science of us

Me, Lady Gaga, and the Medical Establishment That Failed Us Both

Photo: Courtesy of Netflix

When I read in the news this week that musical artist Lady Gaga was suffering from fibromyalgia, I winced. I know that pain too well.

Last January, I fell ill with what I thought at first was the flu. Over the next few months, it waxed and waned mysteriously. The pain, exhaustion, and brain fog grew so intense that taking my daughter to the playground was out of the question; even venturing down the block to the grocery store would leave me bedridden for hours. My strange, debilitating symptoms overwhelmed me. I went from doctor to doctor before I finally received the diagnosis of fibromyalgia, joining the ranks of 4 million American women whose lives have been transformed by this chronic illness.

On Twitter, Gaga writes that she is “disappointed to see people online suggest that I’m being dramatic, making this up, or playing the victim.” I had a similar experience: Before I was diagnosed, my own doctor brushed off my reports of pain and exhaustion for months, warning me to “trust the team” at the office and quit Googling. An allergist asked me with a leering smirk if I was “an allergic little girl,” and then, after examining me and looking over my by-now encyclopedic folder of medical tests, said: “You’re clearly very healthy.”

None of my doctors seemed to appreciate the severity of my symptoms, or the fact that it takes a lot to slow me down. As a teenager, I had been thrown out of my ultra-Orthodox family and raped, twice, as I lived in poverty, struggling to survive. But that was years ago. I’d since earned a graduate degree from Harvard and written a memoir about my experiences. I’m a survivor, and there are millions like me. Take Gaga, for instance: a rape survivor who went on to become one of the best-selling musical artists of all time with six Grammys, a Golden Globe, and a philanthropic foundation doing transformational activism on LGBTQ issues. How can anyone question the intensity of Gaga’s drive, or the severity of an illness powerful enough to get in its way?

Science writer Julie Rehmeyer, who suffers from chronic fatigue syndrome, summed up the problem perfectly. “When you have a poorly understood illness,” she told me, “too often, doctors don’t believe your testimony about your own body, and you watch yourself transform in their eyes into a hysterical woman. This same dynamic is rampant throughout women’s health — we’re all affected by sexist ideas about women’s emotionality and irrationality.” Unfortunately, women have faced this kind of reaction for a very long time. In the 19th century, women’s complaints, many of them stemming from sexual trauma, were dismissed with the catchall diagnosis of “hysteria.” Even today, doctors often disregard women’s heart attack symptoms, leading to a doubled rates of fatality in women under 50 compared to men.

To many women suffering from lesser-known ailments, alternative medicine offers some hope. It’s an industry rife with misinformation and abuse, with Dr. Oz shilling supplements to a predominantly female audience of millions and Gwyneth Paltrow hawking $66 vaginal rocks to increase a woman’s “chi, orgasms, vaginal muscle tone, hormonal balance, and feminine energy.” But when mainstream medicine failed to take me seriously, I didn’t know where else to turn. I saw a Chinese herbalist and then an integrative MD, who gazed into my eyes and gasped with empathy as I told my story.

The integrative MD cost sixteen-hundred dollars, out of pocket. Unlike the doctors my insurance covered, she seemed deeply invested in every detail of my experience. She diagnosed me with intestinal parasites, insisted that a stool test to confirm their presence was unnecessary, and started me on an ever-expanding regimen of supplements and intestinal cleaners. Later, my GP checked my poop: no parasites.

I was back at square one. I felt trapped between the condescending dismissal of the medical Establishment and the predatory embrace of alternative medicine. I felt as if there was no one I could trust.

My doctor finally sent me to a rheumatologist, who diagnosed me with fibromyalgia after a physical examination of key pressure points. “There’s no cure,” he said. “Treatment consists of pain medication and antidepressants.” I took a cab home, my ears ringing. There goes my life, I thought. There go all of my dreams.  My husband said we needed to stop being in denial. We needed to think about getting me a wheelchair. He told me that even functioning at 20 percent, I was still the woman of his dreams. I sobbed so hard I thought my ribs might pop.

Fibromyalgia is a silent epidemic that devastates millions of lives. In one study of fibromyalgia patients, half the participants had to stop working for income altogether. In a Canadian study, fibromyalgia and chronic fatigue syndrome led to moderate or severe household food insecurity at rates far higher than other chronic conditions like diabetes, cancer, mood disorders, or heart disease. Yet not many people seem to know much about this “female” illness — somewhere between 80 to 90 percent of people diagnosed with fibromyalgia are women — unless they have firsthand experience.

Once I learned that my condition skewed so heavily female, I began to wonder about the relationship between fibromyalgia and sexual trauma. I discovered a study in the Clinical Journal of Pain that showed rates of prior rape in women diagnosed with fibromyalgia are three times those of the general population. Things started to fit together: Long before my fibromyalgia symptoms appeared, I had often experienced physical pain when past trauma was re-triggered.

Yet none of the many doctors I saw were interested in my experiences of trauma. Our culture divides the psychological from the physical, as if the brain were an ephemeral organ that floats above the body, like a balloon bobbing over a robot. But to me, my brain and body felt more like a tree: the undigested traumatic experiences in my mind had roots that stretched into my chest and limbs. While my doctors examined my body and my therapist examined my mind, no one seemed equipped to look at the links between the two.

My own story does have a happy ending. Ignoring my doctor’s advice, I kept Googling, and found online communities of women sharing their stories of suffering and healing. Eventually I arrived at my own explanation for what was going on: Poisoned by the toxic black mold we had recently discovered in our apartment, my brain’s limbic system — which regulates memory and emotion and can be altered by traumatic experiences, like rape — became trapped in a cycle of overreaction to trace mycotoxins released by mold.
Drawing inspiration from the online fringe community of “mold avoiders” and from Annie Hopper, a “core belief counselor” who treats chronic illness with a speculative “limbic system retraining” program, I built my own treatment plan with my husband. Today, I’m mostly symptom-free. I can now bike 20 miles in a day. I can chase my daughter around the playground. I have my life back.

Such stories are increasingly common as women benefit from the experiences, and experimentation, of other women, but this shouldn’t be the only resource we can rely on. Too many lack the resources for such exploration. I don’t know if my personal journey might be of help to other sufferers, but I do know that we deserve better answers. The only way that’s going to happen is if we insist that the medical Establishment take our experiences seriously. I’m grateful that in Lady Gaga’s new documentary, Gaga: Five Foot Two, she is brave enough to join the chorus. Not many can hit a note like her.

Leah Vincent is the author of Cut Me Loose: Sin and Salvation After My Ultra-Orthodox Girlhood. Her writing has appeared in the New York Times, Salon, Unpious, and the Jewish Daily Forward. Leah was a Pforzheimer Fellow at Harvard University, where she earned a master’s degree in public policy. She has been named to the Jewish Week’s 36 Under 36 and the Jewish Daily Forward’s Forward 50. She lives with her family in New York City.

Me, Lady Gaga, and the Doctors That Failed Us Both