She thought she had mono. Then she decided she was bipolar. To her disgust, a famed New York City neurologist told her that she simply worked too hard and drank too much.

Susannah Cahalan’s mix of Google-search self-diagnosis and hit-and-miss expert opinion might have been comical if her situation hadn’t been so dire. At the age of 24, Cahalan, a reporter for the New York Post, began feeling less and less herself, then had a seizure, and then ended up in the hospital for a month, out of her mind for most of that time, while a small army of doctors and medical researchers tried to figure out what was wrong with her.

“It was one of those things that wasn’t completely obvious at first,” Cahalan says, remembering the onset of her mystifying disease during a call to the apartment in Jersey City she shares with her boyfriend Stephen, one of the heroes of Brain on Fire: My Month of Madness, her book about this harrowing experience. “Maybe if I had been working a more stable or less exciting job, I would have been more aware of what was going on. But because I was working at the New York Post and there are so many highs and lows to journalism, I wasn’t aware of the fluctuations.”

Stephen (her boyfriend of just six months at the time and a colleague at the Post, where she had begun working as a “copy kid” at 17) and her estranged parents, however, had become increasingly alarmed by her behavior just before her seizure. Later they would all become key informants as Cahalan tried to piece together what had happened to her during her month of madness.

“It’s so hard for me to get to that person again,” Cahalan says. “I did a lot of yoga trying to access these hallucinations and these lost memories. . . . I wrote by hand, which I thought would maybe help me better access these things. I do remember things, but I don’t know if it’s because I’ve spent so much time writing about them that I’ve created these memories.”

"People who don't have a diagnosis have to be their own advocates. It's important to question medical authority."

So Cahalan’s efforts to write Brain on Fire became an attempt both to reconstruct how she became the crazy person she briefly was and to understand the science that led eventually to a successful diagnosis. Early drafts of the book, Cahalan says, were very “science-y.” The published book tends—reluctantly, she says—more toward memoir. Readers will likely find it a swift read, an intriguing mix of scientific detection and personal story. Cahalan includes excerpts from her medical records, from videos of her bizarre behavior in the hospital, and from her follow-up interviews with the two doctors at the University of Pennsylvania—Dr. Souhel Najjar and Dr. Josep Dalmau—who cracked her case.

Diagnosing her illness required a battery of sometimes redundant tests including CAT scans, blood tests, MRIs and a gruesome-sounding brain biopsy. Eventually, Cahalan became only the 217th person to be diagnosed with anti-NMDA receptor autoimmune encephalitis, a rare form of autoimmune disease.

Cahalan says one of her hopes is that Brain on Fire will in some measure help people with undiagnosed conditions and raise awareness about autoimmune diseases. “The brain gets all the attention,” she says. “But when I was researching the science for the book, I realized we are just at the beginning of understanding how important the immune system is. Auto­immune disease is an amazing, emerging field of study. Right now 50 million people in the United States have an autoimmune disease. They’re especially common in women, which is a mystery. The research that’s being done now is basically blurring the lines between immunology, neurology and psychiatry. It’s very exciting.”

Treatment for Cahalan’s disease was considered experimental at the time. It involved a regimen of nearly 20 intravenous immunoglobulin (IVIG) injections at $20,000 a pop. The total cost of her hospitalization and treatment? Something to the north of $1 million, she says.

In the final section of Brain on Fire, the section Cahalan found most challenging to write, she describes her long recovery and reflects on the physical and emotional challenges she faced after she left the hospital. On the plus side, she has grown closer to her father, who was distant from her after her parents’ bitter divorce. For the length of time she was in the hospital, her parents united to become her chief advocates. “People who don’t have a diagnosis have to be their own advocates. It’s important to question medical authority. I couldn’t be my own advocate in the hospital because I couldn’t be there for myself. But my parents were.”

Cahalan’s boyfriend Stephen was her “rock in the hospital. The fact that he came every day when we’d only been dating about six months was amazing.” But trouble loomed when she came home to recover. “I was dead set on moving ahead. I was getting better. I was back at the Post. Everything seemed fine, but he knew I still wasn’t 100 percent. It was a scary experience for him. I think it changed him and he became a different person. Now it’s been three and a half years since I was in the hospital and we’ve worked that out.”

Still, the question of how fully she has recovered remains. When her doctors finally reached the correct diagnosis, they told her that treatment would bring her back to about 90 percent of normal.

“It’s hard for me to say if I’m 100 percent recovered,” Cahalan says. “I know I’m different from the person I was before and I know that has something to do with my illness because it was a huge life experience that I think about every day. But I was 24 then, I’m 27 now. I don’t know how much of my change is due to getting older and being in different life circumstances and how much of it has to do with surviving this illness.”

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.