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The Invisible Kingdom: Reimagining Chronic Illness
"Remarkable." –Andrew Solomon, The New York Times Book Review
"At once a rigorous work of scholarship and a radical act of empathy."-Esquire
"A ray of light into those isolated cocoons of darkness that, at one time or another, may afflict us all." -The Wall Street Journal
"Essential."-The Boston Globe
A landmark exploration of one of the most consequential and mysterious issues of our time: the rise of chronic illness and autoimmune diseases
A silent epidemic of chronic illnesses afflicts tens of millions of Americans: these are diseases that are poorly understood, frequently marginalized, and can go undiagnosed and unrecognized altogether. Renowned writer Meghan O'Rourke delivers a revelatory investigation into this elusive category of "invisible" illness that encompasses autoimmune diseases, post-treatment Lyme disease syndrome, and now long COVID, synthesizing the personal and the universal to help all of us through this new frontier.
Drawing on her own medical experiences as well as a decade of interviews with doctors, patients, researchers, and public health experts, O'Rourke traces the history of Western definitions of illness, and reveals how inherited ideas of cause, diagnosis, and treatment have led us to ignore a host of hard-to-understand medical conditions, ones that resist easy description or simple cures. And as America faces this health crisis of extraordinary proportions, the populations most likely to be neglected by our institutions include women, the working class, and people of color.
Blending lyricism and erudition, candor and empathy, O'Rourke brings together her deep and disparate talents and roles as critic, journalist, poet, teacher, and patient, synthesizing the personal and universal into one monumental project arguing for a seismic shift in our approach to disease. The Invisible Kingdom offers hope for the sick, solace and insight for their loved ones, and a radical new understanding of our bodies and our health.
"At once a rigorous work of scholarship and a radical act of empathy."-Esquire
"A ray of light into those isolated cocoons of darkness that, at one time or another, may afflict us all." -The Wall Street Journal
"Essential."-The Boston Globe
A landmark exploration of one of the most consequential and mysterious issues of our time: the rise of chronic illness and autoimmune diseases
A silent epidemic of chronic illnesses afflicts tens of millions of Americans: these are diseases that are poorly understood, frequently marginalized, and can go undiagnosed and unrecognized altogether. Renowned writer Meghan O'Rourke delivers a revelatory investigation into this elusive category of "invisible" illness that encompasses autoimmune diseases, post-treatment Lyme disease syndrome, and now long COVID, synthesizing the personal and the universal to help all of us through this new frontier.
Drawing on her own medical experiences as well as a decade of interviews with doctors, patients, researchers, and public health experts, O'Rourke traces the history of Western definitions of illness, and reveals how inherited ideas of cause, diagnosis, and treatment have led us to ignore a host of hard-to-understand medical conditions, ones that resist easy description or simple cures. And as America faces this health crisis of extraordinary proportions, the populations most likely to be neglected by our institutions include women, the working class, and people of color.
Blending lyricism and erudition, candor and empathy, O'Rourke brings together her deep and disparate talents and roles as critic, journalist, poet, teacher, and patient, synthesizing the personal and universal into one monumental project arguing for a seismic shift in our approach to disease. The Invisible Kingdom offers hope for the sick, solace and insight for their loved ones, and a radical new understanding of our bodies and our health.
Editorial Reviews
one
"Gradually and Then Suddenly"
In the fall of 1997, after I graduated from college, I began experiencing what I called "electric shocks"-stabbing sensations that flickered over my legs and arms every morning, as if I were being stung by tiny bees. The shocks were so extreme that as I walked to work from my East Village basement apartment, I often had to stop and rub my legs against a parking meter; if I didn't, my muscles would twitch and my legs would jerk. My doctor couldn't figure out what was wrong-dry skin, he proposed-and eventually the shocks went away. A year later, they returned for a few months, only to go away again just when I felt I couldn't bear them any longer.
In my twenties, the shocks and other strange symptoms-bouts of vertigo, fatigue, joint pain, memory problems, night sweats, tremors-came and went. For a year, every night around two a.m., I would wake up in a sweat to find hives covering my legs, leaving me itchy and wide awake, my pajamas and sheets so wet I had to change them. Doctors prescribed a daily dose of antihistamines until the hives went away. There was a test that suggested lupus, and then a follow-up that showed nothing was wrong; my lab work looked fine. "The tests were all negative. It's just one of those things that will go away," a specialist told me. I remember thinking, Don't you want to know why I have severe hives?
