Sarah Ramey’s The Lady’s Handbook for Her Mysterious Illness is at once a comforting embrace and a call to arms for people (mostly women, alas) who experience mysterious chronic illnesses. The book is a figurative finger, trembling with rage, pointing directly at the deeply held sexism at the root of so many problems in American health care. It’s also a funny, honest, often beautiful recounting of the author’s personal journey through illness after illness after illness, during which she maintains her hope and optimism.
Ramey spoke with BookPage about her powerhouse memoir in a call to her home in Washington, D.C.—an auspicious conversation, considering that getting her book to publication has been such an astounding journey, thanks to years of health challenges. “I wrote it over a 15-year period,” she says. “It’s so funny—someone told me I’m the most overdue author they’ve ever encountered!”
“It became clear that mine was not a psychological condition. It was a problem in the psyche of the doctors—the programmed assumptions, unconscious bias, prejudice against this type of patient, particularly against women.”
That’s impressive in its own way, of course, but Ramey used the delay as an opportunity for more research, and thus more potential for greater impact. “In the beginning, nobody was talking about [the things I was writing about],” Ramey says. “I don’t think the microbiome was even mentioned in the original proposal, and gut health was not yet a common term . . . but as every year has gone by, it’s come more and more into the mainstream. . . . I learned so much in that interim period.”
The author has conducted an enormous amount of research into the conditions common to what she calls “WOMIs”—a “woman with a mysterious illness” who is “exhausted, gluten-free, and likely in possession of at least one autoimmune disease. She is allergic to . . . (everything), aching from tip to toe, digestively impaired, and on uneasy terms with her reproductive system. She is addled, embarrassed, ashamed, and inflamed. She is one of us.”
Clearly, being a WOMI isn’t an easy existence, not least of all because the inability to diagnose and prescribe a sure fix for these conditions typically leads to skepticism and dismissal from medical practitioners. And it definitely doesn’t help that WOMIs may not always look sick. The number of times Ramey (who has gyno-rectal disease, gut issues and more) has been dismissed, doubted, scoffed at and much worse—botched surgeries and unapologetically cruel doctors, for starters—is staggering.
But Ramey is an engaging and witty narrator, and readers will nod along with her as she describes the arc of her reactions to such treatment. In the beginning, she says, “I was a lot nicer to doctors” who treated her poorly because—well, she needed them. But as time went on and her motives and sanity were repeatedly questioned, Ramey got angry. She began speaking up for herself, and she began writing the book so that other women like her wouldn’t feel alone. (And these women are legion. Autoimmune illness numbers have tripled in the last 30 years.)
ALSO IN BOOKPAGE: Read our review of The Lady’s Handbook for Her Mysterious Illness.
The author says she believes the American health care system can and must change. “It became clear that mine was not a psychological condition. It was a problem in the psyche of the doctors—the programmed assumptions, unconscious bias, prejudice against this type of patient, particularly against women,” she says. “If you can’t prove what’s wrong with you, it’s much more likely you will get swept away. That is part of the culture, and it’s wrong, and it’s very difficult to combat as a single person in the moment because of the power dynamic.”
For Ramey, changing her mindset has been a key part of her adjustment to living with chronic illness. She writes, “In the alternative medicine world, following your bliss is highly correlated to healing.” Thus, rather than pushing through the pain and trying to get better faster, she’s engaged in “a lot of phases of trying to figure out how to make my life as good as it could be within really tight parameters.” That’s included adopting a cat (who was “right here looking at me encouragingly” during our interview), as well as inhabiting her singer-songwriter alter ego, Wolf Larsen, whenever she can.
Ramey says she hasn’t performed in the last couple of years because she’s been having “surgeries and interventions to reconstruct and make things better” in her poor, beleaguered pelvis, “but when things quiet down and this overdue book is out, I’m going to record an album I’ve had written for quite a while.”
She adds, “I’m a hope-monger! I used to say every year, ‘This is the year I get better and do this many shows.’ I don’t do that anymore. I now accept that I’m a studio musician I’m not going to perform live very often, and that’s fine.” (However, her all-female band, GlitterSnatch, does plan to perform at a couple of her book events.)
And when it comes to The Lady’s Handbook for Her Mysterious Illness, Ramey says, “I’m hoping that it can help change the conversation a little bit, the dynamic between the patient and the people around them. A main goal for me is to be another person helping to make this invisible problem visible.”
Author photo © Julius Schlosburg.
