In this interview, Editor-in-Chief spoke with writer Sarah Ramey about her debut memoir, The Lady’s Handbook For Her Mysterious Illness (Doubleday), a book that examines the author’s years-long battle with an illness that doctors found themselves unable to diagnose and the overall treatment of women’s pain in the U.S. healthcare system. Here, she discusses the role structure plays in the work, the process of healing through research, and why she does not mind calling herself a “hope monger.”
Sarah Ramey is a writer and musician (known as Wolf Larsen) living in Washington, DC. She graduated from Bowdoin College in 2003, received an MFA in creative nonfiction writing from Columbia in 2007, and worked on President Obama’s 2008 campaign.
This book was nearly twenty years in the making, it seems, from your first physical symptoms to this publication date. When exactly did the idea to turn it into memoir come to mind? When did you feel comfortable working with the pain to turn it into art, to share the story?
This was one of those stories that no matter what you do, it just comes barreling out every time you sit down to write. I kept trying to work on a longer piece about my grandmother, but instead an essay about the very bad thing that happened in my urologist’s office kept elbowing its way onto the page. This is clearly because I needed it on the page. I needed to control a narrative that was fundamentally slipping out of my control the further I fell down the medical rabbit hole. Writing was the only way I could get any purchase on reality—because I was being told at every turn that I was wrong, stupid, crazy, and nothing but an irritant and waste of time in the medical system—when in real life, I was actually quite sick, and suffering to a tremendous degree. Writing my story down was at that time the only way of reclaiming it.
You were a student in the Columbia MFA program. I believe you were working on a different project during the course, but what relationship does this book have to your studies? How do you feel your writing has evolved since graduating?
The wonderful Patty O’Toole will probably remember this well. I had come to the program with an intention of writing a biography of my grandmother—an endocrinologist and feminist from the 70s and 80s, who was a prominent advocate for women’s health—but every time I sat down to work on the biography, I ended up writing about my own women’s health problem. I couldn’t help it. And the two were not unrelated—the nightmare I was experiencing in the medical system was exactly the kind of thing my grandmother would have taken on, written about, lectured about, and fought to change. Many times, I wished she was alive to accompany me to my appointments—she being the single most quick-witted, undaunted, razor-tongued woman I have ever even heard of, and what a joy it would have been to have her as a protectress in some of these offices.
So that biography is still on the back burner, but now that I have finally finished The Lady’s Handbook I’m hoping to go back and finish what I started.
As for how my writing evolved—during the program, I really felt that I was finding a voice of my own, one that I enjoyed living in that made writing fun. But later, and I do think there was co-incident with starting to become a songwriter; my writing did start to take on a more rhythmic quality. Not poetic or lyrical, but I became significantly more attuned to pacing and dynamics—when to be loud, and when to be quiet, when to be quick, and when to be slow.
The structure of this book is in chapters composed of small vignettes and a number of page breaks. How did this shape help you best work with the story at hand? Why did you choose to employ it?
This is an incredibly dense, dark story.
And so to me, the only way to tell it in a way that would actually work, and would actually be tolerable to the reader, was to make it mostly quick and light.
This was the original reason I started to employ the use of short sections, but as I went along I began to realize that this made it much easier for me personally—part of my illness involves a tremendous amount of brain fog, and so it is easy for me to get lost in long, complex paragraphs. It helps me to have small chunks to focus on, and even to have small chunks within the small chunks.
If you’ve read the book.
That would look.
Something like this.
Every now and again.
And additionally, I’m really hoping this style will make it easier for the people who are like me—the WOMIs AND MOMIs (women with mysterious illnesses, men of mysterious illness) who also have brain fog, who are sick, who are in pain—to read this book with relative ease.
Research subjects are a massive part of the book. Did you ever feel overwhelmed by how much material seems to be packed into the text? Are there any threads that did not make the cut that you want to pursue further?
