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

by Laurie Edwards, Holly Fielding (Narrator)

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.

Genres: Nonfiction, Health, History, Disability, Science, Medicine, Medical

9 pages, Audible Audio

First published April 9, 2013

About the author

Laurie Edwards is the author of Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties (Walker, 2008). She is a health journalist whose personal essays and articles have appeared in the Boston Globe Magazine, Glamour, and many other outlets, including her award-winning literary health blog, www.achronicdose.com. She received her undergraduate degree from Georgetown University and her MFA from Emerson College, and she teaches writing at Northeastern University in Boston, MA.

Reviews

[Carrie Kellenberger · Rating 4 out of 5]

I stumbled across the last copy of In the Kingdom of the Sick: A Social History of Chronic Illness in America while I was browsing through our local book store. Interestingly enough, that day was one of the first days I was able to move around with some ease. I have Ankylosing Spondylitis, a type of spinal juvenile arthritis that affects every part in my body, and I had spent the last 78 days in an ongoing flare that left me bedridden and unable to walk or move around much.

I was having a good day that day. I managed 30 minutes of mobility before returning home to rest. I'm 40 years old, and I look young and healthy. You could never guess by looking at me that my body has rebelled against me. When I'm flaring I live in the body of an 80-year-old woman with incredible levels of fatigue and pain.

"My mystery illness...affects every single part of my life. I can't forget it or ignore it."

While visiting with my family this summer, I finally had to admit to myself that I am not going to get better, and that the only thing I can really truly rely on for the rest of my life is that it will be filled with pain and inflammation. It will never go away.

There is no cure for Ankylosing Spondylitis.

I bought the book and devoured it over the course of three days. Reading Edward's descriptions of what it was like growing up as a sick child with autoimmune was like reading about my own childhood. Reading about how she has to ration out her energy, how she can't work a full time regular job, and how her disease permeates into every aspect of her life was like reading about my own life. It was a relief to read that other people are going through this and are no closer along than I am in uncovering the mysteries of autoimmune disease. It was a relief to hear that she too had suffered from misdiagnoses, visits to doctors and specialists who told her it was all in her head, and that she also felt like people didn't really believe that she was sick.

"Many of us with chronic illnesses are not obviously disabled; to be recognized as disabled, we have to remind people frequently of our needs and limitations. The unpredictability of symptoms and their severity that sets chronic illness apart from certain physical disabilities can also make for 'unreliable activists', individuals who might be able to run workshops or attend policy meetings one day and be bedridden the very next."

Edwards also takes a close look at the history of chronic illness and how society views and treats individuals who suffer from chronic illness. Present-day health systems in countries around the world are not set up to help people with chronic illness, nor do they offer much in the way of support.

Millions of people around the world are suffering from autoimmune disease, and those numbers are only going to go up. Nearly 50% of the population is affected by chronic illness today, and it's estimated that 164 million Americans will be affected by chronic illness by 2025. Chronic illness is real. We're not sick because we've done this to ourselves through lifestyle choices, we aren't lazy or weak-willed, and we deserve support and help.

[Mary Miller · Rating 2 out of 5]

Here's where I have a problem, oh dear: I wanted to like this book, in fact I wanted a book I could curl up with that discussed chronic pain in a real way that would not only educate, give support and hopefully measure out some aspect of compassion. This one didn't do it.

It could have been a wonderful book based on her insight as a person with a life long disability, grappling with both her condition, with doctors and so forth, instead this is written like a junior thesis, over reaching, under focused, and terribly out of date in many places, and over data quotes, no one outside of a school setting will appreciate or want this kind of "verification", not even for journal review anymore, because numbers can be skewed. She should have stayed with the etymology of her idea (a sphere of life based on chronic illness, rather than an historical timeline, based on data), misunderstanding of cultures she does not have experience.

Here's one of the problems I face with this book: she writes from privilege, which is where SHE comes from, how SHE deals with chronic pain and how she understands disability. Her profiles are people that are most likely to NOT be in the disability circles, because they do not usually have an upper middle-class standing, nor do they tend to have higher degrees in education to land professional jobs. In most disability circles, (those of us who identify as being 'disabled', let me be specific here), her stance of how she understands disabilities, how one identifies as disabled, and how one lives, is based on a person who's life experience is centered around "being disabled upperclass, or as a wealthy person" which constitutes less than 1% of the disabled population.
Most folks with chronic illness and disability, live in a world far very different than the world she expresses.

We have issues with care attendants, getting them, keeping them, the guilt of hiring them. We fight weekly, if not monthly with social services for our food stamps (even with employment), with sheltered agency jobs that are supposed to 'train us' doing manual jobs that are obsolete and pay less than $3/hr, but we should be grateful for this! (Current lawsuits with United Cerebral Palsy and ARC, to name just a few of these agencies shows how sadly common this is).

What we DON'T do, is sit around making divisions (as she points out from another sociologist) about disabled ill versus disabled well, whatever that is! Since anyone with a disability by definition has a condition whether temporary or permanent that limits their access/ability, the level of such said disability, only outsiders sit and judge us based on such criteria! As pointed out in the proceeding paragraph, we've got a LOT on our plates without spending time being divisive about "how less disabled some one person is over another" in ranking, and only tends to come up when employers hire "less visibly disabled" over a more qualified person who is obviously disabled in their appearance or in terms of accessibility (wheelchair or not). As someone active in the disability sector since 1983, I feel fair game to say this as an advocate. We get mad when folks hire less skilled workers who "pass" as not being disabled, over more experience workers who don't.


