The Ladys Handbook for Her Mysterious Illness by Sarah Ramey

The Ladys Handbook for Her Mysterious Illness Reviews

• 
  Elizabeth

  I just read all 411 pages of this excruciating book and my only motivation for finishing it was to tell people how awful it is with more authority. Here's my rant. I can't imagine how this got published, honestly. In fact, it is so bad that I have written my first review on Goodreads since it was acquired by Amazon, just in case any of my friends were thinking of reading it.
  
  I love sickness memoirs. At their best, they help me put what is happening to my body in a political, philosophical, and spiritual context that moves me beyond self-pity or solipsism. At worst, they are self-indulgent tripe.
  
  This is worse than the worst. Ramey has been through some horrific stuff. But she is also the incredibly privileged and wealthy daughter of two doctors. I lost track of how many times she moved across the country on a whim, or how many times her family flew across the country to move in with her and serve her needs. She completely fails to recognize her own privilege, though, and subjects the read to pages and pages about her budding music career (did she mention the name of her band? no? here it is one more time...did she mention she is on youtube and instagram? no? here you go). She has no concept of the fact that as bad as her medical experience has been, she has also been able to spend tens of thousands of dollars on treatments and tests, and that not everyone has that kind of access. Not once does she advocate for Medicare for All or an affordable healthcare system, though she doesn't hesitate to recommend lobbying for other issues she considers important.
  
  She is also completely unaware of her racial privilege. In what is meant to be the emotional climax of the book (or one of them...there are a lot), she describes a horrific procedure in which a doctor biopsies her vagina without general anesthesia. The SHEER CAUCASITY of this woman in failing to acknowledge that a) people of color are treated far far worse by the medical system every day and b) what she described was literally common practice on nonconsenting Black woman and the foundation of modern gynecology.
  
  Did I mention her internalized ableism? Or the part where she describes how she basically called together a care circle without ever acknowledging disability activism/DJ? Or how she never ever describes herself as having a disability?
  
  There's also the transphobia. This is probably what takes the book from awful to just...bizarre. There's about a hundred pages where she takes this weird detour into bad 70s white feminism theories of the Divine Feminine, and how men and women are biologically and emotionally different, and the problem with modern medicine is that it dismisses the Feminine in all of us. Oh and by the way, she says, all other forms of oppression - like racism and classism and whatever else you want to throw in there - stem from the misogyny of dismissing the Feminine. SHE ACTUALLY SAYS THAT RACISM IS REALLY JUST MISOGYNY.
  
  I don't understand how something like this gets published. I doubt anyone will read this random review but I needed to get it out. My god, it's bad.
• 
  Maggie Stiefvater

  This book was recommended to me a long time ago and, today, tidying up my shelves, I rediscovered and read it.
  
  This memoir contains a story similar to mine (and my family's) in many ways. It's also a different way to tell the story I told (heavily nestled in metaphor) in the Dreamer Trilogy.
  
  I think those still in the early stages of the journey would find it very comforting to read.
• 
  Lake

  My feelings about this book swung wildly from incredible to wtf real quick. As a memoir of someone with chronic illness Part I of this book is a great impactful read. I empathise with Sarah Ramey as her health worsens, and she deals with a terrible capitalist healthcare system. The medical trauma in her account is horrifying, and yet believable. I can picture several people I've worked with who would fit right in as the awful unprofessional biased doctors she had the misery of dealing with. I was cautiously optimistic about this book till about the 30% mark.
  
  However. It should be noted that Sarah Ramey does not have a background in medicine or science writing, and that becomes very clear soon enough. She writes airily about the 'thousands of research papers' into one treatment technique, or 'decades of research' into another without citing a single source. I tried looking these up myself and got no credible papers whose results I could trust. Research and academia can be a maze for anyone untrained in deciphering it. Just because a study is conducted, and a paper is published does not automatically make its findings reliable. A data set can be manipulated in any number of ways to produce pretty much any result you want. I won't even get started on predatory journals that will publish just about anything. Science writers and communicators are highly qualified people who sift through research, verify the reliability, and translate the results correctly into lay language for the public to read. It is a highly specialised full time job. Sarah Ramey is not a science writer.
  
  I don't doubt she did a lot of reading, but her claims about functional medicine, generally thought of as a pseudoscientific scam in the medical community, don't seem to be backed up by anything substantial. The basic principles of what america calls Functional Medicine - treating the body as a whole, long term behavioural interventions etc - the rest of the world calls...Medicine. The parts of functional medicine where they advocate 'ridding yourself of toxins' by buying their products and services is called medical fraud. Psychological well being, gut microbiome, and neurology are very much a part of traditional medicine.
  Are there gaps in modern allopathic medicine, given its founding on misogyny, racism, imperialism, and bigotry? Yes, absolutely. Is the answer badly researched pseudoscience? No. I say this as a brown non western woman with a rare autoimmune disease and a degree in neuroscience.
  
  Further a good 200-300 pages in the middle where she drifts off into a strange gender essentialist spiel about 'the female brain' and 'the feminine mystique' and the 'descent into Hades' is frankly nonsense and borders on TERF territory. It also fails to address transgender, intersex, and gender non conforming people, and thus is a complete waste of time. I cannot imagine why this wasn't edited out. This book could have been half the size and twice as readable. It's also really irritating that for all her research she has yet to stumble onto disability justice communities who have long been advocating for patient rights, mutual aid and community support, and more funding for research into chronic diseases. Many of us having been doing this work long before she took it upon herself to reinvent the wheel. It's worth noting that Sarah Ramey comes from a very wealthy sheltered upper class white family in america, considering the ease with which she repeatedly moves across the country from one doctor to another alternative healer to another doctor, and retreats to her family cabin here and other home there, and has no concept of working class non white disabled people.
  
