can’t be as severe and exhausting as they claim. Here again we see the contradiction so common in the social history of disease: the absence of outward physical manifestations of illness somehow negates the actual experience of having it.”

In the Kingdom of the Sick is comprehensive: it’s super compelling to anybody who’s interested in how disabilities and illnesses have been and are now perceived in our culture, and how that might change moving forward, and is incredibly relevant in a world where nearly everyone is impacted in some way by chronic illness (if you don’t have one, I guarantee you know someone who does).

Highly, highly recommended, and hats off to the wonderful Laurie Edwards, who I’m so glad I get to call my friend. (edited from my original, much longer & quote-filled blog post)
( )
1 stem NTE | Sep 20, 2013 |
The author does a very good job guiding the reader through the social history of illness. The author references many books, studies, and experts, up to forty per chapter so the content is pretty factual and well researched.

In comparing this book to her previous book, I enjoyed the earlier book as it was written differently. The first book is a first-person account of dealing with chronic illness and I found that approach more appealing to me. This book is better on the topic of chronic illness and how we have dealt with it over the last several centuries.

If you want a first-hand account of what it is like to live with chronic disease, try the earlier book. If you want a historical perspective on how society deals with the chronically ill, read this book. The book is well organized and well documented with an enormous list of references in the back for those who are either skeptical or want more detail.

Towards the end of the book Edwards discusses how health insurance, drug companies, and hospitals all fit into the picture and the government policies that are formed by all of those entities. ( )
1 stem billsearth | Apr 26, 2013 |
Can I get an ounce of respect with that?

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.

In a forthcoming book, a doctor/client of mine explains that our polluted environment causes epigenetic damage – actual changes to the controllers of our genes, that can lead to chronic diseases - multiples of them in the same body. There have been nearly 90 thousand chemical compounds devised and released since WWII. Not only have the vast majority of them never been tested for their health effects, but none of them have been tested in combination with any of the other 90 thousand compounds. They get mixed, baked, boiled, burnt and glued into the clothing, furniture, building materials, food, air and water we live with. The result has been a huge increase in chronic illness, just when we seemed to be entering a golden age of conquering major diseases.

Edwards barely mentions environmental causes on page 35 and doesn’t come back to it again until chapter 9, because her doctors and doctors in general won’t even consider them. But if you look at chronic diseases as a whole, you see a couple of commonalities underlying most or all of them: mitochondrial damage, and epigenetic changes. This is why if you have one chronic illness, you are very likely to develop another. Doesn’t that explain a lot?

Another example is autism, which has been expanding geometrically for a generation. So have diabetes, CFS, MCS, IBS, Crohn’s and a multitude of other chronic conditions. But rather than look at the whole picture of our polluted society, parents of autistic children blame measles shots - because they’re an easy, available target. They’re looking at the tree instead of seeing the forest – because the light is better there.

Edwards examines the autism controversy fairly, but this book is not really about that. It’s really about illness forcing women to get together, to support each other, to learn more about their conditions than their doctors, to talk back to their doctors, to push for more respect. That’s what Edwards considers groundbreaking. As such it is heartfelt and inspiring. It doesn’t help solve the problem of diagnosis and cure. It only addresses the problem, as Edwards puts it, of customer care.

Using the examples of AIDS and breast cancer, she shows how organization, publicity and pressure can elevate a disease’s perception, profile and status – and dollars, research and attention. And that’s all missing in chronic diseases today. But mostly, it’s about respect, and she consistently come back to that point.

Other chapters focus on pain, autism or alternative medicines, but they all eventually come around to the same point – lack of respect between doctor and patient. It’s the common denominator of everything in Kingdom of the Sick.

There are plenty of generalizations you might not agree with, plus inaccuracies like: “20 million Americans, one in every five – have asthma,” which only accounts for 100M people. Chapter 9 veers off into health insurance, but eventually comes back to the doctor/patient relationship.

Nonetheless, anything that sheds light on this dark abscess is desirable. Sharing the bigger picture helps millions to know the state of the art. Edwards is big in social media, and this book will spread that way. It’s a good thing. ( )
  DavidWineberg | Mar 12, 2013 |
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"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"--Provided by publisher.

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