Originally published on The Mighty
Jennifer Brea had been bedbound due to chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS) for a few weeks when she first picked up her iPhone and started filming herself. A lifelong writer and reader who could no longer do either, Brea turned to her “video diary” as an outlet for her fear and grief.
But during a medical appointment, Brea realized her filmmaking could have a different kind of power. The doctor didn’t seem to be paying much attention while Brea explained that she collapsed on the floor one night and was too weak to call out. So, she took out her phone and showed him a video of what happened. The doctor “turned white, said ‘Oh my gosh, you need an MRI, you need a spinal tap’ and was suddenly mobilizing,” Brea told The Mighty.
“It made me realize that for whatever reason, in this experience, words fail. And there is a certain kind of power the visual image has, especially if it could be used to bring people into those spaces they never see, into our homes and bedrooms which is where we live when we’re not well enough to be in the outside world,” Brea said. “That’s when I realized maybe this could really change things.”
That footage turned into a documentary film called “Unrest,” about Brea’s journey through ME/CFS, her fight to find treatment and her relationship with her new husband, as well as interviews with ME/CFS patients around the world. The film premiered at the Sundance Film Festival earlier this year and will be released theatrically (in selected cities) in the U.S. on September 22 and in the U.K. on October 20.
The film has been years in the making — Brea first began feeling frightening neurological symptoms (like not being able to speak) and post-exertional malaise in 2011 after experiencing an unusually high fever. The then-28-year-old, a Ph.D. student at Harvard, was diagnosed with ME/CFS a year and a half later and became too weak to leave bed soon after. Despite having no filmmaking experience, she managed to assemble a team of filmmakers and launch a Kickstarter in 2013 that ultimately ended up raising over $200,000 to create the feature-length film.
Because she was unable to leave bed to go on shoots, which took place all over the world, Brea filmed herself as much as possible using her iPhone and encouraged others in the film to do the same. She also interviewed people via Skype, and set up a live feed that allowed her to watch her crew’s footage while it was filmed on location.
The process of filming, then, turned into a means of travel and hope for Brea. In the early days of the film, she said the filmmaking community told her there were too many people in the film — but Brea said she wouldn’t have learned how to conceive of a life with ME/CFS if she didn’t escape her own four walls through the stories of the other patients featured in the film.
“There’s a scene in the film of me looking at a sunset in Denmark. The reason it was so emotional for me was it was the first time I had seen the sun in four months because I hadn’t even been in my own backyard and I forgot I hadn’t seen it,” Brea said. “In being able to watch the footage in real time, it gave me a sense of travel and reconnected me with a sense of the world as someplace big and expansive and helped me feel like myself again.”
Viewers will also see the frustrating limitations of the medical system and how little most doctors understand ME/CFS — something Brea admits she didn’t expect when she first became ill. Like most healthy people, she thought it would be like “House,” and she’d have a team working to figure out her mystery illness.
But that’s not what happened to her, or what happens to most ME/CFS patients. Brea found that many doctors seemed to believe if they couldn’t find an answer to her illness, then her symptoms — or a solution to them — must not be possible. Her conversations with dozens of other patients revealed that just as much as a need for answers is a need for doctors to not abandon their patients — for doctors to walk this journey with them. “I think that’s rare to find,” Brea said.
The pain of having an illness that isn’t recognized or understood, not only by doctors but by the general public, can be traumatic, and Brea hopes the film gives patients a new tool for describing their experience to others. Seeing people with ME/CFS and other chronic illnesses, which share many of the same physical and emotional symptoms, attend screenings of “Unrest” and watch that emotional burden play out in the film has been powerful, Brea said.
“I’ve seen in these screenings a sense of 20 years of catharsis of being able to see your life on the big screen and how that helps to release some of that pain and trauma,” Brea said.
For viewers who don’t have any chronic illnesses, those who dismiss ME/CFS as “yuppie flu” or those who think patients must be fine because they “look fine,” Brea hopes the film will open their eyes to the hidden reality of this disease — and the reality that medicine is still a vast unknown. It’s time to force the system to invest more in researching and fighting chronic illnesses, she said.
“I want the general public to recognize how devastating this disease can be and how little we understand, not because it’s so complicated or unknowable but because of how little has been invested into finding the answers and how that has been a choice people have made,” Brea added. “I would hope they would join us as allies to address this inequality, which is stunning.”