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The Lady's Handbook for Her Mysterious Illness

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Sarah Ramey recounts the decade-long saga of how a seemingly minor illness in her senior year of college turned into a prolonged and elusive condition that destroyed her health but that doctors couldn't diagnose or treat. Worse, as they failed to cure her, they hinted that her devastating symptoms were psychological. The Lady's Handbook for Her Mysterious Illness is a memoi Sarah Ramey recounts the decade-long saga of how a seemingly minor illness in her senior year of college turned into a prolonged and elusive condition that destroyed her health but that doctors couldn't diagnose or treat. Worse, as they failed to cure her, they hinted that her devastating symptoms were psychological. The Lady's Handbook for Her Mysterious Illness is a memoir with a mission, to help the millions of (mostly) women who suffer from unnamed or misunderstood conditions. Ramey's pursuit of a diagnosis and cure for her own mysterious illness is a medical mystery that she says reveals a new understanding of today's chronic illnesses as ecological in nature, driven by modern changes to the basic foundations of health, from the quality of our sleep, diet, and social connection to the state of our microbiomes.


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Sarah Ramey recounts the decade-long saga of how a seemingly minor illness in her senior year of college turned into a prolonged and elusive condition that destroyed her health but that doctors couldn't diagnose or treat. Worse, as they failed to cure her, they hinted that her devastating symptoms were psychological. The Lady's Handbook for Her Mysterious Illness is a memoi Sarah Ramey recounts the decade-long saga of how a seemingly minor illness in her senior year of college turned into a prolonged and elusive condition that destroyed her health but that doctors couldn't diagnose or treat. Worse, as they failed to cure her, they hinted that her devastating symptoms were psychological. The Lady's Handbook for Her Mysterious Illness is a memoir with a mission, to help the millions of (mostly) women who suffer from unnamed or misunderstood conditions. Ramey's pursuit of a diagnosis and cure for her own mysterious illness is a medical mystery that she says reveals a new understanding of today's chronic illnesses as ecological in nature, driven by modern changes to the basic foundations of health, from the quality of our sleep, diet, and social connection to the state of our microbiomes.

30 review for The Lady's Handbook for Her Mysterious Illness

  1. 4 out of 5

    Ren

    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 frustr 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.

  2. 4 out of 5

    Nenia ⚔️ Queen of Villainy ⚔️ 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.

  3. 4 out of 5

    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 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.

  4. 4 out of 5

    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 sp 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.

  5. 4 out of 5

    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 NetGal 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.*

  6. 5 out of 5

    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 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.

  7. 4 out of 5

    Kacey

    I’ve been MIA on goodreads for a while, not only is the world in mayhem but my own illnesses have been ravaging my body as of late. I haven’t read as much recently, but I desperately need this book right now. Finding people who understand you is sometimes the best medicine. ————————— YES!! This book sounds like it could have been written about me, which is just a reminder that way too many women experience gas lighting and blatant dismissal from doctors. I can’t wait to read this.

  8. 4 out of 5

    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 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.

  9. 4 out of 5

    Lakshmi S

    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 wa 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.

  10. 4 out of 5

    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 friend "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!

  11. 4 out of 5

    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 lik 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 belittle 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.

  12. 5 out of 5

    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 c 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.

  13. 5 out of 5

    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.

  14. 5 out of 5

    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 wri 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.

  15. 4 out of 5

    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 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.

  16. 5 out of 5

    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.