I see you have picked up on the fact that the research in this area is so vast and so disparate as to seem almost limitless.
This was the central challenge of this book—how far do I zoom the camera out in order to see the full picture, but not zoom out so far that I leave the earth’s orbit?
This is also for certain why it took so long to write (aside from the fact that I was also writing through an incredible amount of pain and illness, which does slow you down). It just didn’t feel like enough to me to simply describe the traffic jam of illnesses and syndromes and symptoms, or to simply describe the experience of patients, and just leave it with a big shrug emoji at the end. I really wanted to understand, to try and find the threads that pulled all of this together—to understand the illnesses themselves and how they relate, but also to understand the sociological and psychological underpinnings that are driving the way we treat (or don’t treat) these illnesses. It just never felt complete without that sense of understanding.
That said, there is obviously so much more to know about these diseases. The whole reason they are “mysterious” is because they have barely been studied. That’s it. It’s a lack of data, not a problem that defies comprehension. Therefore, what I have outlined in the book—even though it is indeed quite a lot—is just a rough sketch. There is so much more to know about these problems. I will certainly be keeping an eye on developing research—particularly about the microglia, central nervous system inflammation, the cell danger response, the CRF2 receptor, and some newer findings about how central nervous system inflammation may actually drive structural changes in the spine and the dura. And, of course, how all of this may relate to the microbiome (my original passion which I write about at some length in the book).
I’m also interested in investigating and reporting on stories of patients who have gotten better—because this community needs all the hope it can get.
The stories of a number of women who have suffered with mysterious illnesses similar to yours and received doubting, negative experiences with doctors seem central to the book. What did you learn about the WOMI community that surprised you? Do you think that enough women who suffer from such conditions are aware of others also suffering?
#MeToo, I believe, has changed everything. In addition to impact it has had on the conversation (and litigation) allowed when it comes to sexual abuse and sexual violence, the #MeToo movement has also made a crack in the silo walls where WOMIs have been quarantined for too long. I have noticed that in this new era, people feel much more empowered to speak up for themselves, to tell their stories, and to trust that despite being told they are malingering, hysterical shrews, that they are instead exactly what they know themselves to be. Sick. And just like any other sick person, they deserve care, dignity, and respect. And they are willing to speak up for those rights.
But there is only a small crack in the silo, and so what I hope to do is take this book, wedge it in, and push just as hard as I can. I want to make space for more people to speak up and tell their story of being sick and disbelieved. And I think most people have no idea how big this community is. It’s just like the #MeToo tidal wave. Another massive but invisible problem that no one really wanted to see—until the dam broke.
Questions of gender are repeatedly explored in the book, particularly in regards to the specificity of the pain women have with these illnesses and the responses from doctors (or lack thereof). Coming from a family of doctors, how did the many experiences you had color your opinions of the field, and your opinions of doctors across specialties and genders? Why don’t you think people talk about how different it is going to the doctor as a woman?
I come from a family of wall-to-wall feminists, that is also chock full of doctors. So I was not primed in any way to think that doctors were dismissive, or that there was an issue with the way doctors treat women. I really grew up feeling that doctors were heroes, and that most sexism in medicine was a thing of the past.
Because of this, it took me a very long time to see that the problem I was experiencing was not my fault, and not secondary to some glitch in my psyche—but actually a problem in the medical system, and a glitch in the collective medical psyche.
And I don’t think you have to have doctor-feminist parents to place a great deal of faith in modern medicine—I think most of us who grew up before the aughts absolutely do, and for good reason. Modern medicine is extraordinary and deserving of all the honor and respect it accords—but it is not without flaws and cracks, and this issue of believing female patients (indeed, of believing all marginalized patients) is a real, provable issue. Black patients have been shown to have their pain taken less seriously. Poor patients receive poorer care. But what happens with women is a bit different—doctors won’t just diminish the importance of what the patient is saying and take it less seriously (though they certainly do that) —they go so far as to assert that these huge, mostly-female patient populations like mine are making the disease up out of whole cloth. That is next level, and it is exactly what happens to virtually all patients with the “mystery” illnesses.
