What Medicine Misses in Women With Mysterious Illnesses

The Lady’s Handbook for Her Mysterious Illness, by Sarah Ramey (Amazon / Book Depository)

This prologue is typical of women like me. A simple and innocuous medical event — often with a gyno or gastro tilt — that should have resolved simply, but it didn’t. She thinks it is just another one of life’s ups and downs, when in fact Up is about to become a distant memory.

Sarah Ramey remembers floating in Walden pond as one of the last moments that things were ok, before her descent began. Descent into a dark, internal underworld becomes the dominant theme of this medical mystery memoir, and of her life from that point, really. Although recognizing and making use of that descent only comes much later in the fourteen-year-long personal and medical journey before she found a complicated answer for herself, and by extension, perhaps for the millions of women who are also chronically ill with some combination of urogenital/autoimmune/neuroendocrine/digestive illnesses.

Ramey’s began with a UTI that wouldn’t get better, leading to a botched urethral procedure that sounds like one of the most harrowingly painful things I can imagine, although it wouldn’t be the last of the botched surgeries or painful procedures she’d endure, often at the hands of callous, skeptical doctors who disregard women’s pain and chalk many symptoms up to the psychological instead of the physical. Especially if you dare not to look sick: “Everyone…seemed to me a choir of strangers, a thousand voices deep, booming But You Look! Just! Fine!” 

Not to mention the shame, and there is inherently a lot of shame in all this, of various stripes – among them, that your diagnoses have treatments which seem like they’re just not working for you, the astonishing, life-interrupting severity of the pain or symptoms, or the fact that so much of it is happening inside your vagina, which many doctors have been digging inside.

I think this is very common — doctors never see or hear again from the patients they shame, and so there is no way to feel or see how damaging, and incorrect, their behavior is.

Repeated medical missteps of varying degrees of awfulness layer trauma on top of trauma, and no solution is IT despite the promising excitement of each new diagnosis. It all ends up feeling like it’s just driving the illness deeper into her system, as she describes it.

Again and again and again (but not without a stop at the billing counter), doctor after doctor reached a hand inside me, rooted around, caused me extraordinary, blinding pain — and if this produced any emotional response whatsoever, the entire appointment was washed away by a river of my own tears.

Her distress, understandably increased after so many failed treatment plans, recurrences, worsenings, and new comorbidities, always leads to recommendations for psychiatric counseling and antidepressants, although Ramey tries to explain that her depression and anxiety are stemming from the illnesses, pain, and frustration over constantly failing treatments, but to deaf ears and made-up minds.

If you’ve been reading here awhile, you know I don’t write too deeply about myself or my personal life. I only wanted this to be about books. But of course, we bring whoever we are and whatever our lives are and have been to what we read and how we interpret, assess and derive meaning from material. There’s no way for me to talk about this book without saying that I’m also a woman with a mysterious illness and I’m struggling to put into words the resonance I found here. If you’ve read my overlong reviews you know that’s not usually an issue for me.

So it’s hard for me to be objective about something that was so surreally, painfully relatable, and as Ramey informs, this should also be the case for millions of other women she’s labeled WOMIs – women with mysterious illnesses (I don’t like that acronym but you get used to it).

I’m at the eight-year anniversary of my own illness beginning — although I had the sick-thud, stomach-sinking realization reading this that if true and these things really are all connected, then it began earlier with other illnesses that I thought were unconnected to the primary problem. In fact, when Ramey lists symptoms that are identified as being characteristic of such women, I felt simultaneously better and worse — as in, oh my god, it was connected all along but maybe knowing means we can finally fix it? But also, oh my god. This is all connected and it’s so much deeper and more complicated than I thought. (However, the symptom list is almost too-long. Anyone could fit a few of these, but she’s done more research than I have so I’ll trust her here.)

And why shouldn’t it be complicated? If you have such an illness and listen to your body, you always knew before every doctor did that this next treatment was still not going to be it. As Ramey puts it brilliantly, “I could feel a dark tremor down in the chambers of my inner knowing.”

Ramey’s parents are doctors, and she establishes herself as a firm believer in Western medicine and avoider of woo. I need that reassurance. But, like so many of us who at some point will do or try absolutely anything on this earth to rid ourselves of illness that even stumps doctors, she also tries the naturopath, wellness industrial complex-type solutions too. It’s that “vacillating between extreme belief and extreme cynicism” that there must be a solution while fearing you’ll never find it.

In addition to the endless parade of doctors, some of whom make sincere efforts and others who make it much worse, there are the friends and family who try but sometimes add to the psychological burden of being chronically sick, leading the patient to feel even more of a failure, or frustrated — “ask[ing] if I have tried green juice or positive thoughts.” Which just makes you more isolated and unable to express what’s happening to you and how it feels.