This was another problem with this book that drove me to fits:
In AIDS circles (and no, I do not have it, AND spent years working with folks who do/did) do NOT rate themselves (certainly not the folks I met or spent time with in the SF Bay area) as having AIDS hierarchy. This has predominantly played out in the CHRISTIAN arena of how outsiders view people with AIDS. Gays are not pejorative, nor are black and hispanics "better on the grading scale" than gays, and hemophiliacs don't consider themselves in higher ranking because they as she put it, are innocent. frankly, they've got more things to deal with in their lives than play this kind of emotional game. I was further astonished that anyone who wants to write with 'such authority', would miss the fact that the largest growing population since 2000 in the HIV/AIDS world are our senior population!


To tighten this book to be a true wonderful discussion would have been:
doctors who misdiagnose, who pat the hands of the patient, fail to give them medication they truly need based on either their own prejudice, ignorance, or insurance pay back for treatment! This in and of itself would have been a well written book! Her explaining the "culture of the sick" which would have been interesting rather than a rambling book that covers almost 5 or more topics, going no where.


I didn't really get beyond the disability stance nor did I go beyond the AIDS 'didactic' comments, I felt from reading such misunderstanding of two cultures, I couldn't finish this book. I perhaps didn't give credit to her historical timeline of illness discussion, but after seeing such glaring errors in just a few chapters, I couldn't find myself wanting the luxury of getting upset any further than I had to.

One thing about those of us who do live in this "Kingdom", we need books that understand us from a compassionate end, one that could give us insight and delivery of how to live in such said kingdom, yes, even a road map. This would have been not only a book I wanted to read, but it could have been a great one.

[Stephanie · Rating 5 out of 5]

An at-times confronting, at-times anger-producing book. Not at the book itself, but at the system that exists around those suffering from chronic illness.

Caveat: I suffer from a chronic illness, one which is not presently curable, but is treatable. Despite treatment, it still affects my life a great deal. I am not able to work a traditional full-time job. I have to measure out my energy carefully every day. Most days, I am in some kind of pain.

Caveat #2: I live in Australia, where there is a good public health care system. I am also privileged enough to be married to a man who supports me, and I have access to private health insurance. I have also been very privileged to have worked only with doctors and specialists who have supported me.

Edwards is an author who also suffers from a chronic illness, and I think writing from this perspective gives her great compassion to what a great deal of many other people live through on a day to day basis. In this book she looks at many types of illnesses - diabetes, chronic fatigue syndrome and fibromyalgia, just to name a few - and presents cases in detail showing how individuals can be affected by their disease, and by the society they live in and how it views their disease.

This is a must read for anyone who suffers from chronic illness, or knows or cares for someone with such. It is vital to understand some of how chronic illness affects individuals - we are not lazy, we have not done this to ourselves, and we deserve a system that recognises us as such. Most of us are trying to carve out useful lives in spite of illness, and we need a society that supports us in order to do so.

The overwhelming number of people now suffering from chronic illness, and who will suffer from chronic illness is staggering. Read this and be informed and aware, because one day it could be you or someone you love. There is a fair amount of data provided, but it's conveyed in a very easy tone, and broken up with more conversational individual experiences, making this a manageable read, even for someone who might be overwhelmed by some of the statistics and data.

[Dov Zeller · Rating 3 out of 5]

"In the Kingdom of the Sick" is a well-researched, interesting look at chronic illness. The author, Laurie Edwards, is sick herself, though high-functioning much of the time. She empathizes with the plight of the chronically ill (it is her plight, too), as they struggle with the horrors of the western medicine machine, and at the same time tries to seek out what is working in our western allopathic medical traditions. I think ultimately she is making an argument for the best of all possible worlds to come together -- allopathic, naturopathic and other "alternative" types of treatment, self-advocacy. And she is warning against the dangers of doctors being assholes and not working with patients in more of a partnership/team model; and patients stubbornly going after miracle cures for illness they don't even know for sure they have but saw on the internet on a site whose validity they didn't establish.

While I agree with her to a point, I also disagree with her to a point. She mentions but doesn't go into depth about the problem of highly inaccurate biomarkers as worshipped and used by allopathic doctors. She seems very iffy on the question of "alternative" medicine and doesn't in any way address or honor the science involved in Chinese medicine, massage, chiropractic therapies and naturopathy. Nor does she address the scientific evidence that shows the benefits of meditation practices. She refers to "evidence-based" practices as if that only applies to evidence valued by western medical culture, and also as if these western practices are clear-cut and unquestionable, which I think is pretty misleading.

Moreover, she talks about gender in a way which I cannot tolerate so well. As if the world is made up of women and men and all women have one kind of body and all men have a different kind of body. The reality is, there is a lot of fluctuation within each of these categories and a whole host of people that don't fall into them at all. As a person who is trans and sick and who has seen a lot of people have horrific experiences with allopathic doctors and great and helpful experiences and treatments with non-allopathic practitioners, well, maybe I am just not the best audience for this book. But I do appreciate that Edwards is doing a lot of work in here to advocate for sick people and raise awareness around this strange and murky category: chronic illness...