  17. 4 out of 5

    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

  18. 4 out of 5

    Bethany Bendtsen

    Thank you to Netgalley and the publisher for supplying me with an ARC in exchange for my honest review. In the early pages of The Lady's Handbook for Her mysterious illness, Ramey recalls how a normal twenty-something life was upended by a UTI from hell--one that nearly killed her and led to six months of IV antibiotics. This UTI is the trigger for Ramey's fall "down the rabbit hole" from healthy woman to full-blown medical mystery. I found Ramey's telling of her medical struggles and the result Thank you to Netgalley and the publisher for supplying me with an ARC in exchange for my honest review. In the early pages of The Lady's Handbook for Her mysterious illness, Ramey recalls how a normal twenty-something life was upended by a UTI from hell--one that nearly killed her and led to six months of IV antibiotics. This UTI is the trigger for Ramey's fall "down the rabbit hole" from healthy woman to full-blown medical mystery. I found Ramey's telling of her medical struggles and the resulting medical sexism she encountered from doctors--both well-meaning and downright reprehensible--to be extremely compelling. Throughout, Ramey struggles to carve out a resemblance of a happy life--playing music, dating, and working for Barrack Obama--amid a debilitating laundry list of symptoms few belief and none can diagnose. During this ten year battle for wellness, Ramey yo-yos from near-recovery to near-death countless times. Finally, she reaches a breaking point and decides to take healing into her own hands, and what she learns through this process is the backbone of this book. Any compassionate person will find this book, on one hand, hard to endure because of the pain and suffering Ramey goes through. Even at the end, there's no perfect happy ending, but of course that's the point. For many chronically ill woman, their struggle is lifelong. While I appreciated this honesty from the writer and was thoroughly engrossed by the sections where she details her personal experiences, I could only read this book in short spurts and found myself struggling to finish. Once Ramey starts talking about her own theories on healing, medical sexism, and functional medicine, it got to be very repetitive for me. She kept hammering the same points again and again, and maybe for someone skeptical of her experience, this would be necessary, but the middle hundred or so pages dragged. And, despite the many pages devoted to detailing her traumatic experiences with doctors, and how the medical establishment is failing patients that are most in need, it seemed to be that Ramey shied away from calling out who profit, literally, from this current system--the insurance companies, pharmaceutical companies, etc. I was disappointed that she didn't touch on this more. 2.5 stars.

  19. 4 out of 5

    Laura

    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 a 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.

  20. 5 out of 5

    Wendy

    I received a copy of The Lady's Handbook for Her Mysterious Illness from Netgalley in exchange for my honest review. As a woman with IBS and RA, I've experienced my concerns being brushed off by physicians. Working as a nurse practitioner, I know a little bit about medicine but tend to lose my objectivity when it comes to my own issues and dealing with medical providers. I've never been told that my problems are 'in my head' but I've certainly been dismissed. Changing my diet? Taking supplement I received a copy of The Lady's Handbook for Her Mysterious Illness from Netgalley in exchange for my honest review. As a woman with IBS and RA, I've experienced my concerns being brushed off by physicians. Working as a nurse practitioner, I know a little bit about medicine but tend to lose my objectivity when it comes to my own issues and dealing with medical providers. I've never been told that my problems are 'in my head' but I've certainly been dismissed. Changing my diet? Taking supplements? I was once told that probiotics are akin to pixie dust. So I was really intrigued by Sarah Ramey's story. And what a story it is. The child of 2 physicians, she was raised to trust in traditional medicine and to respect physicians. When traditional medicine failed her, she sought answers from other physicians. I was horrified to read some of the medical procedures she endured and the patronizing demeanor of some of the physicians she met. I believe it all because I've seen it in my years as a nurse. Having a disease with vague symptoms that has no pharmacological treatment made her targeted as a drug seeker at worst and a malingerer at best. This is a difficult story to read but it should be a cautionary tale for patients and medical providers to listen to the patient with empathy. There's so much good advice in here regarding diet and supplements as well as advocating for yourself. No one, and I mean no one should have to go through what Sarah has gone through. My only complaint about this book is that I felt there were parts of her story that didn't provide value--there was a large narrative on heroines and while I get that this was part of her journey, I skimmed past it. Chalk it up to me looking more at the disease and management, but it just felt superfluous. And yes, I do believe that women are quite often dismissed in medicine, something that needs to change. Interestingly, I've had more empathy from some of the male physicians I've seen than women! In spite of that, if you are a WOMI (woman of mysterious illness), you need to read this book, if for nothing else but the empowerment you will feel when you finish.