In the way of women who have internalized disordered ideas about food and control, I associated my strange bouts of fatigue and discomfort with eating poorly (even though I ate a reasonably healthy diet). It was easy, in those years, to feel that a lack of dietary discipline played a role in my exhaustion, because I could tell, vaguely, that certain foods made me feel worse, leading me to assume responsibility for my own unwellness. I toggled between the conviction that something had to be wrong-I didn't feel OK-and the conviction that I was to blame, and if I just stopped eating sugar, or pizza, say, I'd be fine.
One night, I woke up suddenly from a nightmare that a man in a dirty gray sweatshirt was stabbing me. My period had started, but in addition to the cramps I had a sharp pain in my lower right abdomen. The pain grew in magnitude until, heat flushing my body, I suddenly vomited. I thought perhaps I had appendicitis, but the pain went away an hour later, just as I was preparing to go to the ER. "Everyone feels cramps," my gynecologist told me when I asked about it.
At the advice of a friend, I went to see her gynecologist. This doctor listened and nodded when I mentioned the stabbing pain; I felt relief at the recognition. She did an exam and ultrasound. "I think you might have endometriosis, an immune-...
"Gradually and Then Suddenly"
In the fall of 1997, after I graduated from college, I began experiencing what I called "electric shocks"-stabbing sensations that flickered over my legs and arms every morning, as if I were being stung by tiny bees. The shocks were so extreme that as I walked to work from my East Village basement apartment, I often had to stop and rub my legs against a parking meter; if I didn't, my muscles would twitch and my legs would jerk. My doctor couldn't figure out what was wrong-dry skin, he proposed-and eventually the shocks went away. A year later, they returned for a few months, only to go away again just when I felt I couldn't bear them any longer.
In my twenties, the shocks and other strange symptoms-bouts of vertigo, fatigue, joint pain, memory problems, night sweats, tremors-came and went. For a year, every night around two a.m., I would wake up in a sweat to find hives covering my legs, leaving me itchy and wide awake, my pajamas and sheets so wet I had to change them. Doctors prescribed a daily dose of antihistamines until the hives went away. There was a test that suggested lupus, and then a follow-up that showed nothing was wrong; my lab work looked fine. "The tests were all negative. It's just one of those things that will go away," a specialist told me. I remember thinking, Don't you want to know why I have severe hives?
In the way of women who have internalized disordered ideas about food and control, I associated my strange bouts of fatigue and discomfort with eating poorly (even though I ate a reasonably healthy diet). It was easy, in those years, to feel that a lack of dietary discipline played a role in my exhaustion, because I could tell, vaguely, that certain foods made me feel worse, leading me to assume responsibility for my own unwellness. I toggled between the conviction that something had to be wrong-I didn't feel OK-and the conviction that I was to blame, and if I just stopped eating sugar, or pizza, say, I'd be fine.
One night, I woke up suddenly from a nightmare that a man in a dirty gray sweatshirt was stabbing me. My period had started, but in addition to the cramps I had a sharp pain in my lower right abdomen. The pain grew in magnitude until, heat flushing my body, I suddenly vomited. I thought perhaps I had appendicitis, but the pain went away an hour later, just as I was preparing to go to the ER. "Everyone feels cramps," my gynecologist told me when I asked about it.
At the advice of a friend, I went to see her gynecologist. This doctor listened and nodded when I mentioned the stabbing pain; I felt relief at the recognition. She did an exam and ultrasound. "I think you might have endometriosis, an immune-...