I knew I needed to talk to someone, but I had become afraid through experience that my circle of family and friends was going to try to tape the corners of my mouth to my ears and force me to try and look on the bright side.

I know, I KNOW these people mean well, but fuck positive thoughts when you’re counting your time being sick in years, not days or weeks or even months; you’ve done it all, tried it all, spent all the money and seen all the doctors (in multiple countries in my case; as far as the Mayo Clinic in hers, synonymous with top-level medical care, where they suggested, to the tune of $20k, that she adjust her toilet posture and then performed another traumatic, unhelpful procedure on her and accused her of faking for pain medication).

I’m not saying I wasn’t emotional or at times very sad. Of course I was — I had a hideous vaginal disease. But the notion that my sadness would drive me to misperceive or make up something so… elaborate (not to mention humiliating) (not to mention rectal) as a cry for help — well, this was quite a shock.

She emphasizes the effect on quality of life, noting that chronic fatigue syndrome ranks worse on quality-of-life factors than many terminal illnesses: “Not because it is useful to rank terrible illnesses — it is not,” but doctors and loved ones will remind you that what you have won’t kill you and isn’t as bad as cancer or AIDS so get over yourself and live your life even if your pain interferes with that or your vagina doesn’t work anymore or in her case, you have bowel issues so severe that you’re virtually bedridden.

It becomes less about staying positive that you’ll ever find a solution, and more that you hope, desperately, you’ll find some semblance of meaning down in all of this muck eventually, of why this is what life shook out for you. “It was horrible to still be alive at all,” she observes, and I think I was so relieved to see someone else actually say that. I had always been too afraid to, but there it is. Is life really worth living if it’s always going to be like this?

I was desperately in need of a story. Something, anything, to tell myself to mitigate what appeared to otherwise be an unmitigated disaster.

So as Ramey tells the long and increasingly frightening story of her mysterious illness’s progression, looping in masses of data and research she’s collected over the years, she begins exploring the idea of the heroine’s journey, “the voyage into the Underworld,” as counterpoint to the “hero’s journey” mythological narrative proposed by Joseph Campbell.

These mystery cults did not demonize the darkness, as so many modern spiritual paths do. The modern spiritual path is modeled on “up and out” — rising up and out of treacherous emotions, flagellating the sinful body for becoming sick or overweight, and questing for a mind so calm, so quiet, it nearly does not exist… These older practices embraced and accepted descent and darkness as vital to life itself.

Going into the dark material of our own shadows is not easy, but it is necessary for a whole, generative, human life.

She starts allowing herself to be angry (“If I had an emotional problem, I realized it was that I had not said fuck you soon enough”). This is the antithesis of “the positivity quest so often recommended to me at spiritual gunpoint,” which; I had to laugh, because yes. Exactly how it feels. Researching, she begins linking a number of illnesses, symptoms, and systems together, while connecting with other women suffering the same.

The storytelling is conversational and darkly funny while still incorporating data and clinical research. Ultimately, the (developing) solution she’s found is in functional medicine, and doctors willing and able to consider the entire mind-body connection, specifically between the four areas (endocrine, immune, gut, and liver) involved in these chronic illnesses. I’ve only lightly looked into functional medicine, and was discouraged by some debunked claims. But the way Ramey frames it is sensible. We would of course be remiss to pretend diet, stress, untreated psychological trauma, poor sleep and the like don’t affect our bodies, especially over the longer term.

Functional medicine is still in its nascent stages, and it is in no way perfect — in fact, there is much to improve. It is not yet covered by insurance (which makes it very expensive and inaccessible), not all practitioners are top-shelf clinicians, and like anything outside the bounds of conventional medicine, it is always in danger of perpetuating the worst of the wellness industrial complex — overselling supplements, fear-based marketing, and all-caps newsletters.

She connects these stressors to things like cortisol dysregulation, which she says isn’t “considered real or important”, leaky gut, upsets to the microbiome, and damage to the microglia (nervous system cells) in the brain, together leading to “wide-ranging dysfunction in the nervous system, the endocrine system, the gastrointestinal system, and the immune system.” Then there are a couple of crucial underlying factors that characterize every woman (and a few men, but mostly women) who suffer the mystery illnesses: 1) being a highly sensitive person whose descent into illness was clearly preceded by an identifiable traumatic stressor, and 2) bad childhood.

Ramey argues that medicine is missing a more-feminine half, the “slower, darker, compassionate half” that’s willing to delve down, practicing what she calls “root-cause medicine” instead of treating symptoms in a yearslong game of Whack-a-Mole. And, crucially, you need people to listen, about what happened that got you here in the first place. It’s a big problem in modern medicine that she identifies, but also personally: “The same is often true for… her circle of friends or family — who want so desperately for her to just be fixed, and don’t want to listen to her story or her pain.”

