600bars's review against another edition
3.0
I believe that we are still in the very early stages of understanding the human body. Like when you think about it for all of human history with all of its amazing developments we could not figure out disease and illness for SO long and still haven’t fully cracked the code. We figured out writing systems and complex trade and how to reroute rivers and yet all throughout the building of the pyramids and figuring out how to fly people were still dying from like infected scrapes. We didn’t even know you should wash your hands before doing a mastectomy until the 1800s. That being said, we've done amazing things in the last 200 years. I’m personally more impressed by our medical accomplishments thus far than the fact that we went to the moon. I think medicine is one of humanity’s greatest achievements and I can’t believe that we can do heart transplants and gene editing, but there’s still a long way to go. So as much as we laugh at bloodletting or whatever, I try to always keep in mind that we are still in the early stages of medicine compared to how far we’ve come in other fields.
I especially think we’re at the beginning of understanding the proliferation of autoimmune diseases and “”general malaise” issues like Lyme/Fibromyalgia/ME CFS/hEDS/POTS/Long Covid. These are the “diseases of our time”, no one knows if they’re diseases caused by modernity or if they’re afflictions that have always existed that are informed by our current understanding/language etc. I try to temper my skepticism and my own experiences and theories and just read a lot because I think it’s all part of a discourse that is still in its relatively early stages, and through more and more discussion new understandings and truths will emerge. It’s like how Shell Shock is now understood as PTSD. People suffered from trauma but the effects are going to be contingent on their time period, their social world, and the language used to understand the suffering. I am also open to the possibility that these illnesses are quite literally caused by modern lifestyles.
Invisible Kingdom is a blend of memoir and science writing about the proliferation of chronic illness and the ways in which the American healthcare system is not equipped to care for patients with these illnesses. These illnesses, which primarily affect women, have nebulous and shifting symptoms that flare up and disappear with little pattern. Illnesses like ME/CFS, hEDS, Lyme etc result in fatigue, brain fog, random aches and pains, and other mysterious symptoms. Generally feeling debilitating malaise and frequent bouts of other illnesses due to weakened immunity. The worst part, according to O’Rourke and other chroniclers of chronic illness, is the lack of recognition. This lack of recognition ranges from friends not understanding why you have said no to an invitation for the umpteenth time, to doctors ignoring you, to the medical establishment at large denying that your illness even exists.
There’s also an aspect of misrecognition. Many women are told that it’s all in their heads. O’Rourke is very fixated on a tangible physical cause/trigger, like a tick bite or a viral infection. This fixation on a cause is fascinating to me– I ruminated on this when I read Blackfishing the IUD by Caren Beilin where she claims that the copper IUD triggered RA. Some of this search for a cause is rooted in the idea that if you know the cause you can more easily find a cure, or at least prevent others from experiencing the same issue, which makes sense. But a lot of it has to do with recognition and the idea that a tangible cause will lessen your suffering.
People feel gaslit when they’re told that their illness is “all in their head”, which is usually not to say that the patient is faking it but that the cause is mental rather than physical. I understand this frustration and the desire to find a physical cause, but I do think some of this rhetoric downplays just how severe psychosomatic pain can be. O’Rourke does acknowledge the role of stress on the body etc, but I think that we don’t truly understand the mind-body connection and how much psychic pain can manifest physically. Whenever I have a big change in my life, like whenever I move or start a new job, I instantly get a huge mouthful of canker sores, even though my dental hygiene is the exact same. I just worry sometimes that the (legitimate and understandable) anger at not being listened to still privileges the physical cause over the mental cause, and delegitimizes the very real damage of psychosomatic pain. I’m not sure if I’m even making sense and I don’t want to explain too many personal details of my life but not sure I can get my point across without it.
