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The Invisible Kingdom: Reimagining Chronic Illness

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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’Rour 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.


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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’Rour 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.

30 review for The Invisible Kingdom: Reimagining Chronic Illness

  1. 4 out of 5

    Elyse Walters

    Audiobook ….read by Meghan O’Rourke Welcome to The Temple of Illness….🩺💊💉 I think I hate Meghan O’Rourke….. (kidding)…. Oh, but I needed to listen to this book like I need a hole-in-the-head. I’m very familiar with this world Meghan writes about. She was singing to the choir here. Got lupus, Lyme disease, Epstein-Barr, chronic fatigue syndrome, thyroid problems, Hashimoto’s disease, endometriosis, neuropathy, colitis, Crohn’s disease, an ulcer, adrenal fatigue, neurological issues, Lichen Planus, Audiobook ….read by Meghan O’Rourke Welcome to The Temple of Illness….🩺💊💉 I think I hate Meghan O’Rourke….. (kidding)…. Oh, but I needed to listen to this book like I need a hole-in-the-head. I’m very familiar with this world Meghan writes about. She was singing to the choir here. Got lupus, Lyme disease, Epstein-Barr, chronic fatigue syndrome, thyroid problems, Hashimoto’s disease, endometriosis, neuropathy, colitis, Crohn’s disease, an ulcer, adrenal fatigue, neurological issues, Lichen Planus, rashes that don’t go away, foggy brain, joints hurt, numbness in your feet, headaches, general fatigue, depression, grief, low blood pressure, burning pain, sharp pain, dull pain, long covid, other autoimmune diseases, and undiagnosed infections? Were you a coming-of-age athlete that was encouraged to ignore physical pain? How did that work out for you? Do you have mercury fillings in your teeth? Are you concern your wi-Fi is contributing to your decline health? Are you a person who has tried the many ‘natural’ remedies to ‘feel better’? Stayed away from gluten, eggs, wheat, dairy, coffee, alcohol, sugar, preservatives, nightshades vegetables, and sugar? Made your own homemade almond milk, grounded your own flax seeds, (gotta get your omega-3’s), tried licorice pills, Turmeric, and only eat organic, - including organic spices? Tried magnetic therapy? Other spiritual remedies? Meditation, acupuncture, light therapy? Cleansing diets? Colonics? Are you in bed by 10pm… and avoid stress like the plague? Chronic illnesses are simply not fun…. and our author, Meghan O’Rourke, points this all out to us ….”gives us illnesses on a silver platter”. ….[as I said - I hate her]….. She can’t tell us if it was the green drinks, or the antibiotics that made her better….but she is feeling a little better….. …… she thinks about other patients whose diseases have gone undiagnosed and are in worse condition than she is. ….many complicated illnesses are poorly diagnosed…..many medical complaints are not recognized by Western medicine. ….undiagnosed illnesses are rampant. ….who do the suffering usually blame? Themselves! shoulda, coulda, woulda…..I SHOULD have not eaten that pizza, not eaten that sugar cookie…..I should’ve exercise more. etc. ….Being chronically ill comes with years of suffering, management, sometimes a diagnosis, sometimes not. There was nothing groundbreaking for me in this book— (but that’s only because I’ve been schooled in this world)….. Meghan offers no real solutions—but she does unmask the complexity of chronic illnesses……leaving readers who suffer not feeling alone —- It’s a book that opens discussions about health, disease, and the search for healing. I have a full library of health books…. Autoimmune emphasis, thyroid and Hashimoto’s, colon health, heart health, Lichen Planus, Hirshsprung’s disease, nutritional library, etc. I have seen Functional Medical doctors- gone to expensive alternative labs, ‘and’ seen Western doctors for ‘rare’ invisible disorders. BOTH …..western and alternative — Like Meghan…. I have experienced symptoms in which doctors could not account for. MOST OF MY FRIENDS CAN SHARE SIMILAR STORIES…. Or in the case of autoimmune diseases…. The best western doctors I have had, were ‘honest’ in saying — “we don’t know how or why people get ……[fill in the blank]…..and there is no cure. in my case Lichen Planus…… or….. Hirschsprung disease ……( they know what it is)…..but it’s so rare in ‘adults’…..other than removing the entire large intestine….all they can offer is cocktail of medications)….. So…..many of us live with chronic conditions…. We still laugh, goof off, have close friends who make all the difference in the world…..get mad & angry some days…. but … the love in our hearts with our ‘relationships/connections’ has its own power ….it helps!!! Helps a lot!!! Our communities matter - support well being. …..as for my own little personal - daily - therapy …..I spend time in water…. (my healing water office)…..and admit to taking 1 gummy cannabis a day. (usually around 3 or 4 pm)…. The loopy- silly relaxed feeling lasts about six hours for me. Megan O’Rourke is LOVELY WRITER…….(talented as any author is)…. I hate her…..(I didn’t want to re-visit the mysteries of illness)…..but …..truth: it was valuable. I would love to read some of Meghan’s poetry - and her other books. Yeah…..this book is useful, helpful, supportive, difference making…. ….even for snobs like me — who know this stuff! Lol Sincerely….. Kudos to Meghan….somebody needs to write these books! Thank you for doing it. Wishing you wellness.