To continue to exclude diet, the microbiome, lifestyle, and the patient-doctor relationship from our understanding of both the creation of health and the development of disease just does not work, and that isn’t some leftist, tree-hugging idea. To exclude food, the microbiome, sleep, and stress from medicine is hugely expensive and fiscally irresponsible to an almost unimaginable degree, for the patient, for the insurance companies, and for the government.

She outlines what she’s gathered from data and experience — alongside functional medicine, they’re common-sense life changes, like eating home-cooked foods with less sugar and wheat (this is hard, but did she have to call out bagels specifically, it feels so personal!), prioritizing sleep, balancing work and knowing when certain endeavors will prove damagingly stressful. Promisingly, she cites Lyme disease as a previous “mysterious illness” that’s become better understood and testable, and with the recent attention on the microbiome, it does seem we’re getting where we need to go, but it’s still a long way.

The feminine journey is one of continual, conscious cycling through darkness into rebirth — learning to see and gather wisdom in the dark, rather than trying to slay the dark.

The core idea is unsurprising if you’ve got one of these and been through all the possible culprits and treatments unsuccessfully: “mystery illnesses are not caused by a single, virulent, odious villain. [They] don’t come from one bad turn of the genetic roulette wheel. Like most chronic disease, they grow from the ground up.” Ramey says we have to go back down to the roots to cure them, and it’s hard, scary work that takes a long time, but what else is there? If this book hits you as hard as it did me, you’ve already tried everything else.

It’s an intense read but smartly, poetically, and surprisingly lightly told, with admirable self-awareness. Ramey tempers it with so much humor, passion and hope that you can almost see the end-of-tunnel light, even as she’s still working on it herself. It’s realistic. I’m astounded at what she’s accomplished with this: my illness isn’t nearly at the level hers was (don’t worry, she’s got a helpful classification system for us) and I haven’t been able to assemble a fraction of the drive and energy she has. I’m so glad this book exists.

She pleads for anyone in healthcare to read this, as do I — for every doctor who’s helped a little, there’s another who’s made it worse. I hate having to say that, but it’s painfully, traumatically true, and her experience illustrates that uncomfortably vividly. I hope that others will read it too, even if you’re not a mysteriously ill woman, because I promise you know one. If you are sick and recognize yourself here, this feels scary, hopeful, but potentially life-changing.

May you be the girl who lived.

The Lady’s Handbook for Her Mysterious Illness: A Memoir
by Sarah Ramey
published March 17, 2020 by Doubleday

I received an advance copy courtesy of the publisher for unbiased review.

Amazon / Book Depository

11 thoughts on “What Medicine Misses in Women With Mysterious Illnesses

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  1. A brave book and a brave review. I don’t think I’d be brave enough to read it, to be honest. I’ve had a lifetime battle with endometriosis, but so heavy is the cloak of secrecy around reproductive issues and the pressure that time of the month isn’t as bad as you make out, that I NEVER EVEN KNEW until I had surgery for an ovarian cyst (which it had caused) and they found it. Not even after having had fertility treatment. I was made to feel during that that it was somehow my fault, the “unexplained infertility”, when it was in a way my fault, but due to a recognised and physical condition! And I still think I’m “lucky” because I only fainted on one day of the month, had crippling pain and what I thought was IBS but wasn’t all IBS, but wasn’t actually disabled by it constantly. Urgh. An important book for healthcare providers to read, for sure.

    Liked by 1 person

    1. Liz, I promise you’re brave enough to read it and then some. I might’ve made it sound scarier than it is; it’s distressing to read what she’s been through but it’s not something you have to brace yourself for. You just feel terrible for her and the hard part is that it calls up similar experiences of your own that maybe you prefer not to dwell on, but at the same time I found a lot of help in that too. She helped me make sense of one incident from my own experience that I hadn’t properly made the connection for. So if it has moments of resonance and illumination like that, it’s both tough but helpful, and on the whole I found it infinitely more helpful and reassuring than upsetting.

      I am so sorry you’ve had to go through that! Endometriosis definitely falls into this category of misunderstood and dismissed illnesses. Cloak of secrecy is such a good descriptor! She writes a lot here about the shame aspect, which is just so prevalent and damaging and creates additional pressure, like you mention. And all this about it being a patient’s fault, that’s what drives me crazy! I had one doctor tell me, when I was in tears of frustration/exhaustion, that I was “letting this [problem] happen”. As if anyone would choose this. I really think you’d find a lot here that’s helpful, even just in processing what you’ve been through. It felt very meaningful, and like I was being heard in a a way, even just reading her experience.

