‘Unrest’ documents lives of ME patients
The documentary shows the struggle of those who suffer from ‘chronic fatigue syndrome’
Trying to ignore bouts of excruciating muscle pain, Jennifer Brea forced herself to walk home after a doctor diagnosed her with myalgic encephalomyelitis, commonly called chronic fatigue syndrome.
During her walk, Brea tried to believe what her doctor said: Her condition was psychosomatic and most likely caused by a past trauma she would never remember.
Brea, then a Harvard PhD student, thought she could fight the autoimmune disease with symptoms that include muscle pain and sensitivity to light and sound by telling herself what she had was merely “in her head.” But despite her willpower, Brea collapsed once she made it to the door.
Since Brea was diagnosed with myalgic encephalomyelitis, or ME, she has realized there are several misconceptions surrounding the illness many identify as a made-up condition.
Hoping to fight ME’s stigmas and to push for a more medical description of the disease, Brea completed her first film, “Unrest,” which will premiere Friday at the Sundance Film Festival.
“I went online and found this whole community of people who had the same symptoms and had the same experience with medicine,” Brea told The Park Record. “Oftentimes, they were being blamed for having this illness.
“I think understanding that there were thousands, actually millions of people in the same boat, was when I started to say there is a bigger story.”
Brea, who found it painful to write about her illness, instead recorded her Skype chats with other ME patients, even before she set out to make “Unrest,” one of 16 films included in the festival’s U.S. Documentary Competition.
Many of those conversations are included in the documentary, along with scenes of the day-to-day struggles ME patients experience, struggles that show the illness is not about constantly being tired, Brea said.
The opening shot shows Brea filming herself crawling from the floor to her bed. The lights are turned off, and she is making quiet sounds of pain while attempting to lift herself.
Brea later introduces the audience to the drive behind the documentary.
“I know you’d be saying to yourself, ‘If I really couldn’t stand up, why would I be filming it?’” Brea said. “Well, I kind of think that someone should see this.”
Brea’s “Unrest” not only chronicles the pains ME patients have. It also depicts social justice issues.
The film questions if there are sexist stereotypes attached to the illness.
“I hear from women all of the time, who were later diagnosed with fibromyalgia, lime disease and lupus, who were initially told they were hypochondriacs,” Brea said in the film. “Eighty percent of autoimmune patients are women. I can’t help wonder if that’s why we’re disbelieved.”
“Unrest,” however, does more than question motives behind particular viewpoints in the medical world, Brea said. It also introduces people to what the first-time filmmaker calls “the missing.”
“One million people in the U.S. have this disease,” Brea said. “There are 17 million with it around the world. I think 25 percent of those people literally can’t leave their homes.
Brea said the fact that people with ME, who are often bedridden, are unable to go out makes it difficult to bring attention to the illness that has no cure or proven treatment. She also said the term “missing” alludes to ME’s lack of research funding.
ME only receives $5.6 million a year for research, making it the lowest funded major disease.
“It’s also about the missing dollars for research funding,” Brea said. “There is actually a limited amount of dollars for research funding, even though it is a common disease.”
Brea said she also used the film’s cinematography to show how trapped ME patients can often feel.
And although she was unable to be on location to film the ME patients and landscape scenes shown in “Unrest,” Brea did guide her crew by being present through Skype.
“Some of the scenes in the film are sort of saying goodbye to my past life,” Brea said. “I also want to convey that I recognize how vivid and precious the world is, which is why there are so many beautiful shots of the outdoors.”
Brea said understanding that life is precious is mixed with the idea that there are people who suffer from what she calls “invisible disabilities.”
She hopes more people with disabilities will feel comfortable telling their stories after watching “Unrest.”
“Unrest” is in Sundance’s U.S. Documentary Competition and will screen at the following times:
- Friday, Jan. 20, 9 p.m. at Temple Theatre, Park City
- Saturday, Jan. 21, noon at Redstone Cinema 7, Park City
- Monday, Jan. 23, 3:30 p.m. at Broadway Centre 3, Salt Lake City
- Wednesday, Jan. 25, 3 p.m. at the Sundance Mountain Resort Screening Room, Sundance
- Thursday, Jan. 26, 9 a.m. at Library Center Theatre, Park City