  2. 4 out of 5

    Diana Green

    It is intense reading a memoir written by someone who has been on such a similar journey to my own. The parallels in our experiences with chronic illness are almost eerie, but I've learned there are many, many people who are suffering from these types of hard to diagnose (often auto-immune related) conditions. It is becoming an all too common story, including the difficulty in getting appropriate medical recognition and care. Although the author shares her personal experiences, she also did a lot It is intense reading a memoir written by someone who has been on such a similar journey to my own. The parallels in our experiences with chronic illness are almost eerie, but I've learned there are many, many people who are suffering from these types of hard to diagnose (often auto-immune related) conditions. It is becoming an all too common story, including the difficulty in getting appropriate medical recognition and care. Although the author shares her personal experiences, she also did a lot of research into the larger epidemic of chronic illness and even the history/progress of medical attitudes/practices in general. Some of this extra information was interesting and useful, but there was SO much it, I found it became overwhelming. I started skimming sections that didn't relate as closely to my own health issues. I also wearied of the repetition in her descriptions of the ups and downs of her illness. That's the nature of chronic illness...believe me, I know, firsthand. But in this book, I felt there needed to be more editing out of long sections that repeat things already expressed multiple times. There is a place for summary and streamlining, and this book could have benefited from losing about a third of its length. That said, I want to acknowledge the courage and stamina it must have taken the author to relate in such a detailed and honest manner the experiences of her illness. There are important insights to be gained from this book, and there were many passages that made me stop and reread, just to take in the full power of what the author was conveying.

  3. 5 out of 5

    Darcia Helle

    We all want to feel seen, especially when we’re suffering. With The Invisible Kingdom, Meghan O'Rourke takes us through the quagmire of life with an invisible illness, sharing the emotional turmoil of not knowing what’s wrong, while navigating a medical system that sets you up for failure. This is not a guide to healing. O’Rourke acknowledges what most of us living with some form of invisible illness already know; every case is different and every person responds differently. By sharing her persona We all want to feel seen, especially when we’re suffering. With The Invisible Kingdom, Meghan O'Rourke takes us through the quagmire of life with an invisible illness, sharing the emotional turmoil of not knowing what’s wrong, while navigating a medical system that sets you up for failure. This is not a guide to healing. O’Rourke acknowledges what most of us living with some form of invisible illness already know; every case is different and every person responds differently. By sharing her personal journey, O’Rourke shines a light in the darkness, allowing those of us suffering to see we’re not alone, and demanding the rest of the world see us as we are—sick, not crazy. O’Rourke also delves into biology and science, exploring the immune system and the many ways in which it can quietly go haywire. This book hit me hard because I’ve been living it since childhood. As the decades pass, our numbers grow, and together we’re finally making too much noise to be ignored. Yet the stigma remains, and science is woefully behind. If you’re living this story or you know someone who is, this book provides insight into a life disrupted and derailed. *I received a free copy from Riverhead Books.*

  4. 4 out of 5

    Ann

    The title of this book should be “The Privileged Journey through Chronic Illness.” Not everybody has the connections and resources to travel to Great Britain for a fecal transfer or jet off to the Washington coast to rest. I do not doubt that her experiences have lead to a lot of pain and suffering, yet the account veers to a lot of complaining about how people do not get it. I am sure that people feel like it at their moments. Yet she stays employed in jobs that others would dream of. Maybe a lit The title of this book should be “The Privileged Journey through Chronic Illness.” Not everybody has the connections and resources to travel to Great Britain for a fecal transfer or jet off to the Washington coast to rest. I do not doubt that her experiences have lead to a lot of pain and suffering, yet the account veers to a lot of complaining about how people do not get it. I am sure that people feel like it at their moments. Yet she stays employed in jobs that others would dream of. Maybe a little more time would have benefitted this book.

  5. 5 out of 5

    K

    3.5 Rounded up, started off super strong and affirming and I love the mix of science with personal stories, though I think this book is missing a disability justice analysis (disabled is probably not even used within the book), and I found the ending hurried and unresolved.

