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3.7 AVERAGE
3.7 AVERAGE
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.
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.
It's not often that those of us with mysterious illnesses get to read books written by authors with mysterious illnesses and it's pretty hit and miss whether those books are going to be any good. Books that follow a palatable-for-people-who-aren't-sick "healing arc" for example--not my thing. Same goes for books like this one with authors who present their stories as if they exist in a bubble, supposedly outside of or untouched by anything but illness and in this case, misogyny.
There were SO MANY red flags in the small part of the book that I read, specifically in regards to:
-instances of white feminism. Race, class, sexual orientation and gender identity have been shown again and again to impact access to and quality of medical care. It was obvious early on that Ramey is white and straight and cisgender because of her exclusion of intersectionality.
-incredible, unacknowledged class privilege that allowed her access to treatments, specialists, travel for care, time away from work, moving across the country etc that most of us cannot relate to.
-she does not cite her sources.
It was at the 16% mark that I decided to head over to goodreads and read some of the 1-2 star reviews which is where I learned just how much worse this book was going to get. What I still had to look forward to: lots more of what I mentioned above, transphobia, (unacknowledged) internalized ableism, no recognition of the Disability Justice movement, and a claim that misogyny is the source of other oppressions, including racism. This is some major white feminist racist bullshit.
I recommend the 1 star reviews by Lakshmi S and Elizabeth for more context from people who did read the whole book.
There were SO MANY red flags in the small part of the book that I read, specifically in regards to:
-instances of white feminism. Race, class, sexual orientation and gender identity have been shown again and again to impact access to and quality of medical care. It was obvious early on that Ramey is white and straight and cisgender because of her exclusion of intersectionality.
-incredible, unacknowledged class privilege that allowed her access to treatments, specialists, travel for care, time away from work, moving across the country etc that most of us cannot relate to.
-she does not cite her sources.
It was at the 16% mark that I decided to head over to goodreads and read some of the 1-2 star reviews which is where I learned just how much worse this book was going to get. What I still had to look forward to: lots more of what I mentioned above, transphobia, (unacknowledged) internalized ableism, no recognition of the Disability Justice movement, and a claim that misogyny is the source of other oppressions, including racism. This is some major white feminist racist bullshit.
I recommend the 1 star reviews by Lakshmi S and Elizabeth for more context from people who did read the whole book.
I had to stop reading this book, and I didn't get very far in it. I'm a woman who lives with chronic illness, and related to much of the subject matter. But I found it so badly written that I couldn't finish. There are many other books by chronically ill women that I can relate to much better than this one.
Did not finish. I related to the topic and thought it was a really important one to raise awareness for, but struggled with the format and presentation. It also seemed much longer than it needed to be. I may try it again some day, but for now, it’s a DNF.
Wow. Wow. Wow.
I spent most of the time reading this book, crying, or feeling really really mad. Not at the book, but at the situations this woman had to go through. Having gone through some of them myself, I can understand and relate going to the Doctor and them not believing how much pain you are in or not having any answers to give you about what is causing your illness and frankly sometimes it seems like the Doctors don't even care, if they cant "see" it, more or less.
I myself have a "Mysterious Illness". I have been diagnosed with Fibromyalgia, Chronic Pain, and may possibly have Lupus. That's to be determined. And so much more, but I wont get into that. Needless to say, I could relate.
I Really loved this book. I felt like every time I turned the page I was learning something new that I could really use and was frantically jotting down notes of things to look into later for myself. I felt that it was well informed. So even if your not someone with a background who knows a lot about auto immune diseases, and medical jargon etc., you can still follow along pretty well.
Sometimes It became overwhelming at times to read the horror stories of what she went through with each doctor that I would have to step away from the book for a bit, but that may just be me, and because of personal experiences.
Otherwise I liked that she used her story and bravely put this book out there and is bringing much needed awareness to Women with Mysterious Illnesses and to other major issues in the Health Care System that need to be addressed. Women are largely being ignored when it comes to these types of health problems, and were not being taken seriously. The research is hardly being done and is barley being funded. With more and more cases being reported everyday.