Edwards begins the book by describing the age-old problem of blaming sick people, their poverty or lifestyle or religious or moral choices and behavior, for their illnesses -- something that she can trace back as far as the ancient Greeks, and which is still at play today.

Before the identification of infectious agents, she says, it was a "logical" choice for medical practitioners to call into question or interrogate patients about their lifestyle, because there was no microbiological information to explain the cause of their illnesses. (I am so curious what was happening medically in other parts of the world.) She is less patient with doctors who still blame sick people for their illnesses today, which she makes clear still happens a lot. And of course, not only do doctors blame people for their illness, they often refuse to acknowledge chronic illness at all, especially in female-bodied patients.

The advent of microbiology changed the game in many ways, she says, but also raised expectations of medicine. People began to believe this western form of scientific medicine and the remedies and preventative treatments it provided, would be be much more powerful and much less risky than it actually is.

One thing allopathic medicine did do, as fewer people were dying of acute illness, was to leave room and time for chronic illness to become much more prevalent. Of course, people were chronically ill long before these changes she is talking about, and I don't think she spoke of this. Just off the top of my head I can think of several famous people who had long-term chronic illnesses. Darwin comes to mind. I am pretty sure Coleridge. Virginia Woolf.

In any case, according to the thesis of this book, after the success of allopathic medicine to treat and prevent things like Polio and Syphilis and measles and mumps, we suddenly have lots of people with chronic illness, and no way to make sense of it. The idea that our great science could control disease made it socially and emotionally difficult for people in the “postmodern” era to accept and live with chronic illness.

After WWII a commission on chronic illness was established, but it was very difficult to create definitions for what qualified as chronic illness. A lot of changes were happening in terms of the relationship between ethics and medical practices and beliefs and practices around end-of-life care. A lot was changing, patients had more rights. But they still had to deal with a medical system that trained their doctors to think of illness in fairly simplistic, black-and-white terms. And chronic illness, being a catch-all phrase for anything from chronic athsma to type 1 and type 2 diabetes, to MS and CFS/ME, was hard to really work with and rally around in a meaningful way.

In the third chapter Edwards discusses the evolution of civil rights movement as it relates to people with disabilities, and she asks the questions: what are the similarities and differences between people with visible disabilities and people with invisible chronic, often disabling illnesses. “‘There’s a gray area between the disabled and the chronically ill. It is a different conceptual category,’ says Dr. Joe Wrigth, a resident in a Boston teaching hospital who has researched the early HIV/AIDS movement and patient advocacy extensively, and who regularly treats patients with chronic disease.”…

I know from my own experience, and hearing the experiences of sick friends, that doctors are very resistant to the idea of chronic illness, especially chronic infection. as far as allopathic doctors are concerned, if they can't see biomarkers that prove the validity of your pain and other symptoms, you belong in the psych ward or else you're an idiot, or a lazy, hysterical, malingering creep, just pretending to be sick for the fun of it (because it's fun to pretend you have a chronic illness and be treated like shit by doctors and co-workers and religious communities and friends?)

Basically, allopathic doctors are looking for an illness they can treat easily or at least systematically (with a system already in place), or they become hostile to a patient. And their hostility is much more frequently turned toward female-bodied people, and I imagine, toward anyone who isn't white, cis male and middle-class-to-wealthy. That's a lot of people who are being treated very poorly by doctors.

As a person with a chronic illness I have mixed feelings about this book. I appreciate the ways Edwards talks about the invisibility of pain and the troubles in our medical system around gender and power-structures. She names a lot of troubled areas: lack of medical research on female-bodied people; dismissal of pain experienced of female-bodied people by doctors and spouses...; dismissal of illnesses that can't be proven through poor-to-so-so biomarker tests.

But she clumped all non-allopathic treatments into one, well, clump, called CAM (complementary and alternative medicines), and doesn't talk about any of them in a thorough or meaningful way.

And her approach to gender and her language around gender and sex was clunky at best.

And she brings up over and over again this idea that certain illness are illnesses of the middle class, without ever trying to unsettle them. People of all classes and nationalities get lyme and cfs/me!!!!!!

And she says over and over again that CFS somehow started in the 80s? Or that it was first discovered in the 80s. That's not true!!!! Even wikipedia will tell you that. There were outbreaks starting in the 30s. Outbreaks in the 50s. Really whenever there is an outbreak of a viral infection a certain percentage of people are likely to get CFS/ME or something very similar. And there are descriptions of illness much earlier on (1800s, 1900s) that that sound quite like CFS/ME.

[Jenny · Rating 2 out of 5]

Oh god, the problems with this book.

I picked this up after I heard Laurie Edwards give an interview on Fresh Air on NPR one afternoon, and I thought, "Gosh, this woman is so articulate. I bet her writing is fantastic!" Well, it is and it isn't.