  6. 4 out of 5

    Leigh Kramer

    4.5 stars. The author shares an insightful, honest account of her chronic illnesses, from her family’s narratives around illness to the doctors who dismissed her symptoms. She was eventually diagnosed with Hashimoto’s disease, endometriosis, POTS, Lyme disease, and hypermobile Ehlers-Danlos syndrome. It was unfortunately a long road to getting those diagnoses. But the doctors weren’t failing her out of callousness necessarily so this book is also an exploration of the Western model of medicine a 4.5 stars. The author shares an insightful, honest account of her chronic illnesses, from her family’s narratives around illness to the doctors who dismissed her symptoms. She was eventually diagnosed with Hashimoto’s disease, endometriosis, POTS, Lyme disease, and hypermobile Ehlers-Danlos syndrome. It was unfortunately a long road to getting those diagnoses. But the doctors weren’t failing her out of callousness necessarily so this book is also an exploration of the Western model of medicine and how that impacts those living with invisible illnesses. She writes with a lot of compassion for herself as she was trying to find answers, as well as others seeking diagnosis. If you’re in a similar boat, I think you’ll be encouraged to keep going but please exercise caution as needed as she goes into a lot of details about the ups and downs that could prove to be difficult depending on where you’re at. For those of us on the other side, I don’t think her intention was to show readers how they can be better friends or partners to those with chronic illness but it’s there all the same. She examines a number of issues, including why doctors find it easier to dismiss symptoms than listen to patients and why the tests themselves can be inaccurate and what actual health looks like when living with a chronic illness. I used to work in healthcare and I have friends with some of the illnesses mentioned so none of this was surprising but it can be disheartening. At the same time, there are doctors out there who are trying to change how things are done and who are innovating within the field. With the rise of long COVID, the author is hopeful we’ll see a changing tide and patients across the board will receive better care for symptoms that aren’t straightforward. O’Roarke is a white cishet woman and she’s aware of her privilege and the way this shapes the story she tells. Where possible, she highlights examples from other people, mentions statistics for marginalized communities, the impact of medical fatphobia and racism, or how her care might differ due to her privilege. She may have maxed out her credit cards while going to different doctors and practitioners—including going so far as flying to London for an unconventional treatment—but she’s also married and could reasonably take on some debt in her quest to figure out what was wrong. She also illustrates how the desperation to find answers can lead to less sound decision-making when it comes to alternative medicine. I wish this had been more intersectional in terms of the disabled community. O’Roarke doesn’t seem to have thought of herself that way, even when she was barely functional, but there are plenty with chronic illness and autoimmune disease who are and that adds a whole other layer, especially if they’re limited by insurance and disability benefits. She talked about COVID but she did not delve into the way antimaskers and antivaxers negatively impact those who are immunocompromised and the messages this sends to the disabled community. It was a curious oversight. But on the whole, this was an excellent read and I got so much out of it. A personal reflection: It’s difficult to read a book like this and not think about your own medical history. I went into this thinking I'd learn a lot—and I did. I also went into this thinking I didn’t have a chronic illness. Except I do. I just hadn’t thought of it that way before because it’s largely under control and my diagnosis happened in a roundabout way. I was diagnosed with endometriosis several years ago when I had to get an ultrasound for kidney stones. (0/10 do not recommend kidney stones.) I’ve had horrible periods since I was 13 years old but I’d always been told cramps and pain were normal, etc. I just took it as my lot in life and developed a high pain tolerance. A few years before I was diagnosed, I’d wondered if I might have endometriosis after reading Padma Lakshmi’s memoir. There aren’t easy ways to detect it and it didn’t feel worth investigating further since I had no idea if my insurance would cover anything when I wasn’t experiencing the same level of pain as I had in high school and college. It was extremely disconcerting to realize that there was a medical reason for my symptoms and that my doctors never should have dismissed what I said all those years ago. Things have come a long way in the decades since but I’d hazard a guess we all have a story about a doctor who didn’t listen, no matter what the issue was. We all deserve better. CW: various chronic illnesses, various autoimmune diseases, COVID-19/long COVID, difficulty obtaining diagnosis and misdiagnosis, death of mother (stage 4 colorectal cancer), death of father-in-law (brain tumor from metastatic melanoma), father diagnosed with stage 4 Hodgkin’s lymphoma, ableism, internalized ableism, suicidal ideation (mostly others), anxiety, depression, nightmare, ruptured endometrial cyst (surgery went fine), use of oxycodone after surgery, medical sexism, discussion of medical fatphobia, role of food in health and wellness, diets, fertility issues (able to get pregnant after Lyme diagnosis and healing), divorce and reconciliation with husband, some equating of genitalia and biology to gender (but also takes care to mention trans folks inclusively), ableist language, mention of medical racism and medical transphobia, reference to woman who was anorexic as a teen

  7. 5 out of 5

    M

    Megan O’Rourke boldly writes graphic details of her fecal transplant. She includes vivid descriptions of the colonic that was part of the procedure. Gross, right? O’Rourke was sick with weird vague symptoms, she desperately (mostly) wanted to get better, and she sought treatment via both ltraditional and alternative medicine. Along the way she learned how to better accept her situation. She over shared and then turned coy and evasive, which began to seem dishonest. Her science-y citations and fo Megan O’Rourke boldly writes graphic details of her fecal transplant. She includes vivid descriptions of the colonic that was part of the procedure. Gross, right? O’Rourke was sick with weird vague symptoms, she desperately (mostly) wanted to get better, and she sought treatment via both ltraditional and alternative medicine. Along the way she learned how to better accept her situation. She over shared and then turned coy and evasive, which began to seem dishonest. Her science-y citations and footnotes do not make this book “scholarly.” During the course of her illness, O’Rourke was told that she had abnormal thallium levels, probably caused by eating kale (seems to me that Dr. Oz mentioned this). She tries dry brushing, almond milk and all sorts of vaguely orthorexic sounding nutrition hacks. I don’t mean to sound skeptical, but I’m a skeptic. Carrot juice was big for a minute. I get it — try anything to feel better — but it’s a good idea to examine risks versus benefits when exploring treatment options — traditional or alternative. The risk to bank accounts should also be considered. (For the record, fecal transplants are used in treating patients who have c diff infections, and can be life changing for ulcerative colitis patients. But for others, who might be overly focused on their microbiome, these ‘transplants’ are popular, if wildly expensive, and their efficacy is questionable.) There is a lot of snake oil in the world. It’s tragic - really tragic - that so many people are so turned off by the old school doctor model that snake oil looks like the best option. Dubious science, dubious benefits, hard cold cash. Alternative medicine is a gigantic multi-billion dollar industry. I’m not saying that traditional Western medicine is all that great. I’m well aware that not long ago, any infection could be lethal, and doctors were like the guy in Deadwood, yanking teeth and applying poultices out back behind the stable. There are other medical memoirs out there—Lucia Perilla, Jessica Miller, Suleika Jaouad. Or just read Susan Sontag and skip the rest. These books say — listen to what happened to me, this is how I survived, and how it all turned out. The underlying message is — I found help and you probably can, too. A highly regarded physician (MD) once told me that if those alternatives really worked? We would all know it. O’Rourke issues a challenge to reimagine chronic illness — which is an admirable mission. One hopes that the “long Covid” cases will drag the medical community and the rest of the world into this long overdue reimagining. In the meantime, I worry that O’Rourke’s book offers her endorsement of alternative treatments in a world that has already been upended by pseudo-science and magical thinking. Carrot juice was a thing for a minute, after all.