I did leave this book feeling hopeful for the future, especially mine, so to me...that's Big, lol.
5 Stars.
I spent most of the time reading this book, crying, or feeling really really mad. Not at the book, but at the situations this woman had to go through. Having gone through some of them myself, I can understand and relate going to the Doctor and them not believing how much pain you are in or not having any answers to give you about what is causing your illness and frankly sometimes it seems like the Doctors don't even care, if they cant "see" it, more or less.
I myself have a "Mysterious Illness". I have been diagnosed with Fibromyalgia, Chronic Pain, and may possibly have Lupus. That's to be determined. And so much more, but I wont get into that. Needless to say, I could relate.
I Really loved this book. I felt like every time I turned the page I was learning something new that I could really use and was frantically jotting down notes of things to look into later for myself. I felt that it was well informed. So even if your not someone with a background who knows a lot about auto immune diseases, and medical jargon etc., you can still follow along pretty well.
Sometimes It became overwhelming at times to read the horror stories of what she went through with each doctor that I would have to step away from the book for a bit, but that may just be me, and because of personal experiences.
Otherwise I liked that she used her story and bravely put this book out there and is bringing much needed awareness to Women with Mysterious Illnesses and to other major issues in the Health Care System that need to be addressed. Women are largely being ignored when it comes to these types of health problems, and were not being taken seriously. The research is hardly being done and is barley being funded. With more and more cases being reported everyday.
I did leave this book feeling hopeful for the future, especially mine, so to me...that's Big, lol.
5 Stars.
Well, what a shitty story. My heart breaks for her.
Endless diet changes, movement changes, life changes - to you it looks restless and and another “here she goes again” but for me it’s just trying to feel better in my skin. As a fellow invisible mystery sickness woman, it’s so fucking annoying to be judged for wanting to feel better. I imagine the majority of people who read this will others with mysterious sicknesses and we can rant and rave together but nothing can be addressed unless someone actually believes is and try’s to help.
Endless diet changes, movement changes, life changes - to you it looks restless and and another “here she goes again” but for me it’s just trying to feel better in my skin. As a fellow invisible mystery sickness woman, it’s so fucking annoying to be judged for wanting to feel better. I imagine the majority of people who read this will others with mysterious sicknesses and we can rant and rave together but nothing can be addressed unless someone actually believes is and try’s to help.
I want to thank the author, [a:Sarah Ramey|16210153|Sarah Ramey|https://s.gr-assets.com/assets/nophoto/user/u_50x66-632230dc9882b4352d753eedf9396530.png] and publisher Doubleday Books for sending me a copy of [b:The Lady's Handbook for Her Mysterious Illness|33516728|The Lady's Handbook for Her Mysterious Illness|Sarah Ramey|https://i.gr-assets.com/images/S/compressed.photo.goodreads.com/books/1572530747l/33516728._SY75_.jpg|54279022].
After sitting with my thoughts on this book for nearly a month, I think I've finally come to the point where I can put words to the many things I ended up feeling while reading Sarah Ramey's story. One of my notes written in my book journal about this memoir says: This is not just a horror story of a woman and her illness, but one of the medical system in general. Yet... Sarah Ramey didn't talk about the medical system. Or at least not about the health care system. About America's failure to provide the necessary treatment to so many. And that's because Sarah Ramey didn't face this problem. Both of her parents, as well as her grandmother, were doctors. And while Ramey did go into the challenges of Western medicine and how closed minded doctors who practice Western medicine could be, the issue of cost never came up, except for Ramey to mention how much she spent to visit a doctor at the Mayo Clinic should have been all the justification she needed to prove she wasn't a hypochondriac in search of an opioid fix. At the point when a doctor wrote in her file that she was only in search of pain pills, it had been ten years of procedures. And the fact that it took that long, should be credited to her privilege.