As for why people don’t talk about it, my guess is this is because no one wants to be stigmatized as a malingering, hysterical shrew.
The book seems to argue toward a more holistic approach to understanding health—mental, physical, spiritual—in order for everyone, most especially women, to receive better care. Do you feel this way? Do you think it would help prevent others from enduring stories like yours?
Yes, though I think it is more complex than just recommending “wellness” to patients. Doctors do pay some lip service to this already— “eat less, exercise more.”
This is not enough. I think that you can pretty clearly show that a lot of modern, chronic illness is coming from the modern changes we’ve made to the diet, the microbiome, and lifestyle—and so working with patients to educate them about this, to emphasize that this is part of your actual, medical prescription for them, and to support them in making the changes necessary is all important. Because there is good data (and a mountain of anecdotal evidence) to show that these habits together can often reverse, or partially reverse some of these chronic problems. That being the case, I think it is very important that we start here, instead of starting only with medications (or worse, starting nowhere and telling the patient they are not sick in the first place).
That does not mean that medications do not have an important place—of course they do—but over-relying on them, and ignoring diet/the microbiome/sleep/stress/exercise is in my opinion irresponsible. If you built a house on a poor foundation, and it started to crumble—the recommended response wouldn’t be to keep propping it up with planks and poles until it finally collapsed. The response would be to slowly, and with some difficulty, go in and repair/replace the bad foundation with a good one. That’s the only long-term solution. And one has to imagine the house feels a lot better sitting on a strong foundation, rather than sitting on a rotting one that’s leaning at a 90-degree angle.
That said, I would never suggest that a more holistic approach is enough, or that it would have prevented my problem completely. We absolutely need to aggressively ramp up funding for these forgotten diseases and need to develop medications that can help us halt these disease processes in their tracks, and/or help reduce the level of suffering.
It’s both. We need both.
You leave the reader with a kind of hope and optimism toward the future for WOMI. Why did you think this was an important conclusory note, and what does that shape of hope in terms of women’s healthcare look like for you?
As a former Obama campaign staffer, I am a certified hope monger. It is in my nature. But false hope can be damaging, and so I would never offer it to other WOMIs if I didn’t think cause for hope was on the horizon.
It’s fascinating—I always thought that the hardest boulder to push up the mountain was going to be convincing people to get into self-care and wellness. Wrong! Wellness is everywhere now and has absolutely tipped into the mainstream—as a direct result, I think, of everyone being so unwell.
And so now the biggest challenge facing WOMIs is the catastrophic neglect from the National Institutes of Health (NIH). All the WOMI syndromes and diseases suffer from this, but the most glaring example is certainly chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS). ME/CFS has a budget of $14 million dollars. For context, eczema has a budget of $32 million dollars. And the Big Bads, cancer and AIDS, both have over six billion dollars allotted (each) in funding.
That ME/CFS—which affects between one and two million people, and leaves a quarter of those people completely and totally bedridden in a state universally described as “living death” —is receiving half the funding of an itchy skin condition tells you everything you need to know about the WOMI state of affairs.
And so I can understand not having hope.
Because things are clearly changing—ask any advocate in the community. You can feel it.
The reason to be hopeful about our admittedly abysmal situation is that the NIH has slowly (in fits and starts) been increasing its levels of funding over the last five years—and this indicates that they know their position is untenable. As the advocacy grows stronger in our community, which it absolutely is, and as we become less ashamed and more willing to be public with our stories, which we absolutely are, and as people who are not sick start to speak out on our behalf (there’s a good story about this at the end of The Lady’s Handbook) —I believe we can change hearts and minds at the NIH and get the funding these problems so badly deserve.
And if hearts and minds doesn’t work, I will chain myself to their front door.
I am, after all, a hysterical shrew.