Problem #1: The goal of this book is inscrutable to me. It seems like she intended to touch on a wide breadth of thoughts without really developing or analyzing any of them very much in depth. So was the goal to briefly discuss each and provide an overview and have as wide a scope on the discussion as possible? Because the trade-off here is that this book failed to move me or allow me to empathize with patients living with chronic disease (I do not, currently, but with my genetics, I'm sure I will). And I really wanted to empathize. There are many other reviews touching on this, so I won't bother reiterating, but given the opportunity to discuss the social implications of chronic disease with people living in the "kingdom of the well", I think that opportunity went wasted.

Problem #2: Ok, so maybe an overview and a detached, clinical discussion actually was her goal. That doesn't do anything to mitigate the various instances where she just presents information disingenuously. To wit,
- On page 108, she says "...the history of early AIDS is synonymous with political action and concrete results that the CFS community, despite the extensive work of disease advocacy groups and patients, cannot claim." First, anybody who read And the Band Played on (I just did) knows that the history of early AIDS involved the government, the media, the public, even the gay community itself COMPLETELY dropping the ball, both in terms of funding research and providing a framework of education and disseminating how to prevent the spread of the disease. Second, comparing the response to AIDS to the response given to Chronic Fatigue Syndrome is faulty when AIDS was a rapidly spreading disease killing people. If CFS were killing people at a rate that would categorize it as an epidemic, I bet it'd see a similar response.
- On page 155, she discusses how the social media is all about immediacy, "where links go out in real time and off-the-cuff remarks have a permanent Internet footprint...", yet one of the things about discussions on the Internet is its asynchronicity. I can take a step away from the computer, think about what I want to say, or even edit it if I can get to it in time, reply a significant amount of time later, and still participate in a cohesive conversation. It's how shitty Twitter crap like #twitterpurge was able to keep going.
- On page 193, she discusses how "[a]s the gap between rich and poor continues to widen, so too does the gap in in health and positive health outcomes", but does little to link how this correlation breaks down at the global level, seeing as how the US spends significantly more per citizen in healthcare but bottoms out among wealthy nations in terms of quality.
- On page 194, she states, "Individuals with less education tend to have lower incomes." On the surface that looks true, but since she's discussing socioeconomic issues (and again, not analyzed at a very deep level), she is remiss in not making it a more accurate statement of "Individuals with less education tend to have lower incomes, and are less likely to have education BECAUSE of those lower incomes."

Problem #3: Say the disingenuity can be explained away by misinterpretation on my part or even just difference in opinion of philosophy. That still does not excuse the fact that Laurie Edwards needs a fucking editor. Here, I took lots of notes:
p. 18: "...more complex definitions include literal of metaphorical marks that infer an individual is 'criminal, villainous, or otherwise deserving of social ostracism, infamy, shame, and condemnation."
The word you're looking for is 'imply.'
p. 26: "Since polio was a disease that primarily affected children, treating it was a cause particularly vaunted by the American public."
Really? We boasted and bragged about it? Maybe you mean 'championed'?
p. 31: "...many of the concepts most of us take for granted had a fairly egregious track record."
I'm willing to chalk my idea of how 'egregious' should be used as overly pedantic, but you can't put 'fairly' and 'egregious' next to each other. Because 'fairly fucking awful' makes no sense.
p. 39: "...giving live hepatitis viruses to retarded patients in state institutions..."
Listen lady. You are not allowed to write a book about the stigmatization of a group of marginalized people and then turn around and use the word 'retarded'. How the hell did that get past your editor?
p. 80: "...at an eight-woman conference...[t]he paternalism of modern medicine was renounced in favor of finding practitioners willing to share their expertise..."
Yeah, I'm sure those eight women said, "Hey! I was having an awesome time being paternalistic, but I think it's time I gave that shit up." Maybe you mean 'denounce' instead?
p. 85: "It is an undeniable fact of life for millions of patients with diffuse conditions..."
Does that mean that those patients have conditions widely scattered in their own bodies, or that the patients who have conditions are spread out? I don't understand. Ohhhh, unless you actually meant 'diverse'.
p. 86: On the AIDS and breast cancer movements - "These disease movements demonstrate that the tenuous relationship between science and stereotypes and respect and resistance continued to evolve.
Nitpicky, sure, but unless these verbs are either both present or both perfect tense, this sentence sucks.
p. 93: on AIDS first appearing in homosexual men - "The fact that it first manifested itself within a much-aligned population made things much worse."
Ah yes, those gay men. So gay, and so good at queueing.
p. 101: "For one, there is obviously no finish line with chronic illness, literally or figuratively."
If it's so obvious, did the fact that a literal finish line doesn't exist really need to be pointed out? Or the figurative finish line? "literally or figuratively" is just redundant and adds nothing.
p. 123: "...the mythology of women in pain that has subsisted for so long exists in part because..."
This basically says "This thing that has existed for so long exists because..." Just sloppy.
p. 147: "...the advocacy journey literally begins when they walk home from the physician's office..."
We need to have a talk about this word, 'literally'. Can you figuratively begin? I'm thinking no, and that you meant that the journey is literal.
p. 149: "...parents and advocates who believe autism is reversible, a message her son's neurologist did not share."
So, what, her son's neurologist knew that autism was reversible and just didn't share that with her? Maybe that could have been cleaned up into 'a belief' instead of 'a message', or 'agree with' instead of 'share'?
p. 156: "Her website getbet [actual line break]
terhealth.com"
Yeah. Splitting a URL over two lines is a GREAT idea.
p. 200-201: "entrenched...entrenched...entrenched..."
Listen, I know a great site. It's called www.thesaurus.com. It will give you words/phrases like 'deep-seated' and 'ingrained'.