  8. 5 out of 5

    Sahitya

    I only read this one because it was a group read for a readathon and I had a feeling it would be very eye opening. I also thought it might have some insights into the world of long COVID which is our current reality. And it was all that and more. I don’t have the kind of chronic illnesses that the author and millions others suffer from. I do have chronic hypothyroid for the past few years and had hyperthyroidism during my childhood, so I have a small understanding of what it feels like when you I only read this one because it was a group read for a readathon and I had a feeling it would be very eye opening. I also thought it might have some insights into the world of long COVID which is our current reality. And it was all that and more. I don’t have the kind of chronic illnesses that the author and millions others suffer from. I do have chronic hypothyroid for the past few years and had hyperthyroidism during my childhood, so I have a small understanding of what it feels like when you have to go from one doctor to the other so that you may get a solution for your issues. But in the author’s case, her various symptoms are debilitating and with no right diagnosis from the myriads of specialists she visits, it’s mentally challenging as well. While chronicling her years and years of suffering, the author also goes deep into the biology and science of autoimmune diseases, their history in the medical world, a general history of how patients with chronic but unexplainable illnesses have been treated over the years, the tendency to blame the patient as lying or the issues as psychological just because the existing science cannot identify a clear cut diagnosis, and the way the corporate medical and insurance industry has created a healthcare system where the “care” part of it is missing - it’s all about finding solutions but if a solution can’t be found, then gaslight the patients. As a middle class white woman, the author acknowledges that this discrimination increases many fold for BIPOC women. On the other hand, the author also goes in depth into all the research that she did personally over the years into alternative medical approaches, what other recourses chronic illness patients tried to alleviate their suffering, into diving into non western medicinal practices. There is a lot of information in the book, about the medical side, the alternative holistic healthcare approach side, as well as the socioeconomic and political sides and how all of them contribute to the lack of care for chronic illness patients. And like many advocates she interviews, she hopes that a more patient oriented approach could be a future possibility, where a patient is believed when they talk about their suffering, even when existing technology can’t corroborate it with a diagnosis. Understandably, she reiterates the importance of developing that kind of approach to healthcare as soon as possible because the pandemic has brought to light the many ways chronic illnesses can debilitate daily life in a breadth that has never been seen before. Preliminary observations have shown that Covid infections can ultimately lead to more autoimmune diseases in the long term and just by considering the number of people who have been infected till date and the different ways it is affecting each person - if a very patient focused research and care approach isn’t normalized, it will be devastating to millions. The book isn’t easy to read, can feel repetitive but that’s the nature of the author’s illness, can feel overwhelming because there’s too much information about too many topics in it, but nevertheless, it’s a important issue to read about, especially in a pandemic/ post-pandemic world.

  9. 5 out of 5

    Sara

    This one was a DNF for me. Having a chronic illness, I keep reading these types of memoirs in an effort to find relatable stories and I never do. I should just bail on the genre.

  10. 4 out of 5

    Yukari Watanabe

    I have similar health problem with the author. I bought a hardcover for my family to read so that they could understand what I've been going through. My Japanese review: https://youshofanclub.com/2022/03/11/... I have similar health problem with the author. I bought a hardcover for my family to read so that they could understand what I've been going through. My Japanese review: https://youshofanclub.com/2022/03/11/...

  11. 5 out of 5

    Kelly_Hunsaker_reads ...

    If you have an invisible, chronic illness... Or, if you know somebody with the same... Read this book. I rarely feel understood or seen. Not only is my body suffering from an invisible disease (or 6), I, myself, am invisible. But today someone saw me. Her name is Meghan O'Rourke. The author combines thorough research and memoir to write a relatable, easy to understand, and smart book that gives the reader insight into our bodies, and how science meets, or fails to meet, the needs of those of us su If you have an invisible, chronic illness... Or, if you know somebody with the same... Read this book. I rarely feel understood or seen. Not only is my body suffering from an invisible disease (or 6), I, myself, am invisible. But today someone saw me. Her name is Meghan O'Rourke. The author combines thorough research and memoir to write a relatable, easy to understand, and smart book that gives the reader insight into our bodies, and how science meets, or fails to meet, the needs of those of us suffering.