  She also emphasises the impacts of stress on health constantly but does not examine systemic disparities like race, class, caste, region, and sexuality among others, which are important influential factors. She waxes eloquent on the misogyny in gynaecology without once mentioning how it was founded on the illtreatment of black women. There are multiple repetitive chapters about how the modern american lifestyle and diet greatly precipitate the development of autoimmune disease, while never considering that a significant population in the global south get the same diseases too. She constantly makes grand sweeping statements without contextualising them, which is honestly dangerous and irresponsible, because I can already tell many people with no medical background are going to be using this personal account of one individual's experiences as a scientific text.
  
  

  "This may be one reason you don’t see WOMIs virtually at all in the developing world."

  
  This is completely false. And I'm now really fucking pissed. People in the global south, especially those marginalised because of gender, caste, class etc, already face immense difficulty even accessing medical care, and having their illnesses recognised, diagnosed and treated. So thanks for erasing us completely. If this is the kind of research she did for this book, I'm not surprised it's full of nonsense.
  
  (Also I don't understand how she advocates Just Eating Real Food and in the same breath says never eat grains and beans. What does a meal of 'Real Food' even look like without grains and beans? What do words mean?)
  
  I almost abandoned this several times. I will not be recommending it to anyone.
• 
  Rennie

  I don't want to get too hyperbolic here but this is life-changing. As a woman with a "mysterious" illness it'll make you feel seen and heard but also I hope it'll be eye-opening for others regardless. It's sometimes hard to read when it feels like parts of it are telling your own life and experience back to you, but it is reaffirming and she frames those experiences so beautifully and meaningfully. I feel grateful that she even put so much of this experience into words. And it'll make you frustrated, and really, really angry, but also hopeful. Realistic, I think, but hopeful.
• 
  thefourthvine

  This book is a MESS.
  
  I picked it up because I have a lot of friends who are in the depths of a mysterious illness -- friends who are in pain, who are fatigued, who are multiply allergic, who have chronic digestive problems, who are struggling to get through each and every day. I assumed it would be a handbook FOR THE AUTHOR'S mysterious illness, and that it might provide some insight into ways I could support my friends.
  
  For the first 40% or so of the book, that's pretty much what it is. Sarah Ramey defines her terms and talks about medical research she did and people she talked to, but mostly she describes her own illness, her own descent from "normal college student" to "unable to get out of bed and in constant agony ME/CFS person." And while her narrative voice is, let's say, extremely distinctive, it was a compelling story and I read it quickly.
  
  But then the book takes a left turn into Senior Thesis Land. Seriously. There's a huge chunk in the middle of the book -- about 20% of it overall -- in which Ramey talks about how she found meaning in her illness. And I do get that that is important to do! Meaning is what keeps us going, and if being sick is your 24/7 state of being, you want to find meaning in that. And honestly, I don't care how you find meaning for your life or the adverse events of it, as long as you're not hurting others. But Ramey decides that her meaning is really for all of us. (All women, anyway.) I did not enjoy that. And I just generally did not enjoy having a gigantic, mediocre senior thesis plopped down in the middle of a memoir. I deeply wanted to edit it, a lot. Like, that material could all have been covered in about two pages.
  
  Once that was over, I hoped the book might get back to the narrative, the story, the memoir. And it does, briefly, for a few more jaw-clenchingly awful stories of medical malpractice. And then Ramey describes herself as hitting rock bottom and changing the way she did things -- and she skips all of the recovery. She just says, hey, I'm not cured, but my life is much better! Now let's talk about what YOU should do. In other words, she wrote what she herself would describe as a descent into hell memoir, chronicling each agonizing step down -- and then skipped the part where she climbs out in favor of issuing a prescription for all of her readers and for society itself. This is not a particularly balanced or compelling way to present a story.
  
  But I was willing to give it a chance. Society does need to change! A lot of people are either sick or know someone who is! Maybe that prescription is good?
  
  Before I answer that question, I need to talk about who Sarah Ramey is, because it's really, really important once she stops talking about herself and starts talking about every sick woman alive.
  
  Ramey is a person of tremendous privilege. She is rich, straight, white, thin, attractive. Three of her four parents are doctors. She was educated at excellent, expensive private schools. She got sick right before her adult life started, and as a result has managed, as far as I can tell from her story, to work three jobs: communications person in Barack Obama's first presidential campaign (if you're wondering how someone with no experience got that job -- well, see above about privilege), indie musician, and author of this book. Otherwise, she spent close to two decades with being sick as her full-time job, including several years unable to move, with her doctor mother as her full-time, round-the-clock caregiver. (And I am not judging. That IS a full-time job.) In that time, Ramey was able to move across country multiple times, visit any doctor or clinic she chose, pursue every whisper of a cure no matter how dubious or expensive, and have a nearly endless number of tests and treatments. I am not saying that needing those things was a privilege. But being able to *have* them, that very much was. She also, during this entire time, including the time when she was bedbound, was always: sheltered, well-fed, safe, and kept as comfortable as possible, with appropriate, dedicated, kind caregivers as needed.
  
  What I am saying here is that Ramey is a unicorn who doesn't know she's a unicorn. A unicorn with golden shoes, at that.
  
  So back to her prescription, which she emphasizes is absolutely mandatory for every sick woman who wants to improve. It is: Change your diet. (She doesn't get into specific details, but the changes she says are necessary require not just money, but the ability to shop and cook extensively; there can be no takeout, no packaged foods, none of that.) Eliminate stressors, both physical and mental, in your life -- fix your house, clean your house, change or quit your job, meditate, exercise, etc. (Obviously, these things all take time and money.) Build a caring circle of friends, a community, a Team You. (Actually possible. For some people.) Get a team of doctors and therapists who will believe you and work on your case, no matter how long it takes or how much you have to keep trying. (These doctors will not be covered by anyone's insurance, assuming people even have insurance.) Take medications and supplements that help you. (These also will not be covered by insurance.) Become an ecologist, of your body, your home, and your world. Oh, and while you're at it, fix the world.
  
