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Jennifer Brea documented her chronic fatigue syndrome on an iPhone so doctors would believe other women

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The film is the first documentary in Sundance’s new Creative Distribution Fellowship

Photo: Jason Frank

“From as early as I can remember, I wanted to swallow the world whole,” first-time filmmaker Jennifer Brea declares at the start of her documentary Unrest.

As a young woman, she attended Harvard and then Princeton to study political science. She traveled widely and fell in love. And then she became incredibly, inexplicably tired, often unable to get out of bed and unable to get herself up off the floor if she fell. She was diagnosed with chronic fatigue syndrome (also known as myalgic encephalomyelitis, or ME), a little-understood but not at all rare disease that affects an estimated 836,000 to 2.5 million people in the United States. It has no cure.

As a bed-ridden Brea explains in the film, “It was like I had died but was forced to watch as the world moved on.”

The condition is one that’s hard to explain or externalize, and Brea was moved to make a documentary about it because of one fateful conversation with her doctor. “Initially when I was filming, I wasn’t really intending or thinking about making a documentary,” she told The Verge in a recent phone call. “But I was just sort of stuck in bed without a lot of answers, and was just really scared and worried about what was happening to me. I had lost the ability to read or write, so I gravitated toward my phone because it was the one thing that was in my bed that was light enough to hold.”

“I was seeing a doctor and I was trying to explain to him this horrible thing that had happened to me. I had tried to get out of bed, and collapsed and was on the floor, and hit my head and was just there for hours without anybody finding me. I was trying to tell him that this thing happened the previous night, and he was just not even paying attention.”

It wasn’t until she took out her phone and showed him the footage she had shot of her face pressed against a floorboard, stray tears rolling sideways as she tries to get out words to describe what’s happening, that the tone of the conversation changed. “He just turned white,” she remembered. “That’s really when I thought, ‘Okay, part of the reason that this community has remained hidden is because not only are they literally hidden behind closed doors and in bedrooms, but because you really need to see the visual image in order to be able to understand what it’s really like.’”

After that conversation, Brea spent a year fundraising and figuring out “how to make a film from bed,” eventually bringing in $212,000 on Kickstarter. At the time, she says, it was the eighth most-successful documentary campaign in the platform’s history. She shot the rest of the footage over a year and a half on a combination of her iPhone and a Canon C300, and edited for another year. The film debuted at the Sundance Film Festival six months later.

Her film is a feat of empathy, documenting not only her own struggle, but the battles of women she found on Facebook, YouTube, and through open casting calls. Casie Jackson, a woman \ Brea met through this casting call, found that her disease alienated her from everyone but her children, the only people who really understood what she was struggling with and believed her account of her own experience.

Brea’s relationship with Jackson is central to the film, because Brea spends much of the movie worrying that she and her new husband Omar won’t be able to raise a family in the midst of all that they’re dealing with. “I can’t be someone’s mom like this,” she says at one point. “I can’t be someone’s wife like this.” Later she turns to her husband and tells him, “I’m nothing. I can’t give you anything.”

Jackson tells her, in the film’s emotional climax, “Having kids would be the hardest thing you’d ever do, and it would be the best thing you ever do. You’d be a great mom.” These words of reassurance don’t necessarily make Brea’s fears go away, and she says this is the most challenging part of putting together a documentary about chronic fatigue. “Usually, you think of these arcs in storytelling where you start off in a certain state, and things have to get worse to get better, but it’s this journey that makes sense in a linear way. It’s very hard to tell a story that’s essentially a circle. You see me well, you see me not well. I’m well now, but it’s not because I’m well. It’s because I’m well temporarily.”

When she first found out she was sick, she says, she craved “a story about illness” that wasn’t about recovery or death, but coming to terms with living with something “that might last the rest of your life and never go away.” To that end, Unrest bobs and weaves between periods of Brea alone in bed, surrounded by friends at a college homecoming event, waltzing with her husband, or fighting with him about mold spores on his clothes. It’s, as she says, a circular story, looping in and out of moments of doubt, and moments of bravery. “Overturning stigma is not really about trying to convince you: ‘Look how sickly I am,’” she says. “It’s more about trying to convey ‘We’re living with this, but remember how human we are.’”

Her biggest goal for the film is to combat the stigma around her disease, which is described in interspersed news clips as “the yuppie flu” by Larry King and “a made-up condition” by Katie Couric. “If I may be a feminist for a moment,” begins a doctor who points out that 85 percent of ME patients are female, “being a woman is part of it.” Women are also disproportionately affected by MS, which was called “hysterical paralysis” until the invention of the CAT scan.

It’s been proven that women have to work harder to prove they are sick before receiving appropriate treatment. This fact has been documented over and over in personal essays and massive studies, and unpacked in Leslie Jamison’s landmark “Grand Unified Theory of Female Pain,” which argues that women’s pain has been aestheticized in popular culture to the point of abstraction. So much of the pain that’s even possible is unique to women’s bodies, which only compounds the effect. “You want to cry, I am not a melodramatic person! But everyone thinks you are,” Jamison writes. “You’re willing to bleed but it looks, instead, like you’re trying to get bloody.”

Photo: Shella Films

Crucial to the release of this film, Unrest is part of the Sundance Institute’s new Creative Distribution Fellowship, which gives filmmakers the funds to distribute their work on their own terms, avoiding traditional all-rights deals that ask them to cede control of the film’s marketing and release strategy. Brea’s is one of two films selected for the fellowship in its first year, alongside Kogonada’s Columbus. Chris Horton, the director of the program, told The Verge in a phone call, “This is for films where filmmakers want something more entrepreneurial, they want more creative control, or control over the rights and the revenue.” Brea’s film was ideal for the fellowship, he says, because “she felt an obligation to the community she’d been building over the last five years in bringing this story to life. She just felt that she could build that message correctly.”

For Brea, that means setting up virtual screenings for the homebound or disabled. The film’s official premiere will be in San Francisco on September 29th, and she’s selling 25 virtual seats to the screening. “Obviously the homebound audience can access the film on iTunes or DVD,” she said, “but we also really wanted them to be a part of the theatrical window.” She also made a VR experience that debuted at the Tribeca Film Festival, designed to make the representation of ME even more intimate.

Because she’s been in constant contact with the ME community throughout the production of the film, Brea says she has a strong idea of where the major audiences for Unrest live, which helped determine which theaters the film will be shown in. Many of the people she interacted with live in the Bay Area, so Unrest will show in three theaters there.

“I know who they are, I know how to reach them, how to talk to them, why they supported the film, and why they want to see it. I couldn’t contemplate, frankly, having a distributor not do well by the film,” she explains, saying that it was just as important to her to have control over the final cut of the trailer, the 30-second marketing spot, and all the promotional materials as it was for the documentary itself. For a film about reducing stigma around a little-understood disease, it felt to her like the messaging was still part of the creative process. If done wrong, it could do more to reinforce the idea that this is an odd condition experienced only by a small group of people.

“I feel like what we’re doing here is a different kind of creativity, but it’s very much aligned with the initial intent of that moment,” she says. “The moment when I was in the doctor’s office with my iPhone.”

Unrest opens in limited release in the US on September 22nd and in the UK on October 10th.