  12. 5 out of 5

    Sue Lipton

    If you’ve got any chronic medical conditions, this book will make you feel seen and heard.

  13. 4 out of 5

    Rosa

    I am enormously grateful to Meghan O’Rourke for writing this book. Her account illustrates the tremendous labor it takes to be mysteriously chronically ill, to keep looking for answers, and to not blame yourself for the systemic structures that leave so many of us - especially women - underdiagnosed, struggling, and unseen. If you have also been mired in the worlds of difficult to diagnose chronic illnesses, I recommend it. If you have friends or loved ones who have been through it or who have di I am enormously grateful to Meghan O’Rourke for writing this book. Her account illustrates the tremendous labor it takes to be mysteriously chronically ill, to keep looking for answers, and to not blame yourself for the systemic structures that leave so many of us - especially women - underdiagnosed, struggling, and unseen. If you have also been mired in the worlds of difficult to diagnose chronic illnesses, I recommend it. If you have friends or loved ones who have been through it or who have disappeared from your life while navigating unclear chronic illness, I recommend it. If it feels totally outside you or your network, I recommend it. Especially with the rise of long covid, we need to build greater understanding and provide more support to this “Invisible Kingdom.”

  14. 4 out of 5

    Kristina Gomez

    Favorite book of 2022 thus far

  15. 5 out of 5

    Kirsten

    The last chapter is a true gift to anyone living with a life-altering chronic illness, whether it fits in the "invisible" category or not. https://www.npr.org/sections/health-s... https://slate.com/technology/2022/03/... The last chapter is a true gift to anyone living with a life-altering chronic illness, whether it fits in the "invisible" category or not. https://www.npr.org/sections/health-s... https://slate.com/technology/2022/03/...

  16. 5 out of 5

    BookStarRaven

    The Invisible Kingdom by Meghan O’Roarke is the record of her journey through the strange land that is suffering from an auto-immune disease. She started having symptoms early in her twenty’s like fatigue, hives, dizziness, and brain fog. As is the case with many auto-immune sufferers she thought it was her diet or not getting enough sleep. But as her symptoms progressed it became hard to do even routine things. Having symptoms that no one can explain, least of all the doctors, is terrifying. It The Invisible Kingdom by Meghan O’Roarke is the record of her journey through the strange land that is suffering from an auto-immune disease. She started having symptoms early in her twenty’s like fatigue, hives, dizziness, and brain fog. As is the case with many auto-immune sufferers she thought it was her diet or not getting enough sleep. But as her symptoms progressed it became hard to do even routine things. Having symptoms that no one can explain, least of all the doctors, is terrifying. It feels l like you are in a never-ending tunnel often asking yourself “is this my life?”, “Can I live like this forever?” O’Roarke says, “Another difficulty in diagnosing autoimmune diseases is that they often present as a systemic illness, with symptoms occurring in different parts of the body, and yet our health care system is very siloed. Patients often end up consulting different specialists for different symptoms, with no one taking a big-picture look at the patient’s illness, unless a primary care doctor has the time to puzzle it out.” In sum, you have to go to different doctors to address all your different symptoms when the problem requires a holistic solution. I felt like O’Roarke’s story is one me and many other can relate to - the feeling that something is wrong only to go to the doctor and have them tell you you’re fine. She says, “The pattern is this: A patient goes to the doctor to explain that something seems very wrong. When tests turn nothing up, the patient is told she is fine, and emerges without answers, questing everything she knew about her body and perceptions.” This is something that needs to be talked about more often. This book was repetitive. Many of the same concepts came up over and over and her story had many ups and downs. O’Roarke could have cut out substantial portions, been more succinct, and said the same thing. I would recommend this book to anyone who has struggled with similar issues as Meghan o’rourke. I appreciate that this issue is finally getting recognition and am thankful her book is on the NYT Bestseller list. The more light we shine on this the more change can happen.

  17. 4 out of 5

    ShanTil

    "To become chronically ill is not only to have a disease that you have to manage, but to have a new story about yourself, a story that many people refuse to hear--because it is deeply unsatisfying, full of fits and starts, anger, resentment, chasms of unruly need." O'Rourke's work is part journalistic research, part memoir. There are fascinating interviews with palliative care providers and researchers, many of whom she met as she pursued treatment for her own mysterious ailments. It's deflat "To become chronically ill is not only to have a disease that you have to manage, but to have a new story about yourself, a story that many people refuse to hear--because it is deeply unsatisfying, full of fits and starts, anger, resentment, chasms of unruly need." O'Rourke's work is part journalistic research, part memoir. There are fascinating interviews with palliative care providers and researchers, many of whom she met as she pursued treatment for her own mysterious ailments. It's deflating to consider that if a wealthy, well-connected white American could not get the help she needed for years, anyone with even an ounce of less privilege is probably screwed. I ache for the alarming number of people taking up residence in this "invisible kingdom" who may never be able to access the resources they need, resources that are still so limited. O'Rourke also critiques the cultural narratives that have been created around illness. A big one is the so-called wisdom narrative, a tendency to expect those who are ill to learn something from their illness or experience moral and spiritual growth because of it. ("Is illness, in any way, a lesson? Illness is a travesty, illness is shit; illness is not redemptive unless it happens to be for a particular ill person, for reasons that are not replicable nor should they be said to be so.") The burden to handle medical trauma with grace is placed on the struggling individual, while very little support is afforded by society at large. At present, I consider myself on the luckier end of the spectrum. I've had my diagnosis of Hashimoto's thyroiditis for 5 years, although a recent miserable experience with Epstein-Barr and other complicating infections left me reeling. I have ways to manage the flares as they arise, the majority of my doctor visits are cursory check-ins and meds adjustments, and I'm able to work full-time and maintain a social life. Yet I still grieve the person I could have been if I remained healthy, and I know I won't ever really have her back. There is also an additional layer of pain for those of us who are told we "look fine," when the reality is we could be secretly suffering at any given time. These days I tend to measure my hope sparingly, but it's hard not to yearn for more successful books like this one to be published, harder still not to imagine widespread changes taking place in the way we speak about and treat chronic illness.