Problem #4: I'm not an editor by trade so maybe all that stuff I listed is just my own personal pedantry. Even if we excuse Problems 1-3, what is with the HUGE swaths of quoted text by other, better-edited writers? I shit you not, whole paragraphs in this book are 100% composed of things other people said. Maybe instead of all that quoting, there could have been more analysis and in-depth discussion.

There were no new or innovative ideas in this book. The only reason it gets two stars instead of one is because it was at least sort of interesting. But what a disappointment overall.

[NTE · Rating 5 out of 5]

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)

[Daniel Cooke · Rating 2 out of 5]

As someone who suffers from fibromyalgia I was hoping to get more out of this book than I did. Overall, this reads like a college textbook for a sociology course rather than a book for a lay reader. I found the writing disjointed and academic with little information that wasn't obvious to any modern reader who has the misfortune to be a frequent user of our flawed medical system. Though there were interesting insights into how women continue to be mistreated in modern medicine and how advocacy movements have improved the medical system in the past it wasn't clear to me what point the author was trying to make with the whole effort. Perhaps there was no point?

If you are a chronically ill person trying to understand where you fit in society, you'll find a few tidbits here and there but I found myself skimming many sections and looking forward to the end of the book.

[Linda · Rating 3 out of 5]

I wanted to enjoy this more than I did--unless you have issues with what was addressed I don't think this will be of interest to the general public. The author tended to get somewhat ramble-y at points.

I will say that the points she made about people who have "invisible" disabilities was very important though, as my husband is one of those--just because people don't "look" disabled doesn't mean they are not. Some aren't obvious or some people work hard at appearing normal at all costs!

[McKenna · Rating 3 out of 5]

3.5/5

I have such mixed feelings about this book. I wanted this to be something that I really found interesting and like groundbreaking. For me, it was not that.

There were two very big problems with this book that I had and then some smaller ones.
First, please stop comparing other illnesses to the AIDS epidemic. I am absolutely certain that other illnesses also have people experience discrimination and have negative consequences from such. At the same time, there is no need to directly compare it to the literal AIDS epidemic. It can stand on its own. That is just not a correct comparison to make. I have so many things that I could say and express here, but I am going to leave it at there.
Second, I fully understand that this was published in 2013 but it still made me highly uncomfortable that anti-vaccination moms (aka moms that were anti-vaccination because they believed vaccinations caused autism) were interviewed and given a place to speak. That just made me highly uncomfortable for so so many reasons.

Other feelings on this book- I definitely think the discussion surrounding like what a chronic illness is and like the intersection of the disability movement + people with chronic illnesses specifically was interesting. There is definitely a question to be had there about like where people with chronic illness fit in but also because the idea of disability is morphing and changing over time with the disability rights movement. As someone who is considered both disabled and as a chronic illness haver, it was an interesting thought to have. It is also interesting though considering that my chronic illness which is not considered a disability as it does not impact my daily functions super significantly (except on flare up days) is still covered by workplace discrimination since it is an autoimmune condition [I could be wrong on this- the entire disability system in the United States is fucked up in many ways and confuses me greatly even though my mother is disabled].

I think this definitely has something to bring to the table, but I don't know if it was exactly what I was looking for in this moment. I was also hoping for more analysis of the actual statistics that were included rather than just kinda stating them. It just irritated me slightly because a lot of things just felt said and not explained and I didn't particularly like that.

Overall, I was hoping for something more. I still think this has something to offer. I don't think it was the right book for me though. I do appreciate the author's perspective and research in making this book work, however.

[gab · Rating 4 out of 5]

really enjoyed this one. hard to believe it was written in 2013 and so much rings true still today. it’s so important for us to understand how our lives have become biomedicalized, and the harm that can cause. I also learned a lot about HIV/AIDS activism, which I appreciated.

[David · Rating 2 out of 5]

Incorporates her own experience with a lung disease, celiac, and several others, plus interviews with people with chronic illnesses, interviews with medical people,and literature review to address many aspects of the history and sociology of chronic illness.

It's an important subject, and I can't say I really disagree with her about anything major, so I'm not sure exactly why I experienced it as such a slog to finish. Leading candidate hypotheses for now are:

1. I remember most of what she discusses -- ex. how stigma associated with AIDS changed as it became obvious that it was not limited to a few high-risk groups, how ACT-UP played a role in increasing research and treatment funding; plummeting donations to Susan G. Komen foundation after Planned Parenthood controversy, and many more. I could picture maybe a high school student who is interested in current events but unaware of recent history related to health and illness in the US being much more interested in reading this book.

2. Relatedly, she often violated my EPT (Elaboration Proportionality Theorem), which holds that (a) the degree to which you belabor a point must be proportional to a multiplicative function of (b) how counterintuitive it is, and (c) how little it has been disclosed and discussed.