  I wasn't kidding when I said I had a lot of friends with mystery illnesses. I thought about them while I was reading this section. Not one of them has the ability to do these things. Some of them are pretty well off and privileged, some are not, but in every case, there are insurmountable obstacles to doing at least some of what Ramey has outlined as necessary. (Also, since they are all pretty well expert in their own cases, they're already doing the parts of this that they can, as these are pretty obvious solutions to anyone who has spent some time mysteriously sick.)
  
  Ramey has written a prescription for everyone that only she can follow. What her book is actually going to communicate to most people is: you are not privileged enough to get better.
  
  And to a certain extent, she acknowledges that. Like, she does say that if you are on SNAP, there's no way to eat a diet that will help you heal. And -- there you go, that's just how it is. Sorry, poor person! Maybe eventually all those women who are working on fixing the world alongside their soul-sucking, exhausting, life-draining mysterious illnesses will fix that problem, and in the meantime, welp! You stay sick. But she also seems to think that's an edge case, even though poverty is, well, pretty closely linked to these kinds of chronic illnesses.
  
  She does acknowledge that she was in the best possible position a woman with a mysterious illness can be in, even if she doesn't quite understand the depths of that truth. And ... she leaves it at that. What is she doing personally to fix the lives of every other sick woman? Writing this book. That's it. She made the roadmap! Now it's on YOU if you are too brown, too queer, too fat, too busy, too otherwise disabled, too poor, too (ha) sick. She is going to get on with leading her much-improved life -- which, good for her, I'm happy for her -- and feel good about helping, even though 99.9% of the people she's writing for can't be helped by this.
  
  And that's what I genuinely hold against her. She makes other errors, too, and they're terrible -- saying that there are no mysteriously ill women in poorer countries, for example. (We also will not speak about the ableism that pervades every word of this book, except to say that it is there. I see you, Sarah Ramey.) But the part that kills me is that she wrote a whole third of a book intended to help seriously ill women who are being mistreated and ignored by the medical world, and then she did to her readers exactly what doctors have done to them: she abandoned them. She said, "There's treatment, there's hope, but it's not for you." (Also, she forced them to read a senior thesis first, which is definitely insult to injury.)
  
  There are people who should read this book. Doctors, if they want to know more about the lives of some of their most challenging patients, and especially the kinds of experiences these people are likely to have had. Women who are rich, white, straight, thin, attractive, well-educated, and mysteriously ill, because this genuinely might help them.
  
  But I won't and cannot recommend this to a single one of my sick friends. They've been through enough.
  
  (Addendum: I admit my eyes glazed over a lot during the senior thesis mythology portion. I just discovered I missed the part where Ramey says being a person of color or being trans is the same thing as being female. Noticed that when I went back to check something for a friend. So, uh. Further warning!)
• 
  Nenia ✨ I yeet my books back and forth ✨ Campbell

  Woman: I have chronic pain
  
  Sexist doctor: *kingly flourish* I diagnose you with... HYSTERIA
  
  Woman:
  
  S.D.:
  
  Woman:
  
  S.D.:
  
  Woman:
  
  S.D.: I'll refer you to a proctologist to have that uterus checked out.
  
  Woman: What--
  
  S.D.: Try not to cry your womanly tears all over the floor on the way out.
• 
  Tilly

  5 stars
  
  "We are women with mysterious illnesses, and we are everywhere".
  
  As a person that has multiple chronic illnesses, I knew I had to read this book. When I was 17, I went to my GP and gave her a list of my symptoms and asked her if I could have endometriosis. She said I was too young but sent me for more testing. Over the next 7 years I was passed round many different specialists and doctors, at one point being told I had a brain tumour...only for a month later being told that I actually didn't. I was told my illness was all in my head. That I was making up the pain. That I was an attention seeker or depressed. After 7 years I moved for work and saw a new GP who sent me straight away to see a new gynaecologist who after a laparoscopy, diagnosed me with endometriosis. A whole 7 years after I asked if I could have that exact disease but got shot down, told I was crazy and left utterly demoralised and upset.
  I am not the odd one out. The majority of women with invisible or mysterious illnesses will go through the exact same treatment.
  This book is an incredible story about how Sarah Ramey was treated by the medical community in the USA and how her very real illnesses were ignored or that they were psychological.
  This book made me cry, feel utterly shocked and yet also didnt surprise me. Sarah's illnesses and her medical journey is shocking.
  She writes so incredibly well about her experiences but also about the medical community, ways to help yourself and why women receive such poor medical treatment.
  This book looks into more "mysterious" invisible illnesses such as lyme, fibromyalgia, lupus, candida and CFS/ME. If you suffer from any of these illnesses or any other invisible illnesses, I urge you to read this book.
  I wish I could put this book into the hands of every healthcare professional. Every woman that has been made to feel crazy due to her illness.
  
  I know it will make women with illness feel less alone and I hope it will make them stand up and fight for their health when those that should be helping them let them down.
  
  This is a brilliant book and I cannot recommend it enough. Thank you Sarah for supporting us with your writing.
  
  Please note that I was gifted this book in exchange for an honest review.
• 
  Elizabeth

  This book sounded so fascinating but I got so distracted by
  
  The writing style
  
  Which was there for a reason
  
  I'm sure
  
  But I found it so odd
  
  As I did the repetition
  
  And repetition
  
  And repetition
  
  Are women routinely ignored by doctors? Absolutely. Should doctors be given more education and training to listen? To empathize? To think about the body as a whole? Yes. Absolutely yes.
  
  This book.
  
  Means well.
  
  But is not as engaging as it thinks it is.
• 
  Laura Sackton

  I have so many mixed feelings about this one. On the one hand, this is an incredibly powerful memoir about a woman who struggled for a decade to get doctors to take her illness seriously. She recounts the unbelievable trauma doctors caused her, over and over, as they treated her as if she was simply making up the severe symptoms of her chronic illness. It's horrifying and harrowing and a scathing and necessary critique of our broken medical system, and especially the way it fails women.
  