  21. 4 out of 5

    Petra Kirstein

    Everyone should read this!

  22. 5 out of 5

    stacy

    i really liked the parts of this book that i read. i had to skim a bunch because it felt like there was just too much non-edited stream of consciousness and i was more interested in reading about her symptoms and her interactions with her doctors and how she was managing. those parts were excellent, especially towards the end. she has been through hell and i admire her for her strength and stamina.

  23. 4 out of 5

    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 masc 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.

  24. 5 out of 5

    Honore

    This was an impactful book for me. Listening to Sarah Rameys navigate the medical system (and "alternative" resources) was devastating. A few times I had to actually pause the audiobook for a few minutes to prepare for what was coming next. The information shared within the last few chapters about things to consider if you or someone you love is coping with a chronic illnesse will have me picking this book up again.

  25. 4 out of 5

    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 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!

  26. 4 out of 5

    Becki

    This fascinating play-by-play of one woman's decade-long health struggles reads more like a mystery novel than a nonfiction memoir. I was touched by the richness of detail and experience shared in the book. My only frustration was that I felt it took the author a long time to get where she was going, which was to explain the specific (and controversial) medical field that worked for her. I loved hearing her story and learned a lot from her experience, but I do wish I'd known a bit more about how This fascinating play-by-play of one woman's decade-long health struggles reads more like a mystery novel than a nonfiction memoir. I was touched by the richness of detail and experience shared in the book. My only frustration was that I felt it took the author a long time to get where she was going, which was to explain the specific (and controversial) medical field that worked for her. I loved hearing her story and learned a lot from her experience, but I do wish I'd known a bit more about how focused she'd be on functional medicine before I began reading. I found myself skimming quite a bit during the chapters meant to convey all of her research and educate the reader on functional medicine, but I was 1,000% invested in her personal story from beginning to end.

