Millions of Women Suffer from a Disease That Virtually Sucks the Life Out of Them—But Doctors Still Don’t Take

Jen Brea was bedridden with mysterious symptoms for more than two years. Now she's fighting to be heard.

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(Image credit: Jason Frank Rothenberg)

Jen Brea was a 28-year-old grad student at Harvard when her health began to deteriorate after a 104 degree fever. She spent a year searching for an explanation for her recurrent infections, profound dizziness, and disturbing neurological symptoms, only to be dismissed by doctor after doctor. She was just stressed. She was dehydrated. There was nothing wrong. A neurologist told her she had conversion disorder, a psychiatric diagnosis that used to go by another name: hysteria. He suggested that her symptoms were the product of her “unconscious mind,” caused by a repressed trauma she couldn’t remember.

Skeptical but desperate for an explanation for her symptoms, Brea decided to push herself to walk the two miles back from her neurologist’s office to try to figure out how her mind was making her symptoms happen. When she got home, she collapsed in pain. Her brain and spinal cord felt like they were on fire. After that night, she was bedridden for most of the next two years.

Brea was eventually diagnosed with myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome (CFS) in the United States. No longer able to read and write, she began an iPhone video diary to document her experience. Her documentary, Unrest, which is out now in select theaters and will be on iTunes next month, features that footage, along with interviews with other severely ill ME/CFS patients, which Brea conducted from her bed via Skype. It provides a harrowing look at what it’s like to live with the poorly understood, incurable disease that’s estimated to affect about 800,000 to 2.5 million Americans.

Unable to find treatment, Jen tries to understand the science and metabolics of her disease in the film Unrest.

(Image credit: Shella Films)

ME/CFS first came on the radar in the mid-eighties after an outbreak near Lake Tahoe drew the attention of the CDC. But it quickly became the butt of jokes—in the public and the medical system alike. The fact that women make up 80 percent of those with ME/CFS had a lot to do with this dismissive reception. While the handful of doctors sounding the alarm about the condition saw patients with a new, mysterious, profoundly disabling disease, most of the medical community apparently saw nothing more than depressed, stressed-out women. One San Francisco doctor who took an interest in the condition in the late eighties recalls being accused by her male colleagues of doing “million-dollar workups on neurotic women.” In the media, the disease got the nickname “yuppie flu,” its sufferers stereotyped as overwhelmed working moms and discontented empty nesters.

Scholars, meanwhile, theorized that the condition was a “culturally-sanctioned flight into illness” on the part of career women trying to take on too much. “‘Liberated’ by feminism to enter previously all-male occupations, women in the 1970s found themselves exhorted to ‘have it all’ by combining a demanding career with a rich and fulfilling family life,” according to a 1992 article in Psychosomatic Medicine. By the eighties, these “superwomen” were supposedly subconsciously looking for an excuse to slow down. A diagnosis of ME/CFS, a 1991 article in The American Journal of Psychiatry explained, provided a “legitimate ‘medical’ reason for their fatigue, emotional distress, and associated psychophysiological symptoms.”

It’s hard to imagine that this kind of blatantly sexist psychologizing would fly in 2017. But ME/CFS paid a steep price for the accident of emerging in the midst of the eighties backlash against the feminist movement. Having largely concluded that ME/CFS must be a psychosomatic illness, the biomedical community didn’t see much reason to research it. In the nineties, the Health & Human Services inspector general found that CDC officials actually redirected millions of dollars allocated to their ME/CFS program to other projects—and then misled Congress about where the money went. The NIH, meanwhile, has devoted about as much research funding to ME/CFS as it does to hay fever. It is only since 2015 that it has started to reverse course, acknowledging that their attention to the disease has been inadequate.

Brea is convinced that one reason that ME/CFS has been neglected is that much of the medical community—and the public—just doesn’t have an accurate understanding of how incredibly sick ME/CFS patients can be. One patient featured in her film hasn’t had the energy to speak in a year; another hasn’t stepped foot on solid ground in six. Brea herself has been confined to her home, and often her bed, often over the last six years. These days, thanks to four years of treatment, she’s improved enough that she can leave her house and even travel again. “But I can’t walk more than like 50 or 100 feet at a time, so I use a wheelchair when I leave my house,” she says. “If I go out for more than a few hours in a day, I’ll pay for it.”

In a bizarre irony, it may be partly because ME/CFS is so debilitating that the medical system has been able to overlook it for three decades. “Sometimes people think, ‘If it’s really this bad, how could it have been ignored?'” Brea tells me. “Because people with this disease have such a hard time leaving their home or engaging in advocacy. When you can see us, we look normal, and when we’re sick, you’re not going to see us. It’s created this problem that no one can see.”

She recalls the moment when she realized that film could be a powerful way of changing that equation: She’d been describing to a doctor how she’d collapsed the night before and been unable to get up for hours. He was barely paying attention until she took out her phone and showed him the video she’d taken of her face pressed against the floorboards. “He just turned white,” she recalls—and then he immediately started ordering a slew of tests. Apparently seeing is believing. That’s when she decided to turn her iPhone video diary into a documentary film.

In Unrest, Jen and her husband Omar confront an uncertain future in the face of chronic illness.

(Image credit: Jason Frank Rothenberg)

The responses Brea received from doctors during her long, frustrating search for a diagnosis will surely resonate with many women who don’t have ME/CFS as well: Women with autoimmune diseases told they are “chronic complainers." Or women suffering a heart attack sent home from the ER with an anxiety diagnosis. Or women with brain tumors initially accused of being “attention-seeking,” on drugs, or just tired. Or women with endometriosis told that they are overreacting to “normal” menstrual cramps. Or women with childbirth injuries told their symptoms are just an expected part of postpartum healing.

According to a 2011 survey, 85 percent of health care providers believed ME/CFS was fully or partly a psychiatric condition. But in that, too, ME/CFS patients aren’t alone. Many women suffer from invisible chronic diseases—from fibromyalgia to vulvodynia to interstitial cystitis to migraine—that have historically been seen as psychosomatic and remain poorly understood. I’ve spent the last couple years writing a book about gender bias in medicine, and the story of ME/CFS is a textbook example of a catch-22 that’s hindered scientific knowledge of a great many health conditions that disproportionately affect women: Women’s unexplained illnesses tend to be assumed to be psychosomatic until proven otherwise. But the medical community puts little effort—and research dollars—toward understanding conditions it assumes to be psychosomatic.

Hopefully Unrest will be seen by those who most need to see it: the dismissive health care providers and researchers whose disbelief has done untold harm to ME/CFS patients. Women shouldn’t need to provide corroborating video documentation to get a doctor to listen to them — or to convince the medical community to believe their diseases are real. But sadly, there are millions of women in this country who will likely find Brea’s story familiar.

Maya Dusenbery is author of the book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, coming out in March 2018. Follow her on Twitter.