ÁñÁ«ÊÓƵ

What she learned led her on a journey of hope and resilience that represents an all-too-familiar experience for many marginalized people, including women—not being believed.

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The afternoon before her life changed irretrievably, Sarah Ramey ’03 took a swim in Walden Pond.

It verges on cliché to write that someone has barely a care in the world just before disaster strikes, but for Ramey it is hard to remember that afternoon any other way. She was about to start her senior year at ÁñÁ«ÊÓƵ. She was living with her childhood best friend in a summer rental. As the cool water lapped at her skin, if she was thinking about anything, it was staging ideas for Into the Woods—the musical she was looking forward to directing when the semester began.

In the quieter reaches of the Concord, Massachusetts, pond, away from the snorkelers and day-trippers, Ramey floated on her back, staring up at the wide blue sky. Everything was ahead of her. A creative life in New York, perhaps. Interning at a magazine. Or submitting demos of her music. Almost certainly some waitressing on the side. She was, she says, “planning on making plans.”

What happened instead started innocuously enough. She came home from Concord with a urinary tract infection that a following course of antibiotics did not touch. It should have improved within twenty-four hours, the emergency room doctors told her. In fact, as Ramey explains in the introduction to her memoir, it did not go away for six months.

This story might start in Thoreau’s backyard, but it quickly crosses over into the topsy-turvy realm of Lewis Carroll. Back home in Washington, DC, for the Christmas holidays, Ramey made an appointment with a top-notch urologist, who decided then and there to make a tactical rip in Ramey’s urethra—a disastrous decision—to “break the cycle of pain.”

Shortly after, she developed sepsis—a systemic overreaction to an infection that can lead to organ failure. Ramey recovered from the sepsis, but now there were new problems. Aching. Daily fevers. Itching. Excruciating “broken glass” pelvic pain. Intestines that felt like they’d been piped full of cement. Brain fog. Fatigue.

After the winter break, “it all fell apart,” Ramey says. She returned to ÁñÁ«ÊÓƵ with painkillers and a portable IV for more antibiotics. But she got worse, not better. She saw a nurse and doctor on campus, who both said her case was too complicated to treat locally and that she needed the help of her specialists back in DC.

In her memoir, she writes: “I was on so many medications and getting so sick so fast, it was like a rabbit hole had opened up beneath me—that I was falling slowly past the clocks and candlesticks, and that my parents and doctors were peering over the edge, quietly watching me float down and away.”

So began Ramey’s eighteen-year voyage of baffled specialists, inconclusive tests, and many invasive and ultimately unsuccessful procedures. She would be prescribed medications to do one thing and her body would do the complete opposite. Over time, she would be told—both by conventional medical doctors and alternative practitioners—that because they could find no cause for her illness, it must be in her head. She just needed to try a different antidepressant. Or a more positive mental attitude. She dutifully tried both. She kept getting worse.

Ramey kept falling: out of a normal life of beach trips, boyfriends, performing, and spontaneity; out of sight, confined first to the house and then eventually to her bed; out of medical answers. But—as she puts it, with wry defiance—“they sent the wrong girl down the rabbit hole.”

Today, Ramey is not just an author but a successful singer, known as Wolf Larsen (her Nebraskan grandfather’s name). The daughter of two doctors and the granddaughter of a pioneering, feminist endocrinologist, she was better equipped than most when it came to navigating the underworld of modern medicine. As a writer, she also had the skills to report what she found there.

It is not a straightforward story to tell. There were several false dawns, a panoply of diagnoses, and absolutely no miracle cures. Ramey still lives with a constellation of complicated and poorly understood chronic conditions, including complex regional pain syndrome, myalgic encephalomyelitis (sometimes referred to as chronic fatigue syndrome or ME/CFS), and postural tachycardia syndrome (POTS—a disorder of the autonomic nervous system, which controls unconscious bodily functions, such as blood pressure and heart rate).