What she went through was horrifying. There is no doubt about that. Fourteen years of doctors not believing her or brushing her off or prescribing her anti-depressants for her physical pain. (Honestly, this just goes to show that the idea of being hysterical is still believed to be a treatable symptom for women.) What got me most about this story is that, as Ramey claims, I do know a WoMI (Woman with a Mysterious Illness). I have friends who spent weeks in the hospital because they couldn't probably be diagnosed. While I was reading this book, there was an article in People about a girl who was body shamed by her gastroenterologist only to find out later that she had cancer. WoMIs are everywhere. In all races. In all parts of the world. With various accesses to medicine and health care.
And Sarah Ramey? She had fourteen years of procedures. She couldn't hold a job. She doesn't talk about going on disability. But she does talk about moving around the country. D.C, Massachusetts, Arizona, California, to name a few. She talked about expensive procedures that she was able to try, all while theoretically not earning any kind of an income. So while yes, her experience was horrible, her privilege is undeniable in this memoir. Her experience can encourage others to maybe take the complaints of chronic pain more seriously when voiced by their friends or family or even strangers. But I think that what most women are going to read in this book is: If this ever happened to me, I'd be fucked. Because who could afford fourteen years of experimental treatments and procedures, traveling the country in order to obtain them, without just crumbling under the debt it would create?
The call to arms that she gives at the end of the book isn't for people to go vote for politicians who actually aim to fix the broken healthcare system -- because the healthcare system wasn't the issue for her. But it was to support the WoMIs in your life. To talk to your doctors and advocate for yourself. I should have seen the call to arms coming. I really should have.
I get that she felt she was using her platform to help other women in chronic pain know that they've been seen. That they're believed. And I commend her for that. But this book feels like Ramey was blind to her privilege. She had doctor parents who would advocate for her. Who could support her. She wasn't believed because she was a woman, she claims. But she wasn't looked at as if she were a criminal, either. Because she was a white woman. And maybe discussing the way other races are treated in the health care system felt out of her lane. But acknowledging that she didn't have those particular struggles would have been a small credit to her.
I related to Ramey in a lot of ways. I saw my friends and family and their various pains in her story. But I also saw someone who received medical care that would have been inaccessible to so many others. So while what she went through broke my heart, the fact that so many other women experience something similar and who will never have the access to medical treatment that they need just shatters me.
After sitting with my thoughts on this book for nearly a month, I think I've finally come to the point where I can put words to the many things I ended up feeling while reading Sarah Ramey's story. One of my notes written in my book journal about this memoir says: This is not just a horror story of a woman and her illness, but one of the medical system in general. Yet... Sarah Ramey didn't talk about the medical system. Or at least not about the health care system. About America's failure to provide the necessary treatment to so many. And that's because Sarah Ramey didn't face this problem. Both of her parents, as well as her grandmother, were doctors. And while Ramey did go into the challenges of Western medicine and how closed minded doctors who practice Western medicine could be, the issue of cost never came up, except for Ramey to mention how much she spent to visit a doctor at the Mayo Clinic should have been all the justification she needed to prove she wasn't a hypochondriac in search of an opioid fix. At the point when a doctor wrote in her file that she was only in search of pain pills, it had been ten years of procedures. And the fact that it took that long, should be credited to her privilege.
What she went through was horrifying. There is no doubt about that. Fourteen years of doctors not believing her or brushing her off or prescribing her anti-depressants for her physical pain. (Honestly, this just goes to show that the idea of being hysterical is still believed to be a treatable symptom for women.) What got me most about this story is that, as Ramey claims, I do know a WoMI (Woman with a Mysterious Illness). I have friends who spent weeks in the hospital because they couldn't probably be diagnosed. While I was reading this book, there was an article in People about a girl who was body shamed by her gastroenterologist only to find out later that she had cancer. WoMIs are everywhere. In all races. In all parts of the world. With various accesses to medicine and health care.