So for instance if you are the first to bring up something amazing (the government fed developmentally delayed kids radioactive oatmeal to tests its effects, with no informed consent. Wait, what?), take all the space you need -- give a timeline, interview victims' families, quote the agency's denial of culpability, and so on.

but if you are going to tell me that society is prejudiced against fat people, or that direct-to-consumer advertising sometimes results in patients' pressuring MD's to prescribe expensive drugs they don't specifically need, you should hit it and move on. This author, for my taste anyway, included many too many passages along the lines of:

if you are sure you have chronic Lyme disease, it sucks to be doubted by your physician and by all your friends. So-and-so, who blogs about Lyme disease at "Lyme disease stigma is a pain.com", said "it hurts my feelings when people say to toughen up and get on with life, or 'we all get tired sometimes'". In her book "Stigma of chronic illness" author X says "all too often, patients are doubted by experts and friends and family alike. For instance......." and so on X 10.

[Libby · Rating 5 out of 5]

Those of us who hold citizenship in the dreary kingdom of chronic illness will recognize every word in this thoughtful appraisal of modern medicine and illness that is"treatable but not curable." Most of us have experienced the phenomena of "blaming the victim" or seen the look that means "It's all in your head, Little Lady." We have seen our symptoms frustrate, irritate and downright bore our employers, colleagues and acquaintances. We too, are frustrated, and Hoo Boy! are we bored. Most of us want nothing more than to feel well enough to work, play and live just like our healthier neighbors.

Laurie Edwards is herself chronically ill. She knows whereof she speaks. She has spent many years poised between normal and the ICU and has a lot of ideas garnered from diligent research into American medical practice and the patients who never really get well. I almost wept as she described the horrid Limbo of not having a diagnosis; wondering if it IS really all in my head, wondering if it is all my fault for eating too many Twinkies, et cetera.

For those of us who desperately desire to find someone who understands our issues, it is a breath of fresh air to read this book. It is compassionate without pathos. It offers some thought provoking suggestions for those disabled by pain, fatigue, lack of breath and lack of understanding. If you, or someone you love has a chronic disease process, you want to read this book.

[Rita Ciresi · Rating 4 out of 5]

“It’s hard to see your peers doing things with their lives that you want to be doing with yours, and to know that you’re just not physically capable of doing those things right now—or might never be.” Laurie Edwards is at her best when she is speaking from personal experience about her own battles with chronic illness, and when she is interviewing those who also suffer from it. This book offers a more general view of chronic illness as a public health concern, and although it loses focus at points, it can function as a good introduction to this important topic.

[Shruti morethanmylupus · Rating 3 out of 5]

3.5 stars

Before I can lay out my thoughts on In the Kingdom of the Sick: A Social History of Chronic Illness in America by Laurie Edwards, I must make a confession. I have a masters degree in public health. This means that I have studied this topic in a lot of detail. The interplay between the ill and society was a topic of strong personal interest to me long before I identified as one of the ill, and I have therefore done a lot of reading on the topic even outside of my classes. Obviously, this colors my view of a book like this, so please take what I say with the appropriate grain of salt.

I had mixed feelings about this book. This is a topic that I have a lot of interest in, and yet I found that it rambled on a lot. Contrarily, I would have liked more detail, because while she covered a lot of years and a lot of changes, the detail in each of those areas wasn't sufficient to satisfy me. (I will freely admit that it probably would have been discouragingly long had she actually elaborated that much.) However, I think that this is a good introduction book. If you find the topic of the relationship between society and chronic illness - no matter whether that is a general interest, an interest due to your own experiences of living with an illness in our society, or the experiences of a loved one - of interest to you, then this might be an interesting book. This is true if you are looking for a comprehensive historical timeline or a general introduction, or are interested in the shifts over the years. If you are interested in a specific interplay or illness, then this probably isn't what you're looking for. Edwards hits on an extensive list of issues and topics, which a reader could go look into in more detail if needed. There is a comprehensive bibliography in the back.

Edwards fights chronic illness herself, so I was expecting this book to hit me on a more personal level. The cases shes uses to demonstrate and detail the topics were compelling, but it didn't feel like her own experiences really came through. That being said, her description of what it's like to be suffering but unable to get a diagnosis certainly struck a familiar chord with my own experiences. I appreciated the cases, because public health is often a lot of dry statistics, with the personal experiences lost to the sands of numbers. It's validating to see that my own experiences with and views on how society views illness are supported by Edwards' extensive research (both the technical and the personal testimonies.) More specifically, I liked the way she interwove the stories with the history she was trying to present. She gave the stories context in the historical social timeline, which was interesting to me from an academic point of view, but less so from a patient point of view. In some ways, it's a validation. It says "See? This patient wasn't crazy! Society really did believe/act in ___ manner!" On the flip side, I felt as if the feelings in the story were marginalized in the process. I'm sure she didn't intend that, and most people will probably disagree with me, but it felt that way to me. I think it felt that way because the narrative line of the story got a little muddied. Of course, the topic is the social history of illness in the US, with the stories used as illustration, so I guess that's excusable.

