The Invisible Kingdom: Reimagining Chronic Illness by Meghan ORourke

The Invisible Kingdom: Reimagining Chronic Illness Reviews

• 
  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, 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.
• 
  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 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.
• 
  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.
• 
  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 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.
• 
  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 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.*
• 
  Traci Thomas

  I really enjoyed this book. I found the journey she went on enraging and devastating. I liked the mix of memoir and research and was most engaged when she was connecting her experiences to the research vs solely memoir. The book does drag on in the middle a bit, which I assume is to show the nature of chronic illness, but it didn’t work for me. I also wished she’d talk a bit about her privilege especially when it comes to her career and whiteness. It’s a strong book with a point of view and not full of pleasantries which I fully appreciated.
• 
  Natalie S.

  Really wanted to like this book, but I did not like this book.
  
  I did appreciate O'Rourke's detailed perspective as a cis woman navigating the complexities of a medical system that is often dismissive of symptoms that are difficult to sort into a diagnosis. Even with all of the resources available to her, she reaches points of desperation, and as a provider in training, I found it helpful to follow her to those moments.
  
  But most of this book consists of sweeping generalizations about chronic illness, medicine, and inaccessible treatments, with virtually no class analysis aside from "[cis] women have it the worst." This is not a book about disability justice; it's a story of how hard one upper-class White woman had to work to feel well, with an occasional "and imagine how hard it must be for poor/POC/trans people" caveat. At one point she speculates that western "developed" nations and White populations have more autoimmune conditions because the lifestyles of the colonizers are more stressful than those of the colonized. Her cavalier attitude as she flies around the world to try various treatments and spend summers in Europe feels out of touch.
  
  I am also irked by her treatment of mental health conditions, which do not seem to be included in her very narrow definition of "chronic illness." I understand the frustration of having one's symptoms dismissed, but there is no complexity or nuance in her outrage over a provider suggesting that she may have depression and anxiety. Some people are disabled by depression and anxiety!
  
  The author's vision for a just future seems to be a hodge-podge of health care commodities: faster diagnoses, easily accessible antibiotics prescriptions, providers who are willing to try any fix available. As a person living with chronic illness, it does not resonate with me, because my vision for a just future is based in community care and dismantling ableism.
• 
  Laura

  I first heard about this book listening to an interview with Meghan O'Rourke on NPR. I was so excited to see the issues of invisible chronic illness getting out in the public discourse that I went out and bought the book the next day (which of course was the purpose of the radio interview). There is a lot in the book to appreciate, but sadly I was disappointed overall.
  
  Let me start with the positive: For those who struggle with chronic invisible illness, illness that is neither easily diagnosed and treated or immediately recognizable by those in our families, social circles, and workplace, O'Rourke's personal story is profoundly validating. For much of the book she shares stories from her own journey that are far too common. We have huge problems in our medical system. Doctors who invalidate experience because lab work says you are "fine." Gender bias in everything from research to taking the pain women experience seriously. Default assumptions that label all that cannot be easily identifiable as "depression and/or anxiety" that must be all in your head because no other answer is obvious. The lived reality of how pain flares or fatigue interrupt the ability to maintain relationships and the loss of reliability in social and work obligations. All of this is very real and I commend O'Rourke for sharing her story and bringing some visibility to these struggles. The book is also very well researched with many helpful sources and footnotes, especially in light of how long COVID research is beginning to better inform out understanding of CFS, autoimmune disease, and dysautonomia to name a few "invisible" but not rare conditions.
  
  So why the disappointment? Memoir can be a difficult genre when centering personal experience while also mixing it with education an activism. O'Rourke is careful throughout the book to acknowledge her privilege as a white middle class cis/het woman, which I appreciate. However, she then displays this privilege in ways that make her story difficult to relate to, and I dare say, even for other white cis/het women like myself. The tone in which she discusses her travel, access to organic food, experimental medicine, and even time off work are often prefaced with "I know this isn't the case for everyone" while at the same time failing to recognize how unique those privileges actually are to the MAJORITY of her audience. So much time is devoted to the details of how much money she spent on snake oil treatments to rid the body of "toxins",specialized food and alternative treatments, and periods of time where she could not work, all which did lead her into debt and some financial crises. I don't want to mitigate the reality of the despair she experienced, and even how her financial ability to go deeper and deeper into that hole proved more a detriment than a helpful at times. But the more I read, the more distance I felt from her experience when it comes to how invisible illness interferes with the ability to hold down any job that provides basic needs (food, housing, security).
  