And Sarah Ramey? She had fourteen years of procedures. She couldn't hold a job. She doesn't talk about going on disability. But she does talk about moving around the country. D.C, Massachusetts, Arizona, California, to name a few. She talked about expensive procedures that she was able to try, all while theoretically not earning any kind of an income. So while yes, her experience was horrible, her privilege is undeniable in this memoir. Her experience can encourage others to maybe take the complaints of chronic pain more seriously when voiced by their friends or family or even strangers. But I think that what most women are going to read in this book is: If this ever happened to me, I'd be fucked. Because who could afford fourteen years of experimental treatments and procedures, traveling the country in order to obtain them, without just crumbling under the debt it would create?
The call to arms that she gives at the end of the book isn't for people to go vote for politicians who actually aim to fix the broken healthcare system -- because the healthcare system wasn't the issue for her. But it was to support the WoMIs in your life. To talk to your doctors and advocate for yourself. I should have seen the call to arms coming. I really should have.
I get that she felt she was using her platform to help other women in chronic pain know that they've been seen. That they're believed. And I commend her for that. But this book feels like Ramey was blind to her privilege. She had doctor parents who would advocate for her. Who could support her. She wasn't believed because she was a woman, she claims. But she wasn't looked at as if she were a criminal, either. Because she was a white woman. And maybe discussing the way other races are treated in the health care system felt out of her lane. But acknowledging that she didn't have those particular struggles would have been a small credit to her.
I related to Ramey in a lot of ways. I saw my friends and family and their various pains in her story. But I also saw someone who received medical care that would have been inaccessible to so many others. So while what she went through broke my heart, the fact that so many other women experience something similar and who will never have the access to medical treatment that they need just shatters me.
challenging
dark
emotional
funny
hopeful
informative
sad
tense
medium-paced
Content Warnings
Graphic: Ableism, Body horror, Chronic illness, Misogyny, Sexism, Sexual assault, Torture, Medical content, Grief, Medical trauma, Gaslighting, Injury/Injury detail
Moderate: Excrement, Vomit
The narrator has multiple chronic illnesses that severely affect her day to day. This book is about her journey to getting diagnoses and treatment. Along the way she experiences myriad medical traumas and gaslighting from multiple doctors and nurses. Since her pains center in her digestive and reproductive systems there are also multiple mentions of symptoms as well as sometimes graphic accounts of the physical abuse and essentially torture she endures from these medical interventions. Chapters 17&18 focus explicitly on a horribly painful and cruel procedure carried out on her reproductive system by a dispassionate and vindictive physician. Survivors of sexual assault and rape, and those living with medical trauma, may find this a very difficult read and may want to steer clear of these passages in particular. Although they are not the only sections focused on medical interventions and pain they cause to her, or even to her reproductive system specifically.
I started recommending this book before I finished it. It was powerful to see aspects of my story reflected uniquely reflected in Sarah Ramey's. I suspect I'll be talking about this book for along time but I was disappointed that this narrative doesn't connect to the Disability Justice movement and instead risks perpetuating ableism and gender essentialism. I think it could have been an even better bridge builder. I'd still say that this could be a good starting text for those who don't know how systemic chronic illness is both personally and societally.
This was really a mess on a lot of levels. I was very interested in the book as someone who had/has a mysterious illness myself but the unacknowledged privilege, the transphobia, the strange, circular, repetitive way she wrote, weird views on the source of racism (it’s really misogyny apparently?), forays into mythology she never really nails, the odd way she addressed the reader, the internalized ableism was just too much.
She also made at least a couple dozen references to Harry Potter which I also found strange. I haven’t read Harry Potter but I wouldn’t have expected to need to read a children’s book about child wizards in order to get the references in a book about an adult woman’s battle with the medical system.
I feel for her but where was the editor?
Why was the book described as being “darkly funny”? This was not a funny woman or a funny tale.
She also made at least a couple dozen references to Harry Potter which I also found strange. I haven’t read Harry Potter but I wouldn’t have expected to need to read a children’s book about child wizards in order to get the references in a book about an adult woman’s battle with the medical system.
I feel for her but where was the editor?
Why was the book described as being “darkly funny”? This was not a funny woman or a funny tale.