Edwards also did a great job with overarching themes and the changes provoked in them as society, science, and public policies changed. This provides the reader with a chance to put some thought into, "Okay well what we have now isn't stellar , but how much worse was it in the [enter decade of choice here]?" or "Was it really better in that decade? Is it really better now?" and so on. I also thought that she had some thought-provoking moments in the discussion of how the realities of living with chronic illness could run contrary to the goals of major movements like Women's Suffrage simply because a patient was unable to claim the rights they were fighting to receive due to the limitations of illness. Most interesting, for me, was the discussion of the Disability Rights movement and how that didn't always line up with the needs of chronic illness sufferers. There is, to this day, a lot of debate over the definition of "disabled" and who should qualify for the definition and therefore the rights afforded to it. The discussion of chronic pain was also well done. She wasn't withholding any punches, and I liked how she included the contradictions involved in the judgement felt by people who suffer from chronic pain. Pain is, first of all, by its very nature un-measurable, because everyone's perception is different. This is compounded by the fact that if you stay in bed, then society likes to think you're lazy and you're in pain simply because you won't push yourself through it. Meanwhile, if you drag yourself out of bed, you not only aggravate your pain but are also judged to be exaggerating, because if you could drag yourself out of bed, then you couldn't possibly be in that much pain could you?

As a patient, I think there was certainly a lot of validation in reading this book. It's thought-provoking and it does give readers a lot to think about. I think people who have no personal relationship with chronic illness (their own or a loved one's) but an interest in the general topic could get a lot out of this book. There are a lot of places where I got pretty indignant about the realities of the society-chronically ill relationship over the years, and I think that speaks to the fact that it was well written enough to engage my emotions. I liked the emphasis on the fact that illness is a natural part of living. Granted, the idea of chronic illness, especially at a young age, is not part of our societal construct, but illness itself is part of human existence. We are born, we live, we are ill, we die. Environment and genetics certainly play roles in this, but they aren't the only things that are involved. A person healthy enough to take part in long distance bike races today could be hit by a car tomorrow and have chronic pain for the rest of her life. The line between the kingdom of the well and the kingdom of the sick is paper thin. I'm choosing to skip a discussion on the psychology involved in the human denial of illness, simply because it would take multiple blog posts to cover with any semblance of adequacy.

The one thing that kept leaping out at me, though, was this fact that despite the over 150 million chronic disease sufferers in America (there are those pesky public health statistics again!), we don't have a unified face. Our illnesses often keep us restricted to our homes or even our beds. However, with the advent of the internet, I believe that this is slowly changing. We have blogs. We have forums. We have Facebook. We have Twitter. We have YouTube. We don't have to be isolated anymore. I think Edwards made a good point with that - we don't have the voice we need to have within the world of health care and public policy, let alone society at large, because we were never able to truly rise up before. We can now though.

[Leah Rachel von Essen · Rating 1 out of 5]

I ended up very dissatisfied with this one. On one hand, I really enjoyed what Laurie Edwards wanted to do. I enjoyed how Edwards investigated the history of the semantics we use when discussing illness and disease, and how it impacts the cultural perceptions and interpretations of what it means to be ill and what it means to be well. It looks excellently at issues of informed content and patient advocacy, and the ways that cure-centered language makes our culture unable to understand or react to long-term, incurable, mysterious illnesses.

Unfortunately, Edwards fails once she begins to give her interpretations of specific events and protest movements. She wants to study only the cultural or semantic versions of patient advocacy, but actually, she simply skips nuances and important, complex issues. Her interpretations of the debate around vaccines focus entirely on parents and not at all on the false information anti-vaccine movements are rooted in or on the viewpoints of people on the autism spectrum. Her interpretation of the AIDS patient advocacy movement was somehow one of pure, easy success, a straightforward movement, which is ridiculous, and overlooks so much of the hardship and silence around the issues. Her discussions of specific moments or movements often leave out huge chunks of the issues. It's a shame, as her history had a lot of promise in her semantic interpretations and analyses, if she was more willing to dig deep and engage with the research-heavy, complex nuances of the histories she wanted to describe.

[Leah · Rating 5 out of 5]

"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 an extensive and talented researcher- a breadth of resources and perspectives are represented 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, I know too well how often we speak of people in the aggregate (e.g., "More than 133 million Americans suffer from chronic illness"). It can become too easy to become removed from the individual stories and experiences of patients. That is why Laurie's dual role as historian and patient is so unique and so important.

I highly recommend this book when it is released on April 9, 2013. I was lucky enough to receive an advanced reader copy since Laurie interviewed me regarding key health communication topics during the writing of the book.

[Joy Selak · Rating 5 out of 5]

Those who live with chronic illness, in particular the thousands of patients with invisible illnesses, feel impossibly lonely in their lives. Their reporting of their illnesses are often not believed by friends and family and sidelined by the health care community, invested in interventions and cures, not the treatment of ongoing illness.

Laurie Edwards' brilliantly written and thoroughly researched book cures one thing--loneliness. By taking readers through the social history of chronic illness in American it is possible to see one's place through time and evolving cultural biases and understand patients are not to blame for being sick.

Ms. Edwards, a patient herself, also helps frame the need for debate and advocacy for all who have, live with, or care for someone with chronic illness. I could not put this book down. I will come back to it often for my own research and education.

Joy H. Selak
Author of You Don't LOOK Sick! Living Well with Invisible Chronic Illness, 2nd Edition.

[Jane Wageman]

In place of this book, I'd recommend Meghan O'Rourke's "The Invisible Kingdom" for a more nuanced, in-depth exploration of chronic illness.