  Let me be clear- I don't fault O'Rourke for her experiences and I don't think her story is less valuable because of her privilege. Indeed, the reason she can tell her story and raise awareness is due to those same privileges, and I am glad she is out doing so. What I would like to see, however, is a more purposeful shift to decenter the most privileged of experiences and instead us that platform to include and amplify voices that lack that privilege. It is one thing to give lip service to the reality that women of color are far less likely to believed by their physician than white women, it is another thing to go talk to a woman of color, not speak for her, but allow her a hearing and a platform to tell her story as well. It's one thing to say invisible illness can cause financial ruin, it's another thing to talk to a woman who every day has to chose between going to work to keep her rent paid and food on the table and her physical well being. Add the voices of those that lack the access to be heard, and then listen.
  
  This all goes to why I see the issue as a genre problem in mixing memoir with education and activism. I felt similarly when reading Glennon Doyle's educational/activist memoir "Untamed". In it, Doyle gives wonderful mental health advice and deeply personal testimony of her own struggles. She too acknowledges her position as a successful author and speaker, all of which comes with a unique set of risks and fears at times that I can understand and appreciate, but they are not commonplace and they only speak to a narrow set of experiences that are absolutely drenched in privilege. Indeed, the memoir is a genre that by definition centers the experience of the writer's voice, and certainly there is an important place for these stories. I don't expect anyone to apologize for their story or feel shame for what they have, but by no means should it been see as representative of all or even "most."
  
  How much more powerful could these stories be if they were presented alongside a more inclusive array of experiences? One that leverages advantages to spotlight experiences outside their own celebrity? One that not only acknowledges there are so many out there that lack the insolation that privilege provides, but stands back so those stories can be heard? I would love to read that book.
• 
  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 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
• 
  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 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.”
• 
  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 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.
• 
  Jill Elizabeth

  2.5 stars, rounded up to 3. Meghan O'Rourke is a good writer, and I think it's a brave thing to lay one's suffering so bare for public consumption. Please read this review as a rating of the book I read, not an attempt to dismiss her lived experiences and suffering.
  
  This one was just hit-and-miss for me, and ultimately more miss than hit. Many of the author's symptoms and frustrations were very relatable to me as someone with a chronic illness. But the near-constant quoting of poets, writers, and philosophers choked the narrative too much for me to stay engaged.
  
  I also don't think the author truly understands the very great depth and breadth of her privilege as a thin, cishet, rich white woman. She says that she does a few times in the book, but in the next paragraph she's spending $20k a year on kale, turmeric pills, and non-dairy kefir; or going to London for 2 weeks for a fecal transplant; or flying to a beach house for a solo vacation away from her husband and children, just because her husband thought she needed it. It felt kind of icky to read about these things when most of the chronically ill people I know (all of whom live in marginalized bodies) can't afford their medication every month.
  
  "I think often about patients who are less fortunate, whose disease, whatever it may be, has gone unrecognized by our medical system," she writes toward the end. I wish she would have written about them instead of just thinking. She could have painted a more robust and realistic picture of chronic illness in the US. She could have contrasted her experiences with someone who didn't have the same access that she did to medical care as a call to reform. It was just odd to read so many criticisms of the American healthcare system from someone who had the financial means to opt out of it (and chose many times to do so). It feels like a mistake to posit her experiences as anything close to being representative of chronic illness as a whole.
• 
  Elizabeth Boquet

  I read a lot of illness memoirs, and this is not one of the strongest. She tries to incorporate elements of literary journalism (even in the title, which invites us to reimagine chronic illness but doesn’t deliver on this promise). Those elements are not well incorporated—other texts do it much better—and I was left wondering, after years of not having her illness experience believed, whether she still doesn’t trust people, her readers, to simply believe her experience, standing alone, matters. I liked her other memoir (The Long Goodbye) much more.
• 
  Shannon

  A really great memoir about living with chronic and invisible illnesses. The author talks about her own experience with endometriosis plus a host of other autoimmune conditions she has and the struggles she goes through finding a diagnosis. Interspersed throughout her own story she cites facts and studies about chronic illnesses as a whole. Great on audio read by the author and highly recommended!
• 
  Jenni Thompson

  One of my close family members has primary progressive MS, so I was interested in reading this book.
  
  But, I have so much vitriol and true hatred for this author and this book that I couldn’t finish it.
  
  To start, coincidentally, I shared many of the author’s strange symptoms and, to a lesser extent, her difficulty in discovering a diagnosis. I have also had a positive ANA test, debilitating hives, chronic fatigue, pain/numbness and memory problems. Just like the author, I was also diagnosed with Mono multiple times in my life. I also have endometriosis. I’m also anemic. So, I know where she’s coming from.
  