I’m an alternative medicine skeptic because of my years in the trenches on the forums I saw people doing crazy shit like shitting out their intestinal lining thinking it’s parasites and going through their poop every day with chopsticks. Ultimately I’m sympathetic to them because our medical system has failed them. O’Rourke raises a very important point about what alternative medicine provides that western medicine does not. Western medicine is extremely siloed and specialized, which is great in that we’ve been able to advance extremely far on specific issues. You can do complex spinal cord surgeries that couldn’t be fathomed 100 years ago. But the problem with specialization, coupled with our for-profit medical system, means that if you have an ailment that involves more than one system of the body you’re going to have to spend hours and hours coordinating care between doctors who do not communicate with one another. Not only is it a struggle to get one office to send records to the next, the specialist is likely mostly trained to only look at their own specialty, so if your problem doesn’t fit neatly into their area of specialization you’re out of luck. Additionally, the way our healthcare works you’ll wait months to see a doctor who is extremely stressed out and only has 15 minutes to spend with you, so you have to prioritize what to share and what to ask about, and before you know it the 15 minutes are over. Alternative medicine, on the other hand, tends to be more holistic and sees the body’s systems as interconnected. And when practitioners are less strapped for time, they can spend time on talking to patients. Sometimes the main thing a patient needs is to be seen, heard, and recognized. It all reminds me of when people say “I don’t have time to educate you” so the person goes seeking information and gets the worst possible information.
The holistic view of the body and the importance of general lifestyle habits instead of just cures is unequivocally good, don’t get me wrong. It’s just ripe for abuse and paranoia and snake oil salesman and charlatans and cures that are more damaging than the cause. (I’m by no means saying western medicine is perfect either. I think my job has made me more wary than most because I know the sales history of books that tell you to drink bleach as a miracle cure (they always sell INSTANTLY)). O’Rourke spirals into a descent of borderline orthorexia, colonics, all kinds of weird treatments. She will do anything to feel better, and the regular doctors aren’t listening while the alternative doctors are happy to take her time and money. I guess I don’t blame someone who has the time and resources to do all this, and if Western medicine isn’t working you’ll do anything. But I do think there is a danger in becoming so obsessed with purity and healing that the constant treatments become their own kind of obsession/sickness. To her credit, O’Rourke does mention that one of alternative medicine’s glaring flaws is that much of it rests upon a mythical idea of Purity and the Perfect Human Organism, a return to a time that never existed. Before advancements in hygiene and vaccines and nutrition and medicines etc billions of people simply died.
I recently read Rachel Aviv’s Unsettled Minds, which looked at the ways in which a diagnosis or narrative changes the experience and outcome of people with mental illnesses. O’Rourke is similarly seeking out a narrative to understand what’s happening to her, and the story changes often throughout her journey. At first she thinks it could be from a rash, she thinks it could be hEDS, she thinks it could be Lyme Disease, it could be physical effects of grief. O’Rourke is seeking a diagnosis mostly because she wants to make her pain legible to other people and it’s easier to get people to believe you if you have an official explanation from a professional. The other purpose of knowing the cause is to hopefully reverse the effects, like if you know it is a bacteria you can take a round of antibiotics and if you know it was because of a virus you can take antivirals etc. But sometimes a cause cannot be undone or even discovered. O’Rourke will probably never know if the antibiotic rounds she thinks helped her were actually the “cure”, for all we know it was just time. The difficulty of never knowing is part of the nightmare.
What made Aviv’s book more compelling to me is that she seems aware that her own story of being a type A upper class white woman can be grating, though that does not negate her suffering. I just feel like every chronic illness narrative I read and what I see online is always written by the same kind of person, and it doesn’t seem possible that these illnesses can ONLY affect extremely educated female writers. Yes yes O’Rourke makes sure to acknowledge her privileges that she went to Yale and summers in Europe and flies around the world to get a fecal transplant etc. This is less about O’Rourke specifically and more about the dominant narratives of chronic illness. That’s why I liked Unsettled Minds so much, because Aviv took care to find a wide range of experiences to understand the same topic. Aviv’s personal story is included, but it’s supported by all the profiles of other experiences. Of course, Aviv is a profiler by profession and O’Rourke is not, and O’Rourke has set out to write a memoir while Aviv wanted her story to be one among many.
Again, I think we are still at like level 1 of chronic illness knowledge and I am really curious to know how we will look at these illnesses in 20, 30, wish I could have a time machine to know what people say 100s of years from now. Especially because we have no idea what’s up with Long Covid and probably won’t for a while. I will keep reading whatever comes out in the meantime!