There are some good points in the opening chapters about cause-related marketing, the history of gender and illness, and experiences of chronic pain, but the book as a whole is uneven and disorganized. The chapters that focus on the effects on the internet and social media start from a promising premise--to consider how they shape patients' access to information and relationship to their illness--but the book ultimately fails to question the validity of that information, even when it is scientifically disproven (There is a lot of space given to autism and vaccines, which is a poor choice for illustrating the author's point for several reasons, not least of which because it doesn't fit the book's focus on chronic illness.) Ultimately a frustrating read. Would not recommend.

Also, the audiobook is poorly recorded. Some mispronunciation of names and noticeable cuts between recordings.

[Sarah Pascarella · Rating 4 out of 5]

Full disclosure: I know the author. This book, Edwards' second on chronic illness, seemed a timely choice during the COVID-19 pandemic. Knowing there could be long-term implications and effects of the coronavirus, I wanted to get a better understanding of the American experience of living with incurable conditions up to this point, so I can be a better advocate, ally, and (inevitably) patient, moving forward. Edwards does a great job of unpacking how pervasive and impactful chronic illness has been to our culture, politics, and economy, and the many challenges we face in making real progress in treating chronic conditions in the years to come. She does not offer easy solutions, but instead highlights specific challenges and opportunities for improvement for lawmakers, corporate decision-makers, and everyday citizens to pursue. I look forward to Edwards' next project!

[Kim]

I couldn't truck through this. It was 83 pages in out of about 200, and it just wasn't delivering what I wanted to read. I kept putting it down to do other things, tried to read it in bursts and finally quit when my mind was like "I have over 200 books I could be reading instead."

I thought this was going to be delving into doctor-patient relationships and their evolution, maybe touching on how those who already have trouble with employment then attempt to manage chronic illnesses. I also (wrongly) thought this would be more focused on pharmaceutical companies advertising new diseases directly to consumers. It just seemed like every time something was mentioned, it only got a brief explanation and then we did either a time jump or changed topics and it just fell flat.

[Danielle · Rating 1 out of 5]

I really wanted to like this book. I live with rare disorders and lost my sister from them also. I am the only one in the world known with some of what I have and some don't even have names. Chronic illness books are hard to find where it comes from the patient perspective without being a one person memoir. I did like the anecdotes and some of the beginning facts but still felt like it lacked connection to the reader. I wanted to know more about how chronic illness was perceived historically (although I do know some of that I wanted another resource) and this just talked about current day really. The title is a bit misleading. Parts were too long and others too short so it also felt like the writing went in a lot of directions without a good flow.

[Dorothee · Rating 4 out of 5]

Good historical and political analysis of activism and changes in treatment and perception of chronic illness. Loved chapters 1-6!
Found the last 50 pages a little too generalizing, somehow touching on too many issues and not going into a deeper analysis. Unfortunately the debate about the ACA that closes the book is already no longer up to date, which takes away from the impact of the conclusion.
Still, can recommend this for everyone interested in a good and engaging overview of the socio-political developments of chronic illness in the US. Overlaps with but also distances itself from disability.

[Christina O?Hara · Rating 4 out of 5]

As someone who suffered from invisible symptoms and evaded diagnosis for 2.5 years, this book nearly brought me to tears. It was soothing to read others who had had similar experiences. I enjoyed that aspect of it very much.

However, with respect to some of the commentary on technology and social media, this is truly a piece that is relevant to the times during which it was created. It was released in 2013, and in 2025, some of its claims no longer resonate.

Despite this flaw, I found the book informative and moving. I recommend it to people in my life that suffer from invisible illnesses.

[Anelie · Rating 4 out of 5]

This was interesting. She talked about chronic illness, the issues surrounding it, and the difficulties we have as a society in dealing with it. Although it is not a long book, it covers the issues well if not deeply and delineates the difficulties we have even talking about the issues, let alone dealing with them in a meaningful way.

[Marina · Rating 3 out of 5]

I enjoyed parts of this book and found a lot of the history interesting.

I do think this book tries to neatly wrap people up in the sick vs. well and male vs. female buckets. I wish the author would’ve discussed how socioeconomic status, race and sexuality play into medical treatment, research and patient-physician relationship.

[Z Blair · Rating 5 out of 5]

This book is so well written, and so pertinent to my work and really, my personal life. I'll add a more thoughtful review when I have finished, but I just want to say: IF you or someone you love is living with a chronic illness, this book is a must read!

[Thomas Wright · Rating 4 out of 5]

Well written, provocative and compelling. Shares the perspective of those among nearly half of our citizens who have conditions that will never be”cured” but must be “managed”. Really worth the read.

[Courtney · Rating 3 out of 5]

I wanted to like this as an overarching view of community and social activism based on shared chronically ill identity, but most of the analysis felt surface-level and summational. Well-articulated, but not necessarily new or insightful.

[M.j.b. · Rating 2 out of 5]

Struggled to finish this. The author has done her research. She also has compelling personal experience with chronic illness. However, I had difficulty staying on track in certain sections of this book.

[Coral Rose · Rating 4 out of 5]

This was a good read. A lot of thought-provoking information about the social implications of chronic illness. I really enjoyed this.