  Now, I am also oddly equipped to call this woman out on her bullshit because I also happened to work at an acupuncture clinic with a man who called himself a “nutritionist” (not the same as a dietician; anyone can call themselves a nutritionist because it is not a real profession) who sold supplements and was a huge enabler of the “chronic lyme” community.
  
  I’m going to be blunt - “chronic” lyme disease is a clear example of heath fraud. It does not exist.
  
  As someone who has watched a loved one struggle with a real auto immune disease, I was profoundly disappointed that this well-reviewed, award nominated book was masquerading as a journalistic endeavor while in reality it is a harmfully subjective memoir of one extremely privilege woman’s spiral into delusion and despair.
  
  The author repeatedly minimizes and belittles the mentally ill. By alluding to diagnoses’ of anxiety as if it was 1) not a real or valid condition 2) as if having an anxiety disorder is an insult and 3) that a doctor suggesting anxiety as a possibility is an indicator that the medical professional is being neglectful or dismissive.
  
  She is immediately resistant to the idea that any of her symptoms could be due to generalized anxiety disorder and compares it to being diagnosed with hysteria.
  
  The author obviously believes that it was more likely that she is suffering from a bullshit disease, that she admits was mainly supported/invented by social media groups and Yahoo.com, than that she could have anxiety.
  
  Now, I’ve dealt with the Lyme community in the flesh. You know what miraculously cured their symptoms? A fucking Valium. I swear on my life.
  
  But do they take it? No.
  
  They’ll spend $800 on supplements (like the author admits to doing) which are not monitored by the FDA. So all of those pills, powders and capsules could be nothing but pulverized cat shit and they just have to take the company’s word for it that it is ashwaghanda.
  
  The author went into debt to buy supplements, get nonsense procedures and ensure her gut flora was thriving, all in search of a diagnosis but, the thing is, she got the diagnosis’ right away. She reports having endometriosis and an autoimmune disease related to her thyroid.
  
  You don’t have to be a fucking doctor to know that endometriosis can cause abdominal pain, infertility and endometriomas (like ovarian cysts, they also rupture) and that thyroid problems can make you tired all the time.
  
  Health fraud is extremely harmful and encouraging further distrust in medicine is shameful. I am appalled that this woman can call herself a journalist and yet be so deluded by the unsubstantiated beliefs of a FB group and choose to attribute more validity to hearsay than evidence.
• 
  Zibby Owens

  This book weaves in my own story of getting mysteriously sick over a decade with a line of reporting on "how did we end up here where so many people have illnesses like autoimmune disease, fibromyalgia, myalgic encephalomyelitis, or chronic fatigue syndrome. It looks at the question of "why in a hyper-diagnostic age is it so hard for patients to get diagnosis and treatment and be heard?"
  
  Much of the book is about the stories we (especially women) tell ourselves about illness, downplaying it or living with it silently. The book dives into the three fundamental problems: the measurement of medicine, the individuality of diseases, and individual differences. This book balances the struggles of living with a chronic illness with the hopefulness of recovery.
  
  To listen to my interview with the author, go to my podcast at:
  
  https://www.momsdonthavetimetoreadboo...
  
• 
  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 suffering.
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  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.
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  Sue Lipton

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

  As a newly minted member of the Chronic Illness Club (don't recommend joining, fwiw), I picked this up as a way to try to understand what I've been going through for the last year. What I found most impactful about this was that even though the author and I do not share the same diagnoses, the experience of being chronically ill and how frustrating a broken medical system that fundamentally does not understand the illness you have is was so well articulated. I think O'Rourke is a wonderful writer with a beautiful ability to zoom in on her personal experience and then zoom out to biology of the immune system and systemic issues in medicine. I found it oddly comforting how she, from the outset, insists that there are not answers to be found in this book, but that she is merely sharing her story and that for most people, being chronically ill doesn't have a neat and tidy ending, by most of the illnesses very nature, they ebb and flow in perpetuity. And while that initially sounds defeating, I don't think that O'Rourke's book and story are without hope. Her tenacity and dedication to her health are admirable and I think that was the biggest take away for me.
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  Signe

  It’s a good book with many valid points regarding the state of medicine and chronic illness today. She is one of the lucky ones (as she admits), and receives treatment that, for all intents and purposes, leaves her with a normal enough life. Even at her worst, she kept working. It’s relatable — but only to a point.
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  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/...
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  Kristina

  Favorite book of 2022 thus far
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  Rachel

  life changing for me tbh
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  Mark

  My biggest takeaway from Meghan O’Rourke’s mesmerizing book, The Invisible Kingdom: Reimagining Chronic Illness, is packed into the last 50-100 pages. The message is that there is enormous room for improvement in the modern doctor-patient relationship, not just in the case of chronic illness, but even in the provision of routine healthcare. And one of the fundamental improvements is listening to patients’ stories about their illness with attention and belief, always remembering that their perception is their reality.
  