Yet her health is tangibly better than during what she terms her “Great Crash” of six years ago. At that lowest of low points, she could barely move, had to use a wheelchair, and spent most of her day on the bathroom floor, curled in a nest of blankets. Her digestive system could only tolerate broth and juice, which often had to be fed to her by her mother. Anything but total isolation was too much for her.

Today, Ramey is well enough to sit at a desk and write, she can sing (“my old standby medicine for the soul”), eat real food, do gentle yoga, and very occasionally visit a museum or café. But she still has to be careful in ways few healthy people could imagine. “I have to budget my energy like the stingiest miser,” she explains.

It is far from a soaring, sunlit recovery. Ramey’s vision—and mission—is bigger, though. While she says it is “an absolute victory that I got out of that deepest, darkest hole,” the true purpose of her writing is to make a whole spectrum of mysterious conditions better understood; to make the invisible visible.

Through painstaking research presented alongside her own painful experience, Ramey attempts to connect the dots between apparently disparate chronic conditions, such as the pain disorder fibromyalgia, ME/CFS, post-treatment Lyme disease, non-celiac gluten sensitivity, and various shades of autoimmune disease, such as lupus, the bowel condition ulcerative colitis, and Hashimoto’s (a disease of the thyroid gland).

Fifty million Americans have some kind of autoimmune disease, according to estimates by the American Autoimmune Related Diseases Association. It takes, on average, consultations with five doctors before a correct diagnosis is made. Meanwhile, ME/CFS has been labeled “America’s hidden health crisis” by the US Centers for Disease Control and Prevention, affecting as many as 2.5 million people.

What such conditions tend to have in common is that their key symptoms—pain, debilitating fatigue, and clouded thinking—are hard to measure in any objective way. They have no biomarkers. They cannot be scanned or biopsied. They’re also not necessarily visible from the outside: a common refrain for patients is, “But you don’t look sick!”

It’s a phrase Ramey has heard often, one that gives away how narrow our view of illness can be. In fact, in the early days of Ramey’s mysterious illness—pre-crash—people often commented on how well she looked, in part because of changes she’d made in an attempt to heal herself: no sugar, no dairy, no gluten, lots of yoga and green juice. It was, as she writes in the book, perhaps “the most complicating factor of all. Not only was I slightly radiant but, because of the pain in my central cavity, I was always, always in some kind of flowing, pretty dress. More than a few doctors implied that, whatever seemed to be the problem—it suited me.”

“There are a lot of illnesses that are very serious but invisible,” Ramey says. This cloak of invisibility—the veneer of wellness—means they are overlooked, underestimated, and underfunded. She gives the example of ME/CFS, which was found by a 2020 study to be the single most neglected disease relative to the condition’s burden. The authors suggested that NIH research funding into the illness would have to increase fourteen-fold to be in line with the severity of impact on ME/CFS patients’ quality of life. Speaking from experience, she says: “At its most severe, you just feel like every hour you’re going to die. You can’t move. You can’t eat anything. It’s almost like a living death.”

Yet Ramey’s book is no misery memoir. She never lets the reader stay in darkness and difficulty for too long. There are bemused, self-deprecating jokes and strategically deployed puns. She christens the many, many doctors she sees with nicknames like “Dr. Vulva,” “Dr. Bowels,” and “Dr. Oops.” She actually began writing in “a more typical memoir voice: this wistful, sad, unendingly sorrowful retelling.” She threw those early drafts out. “I thought: this was not who I am. And it doesn’t work for the material.” She thought a story like hers—“that has these difficult, confronting, vaginal, poop-related things”—needed the “leavening agent” of humor. She also saw it as an act of kindness to her readers, many of whom she assumed might be similarly sick. “I wanted to be honest and unflinching about the really bad stuff, but to take care of the reader also, and make sure that they’re not being too brutalized, triggered, or traumatized.”