  But her analysis of the ways that race and class complicate how women receive or don't receive medical care is severely lacking. She pays lip service to it, but she doesn't really go into who gets sick, who gets treatment, who has the ability to seek out treatment (even if it's shitty), etc. And there's some biological essentialism going on that I found troubling. There's a whole section where she goes on and on about masculine and feminine energy and how men and women are different. Which, okay, fine. But she excludes trans and nonbinary identities from the conversation. She continually equates "women's bodies" with "bodies that are viewed as biologically female by society". (Biologically female, ugh.) She does mention trans people, but she never expands her analysis to recognize the fact that many women have bodies that are nothing like hers, and that this impacts their relationships with illness, medical care, and treatment.
  
  I honestly would not have faulted her for this if this was just a memoir. She's writing from her own experience, and her story is powerful. The book is engaging and eye-opening and it's a story that we all need to hear. But she doesn't stick to her own experience. She's writing broadly about people with mysterious illnesses. She's writing about the state of health care in this country and about how gender intersects with illness and health and treatment. This book is not just her own story; it's also full of analysis. And because of that, the things she leaves out, her refusal to engage critically with race, class, and trans identities is a glaring hole.
• 
  Jaime

  In February, before the COVID-19 pandemic really hit the United States, I had a kidney infection. I had never had one before. For four days I suffered through intense, often stabbing pains. I did all my usual things: extra tea, extra sleep, curling into the fetal position and breathing when I could. Until I realized I had a fever, it didn't occur to me that I might need to seek medical attention.
  
  You see, for me, this type of pain is normal. Wrapping around myself, maybe a few Advils, and trying to get through it while still going about my business (work, etc), is something that I have seemingly had to accept, because I'm told that I have "painful periods" and "functional dyspepia" and there isn't much you can do for either. So when I was directed by an advice line to go to the Emergency Room immediately, I was pretty surprised. Once there, the nurses and doctors swirled around me, and put in an IV, and looked VERY confused when I said I didn't need morphine and I kept saying, "well the IV ibuprofen seems nice, it all seems less painful." Half out of it, it was only later that I could look back on those exchanges with slight bemusement; at the time, I didn't understand their concern.
  
  ...I don't know that any of my friends who read this would know that I experience a level of pain regularly that rivals the clinically-recognized-one-of-the-most-painful-things-to-present-with-kidney-infection, so much so that I would be surprised and shrug it off when someone offers high grade morphine. Maybe a few people, I think. Overall, I allude to my health struggles sometimes, but I have historically, generally downplayed it. When you have those strange or amorphous diagnoses, most people secretly think you're insane or dismiss you as out of control or overdramatic and you yourself can start to think you're crazy. But throughout the years of my experiencing this, I haven't been able to shake this feeling that what's going on is something deeper, something that our culture doesn't understand about healing, something that our culture has a problem with because women are involved, some sort of canary in the coal mine thing that's happening with all of us who have weird things going on that aren't really recognized. It's part of the reason why I'm a yoga teacher, a yoga therapist, someone who has a certificate in positive psychology, and someone pursuing a certificate in health and well being coaching. I keep looking.
  
  So here is the point: Sarah Ramey wrote the book. She wrote the thing that explains the past 15 years of my life. She wrote the thing that explains all the years of so many of our lives. And she has a section in here that goes deep into the Root Reasons, the need for the feminine. She is never simple in her analysis. She is nuanced, which is my favorite thing.
  
  Read it. And be sure to give it to anyone who has difficult and/or unexplained health issues. Believe me when I say -- that even and perhaps especially when they hit on sections where tears will run down their face, sections that let them feel a rage that has been suppressed -- it will be such a kind, kind, KIND thing for you to share.
  
  P.S. I should also offer -- I shared my own story here because I view it as germane to the review, but I don't share it for advice or pity or anything like that. Just because -- after reading this book -- I don't feel a need to NOT talk about it to avoid causing discomfort. That's another thing I owe to this text.
• 
  Bethany

  As someone who lives with chronic pain that has a specific reason, I can only imagine what chronic pain without a diagnosis is like. Sarah Ramey tells the whole truth here, without flinching, and calls every person to really listen to her story. It isn't for the faint of heart but, then again, I suppose that is the point: that not a one of us is faint of heart and we would do well to pay attention to each other. An important, essential book.
  
  *I received a digital ARC from the publisher via NetGalley in exchange for an honest review.*
• 
  Kacey

  I’ve been meaning to write this for a while, I stopped this book a LONG time ago and have had many feelings since. I didn’t finish it, because quite frankly it was a gendered, ableist mess, and I started getting viscerally angry while reading. I had so much faith in the first half, when she was explaining her story, because I resonated a lot. But what’s sad is her “research” and bottom line all comes down the same shit we hear from doctors all the time, that the best way to health is exercise, healthy eating and a positive attitude.
  
  I’m so fucking sick of it. I thought this was going to be a memoir about our struggles, and challenges, about how to survive in an ableist society. Instead it’s the same ableist garbage I hear from everyone all the time and akin to “have you tried essential oils?” “What about yoga?” This is not helpful. To anyone. A good portion of people with chronic illness have real, debilitating disorders that cannot be “cured” or fixed by a diet. In fact some chronic illnesses require “unhealthy” diets just to survive!
  
  I don’t even want to get into how gendered and transphobic this mess was either. Like the author just forgot trans and non-binary people exist. She kept calling it the “divine feminine” and other weird gendered terms that are completely unnecessary AND outdated in the medical field. Started going on a whole spiel about the “female brain” and I almost threw my phone in the dumpster.
  
  How hard is inclusion? Especially in medical care? 1 in 1000 people are intersex. Not even getting into the amount of trans and non-binary people that exist, that’s MILLIONS of people who don’t match your gendered world view about biology and medicine. You just dismissed and ignored a large fraction of the chronic illness community with that language as if the trans community isn’t dismissed enough in the medical industry AS IS. What a hot mess. I stopped reading almost instantly when the weird “divine feminine” shit came up. Over half of my friends with EDS are trans and/or non-binary. This book would have made them feel miserable about themselves.
  