Readers Top Reviews
Cheyanne FarleyCorre
Context first to be fair. Our community of 300,000 ruby red underinformed deep dish Evangelical. Have decades poorly handled toxic wastes from oil+ag industries creating pollution. In radius 250 miles w have 1 FT Rheumtologist. He LITERALLY does not permit his staff to answer office phones. You leave message might get back to you within 72 hrs during business days. The door to office is kept locked NO ONE allowed in without escort. The office staff will call police on patients to make them go away. There is also large group desperate chronic illness patients. Autoimmune illness is rampant. Thyroid disease alone 27% higher than other locations. Had to become my own patient advocate. This book DID NOT add any original useful information to manage this struggle. Plus written in difficult thick dull academic fashion with no worthwhile payoff after the effort. Read every single word cover to cover index included. I know more about this topic than the author does. Very disappointed
C
This book is divided into three main parts, with 20 chapters, and a total of about 270 pages, not including the Notes section. In Part One – “Obstacles”, O'Rourke covers several different topics. In the Introduction, she briefly describes her own personal struggles with undiagnosed illness, including Epstein-Barr virus. She explains the scope of the problem of undiagnosed chronic illness, and gives some examples of the wide variety of chronic illnesses that are still widely under-recognized today. There are chapters in this section discussing autoimmune disease, chronic fatigue, long-COVID, and the doctor-patient relationship. O’Rourke also discusses alternative treatments, and society's tendency to view women as hypochondriacs. Throughout the book she describes her personal journey, as she battles with fatigue and undiagnosed chronic illness; sharing the painful memories and the lessons she learned. Part Two - “Mysteries” goes into more detail about various aspects of chronic illness. O'Rourke covers specific autoimmune issues, the mind/body connection, positive thinking and psychology, battles with Lyme disease, and dealing with uncertainty. In Part Three - “Healing”, O'Rourke focuses more on treatment and recovery, and what reforms might be needed to be able to more accurately recognize signs of chronic illnesses in patients in the future. She discusses long COVID, how chronic illness can change you psychologically, and what wisdom can be learned from suffering through chronic illness. Overall, I found this book to be pretty interesting, if only slightly less informative than I had hoped. The author spends around half of the book recounting her personal journey and struggles, and mixes in more general information about chronic illnesses throughout. There is some decent information here, but be aware that this is less of a scientific discussion or medical journal; and more of a personal story about what it feels like to struggle through these illnesses.
Short Excerpt Teaser
one
"Gradually and Then Suddenly"
In the fall of 1997, after I graduated from college, I began experiencing what I called "electric shocks"-stabbing sensations that flickered over my legs and arms every morning, as if I were being stung by tiny bees. The shocks were so extreme that as I walked to work from my East Village basement apartment, I often had to stop and rub my legs against a parking meter; if I didn't, my muscles would twitch and my legs would jerk. My doctor couldn't figure out what was wrong-dry skin, he proposed-and eventually the shocks went away. A year later, they returned for a few months, only to go away again just when I felt I couldn't bear them any longer.
In my twenties, the shocks and other strange symptoms-bouts of vertigo, fatigue, joint pain, memory problems, night sweats, tremors-came and went. For a year, every night around two a.m., I would wake up in a sweat to find hives covering my legs, leaving me itchy and wide awake, my pajamas and sheets so wet I had to change them. Doctors prescribed a daily dose of antihistamines until the hives went away. There was a test that suggested lupus, and then a follow-up that showed nothing was wrong; my lab work looked fine. "The tests were all negative. It's just one of those things that will go away," a specialist told me. I remember thinking, Don't you want to know why I have severe hives?
In the way of women who have internalized disordered ideas about food and control, I associated my strange bouts of fatigue and discomfort with eating poorly (even though I ate a reasonably healthy diet). It was easy, in those years, to feel that a lack of dietary discipline played a role in my exhaustion, because I could tell, vaguely, that certain foods made me feel worse, leading me to assume responsibility for my own unwellness. I toggled between the conviction that something had to be wrong-I didn't feel OK-and the conviction that I was to blame, and if I just stopped eating sugar, or pizza, say, I'd be fine.
One night, I woke up suddenly from a nightmare that a man in a dirty gray sweatshirt was stabbing me. My period had started, but in addition to the cramps I had a sharp pain in my lower right abdomen. The pain grew in magnitude until, heat flushing my body, I suddenly vomited. I thought perhaps I had appendicitis, but the pain went away an hour later, just as I was preparing to go to the ER. "Everyone feels cramps," my gynecologist told me when I asked about it.
At the advice of a friend, I went to see her gynecologist. This doctor listened and nodded when I mentioned the stabbing pain; I felt relief at the recognition. She did an exam and ultrasound. "I think you might have endometriosis, an immune-modulated disease where tissue from the uterus gets out and coats the abdomen and other organs, causing pain," she said. "But it doesn't really matter unless you want to get pregnant: it can cause infertility. Later we might want to address it with surgery. For now, I'd just take ibuprofen during your period." She gave me some tissues and I wiped myself, dressed, and left, puzzled by the way my pain had been relegated to a sign that my fertility might be compromised, not a problem in its own right.
When I was twenty-four, I started waking up with a feeling that a foggy miasma filled my brain. I would go for long runs before work to clear my head, lacing up my shoes, sweating off the sleep hangover. I thought everyone felt this way, that I was just fighting off a cold. But why was I so often on the verge of a cold-more than anyone else I knew? Periodically, I would start digging a little. In 2005, around the time of my twenty-ninth birthday, I was strangely enervated. I remember googling my symptoms and being struck by how much they matched those of several autoimmune diseases. I showed the results page to Jim; as the screen cast a blue light against his face, he nodded. "You are tired a lot for someone so young," he said. But then my doctors would reassure me that my lab work looked fine, and I'd return to trying to power through.