  18. 5 out of 5

    Peacejanz

    An amazing book - written by a woman about what is primarily women's health issues. O'Rourke has a reputation as a tedious researcher and this book is no different. The last 50 pages of this book are notes and sources for her information or quotations. The book is a result of her illness which lasted for years and was misdiagnosed or undiagnosed. She details going from doctor to doctor and then gives us research about how most medical doctors give little help to women who have chronic illness, w An amazing book - written by a woman about what is primarily women's health issues. O'Rourke has a reputation as a tedious researcher and this book is no different. The last 50 pages of this book are notes and sources for her information or quotations. The book is a result of her illness which lasted for years and was misdiagnosed or undiagnosed. She details going from doctor to doctor and then gives us research about how most medical doctors give little help to women who have chronic illness, weakness, pain, etc. She gives research that shows that the average medical doctor interrupts patients after 11 seconds of the patient's speech. No wonder we cannot get diagnosed. She also notes that medical doctors do not like to manage a disease, such as diabetes; they like to fix situations, as they are taught to do in medical school. I suppose that I knew this but reading it in black ink on white pages made it more real to me. This book can get tedious at times. O'Rourke details many situations when things fall apart; leading a seminar, when she is on a hike with her husband, when a physician insults her because she continues to be ill and cannot get pregnant. She sought out alternative medicine methods; she tried all meds that her physicians recommended. Some may consider this a negative book but I do not. She is just telling what is happening in the world of women's health. She acknowledges that race, class, money (or the lack thereof), insurance, many things influence the medical care that women get. As a female with chronic illness, I have experienced some of the things she has. But I sympathize with her for most of the book. If you are absolutely healthy, believe that all people in the US get wonderful health care, you probably will not bother with this book. If you are a female with chronic illness or chronic medical concerns you will learn a lot from this book. Perseverance will aid you in your search. She does not condemn the doctors - she calls for more understanding, more patience, more research and she points out that the Covid pandemic gives ideal information to bring about needed change in the US medical system.

  19. 5 out of 5

    Brenna

    I’m not going to rate this because it’s heavily based in the author’s narrative of her own experience of chronic illness. I wanted to read this because of my own experience of being diagnosed with multiple sclerosis a few years back, but my diagnosis was relatively quick, while the author is still unsure about the intersections of different illnesses she’s experiencing. What stuck out to me was the idea that people with pain and illness the world can’t see are often not believed and that in most I’m not going to rate this because it’s heavily based in the author’s narrative of her own experience of chronic illness. I wanted to read this because of my own experience of being diagnosed with multiple sclerosis a few years back, but my diagnosis was relatively quick, while the author is still unsure about the intersections of different illnesses she’s experiencing. What stuck out to me was the idea that people with pain and illness the world can’t see are often not believed and that in most places doctors are so specialized that it makes it hard for people managing chronic illness to receive holistic care. This has been true for me, even though I’m getting great MS care at the Cleveland Clinic. I felt like my neurologist wasn’t comfortable making recommendations about COVID-19 to me despite me being immunosuppressed due to my MS medication or managing related pain symptoms. Anyway, if you have a chronic illness and your journey has not been a straight line, you might enjoy this. The author does bring in science and what’s currently happening in the field, but because her story was not a straight narrative, as is the case for many people with autoimmune diseases, it felt a little hard for me to follow (though maybe that’s also because I listened to the audiobook). I felt a bit detached because my experience was so different, but I think there is good info there and lots of food for thought.