  And lastly I’d like to acknowledge how absolutely fucking privileged this white lady is, and why I am probably done reading stories like this from white women. Both of her parents are doctors, she’s flown around the country, lived in various places that have incredible resources (SOLELY for medical care), clearly has a ton of family money and doesn’t need to work, is able to see the best specialists, and loads more. Not once does she recognize the immense privilege she has. Not once does she recognize that literally none of us have the resources and accessibility she was given. It made me sick. And if you’re going to bring up misogyny in the medical field and leave out racism (or even worse as I’ve read in other reviews, she apparently says misogyny IS racism or is the cause of racism - some wild shit like that), you’re a shit advocate and I don’t even feel bad saying it. Not once did she call herself disabled either, as if it’s a dirty label, as if she WASNT disabled for years.
  
  This whole book (as much as I read anyway) pissed me the fuck off. A bunch of transphobic ableist shite. I literally can’t recommend this to anyone. It’s trash. Please don’t read it.
• 
  Iz

  Hard to rate - I want everyone to read this book, despite its flaws. I highly, highly recommend it for anyone who's been to a doctor and was told you're fine, it's all in your head, it's just stress, only for the condition to worsen overtime until they prescribe antidepressants, you difficult patient, you.
  
  This is especially for people (and friends and family of people) who've had 3 or more of the following: IBS/IBD, chronic fatigue, hypothyroid, fibromyalgia, post-treatment Lyme disease, hormonal imbalances, eczema and other skin conditions, heart palpitation and abnormal rhythm, joint and muscle pains, chemical sensitivity, recurring UTIs/yeast infections, and autoimmune conditions.
  
  This book is incredibly eye-opening and potentially life-changing. Ramey has been through a LOT as a patient, and halfway into the book I was screaming internally in recognition of what she was experiencing.
  
  Here's the summary - They're definitely not all the same condition, but there's a very strong and compelling case for the fact that they are all connected. The commonality is that they happen in people who are sensitive to stimuli and their environment. Yes there is a universal theory, but that's not as important as the fact that patients need to be treated as a whole, that their entire history needs to be considered, and that you as a patient have a right to be heard - you know your body more than anyone. And guess what. Sleep, exercise, and your gut microbiome are everything, folks.
  
  ...
  
  Now for the problems.
  
  1 - I would have rated this book 5/5 if it wasn't for the femininity/masculinity garbage. I recommend skipping chapters 19-21 altogether, and ignoring everything she says about this being a woman's condition. Of course these issues happen more to women, and of course that's worth exploring - but instead of taking the chance to question gender roles, Ramey doubles down and enforces literally ancient ideas about what is feminine and what is masculine. Sensitivity is feminine? Sorry but I don't like that at all. Brain differences, boo hoo - these are demonstrably caused by socialization. Why is it not considered masculine to be sensitive and emotional, when that's, you know, a human trait? Isn't that exactly where toxic masculinity comes from, where men are forced to transform every emotion into anger? I don't think it's right at all to call sensitive men "feminine men". She also mentions in passing that this cluster of issues is also studied in soldiers with PTSD, so why isn't that significant? Are we really going to say that vets are feminine men? I know she was trying to go for a Pinkola Estés thing here, but that really took away from the message for me.
  
  2 - The one sentence she said that made me angry. Women in the developing world don't suffer from this as much because they eat less grains/sugar and have a lower toxic load. I don't know how on earth this got overlooked by editors, because this is so BEYOND absurd. Seriously, what? I'll try to explain as someone who grew up in the "developing world" without getting furious. Do you know how much rice the developing world eats? Rice is a grain. Also white bread. Lots of bread. Oh did I mention the developing world literally grows sugarcane and some people grow up drinking a 50:50 mix of milk and SUGAR for breakfast? No? Did you not realize we eat a fuckton of sugar all the time? Oh how about this - people are exposed to all sorts of shit chemicals at work because there are no worker protections, because chemicals that are banned in Europe and North America are still used abundantly in the developing world? That people grow up literally slathered in DDT and there isn't even any clean drinking water anywhere? Maybe people don't take antibiotics for every cold but do you know how many powerful nasty meds we take for worms, parasites, malaria? Ug. Just. Delete that one sentence in the next edition, please.
  
  Immediatley after, she says "maybe" people in developing countries just aren't going to the Dr as much for these conditions, so at least there's a glimmer of a clue in there. And hey how about considering that maybe this applies to the reason why doctors don't see many male "mystery illness" patients - They. Just. Don't. Go. To. The. Doctor. A lot of guys will self-medicate, do drugs, die early and/or kill themselves before they go to the doctor for a stomach ache. And maybe calling them "feminine men" is PART OF THE PROBLEM. Ask your nearest pothead if he smokes because of stomach aches, you'll be surprised how many say yes.
  
  So sorry Sarah Ramey, I actually really loved this book!
• 
  Cari

  This book. Phew. Reading it was an experience.
  
  Ramey has suffered for many years from a mysterious illness, and she identifies her crowd of women with mysterious illnesses as WOMIs, a term that pops up frequently in the book. Along with Ramey's recollections of the pain she's been through, she also describes the epidemic of WOMIdom that is rampant in society, complete with levels 1-5. Ramey's strong grasp of medicine and research underlies her writing, and her exploration of the techniques that can help are both practical and based in her experience. She knows what she's talking about, having lived it. A woman who is suffering may or may not be interested in the story of another woman's suffering, and that's totally valid. But for me, personally, I empathized with Ramey and intend to follow her recommendations.
  
  I also strongly internalized Ramey's commentary on the heroine's journey and its impact on women and healthcare, and I had a personal epiphany about how this journey relates to storytelling. You'll have to read the book for the full analysis. I highly recommend checking it out.
• 
  Sarah

  I received a copy of this book from NetGalley in exchange for an honest review.
  
  This book really resonated with me. Two years ago I developed a mysterious illness that caused me to be in pain whenever I would eat. I've been given a couple of diagnoses that are mentioned in the book (IBS, SIBO), but no one has ever been able to tell my why I got sick or how I can get better. I've seen a lot of doctors, tried a lot medications, and cut out a lot of foods I loved, and all I can say is that two years later more than half the time I'm just very uncomfortable instead of being in constant pain.
  