  27. 5 out of 5

    Nina Brown

    My heart ached for Ms. Ramey, and I believe she was sick. I believe medical science is failing people like her. That said, ohmygosh, am I the only one that couldn't bear the obtusely privileged, sanctimonious, and self-aggrandizing tone of this book? I didn't find her style witty, I found it imprudent and rambling. I was so excited to hear about her compendium of experiences from interviews with women who have mysterious illnesses, but it's all about her and it sounds like low self-esteem, person My heart ached for Ms. Ramey, and I believe she was sick. I believe medical science is failing people like her. That said, ohmygosh, am I the only one that couldn't bear the obtusely privileged, sanctimonious, and self-aggrandizing tone of this book? I didn't find her style witty, I found it imprudent and rambling. I was so excited to hear about her compendium of experiences from interviews with women who have mysterious illnesses, but it's all about her and it sounds like low self-esteem, personified! It was such a slog to finish. She can't resist mentioning how her medical professionals are more famous and more respected or more cruel and indifferent, she and her crowd are higher achieving, her symptoms are more severe and perplexing, her decline more precipitous, her open mic night isn't your typical "anemic" open mic experience ... she's so dismissive of the experiences of others! It gave me a gross feeling in my gut, no pun intended! She consults with the best doctors and demands antibiotics, she can assure you; she avails herself of her yogi, her EXPENSIVE (we get it, you said it several times) and RENOWNED acupuncturist, her parents' summer cottage in which she convalesces, and an antifungal script from her medical-practitioner mom (which, in a display of questionable ethics, mom didn't want her to discuss with her treating clinicians). Ramey sounds as though she's simultaneously gaming and dissing the system. I don't believe she ever felt that eating well was nincompoopery, nor does medical science believe or promote this. Her own descriptions indicate she can sustain effort and attention when a subject piques her interest, the very antithesis of intractable fatigue. She regards and disregards science at whim. She uses terminology incorrectly, in spite of her extensive use of medical services; e.g., your labia are part of the vulva, not the vagina. She consumes medical resources, on an emergent basis, that reveal no pathology and could be directed toward true emergencies. Worst of all, her cursory mention of discrimination of minorities in medicine toward the start of the book sounds gratuitous and dismissive, like a means to justify her feeling entitled to her privileged and disproportionately attentive medical treatment. Her condition and pursuant lousy treatment by the medical industry is real, and for that I feel great empathy toward her. I don't think she sounds like a junkie, and she works when she is able. Her meandering course through "many" degrees, however, ultimately led her to a confirmation bias filled creative writing treatment of a scientific topic that deserves rigor and reputable data and citations for her arguments. The minute a theory ceases to fit the picture she paints, she abandons it in favor of the next thing. She descrbes person after person listening to her woes, bewildered, offering their best guesses (exercise, diet, therapy, behavior modification), which she accepts, then laments that her condition is a result of never having been listened to when she fails to maintain compliance. Later, she arrives on diet, exercise, and positivity as solutions, but takes sole credit for their discovery. As such, it reads like the journal of a whiny, spoiled girl in a self-imposed state of arrested development. I suspect the book is of comfort to sick persons in its ability to confirm their experience, its one redeeming quality. Not everyone has the time or the resources or the parental support to take a years long journey to "follow" their "bliss", attend to nothing but their health, retreat, take herbal antifungals, focus on yoga practice, cycle through endless pricey alternative treatments, pack up and move on a whim, shed their "demoralizing and confining" childhood home at will, wear Chanel lipstick (did she mention expensive?) and visit open mic nights while unemployed, "sleep on it" for three months, or even repeatedly demand satisfaction from their doctors until they get it. Despite her relative fortune, she declares her problems of greater magnitude than others'. She never takes into account the experiences of scores of less fortunate women across the country with crappy jobs, little to no health coverage, time-burglar husbands and children, and perhaps even parents that can scarcely care for themselves, much less provide a good standard of living for they and their disabled adult child on a permanent basis. The wheel with time to squeak gets the grease, here. She sounds as though she thinks of, literally, nothing but herself for years and years, so she drones and drones about being vindicated on her half-baked theories, and about righting perceived slights from doctors, never presenting a balanced picture of her clinicians' differential data and diagnoses, or even the support for her own positions. Instead, she whines and whines, and she brags and brags. I'm not even saying her premise is wrong or all her ideas are kooky. The story is just so given to flights of idea and gratuitous back-patting (Dr. Functional says only SHE answered the question about stress right! Click! Check!), that the solution, expensive tenacity, is a hard pill to swallow. I just would have been more interested in a book describing the experiences of the author and other people with mysterious illnesses, minus the name dropping and self-serving hyperbole and conjecture. I know if she read my review, her privilege would say to her, "What does this woman know? She doesn't understand how hard it was for me. Privilege has nothing to do with it! I know I've saved at least one woman!" Perhaps, but I would challenge her to ask if the woman she may have helped was probably white, privileged, or wealthy. Strikes me that very few others have the time and resources to follow the author's advices. Regardless of all the foregoing, I was relieved to read that they finally found the anatomical cause of her distress. I hope she feels much better.

  28. 4 out of 5

    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 fundin 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

  29. 4 out of 5

    Carly Friedman

    This was a really eye-opening account of a woman's chronic illness and her experience with healthcare. There is much to think about here regarding quality care, feminism, patient care and advocacy, and public health. I do not have a chronic illness or autoimmune disorder but my mother does. I definitely enjoyed and learned from the book and will recommend it to her.

  30. 4 out of 5

    Corin

    I appreciated the writing, the perspective, and the food for thought. Fundamentally it's about women with 'mysterious illnesses' but there is much more.  Highly recommend.

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