For readers, the jokes serve as kind of a nod to camera, a knowing eyebrow that says, Listen, I know how mad this all sounds. Because possibly the strangest facet of illnesses like Ramey’s is not a lack of detailed, evidence-based understanding, although that’s true—it’s that many physicians still don’t believe they exist at all. Or they remain convinced the symptoms are psychosomatic.

Ramey recalls in her book how she was warned by doctors not to say she had fibromyalgia. “Fibromyalgia, they explained, is just code for ‘crazy.’” A survey of primary care physicians in Connecticut in 2010 found that half did not “believe” in the concept of chronic, post-treatment Lyme disease. Even Ramey’s own doctor parents were skeptical about some of the diagnoses and experimental treatments at the beginning of her health crisis.

Why, though, should such skepticism exist on an apparently industry-wide scale? Why are certain kinds of illnesses downplayed and dismissed? According to Ramey, this is the least mysterious thing about these conditions. “It’s because they really disproportionately affect women,” she says. At least 75 percent of autoimmune disease patients are thought to be women. ME/CFS affects four times as many women as it does men. Between 80 and 90 percent of people with fibromyalgia are female. There is also some evidence—albeit limited—that post-treatment Lyme disease may be more prevalent in women.

Medicine has a long tradition of ascribing physical symptoms to women’s instability. From the Ancient Egyptians and Greeks, who believed unexplained illness in women was caused by a “wandering womb,” to Freud, who gave us the idea that psychological disturbance could cause physical symptoms, hysteria has been used as a diagnosis to cover all manner of mysterious and inconvenient female complaints, from difficulty swallowing to a swollen stomach. The term wasn’t completely expunged from medical textbooks until 1980.

“It’s really difficult for me to imagine these patients being male and it being shoved into a closet,” Ramey tells me. “I just don’t think that would happen.” Later, she reflects: “I don’t think doctors realize how damaging it is psychologically to sense that your doctor thinks you’re lying to them. You can’t blame the patient because you don’t understand something.”

How Ramey's life has changed since ÁñÁ«ÊÓƵ is something she thinks about often. She sang in an a cappella group. She directed a musical. She wrote for the Orient. She kayaked on the weekends. “ÁñÁ«ÊÓƵ was the best time of my life,” she says. “I made wonderful friends. I was super active. I have the fondest memories.”

And now? “I do feel very, very different to the person I was in college. It is a strange disconnect. I walked through the wardrobe—through the mirror—into a different world.” She likens her medical odyssey to witnessing a war. To then have to “drop back into regular society feels strange.”

Something about this piece feels different from other press coverage for her book, she tells me—more exposing, perhaps. “I so long to just be the person I was on track to be,” she explains. “Thinking about this story in the context of ÁñÁ«ÊÓƵ is a wistful, sad feeling. Because I remember exactly what I thought was going to happen. I know everybody’s life turns out differently to how they anticipated, but usually not like this.” She laughs easily as she says it—as is her habit—but “this” encompasses a lot of near-unimaginable pain and trauma. Having nerve-stimulating wires embedded in her pelvis by one doctor without her knowledge or consent, for one thing. (That would be “Dr. Oops.”) “But then, in a lot of ways, I am still the same,” Ramey adds. “I’m making music and writing—those were the two things I wanted to do in college. I cannot believe I ended up doing both of them.”

In the early days of being unwell, creativity was an outlet for Ramey when there was little else available. Despite being unable to tour, or even to perform with any regularity, an album Ramey made from her bedroom in 2011, Quiet at the Kitchen Door, has been listened to more of than 50 million times on YouTube. In her book, she describes the peculiar sadness of watching her Wolf Larsen avatar go viral, in lipstick and heels, while she was back in the house she grew up in, rarely out of her nightgown. “From an invisible cage, I gripped the bars and watched as my windup-self took on a life of her own and moved on without me,” she writes.

Now, though, her creative life and the reality of her illness seem to have found more of a symbiosis. Ramey recalls how Joan Didion once said in a