  Sarah's story felt so much like my story, and her research so much like my research. I've been fortunate to mostly have seen doctors who are compassionate, but I've been told over and over that there's nothing more that can be done to help me.
  
  This book made me feel hopeful that maybe I don't have to stay stuck in this state forever, and seen, which is a really wonderful thing after feeling so isolated and alone for so long. I'd recommend it to anyone else living with a mystery disease.
• 
  jbgbookgirl

  As someone who suffers from fibromyalgia (and suffers from shame of having to admit it) this book spoke to me on a deep level. Her story is horrifying. The pain and abuse she lived with at the hands of her health providers is appalling. The first 50% of the book is a memoir about her life with debilitating pain. Honestly when I got to the halfway point of the book, I was about to abandon it bc I just couldn’t handle reading one more near death setback, but then she changed course and started writing about her experience going into the depths of her personal hell and finding her feminine divinity. It is one of the most beautiful things I have read in a long time. You don’t need to have a mysterious illness to appreciate her discovery. She handles herself beautifully in this book and you truly feel like she is sitting down and having a discussion with you. If you have a mysterious illness and have felt ignored, mocked, belittled, diminished by your health care providers, both traditional and alternative, this book is for you. If you don’t but need some empowerment in your life, this book is for you as well.
• 
  Ashlee Bree

  "BuT. YoU. LoOk. FiNe."
  
  How many different ways have you thought, spoken, or applied these words to someone else? How often have they assaulted your own ears? Tormented you in private? Cropped up again and again throughout your life to spiral you into frustration then into disappointment in seconds?
  
  How many times have you heard them launch from the mouths of the people you love, the strangers you've only just met, the doctors who have no definitive answers, no diagnoses as of yet, or the friends who surely mean well but simply do not comprehend what it means for you to be chronically sick?
  
  As the author points out, and as, I, and many other sufferers of a mysterious illness know, those four little words have the power to aggrieve a person straight through to the soul. They sting a little. Slam like a brick across your chest. Hearing them spoken even in a kindly or a sympathetic fashion sometimes has the capacity to make you feel absolutely wretched inside instead of gratified or uplifted because you can't help but think how at odds those words are with how your body feels and functions seven days a week, twenty-four hours a day, minute to minute in the throws of disease that grants you no rest. It's impossible not to be affected by such a harmless pronouncement - wounded even. It can be difficult to accept the sentiment behind them when relentless, often debilitating, flu-minor symptoms are underscored or invalidated by person after person merely because you may have the so-called "appearance" of good health.
  
  "You look great!" they say.
  
  "Too bad I never feel that way," you want to retort but don't.
  
  (Talk about a tough pill to swallow day after day, right? Especially for those of us who are already swallowing prescribed pills and exhaustion all the time as it is.)
  
  The harrowing truth of this book is that disease of the chronic/autoimmune/mysterious variety tends to be invisible, meaning it's often indiscernible to the naked eye as well as opaque to easy diagnosis and simple cure-alls. Ramey makes sure to highlight the brutal reality of what that signifies.
  
  Which - yep, you guessed it - can be uncomfortable to read let alone to imagine experiencing yourself.
  
  I admire the painstaking honesty and comfort she offers to readers in this memoir, though. She doesn't shy away from recounting her own medical horror stories, from detailing her own health epiphanies, from listing alternative remedies/functional medicine programs she's used to try and improve her quality of life. She isn't afraid to address the stigmatization that surrounds women's health, either. The sexism. She also talks about the embedded systemic problem of physicians who constantly throw out pills, procedures, wrong or "psychological" diagnoses without truly listening to their women patients. (Oooh boy, have I been there and done that!) In fact, I think the importance of listening - of really, truly listening to women - was my biggest takeaway.
  
  Something else that was particularly revelatory is how this book underlines the disconnect that exists between how invisibly ill people FEEL all the time and the way others PERCEIVE how they feel based on what they can see or judge with their eyes.
  
  Ramey talks about the chasm that creates. A cleft that tosses sick people on an island adrift, alone, where they're trying to reconcile the two sides of themselves: Inner and Outer. The Outer Self projects a smiling "okayness" to avoid judgment from those who don't understand what they're feeling while the Inner Self swallows, swallows, swallows all the Things She Cannot Say Or Show until she flames out like a meteorite. Collapsing inwardly from the strain of pretending she was "fine" when, in fact, she wasn't fine at all. Not once the the entire time.
  
  As someone who's constantly waging this Inner/Outer battle with invisible illness myself, reading about it was like receiving a shock of affirmation to my conscious mind. It was a "wow, you split like this all the time" realization, for sure. And I appreciated that. I needed it. Commiseration, solidarity, patience, frustration, empathy, whatever you want to call it--I got all that from this and more.
  
  For Ramey, and for other WOMI's like her, navigating ill health is messy, complicated, and ongoing. It is a journey that is equal parts hopeful and disheartening, relentless and abating. Sometimes it's as cruel as it is kind, as dark as it is light, but do you know what? If you open your ears not just your eyes you'll realize why all of this is so important to know.
  
  Many thanks to NetGalley and Doubleday Books for the ARC!
• 
  Ariel ✨

  Sarah Ramey brings readers in for a very personal look at her captivating, heart-wrenching, page-turning, enraging health journey with her mysterious illness. Her vulnerability is a gift to us all, but especially those of us who suffer from mysterious, unexplained ailments doctors continually choose to ignore or explain away with diagnoses that have nothing to do with our bodies.
  
  This gets four stars instead of five because of the very Gender Studies 101 way Ramey goes about describing "the masculine" and "the feminine" sides of health and wellness. She did go out of her way to try and be inclusive and respectful during her descriptions. Still, in doing so, she fell into the trap of using faux-progressive phrases like "women and femmes" and attempted to get to the root of the issue with our current patriarchal medical model by telling us to fall back on gendered forms of thinking and feeling. I agree with her premise, it just felt like she was not able to describe it effectively. It was a nauseating section to muddle through.
  