I especially think we’re at the beginning of understanding the proliferation of autoimmune diseases and “”general malaise” issues like Lyme/Fibromyalgia/ME CFS/hEDS/POTS/Long Covid. These are the “diseases of our time”, no one knows if they’re diseases caused by modernity or if they’re afflictions that have always existed that are informed by our current understanding/language etc. I try to temper my skepticism and my own experiences and theories and just read a lot because I think it’s all part of a discourse that is still in its relatively early stages, and through more and more discussion new understandings and truths will emerge. It’s like how Shell Shock is now understood as PTSD. People suffered from trauma but the effects are going to be contingent on their time period, their social world, and the language used to understand the suffering. I am also open to the possibility that these illnesses are quite literally caused by modern lifestyles.
Invisible Kingdom is a blend of memoir and science writing about the proliferation of chronic illness and the ways in which the American healthcare system is not equipped to care for patients with these illnesses. These illnesses, which primarily affect women, have nebulous and shifting symptoms that flare up and disappear with little pattern. Illnesses like ME/CFS, hEDS, Lyme etc result in fatigue, brain fog, random aches and pains, and other mysterious symptoms. Generally feeling debilitating malaise and frequent bouts of other illnesses due to weakened immunity. The worst part, according to O’Rourke and other chroniclers of chronic illness, is the lack of recognition. This lack of recognition ranges from friends not understanding why you have said no to an invitation for the umpteenth time, to doctors ignoring you, to the medical establishment at large denying that your illness even exists.
There’s also an aspect of misrecognition. Many women are told that it’s all in their heads. O’Rourke is very fixated on a tangible physical cause/trigger, like a tick bite or a viral infection. This fixation on a cause is fascinating to me– I ruminated on this when I read Blackfishing the IUD by Caren Beilin where she claims that the copper IUD triggered RA. Some of this search for a cause is rooted in the idea that if you know the cause you can more easily find a cure, or at least prevent others from experiencing the same issue, which makes sense. But a lot of it has to do with recognition and the idea that a tangible cause will lessen your suffering.
People feel gaslit when they’re told that their illness is “all in their head”, which is usually not to say that the patient is faking it but that the cause is mental rather than physical. I understand this frustration and the desire to find a physical cause, but I do think some of this rhetoric downplays just how severe psychosomatic pain can be. O’Rourke does acknowledge the role of stress on the body etc, but I think that we don’t truly understand the mind-body connection and how much psychic pain can manifest physically. Whenever I have a big change in my life, like whenever I move or start a new job, I instantly get a huge mouthful of canker sores, even though my dental hygiene is the exact same. I just worry sometimes that the (legitimate and understandable) anger at not being listened to still privileges the physical cause over the mental cause, and delegitimizes the very real damage of psychosomatic pain. I’m not sure if I’m even making sense and I don’t want to explain too many personal details of my life but not sure I can get my point across without it.
I’m an alternative medicine skeptic because of my years in the trenches on the forums I saw people doing crazy shit like shitting out their intestinal lining thinking it’s parasites and going through their poop every day with chopsticks. Ultimately I’m sympathetic to them because our medical system has failed them. O’Rourke raises a very important point about what alternative medicine provides that western medicine does not. Western medicine is extremely siloed and specialized, which is great in that we’ve been able to advance extremely far on specific issues. You can do complex spinal cord surgeries that couldn’t be fathomed 100 years ago. But the problem with specialization, coupled with our for-profit medical system, means that if you have an ailment that involves more than one system of the body you’re going to have to spend hours and hours coordinating care between doctors who do not communicate with one another. Not only is it a struggle to get one office to send records to the next, the specialist is likely mostly trained to only look at their own specialty, so if your problem doesn’t fit neatly into their area of specialization you’re out of luck. Additionally, the way our healthcare works you’ll wait months to see a doctor who is extremely stressed out and only has 15 minutes to spend with you, so you have to prioritize what to share and what to ask about, and before you know it the 15 minutes are over. Alternative medicine, on the other hand, tends to be more holistic and sees the body’s systems as interconnected. And when practitioners are less strapped for time, they can spend time on talking to patients. Sometimes the main thing a patient needs is to be seen, heard, and recognized. It all reminds me of when people say “I don’t have time to educate you” so the person goes seeking information and gets the worst possible information.