  20. 5 out of 5

    Madeleine

    I underlined, scribbled, circled, and otherwise notated my way through this book. It's a pretty good one, probably the best of its kind I've read so far (no doubt for the simple fact that O'Rourke is a journalist and not—and I do mean this with the utmost respect—a real housewife with a ghostwriter). Thank the gods for conscientious authorial endnotes, thank the heavens for O'Rourke's journalistic predilections, thank a goddess for a book that puts aside the preaching and judging and harping for I underlined, scribbled, circled, and otherwise notated my way through this book. It's a pretty good one, probably the best of its kind I've read so far (no doubt for the simple fact that O'Rourke is a journalist and not—and I do mean this with the utmost respect—a real housewife with a ghostwriter). Thank the gods for conscientious authorial endnotes, thank the heavens for O'Rourke's journalistic predilections, thank a goddess for a book that puts aside the preaching and judging and harping for a wee moment in order to just sit with the facts of science and first-hand experience. There *is* a bit of preaching (there always is), but O'Rourke rails against the institution of medicine and its rapacious constituents instead of other sick people—the latter being something that always grinds my gears. Every time I read an illness narrative, I feel like I get one or two steps closer to the book *I* need, and I guess the one I need will inevitably be the one I write. Anyone who reads books like this and DOESN'T make room for the intimate or personal (up to and including the fact that people make their own decisions about their own lives for any number of reasons that are not up for discussion) shouldn't read memoirs. I collect illness narratives like kids collect pet rocks, and this is a shiny find indeed. QUOTES: "Is illness, in any way, a lesson? Illness is a travesty; illness is shit; illness is not redemptive unless it happens to be for a particular ill person, for reasons that are not replicable nor should they be be said to be so... In the dark room where I listened to life happen around me when I was sick, I yielded a part of myself forever. This was an important event, and it is one that keeps on happening in my life. It moves in spiral time around the linear life I sometimes think I live." (267-8) "My illness left an open window in me through which anything can climb, at any time." (271)

  21. 4 out of 5

    Rachael K

    I thought this was a good and honest book. I appreciated that she acknowledged her privilege in seeking out alternative treatments and even being able to go to a regular doctor, but reading about all the money she spent on some insane treatments is frustrating at times, though it’s her experience. Still, it’s refreshing to read a memoir on chronic illness that isn’t just talking about her being sick. Every step of the way she is critical of the government’s failures in funding studies for treatm I thought this was a good and honest book. I appreciated that she acknowledged her privilege in seeking out alternative treatments and even being able to go to a regular doctor, but reading about all the money she spent on some insane treatments is frustrating at times, though it’s her experience. Still, it’s refreshing to read a memoir on chronic illness that isn’t just talking about her being sick. Every step of the way she is critical of the government’s failures in funding studies for treatment, the medical community’s discrimination in gender, race, and sexuality, and general treatment inaccessibility. I definitely understand the frustration when trying to figure out what is wrong and how you are left figuring things out on your own. My family had Lyme disease too and I’ve seen the desperation and trial and error over months and years. The author was so desperate to feel well again that she tried some things that could have harmed her (she admits this). One other thing that frustrated me a bit was her assumed endorsement certain of things that she tried or believed (weird dietary things like kale being harmful?) that sounded like internet message board conjectures and at times verged on orthorexia.

  22. 4 out of 5

    Sarah

    This is the best book that I've read this year, and as someone newly diagnosed with not one but two autoimmune disorders, I was really curious to learn more about them. As you might imagine, there is so much not known about autoimmune disorders, and because of this there is great disagreement in the medical community, especially between traditional (allopathic) doctors and alternative (homeopathic and naturopathic, etc.) medicine. Given the amount of medical misinformation right now -- and that This is the best book that I've read this year, and as someone newly diagnosed with not one but two autoimmune disorders, I was really curious to learn more about them. As you might imagine, there is so much not known about autoimmune disorders, and because of this there is great disagreement in the medical community, especially between traditional (allopathic) doctors and alternative (homeopathic and naturopathic, etc.) medicine. Given the amount of medical misinformation right now -- and that long CV seems to behave similarly to autoimmune disorders -- there's a lot to sort through. Not only does O'Rourke share her personal challenges but she writes such a well-cited book that gave me many more sources to dig into. If you or someone you love has an autoimmune disorder, this is the book for you!

  23. 4 out of 5

    Barbara (The Bibliophage)

    First, Meghan O’Rourke bares her soul about chronic illness in her 2022 book, The Invisible Kingdom: Reimagining Chronic Illness. And second, she analyzes how US medical care fails patients with difficult to diagnose chronic illnesses. This is two parts heartstring-pulling pain and philosophical pondering, combined with two parts anger and frustration. There’s some hopefulness added in the manner of icing on the cake, but it’s quite tentative. All in all, if a chronic illness has touched you or First, Meghan O’Rourke bares her soul about chronic illness in her 2022 book, The Invisible Kingdom: Reimagining Chronic Illness. And second, she analyzes how US medical care fails patients with difficult to diagnose chronic illnesses. This is two parts heartstring-pulling pain and philosophical pondering, combined with two parts anger and frustration. There’s some hopefulness added in the manner of icing on the cake, but it’s quite tentative. All in all, if a chronic illness has touched you or those you love, this book is a must-read. Full review available on my book blog, TheBibliophage.com.

  24. 5 out of 5

    Lois

    A woman's saga of autoimmune disease and the inadequacy of Western or, frankly, Eastern medicine to identify and treat adequately. Moments where I am sure I had the same reaction as everyone in her life to the symptoms that overwhelmed her energy and persona and were so relentless. Fortunate to have a supportive husband and a writing career that could work around down days, for sure. When she discussed wanting to have a child in the midst of not being able to function, it surely stunned me. At t A woman's saga of autoimmune disease and the inadequacy of Western or, frankly, Eastern medicine to identify and treat adequately. Moments where I am sure I had the same reaction as everyone in her life to the symptoms that overwhelmed her energy and persona and were so relentless. Fortunate to have a supportive husband and a writing career that could work around down days, for sure. When she discussed wanting to have a child in the midst of not being able to function, it surely stunned me. At times she chased the kind of unproven treatments that I have certainly read about but couldn't ever see me trying: so desperate was she. Glad she found a doctor or two who listened, but sad that so many experience these without relief or the support she had.