  Another glaring issue with Ramey's attempt at creating a guidebook for women with mysterious illnesses is her lack of writing about finances and class privilege. She adds a sentence or two in every other chapter about her expensive all these different doctors, medications, and alternative treatments eventually become. She does not utter a word about Medicaid, or about how living with a disability can cause someone to forgo things like savings, a job with a better salary, or even marriage in order to keep the medical benefits they need to survive. How is Ramey able to afford all the alternative treatments she describes that are not covered by her ever-present insurance? Other than a sentence at the end of the book about how we should lobby our representatives to try and expand SNAP or get a wider array of treatments covered by insurance, she does little to acknowledge how someone without family money can access these. Ramey's parents are doctors. In one chapter, she discusses plans for living a healthier life that include "quitting your job and chasing your bliss" without pausing to mention how finances can trap people in these miserable, unhealthy cycles. She does not mention her class privilege at all. Does she think it's implied? Does it not occur to her that it's an important factor in her own health journey? It's a shame. Ramey's story is raw, illuminating, and very well written; it just lacks a meaningful class analysis that is inexcusable for any book about the healthcare system in the United States.
• 
  Nadia

  This memoir occasionally had me wishing it would soon be over, not only for me, but for the author herself, so that she would finally be free from pain. But this is not a happy ending kind of book, and you know that going in. This is a "here is a large dose of reality" kind of book. It is not lost on me that I found it difficult to endure over the course of several days, but the author lived these infuriating hardships for over a decade.
  The structure, while paging through the book, may look like an attempt to make it seem longer than it is, with frequent breaks and short sections, sometimes only a couple of words long, but this is not only strategic, it is wholly necessary. If it were formatted any other way, it would be dense, clinical, overwhelming, and the importance of what she's writing about would be lost. It needs to be digested in small sections.
  The author was once told she suffered from a lack of rage. Readers of this account will not. The things women have to do to be taken seriously, to be believed about what they know of their own bodies, their own lived experiences, is astounding and horrifying. "Staying likable" to doctors who have belittled and dismissed her, prescribed her antidepressants for physical symptoms which resulted in serious suicidal inclinations, just so that "this well-respected doctor will continue to provide care on into the future" is absolutely terrifying, as a woman, as a person.
  While the middle hundred pages dragged a little for me, I appreciate how thorough the author was with everything she considered, including the lengthy resource list at the back of the book.
• 
  Elise Musicant

  When every step forward pushes you back two, how do you continue? When every doctor thinks you’re hysterical and every medication makes you sick, when the pain keeps you in bed, how do you carry on?
  
  Through the author’s journey, we learn about many new topics in medical conversations, such as the gut microbiome and cortisol levels. We also learn more about humanity, sexism, and womanhood.
  
  This story is not for the faint of heart. There are painful medical conditions and procedures described, and multiple times I teared up in sympathy for the author. However, this book holds so much strength, so much power. It speaks to womanhood and the power of feminine energy. It speaks to society and how we treat our bodies. It teaches us how to stand up for ourselves.
  
• 
  Petra Kirstein

  Everyone should read this!
• 
  Mom_Loves_Reading

  When I saw that this book was coming out on 3/17, I couldn't get it fast enough. (Thanks again, Doubleday!) My daughter & I have both been struggling with a lot of the same "invisible" & "mysterious" illnesses that many Dr's straight up refuse to properly diagnose (I gained 30 lbs in a matter of 2 yrs with no dietary changes or lack of activity, & it took 3 Dr's for one to finally do the right blood work only to find out that I have Hashimoto's autoimmune thyroid, on top of my already diagnosed fibromyalgia, chronic fatigue, EBV & insulin resistance.)
  .
  The struggle is REAL. People don't SEE your invisible illness so they assume you are making your pain up. Nah, girl, some of us just smile through the pain & are real good at hiding it.
  .
  I LOVED the style of this book so much! A little dark & sarcastic (like me!), raw, un-sugar-coated, poignant, insightful, well-written, & for all those out there who struggle to be heard by the people that are PAID to listen to us, this book is for YOU! The hysterical women who long to be heard & LISTENED to. This book was so relatable & I know all you women will LOVE it & relate on some level as well!
• 
  Laura

  I have no words for what this book means to me. As someone with multiple autoimmune diseases, it is often hard to explain how I feel and have people believe me. I struggled with the western medical system for years to get a diagnosis and help. And then I turned to functional medicine when I was still sick after being passed around from doctor to doctor, eventually getting diagnosed with SIBO (which the first and second GI should have caught).
  
  This book was written for me, a Woman of Mysterious Illness (WOMI). And now I know there are so many of us! Her story is my story..... different details but so much the same.
  
  Disclaimer: the author almost dies and during that part of this memoir, it veers way off course. I skipped that entire section. Take what you need and leave the rest. I needed the rest of this book!
  
  If you have an autoimmune disease, you may want to read this.
• 
  Kara Goulet

  You know it's an amazing & worthwhile book when you find yourself wanting to highlight nearly every sentence. You know it's great when you want to tell every person you meet "you have got to read this. It'll blow your mind!" I think just about everyone knows at least 1 person with an invisible illness, one where their body just won't cooperate. Sara manages to hold up a mirror and shine a light on these ailments, to make connections that make sense, and describes the difficulties & shortcomings with both traditional & holistic medicine. Validation goes a long way and she provides that validation that we are not alone. This book is well written, well edited (a rarity) and has a good pace.
• 
  Bonnie Goldberg

  I tend toward the hyperbolic so it is hard to know what to say about this book to capture its extreme erudition, startling intelligence, raw emotion, laugh out loud humour and general common senseness without sounding over the top. While you may think a "vago-recto-colo page turner" (author's words, not mine) is not for you, you'd be wrong. This is for women with mysterious illnesses, the friends and family who love them, and just generally for any woman who has felt belittled and silenced by the medical professional.
• 
  Kelly Long

  Thank you to NetGalley and the publisher for providing this book in exchange for an honest review.
  As a WOMI, this book was intriguing to me. The author's experience of trying to find the correct diagnosis and answers must have been incredibly frustrating. The fact that doctors and specialists don't know or understand what is going on is very relatable.
• 
  Sarah Evan

  Sarah Ramey has undertaken an incredible feat - living through an inordinate amount of pain, gaslighting from doctors and society, and isolation AND then writing a truly engaging and helpful book about this experience. Wow!
  