The holistic view of the body and the importance of general lifestyle habits instead of just cures is unequivocally good, don’t get me wrong. It’s just ripe for abuse and paranoia and snake oil salesman and charlatans and cures that are more damaging than the cause. (I’m by no means saying western medicine is perfect either. I think my job has made me more wary than most because I know the sales history of books that tell you to drink bleach as a miracle cure (they always sell INSTANTLY)). O’Rourke spirals into a descent of borderline orthorexia, colonics, all kinds of weird treatments. She will do anything to feel better, and the regular doctors aren’t listening while the alternative doctors are happy to take her time and money. I guess I don’t blame someone who has the time and resources to do all this, and if Western medicine isn’t working you’ll do anything. But I do think there is a danger in becoming so obsessed with purity and healing that the constant treatments become their own kind of obsession/sickness. To her credit, O’Rourke does mention that one of alternative medicine’s glaring flaws is that much of it rests upon a mythical idea of Purity and the Perfect Human Organism, a return to a time that never existed. Before advancements in hygiene and vaccines and nutrition and medicines etc billions of people simply died.
I recently read Rachel Aviv’s Unsettled Minds, which looked at the ways in which a diagnosis or narrative changes the experience and outcome of people with mental illnesses. O’Rourke is similarly seeking out a narrative to understand what’s happening to her, and the story changes often throughout her journey. At first she thinks it could be from a rash, she thinks it could be hEDS, she thinks it could be Lyme Disease, it could be physical effects of grief. O’Rourke is seeking a diagnosis mostly because she wants to make her pain legible to other people and it’s easier to get people to believe you if you have an official explanation from a professional. The other purpose of knowing the cause is to hopefully reverse the effects, like if you know it is a bacteria you can take a round of antibiotics and if you know it was because of a virus you can take antivirals etc. But sometimes a cause cannot be undone or even discovered. O’Rourke will probably never know if the antibiotic rounds she thinks helped her were actually the “cure”, for all we know it was just time. The difficulty of never knowing is part of the nightmare.
What made Aviv’s book more compelling to me is that she seems aware that her own story of being a type A upper class white woman can be grating, though that does not negate her suffering. I just feel like every chronic illness narrative I read and what I see online is always written by the same kind of person, and it doesn’t seem possible that these illnesses can ONLY affect extremely educated female writers. Yes yes O’Rourke makes sure to acknowledge her privileges that she went to Yale and summers in Europe and flies around the world to get a fecal transplant etc. This is less about O’Rourke specifically and more about the dominant narratives of chronic illness. That’s why I liked Unsettled Minds so much, because Aviv took care to find a wide range of experiences to understand the same topic. Aviv’s personal story is included, but it’s supported by all the profiles of other experiences. Of course, Aviv is a profiler by profession and O’Rourke is not, and O’Rourke has set out to write a memoir while Aviv wanted her story to be one among many.
Again, I think we are still at like level 1 of chronic illness knowledge and I am really curious to know how we will look at these illnesses in 20, 30, wish I could have a time machine to know what people say 100s of years from now. Especially because we have no idea what’s up with Long Covid and probably won’t for a while. I will keep reading whatever comes out in the meantime!
thechronicknitter's review
emotional
hopeful
informative
reflective
medium-paced
4.5
As someone with a very similar chronic illness experience this felt powerful and made me feel seen. It also gave me hope that maybe my health will be restored as much as hers.
ekinnaman's review against another edition
5.0
This was a perfect book on chronic illness. I really appreciated the balanced perspective on everything, because the issue is complicated. The author tries to answer questions such as why are rates of chronic illness increasing, especially in first world countries? Why is it so difficult for doctors and society at large to accept chronic illness? To what extent are these illnesses psychological vs genetic vs driven by environment? There aren’t any easy answers. My favorite part was her arguments about common misconceptions/cultural narratives about chronic illness: that illness is caused by some sort of moral or physical failure of an individual (she argues that it’s a failure of society at large) and that suffering is worth it for the life lessons (she argues that she wouldn’t wish this on herself or anyone else, even if she has learned and grown). Really, this book is a call for a more empathetic society that is willing to accept illness/disability, even when there are no simple answers or even “happy endings”.
monkeyhippy's review against another edition
5.0
I cannot recommend this book highly enough. Deeply researched, gorgeously written, and very compelling. Chronic illness really is the next frontier of medical understanding, if we choose to put our hearts and resources into understanding it.