  In this context, Ms. O’Rourke becomes an important spokesperson for all those—and the number is not small—who are citizens of “the invisible kingdom.” This is where people suffer, sometimes in stoical silence, sometimes with loud vocal protest, from illnesses that are not only hard to identify, but which frustratingly appear to others as if there is nothing wrong.
  
  After eight-plus years of medical training and knowledge acquisition, doctors are ready to subscribe to the ideal model when providing healthcare: patient gets sick and goes to doctor; doctor identifies illness from vast databases of known illnesses; doctor delivers diagnosis and treatment; patient is cured; everybody is happy! But problems arise when illnesses are not easily identified and tests reveal that “nothing is wrong.” The situation worsens if an illness is chronic: patients then face skepticism, marginalization, and dismissal because medical practitioners are not in the business of saying, “I don’t know what’s wrong, but let’s see what we can find out together.”
  
  Meghan O’Rourke had such a problem that began in 2012 and went on to consume a decade of her life. It was a harrowing period, at times utterly debilitating, not just in terms of physical pain and emotional distress, but also in terms of frustration and hopelessness. The Invisible Kingdom is, therefore, a story of dogged determination in “trying one more course of action,” and also of physical and intellectual stamina in self-education about disease, and the wonderful human immune system—that is, when it works the way it is supposed to.
  
  O’Rourke is quick to point out in her introduction that this is not necessarily a happily-ever-after story in the traditional sense, but that’s because she has to redefine what happiness means in her situation. When she reaches a point where “all better” is not an achievable state, she refocuses her sights on what it would take for her to live with chronic illness. O’Rourke thus synthesizes a vast amount of experience on her journey of great discovery and self-acquired knowledge. Her book will not be a panacea for fellow sufferers, but it will undoubtedly be a tonic of significant relief.
  
  The medical profession will be the other beneficiary of this urgent and timely personal account of one woman’s illness, not just primary care physicians, but specialists, too, in all medical disciplines. Her chapter on “The Doctor-Patient Relationship” alone should be required reading for all those currently in medical school. Chapters on “Futurity” and “Uncertainty,” as well as the entire final part of her book on “Healing” provide guiding frameworks within which to understand chronic illness.
  
  Lastly, The Invisible Kingdom is not a text book: it reads as much like a mystery desperate to be solved as a synthesis of historical and current information on chronic illness. O’Rourke’s prose is unsentimental and brutally honest. She quotes poets and philosophers as much as she does medical professionals, researchers, and scientists. A mere five stars cannot do justice to this fabulous book!
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  Daphne Pellegrino

  3.5 stars—Goodreads, please add the half star option!
  
  i got the most out of this book when it explored the ways western culture imposes metaphor on illness—the psychologization of illness, the quest narrative—and asks individuals to experience and understand and cope with illness largely alone. we absolutely do need a different way forward, and meghan orourke wrote a heavily sourced and researched book in which she spoke with leaders who are building this future.
  
  neg: i tried to absorb as much of the scientific context as possible but honestly zoned out and i dont really think the thesis of the book required all of that anyway.
  
  
• 
  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 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.
  
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  Jessie

  The author suddenly comes down with a mystery illness and finds herself in a reality that she can’t seem to convince doctors of. This is the journey of her sickness, what she tried to do to recover from it, and some of her research on the immune system and autoimmune disease.
  
  I don’t know how to feel.
  
  On one hand, I respect her experience for what it was. There is nothing stronger than someone’s personal testimony about their life and experience with disability, however, O’Rourke never identifies herself as disabled. She shared that she is critical of the American healthcare system, but she writes in a medical model lens. As someone with chronic illness, I get that feelings surrounding it are difficult to navigate. There’s this idea that floats around that chronically ill people are not interested in a social model of disability because they’d rather cooperate with doctors and find a cure. This turning away from disability as an identity and community is so often rooted in ableism, most of the time internalized.
  
  It also was hard to read in that context when she spent so much time and money (which many disabled people do not have the privilege of having) to see integrative specialists for procedures like oxidizing her blood or chelation therapy. She acknowledged that her experience with chronic illness was unusual because of her access to health insurance and wealth, but it didn’t stop me from seeing the possibility that her attachment to her other identities kept her from being comfortable with disability.
  
  But on the other hand, I felt what she had to say in personal aspects of her illness and experience. It was very validating, even if she never acknowledged rare disease, to hear another person speak on the horribleness of seeking a hard-to-get diagnosis. It sucks and I was so relieved to hear her point of view on that was the same as mine. I just wish this book had been a deeper dig into chronic illness and less into integrative medicine.