My tendency to ignore my symptoms derived in part from the fact that I grew up in a family that was largely indifferent to matters of health. As a child in Brooklyn-my parents were teachers at the school I attended-I had been raised not to think too much about my body. My parents had moved to the city from New Jersey, where they had grown up in large Irish American Catholic families. They were pragmatic and rather stoical. Like many in their baby boomer generation, they saw doctors as unquestionable experts. You didn't go to them unless you had a high fever or a bad fall or a wound that needed stitchin...
"Gradually and Then Suddenly"
In the fall of 1997, after I graduated from college, I began experiencing what I called "electric shocks"-stabbing sensations that flickered over my legs and arms every morning, as if I were being stung by tiny bees. The shocks were so extreme that as I walked to work from my East Village basement apartment, I often had to stop and rub my legs against a parking meter; if I didn't, my muscles would twitch and my legs would jerk. My doctor couldn't figure out what was wrong-dry skin, he proposed-and eventually the shocks went away. A year later, they returned for a few months, only to go away again just when I felt I couldn't bear them any longer.
In my twenties, the shocks and other strange symptoms-bouts of vertigo, fatigue, joint pain, memory problems, night sweats, tremors-came and went. For a year, every night around two a.m., I would wake up in a sweat to find hives covering my legs, leaving me itchy and wide awake, my pajamas and sheets so wet I had to change them. Doctors prescribed a daily dose of antihistamines until the hives went away. There was a test that suggested lupus, and then a follow-up that showed nothing was wrong; my lab work looked fine. "The tests were all negative. It's just one of those things that will go away," a specialist told me. I remember thinking, Don't you want to know why I have severe hives?
In the way of women who have internalized disordered ideas about food and control, I associated my strange bouts of fatigue and discomfort with eating poorly (even though I ate a reasonably healthy diet). It was easy, in those years, to feel that a lack of dietary discipline played a role in my exhaustion, because I could tell, vaguely, that certain foods made me feel worse, leading me to assume responsibility for my own unwellness. I toggled between the conviction that something had to be wrong-I didn't feel OK-and the conviction that I was to blame, and if I just stopped eating sugar, or pizza, say, I'd be fine.
One night, I woke up suddenly from a nightmare that a man in a dirty gray sweatshirt was stabbing me. My period had started, but in addition to the cramps I had a sharp pain in my lower right abdomen. The pain grew in magnitude until, heat flushing my body, I suddenly vomited. I thought perhaps I had appendicitis, but the pain went away an hour later, just as I was preparing to go to the ER. "Everyone feels cramps," my gynecologist told me when I asked about it.
At the advice of a friend, I went to see her gynecologist. This doctor listened and nodded when I mentioned the stabbing pain; I felt relief at the recognition. She did an exam and ultrasound. "I think you might have endometriosis, an immune-modulated disease where tissue from the uterus gets out and coats the abdomen and other organs, causing pain," she said. "But it doesn't really matter unless you want to get pregnant: it can cause infertility. Later we might want to address it with surgery. For now, I'd just take ibuprofen during your period." She gave me some tissues and I wiped myself, dressed, and left, puzzled by the way my pain had been relegated to a sign that my fertility might be compromised, not a problem in its own right.
When I was twenty-four, I started waking up with a feeling that a foggy miasma filled my brain. I would go for long runs before work to clear my head, lacing up my shoes, sweating off the sleep hangover. I thought everyone felt this way, that I was just fighting off a cold. But why was I so often on the verge of a cold-more than anyone else I knew? Periodically, I would start digging a little. In 2005, around the time of my twenty-ninth birthday, I was strangely enervated. I remember googling my symptoms and being struck by how much they matched those of several autoimmune diseases. I showed the results page to Jim; as the screen cast a blue light against his face, he nodded. "You are tired a lot for someone so young," he said. But then my doctors would reassure me that my lab work looked fine, and I'd return to trying to power through.
My tendency to ignore my symptoms derived in part from the fact that I grew up in a family that was largely indifferent to matters of health. As a child in Brooklyn-my parents were teachers at the school I attended-I had been raised not to think too much about my body. My parents had moved to the city from New Jersey, where they had grown up in large Irish American Catholic families. They were pragmatic and rather stoical. Like many in their baby boomer generation, they saw doctors as unquestionable experts. You didn't go to them unless you had a high fever or a bad fall or a wound that needed stitchin...