  25. 5 out of 5

    Leah Rachel von Essen

    In The Invisible Kingdom: Reimagining Chronic Illness, Meghan O'Rourke examines the narratives we tell around chronic illness and how they impact treatment, invisibility, and dismissal for patients—particularly women—struggling with autoimmune diseases in particular. She tells too of the years she was dismissed, ignored, and neglected by the healthcare system. As with all such books I've read about this issue, it was simultaneously heartbreaking/infuriating and affirming/healing to see the proble In The Invisible Kingdom: Reimagining Chronic Illness, Meghan O'Rourke examines the narratives we tell around chronic illness and how they impact treatment, invisibility, and dismissal for patients—particularly women—struggling with autoimmune diseases in particular. She tells too of the years she was dismissed, ignored, and neglected by the healthcare system. As with all such books I've read about this issue, it was simultaneously heartbreaking/infuriating and affirming/healing to see the problems with our healthcare system broken down so well. O'Rourke touches on so much about cultural storytelling—from the conceptualization of our autoimmune system as an "army" to the counterproductive attempt of feminism to reclaim 'hysteria' as a result of repression—and about personal storytelling—how doctors/friends can't seem to understand your struggle if you don't have an accompanying diagnosis, how the sympathy drains away if there's no end or resolution to your story. She digs into the difficulty of accepting uncertainty, of adapting to the knowledge that she might never know what's wrong, that it might never come to a satisfying end. O'Rourke superbly breaks down the systemic failure of our healthcare system and its inequalities: because insurance rewards diagnosis and discharge over ongoing care, by paying doctors more for patient quantity and shorter visits, doctors are not only overworked but are discouraged from spending a lot of time with patients. This makes it near impossible to get diagnosis or appropriate care if you're struggling with a chronic or undiagnosed condition, or combination of conditions. Doctors who do insist on integrative care and more time often have to choose to not take insurance, thus becoming unaffordable to most patients let alone marginalized ones. It's a warped and broken system that leaves people struggling with invisible or undiagnosed illnesses at a loss, constantly returning for more visits, begging to be believed or given time. I can't possibly cover everything in my review that O'Rourke manages to cover in her book. It's an excellent book about these issues that surround autoimmune, invisible chronic illnesses and medical dismissal. But I'll touch on one more thing: how unapologetic O'Rourke became about her struggle, and how special that was for me. O'Rourke refuses the narratives that people want to hear—that her illness put her through a hero's journey. "To become chronically ill is not only to have a disease that you have to manage," she writes, "but to have a new story about yourself, a story that many people refuse to hear—because it is deeply unsatisfying, full of fits and starts, anger, resentment, chasms of unruly need. My own illness story has no destination." In this nonfiction tome, O'Rourke is searingly honest and excellently well-researched, and I'm happy and excited to add this one to my steadily growing chronic-illness-themed bookshelf. Content warnings for suicidal ideation, medical dismissal, chronic illness, chronic pain.

  26. 5 out of 5

    Susan

    Wow! Mesmerizing. Ms. O'Rourke's journey through the American Health care system maze was at once horrifying and very familiar. As one that suffered through a mysterious illness the entirety of 2021, it gave me chills - I was never diagnosed with anything and still suffer from bouts of debilitating fatigue and unnamed stomach ailments. I particularly liked her description of Doctors who would get annoyed when she brought her blood work to appointments. I am rooting for her and the diagnosis of L Wow! Mesmerizing. Ms. O'Rourke's journey through the American Health care system maze was at once horrifying and very familiar. As one that suffered through a mysterious illness the entirety of 2021, it gave me chills - I was never diagnosed with anything and still suffer from bouts of debilitating fatigue and unnamed stomach ailments. I particularly liked her description of Doctors who would get annoyed when she brought her blood work to appointments. I am rooting for her and the diagnosis of Lyme's she finally received - what took them so long! I urge you to read this book to get a better understanding of our broken system.

  27. 4 out of 5

    In

    I read a great deal of what is written about chronic illness. I got more from this as to what is taking place in the research and care of patients than Fromm many of the books written by doctors. Thank you, Meghan, for your research and courage to tell it like it is.

  28. 5 out of 5

    Kari

    This book has been so relatable to me and so refreshing to feel understood. It explains so much of what isn’t understood and what breakthroughs have been discovered when it comes to Autoimmune and Chronic Illness. It is the most relevant book I’ve read to date as a person that suffers from both.

  29. 4 out of 5

    Andi

    Everyone needs to read this book. I am still not able to think clearly enough to put my experience into words, but if I could I still couldn’t do it better than this.

  30. 4 out of 5

    Dot

    One of the most beautifully written books, the most eloquent, on the grief, the hope, the limbo of life with chronic illness.

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