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Posted by Maya Dusenbery

Jen Brea was a 28-year-old grad student when her health began to deteriorate after a high fever. As she suffered from recurrent infections, profound dizziness that left her unable to stand, and eventually terrifying neurological symptoms, doctors told her that she was stressed, or just dehydrated, and finally that a repressed trauma was the source of all her ailments. 

Eventually, Brea was diagnosed with myalgic encephalomyelitis, more commonly known as chronic fatigue syndrome in the US. And now her documentary on the disease—which she directed mostly via Skype since she’s been bed-ridden for much of the last six years—is coming to select theaters.

I interviewed Brea and include her story in my forthcoming book on gender bias in medicine. It’s estimated that one million people in the US—and 17 million worldwide—have ME/CFS. Over 80 percent of them are women, and sexism played a large role in the public and the medical system’s reception to the disease.

In the US, the condition first came on the radar after a large outbreak near Lake Tahoe in the mid-eighties. But, unable to figure out the underlying cause, the medical community quickly suspected it of being nothing more than the psychogenic symptoms of neurotic women. The media derided it as “yuppie flu,” its sufferers stereotyped as burnt-out “educated white women.” (In reality, the disease, like many health problems, disproportionately affects low-income patients and people of color.) Meanwhile, myalgic encephalomyelitis, a name given to sporadic outbreaks of a similar-sounding illness that had occurred throughout the first half of the twentieth century, had already begun to be reframed as cases of “mass hysteria” on the basis that it was mostly women who were impacted.

Unrest, which tells Brea’s story, as well as the stories of a few other ME/CFS patients from around the world, discusses this history of neglect by the medical system for the last thirty years. After all, Brea is also an advocate. She co-founded #MEAction, a platform for ME/CFS advocacy efforts, that organized the Millions Missing protests to demand more funding for research on the disease (there has been unbelievably little) and recognition for the millions of patients affected by it (many health care providers continue to believe it’s largely a psychiatric condition).

The film itself isn’t heavy-handed or preachy though. It simply lays bare what life is actually like for severely ill ME/CFS patients. Brea initially began an iPhone video diary with no intention of turning it into a documentary; it was just an outlet for herself when she could no longer read or write. So much of the footage is extremely raw and painful. The film is rooted in a faith that if people truly understood what the disease did to its sufferers, it couldn’t possibly continue to be dismissed and minimized. As such, Unrest‘s greatest potential will come if people beyond those affected, directly or indirectly, by ME/CFS see it—especially those in the medical community who too often belittle it and those in the media who too often uncritically accept some of the bad science that’s been done on it.

So see it and also help spread the the word. While Unrest tells the very particular story of ME/CFS, the film will no doubt resonate with any woman who has ever had a doctor dismiss her symptoms as “stress” or who suffers from other poorly understood conditions that disproportionately affect women and have been similarly neglected—like fibromyalgia, interstitial cystitis, vulvodynia, to name a few. Which, sadly, is a whole lot of us.

If you’re in the NYC area, you can see Unrest at IFC this weekend. San Francisco, Chicago, Los Angeles—you’ll have a chance the following one. See all upcoming screenings here.

Bonus viewing: Check out Brea’s great TED Talk too.

Comic for September 22, 2017

Sep. 22nd, 2017 11:59 pm
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