      Liked by 1 person

  2. I am beginning to realise that illness is very political – this is from recently reading The World I Fell Out Of by Melanie Reid. Healthy people want ill people to act and look a certain way, to conform to an idea of illness. To be “good” patients , grateful and obediently to get better. Also as a healthy person I know it’s very hard to understand what someone is going through unless it happens to you. I also suspect a lot of consultants are extremely clever academically, good at getting the top grades required for medical school but some are not good with people and lack empathy and I suspect some are Aspergers and can’t deal at all with the human side of medicine or can only focus on their specialisation. I should really like to read this book, I have not heard of “functional medicine” I need to educate myself. Thank you for your review and your openness.

    Liked by 1 person

    1. Yes, it’s so strange, isn’t it? We have “idea of illness” as you put it and anyone who falls outside of it is surely suspicious. It is hard to understand what others go through, and that’s why empathy is so important, particularly in doctors and medical stuff. Some of the treatment that she suffered is almost too heinous and callous to believe, and yet I could tell you stories of my own that echo it as I’m sure millions of other women could. And empathy isn’t even the biggest problem here, but like you pointed out there’s this exclusive focus on their specialization instead of bigger picture. That’s something I didn’t touch on here (had rambled enough) but she also mentions — the doctors she saw tended to always think their particular area or research topic was always the key when it was the interplay of systems coupled with long-term damage and stressors. But no one even wanted to put everything together.

      I need to look more into functional medicine too. She doesn’t push it heavily in the book, and emphasizes that everyone is going to have to find their own path and balance, but she’s also firm about certain things that definitely need to change and the idea of the mind-body connection does make a lot of logical sense. I want to know more even if it does seem financially out of reach. Sigh. I hope things will change as the gut microbiome becomes better understood, it’s been a major focus of research lately so that could bring a sea change in treatment as well. Definitely read this one, it’s incredibly good.

      Liked by 1 person

  3. Incredible review! I’m so sorry to hear you’ve experienced some of this difficulty yourself, it’s horrible even to contemplate and I sincerely hope you’ll find your answers. This book sounds like it would pair well with Abby Norman’s Ask Me About My Uterus, even though the exact illness may not be the same. I got a lot out of that book, and it sounds like there’s plenty more to learn here. I’ll be adding this book to my must-read list. Thanks so much for sharing.

    Liked by 1 person

    1. I definitely think it would pair well with that book, which I’m still planning to get to! I’m so glad that there’s been more open dialogue and attention to these subjects, which have just been misdiagnosed, misunderstood, and made shameful for far too long. I think this one is absolutely a must-read, there really is a lot to get out of it even if you’re not ill in any of the ways that are covered here. I would love to hear what you think of it once you get to it!

      Liked by 1 person

  4. One of the things I really love about your book reviews is that you challenge me. When I saw the book title, I was hesitant to read your review tonight … Medical-focused books always make me nervous. There’s just usually a level of bleakness that I have to be in the right mindset to walk into. But seeing things like ‘darkly funny’ and ‘passion’ and ‘hope’—well, that’s something I can get behind. So I’m really glad I ended up reading this. Ramey’s work sounds so important for how we view illness. Having navigated the healthcare system heavily over the past couple of years, it’s wild terrain, so it’s nice to see some humanity being pumped into the discussion. Awesome review. I’m definitely checking this out.

    Liked by 1 person

    1. I’m the same, medical disaster stories are just not the ones for me, they make me nervous too. This one especially made me uneasy because I didn’t want to read something that hit too close to home, but I’m so grateful I changed my mind about it because this was exceptional. Her sense of humor helped so much, as did the incorporation of different literary elements and references. It was such a rich reading experience in addition to the meaningful message. And I agree, there’s a major lack of humanity in our healthcare system. I’m sorry you’ve had to be so heavily involved with that. I think this might resonate with you too. Glad I could convince you of it and thank you so much for the kind words 🙂 Yours always do the same for me! Your writing about The Perfect Predator comes to mind, I would NEVER have touched that one without your review!

      Liked by 1 person

  5. Wow, I really loved this review Rennie and I’m sorry to hear it’s so relevant to you personally. I’m about to read Invisible Women and I think this could make a great paired read. As someone who works in biotech, I’ve been particularly shocked to learn in the last few years about how much women are left out of medical research. It seems like the terrible outcomes from women with mysterious illnesses may stem, in part, from that.

    Liked by 1 person

    1. Thank you so much, Katie! I felt like this review just wouldn’t stop going so I’m glad to hear you still liked reading it 🙂 What you mention is another point she brings up (and this was already too long for me to include) — about women’s health issues and even just general understanding of women’s anatomy and specific problems being so far behind men’s, and it dates back ages. So it’s a major factor for sure.

      I’ve heard so many good things about Invisible Women but haven’t picked it up yet. I think it does seem like a great companion read for this one though! I’m excited to hear what you think of it, I definitely want to get to it soon.

      Like

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