  Ramey and I are the same age and experienced the beginning of dramatic health issues, while in college. I was diagnosed with Ulcerative Colitis (which later changed to Crohn's Disease) but she never got a firm diagnosis. The diagnoses she got are ones that have minimal funding or scientific backing or belief (e.g., chronic fatigue syndrome, fibromyalgia) and more importantly, little medical intervention to improve her quality of life. She went to SO MANY DOCTORS. Her parents are doctors!!! But nothing really worked and moreso, no medical provider stayed on her side for very long to help her through this journey. She did a ton of research on her own, made her own self assessments of what offered some relief and what made things much worse (and how was it possible they could get worse from what she describes? Oh, but they do!). And when she comes out near the end, the book becomes a little bit more instructional, and she provides support through her research and experience to what she would recommend for anyone.
  
  Now, self-help books have a bad reputation. I am not sure why, as I have read several to help me through my own illness. This one would have been so helpful, as she and I found similar strategies along our journeys to help us alleviate pain (in my case, to get me out of a 6-year flare that may have required yet another major surgery and took me away from work for two years, as I was completely disabled). In both of our cases it started initially with an acupuncturist who provided some symptom relief, but the real help came from a functional medicine doc (in her case)/naturopath NP (in my case) that had us first focus on sleep, food, relaxation, friendship and finding joy in life. There was more to it in both cases, but this earth shattering proscription is one many don’t get, but can show profound improvement when adhered to.
  
  I have a few issues with the book - Ramey barely mentions how she financially was able to handle this disabling and doctor-visiting lifestyle. It seems her family supported her, but it is unclear where her health insurance came from, which was always my issue before pre-existing conditions became covered. If anyone has been through a similar journey, these are essential elements to staying alive. Also, she makes an analogy with the feminine and illness - I agree that sexism exists in western medicine, and I also know about the feminine as the Yin, and other ways in which it is not related to gender. But conflating the feminine with disability instead of focusing on how disabled people as a group are disadvantaged in the white cis hetero patriarchy doesn’t work for me. Exploring the intersections of gender, race, economics, educational and immigration status ON health, illness, and disability within our current medical system would have made more sense to me - that said, that could be my book, not hers ;) And this is a much smaller part of the book than the title would have you believe.
  
  I wholeheartedly recommend this book to anyone who has experienced a mysterious illness (definitely regardless of gender, though if you are not a woman, you might need to skim some of her pontifications about this - when she gets to the heroine journey mid-book. I actually liked the heroine journey part, just not the aforementioned theory). I also recommend this book to anyone who is in the medical and diagnosing field, to learn what it is like to be someone who lives with severe and debilitating illness and who is often told to seek psychological help. Ramey proves that there are organic issues that are not visible and how malpractice occurs because of not investigating or trusting a patient.
  
  Finally, this is a hefty 400 page book, and as someone who has been very sick in her own life, I wondered if I could have lifted it while being ill - if you have an eReader, or are a fan of audiobooks you may want to consider those. It took me a while to get comfortable with Ramey engaging the "dear reader," but once I did, I appreciated her walking me through her memoir and treating me like a trusted witness to what she has been through and learned.
  
  
  Excerpt in the Washintonian
  
  
  Excerpt in the Paris Review
• 
  Heather Fineisen

  A highly readable account of the Author's journey through the wastelands of mysterious medical diagnosis. Especially relevant to those with said illness. This gives a personal face to chronic illness that is easy to relate to. Diagnosis and treatments are outlined with the Author's colorful commentary and wit.
  
  
  Copy provided by the Publisher and NetGalley
• 
  Alicia Bayer

  I finished this book several months ago and had a review written on one of my blogs that I was waiting to publish near to the publication date. Then I got waylaid by my own viral illness in the spring and the review sat in the drafts as I worked on recovery and read other books. When I first read it, I was really wrapped up in it and enjoyed it. While I don't agree with all of the conclusions Ramey comes to in terms of healing, those are mostly on the nutrition front and only in some ways. (I healed my own mysterious and debilitating illnesses years ago and did so with dietary changes that she says won't work -- she went mostly paleo in her healing with foods like bone broth and I went vegan, organic and plant-based. She says things like you can't eat beans when you're recovering, while I found that foods like these were instrumental in my healing and in my continuing health. That said, I'm a big believer in lots of roads leading to Rome.)
  
  I was reminded of the book when I saw a Goodreads friend's scathing review of it, and then saw that another friend also had a lot of criticisms. Reading through the negative reviews on the book, I can see their points. That said, I did like the book a lot and didn't mind the sparse writing style or some of the other issues they had. I felt for all she went through at the hands of truly terrible doctors. While I agree with some of their points against Ramey, this is ultimately her book and her story. She doesn't have to write about men's autoimmune struggles or those of others. And yes, it is gruesome in details about all that she went through, but I don't know how she could tell the story properly without sharing it. I also have no qualms with her recommendations for functional doctors. I tend to admire the way they look at the whole picture instead of one part.
  
  All in all, I found this to be a captivating read with mostly very good advice. Her dietary advice is one small part of what she recommends (and I fundamentally agree with much of that advice too), and I found myself nodding my head again and again with her other recommendations. And yes, she comes from a place of privilege and she sometimes goes into feminist, esoteric segues. Most of it is just in one part of the book and I just took what worked for me and left the rest. I still recommend it, but now realize that it's likely to be a book that people either really like or really dislike, and there are valid reasons for either.
  
  I read a digital ARC of this book for review.