‘THERE IS NO HELP FOR ME’
Jennifer Brea’s quest for answers about her health condition is captured in the documentary Unrest,
In an emergency room four years ago while in incredible pain, barely able to stand or speak, Jennifer Brea realized she was stuck.
“There is no help for me,” the former Harvard PhD student remembers thinking. “There is no doctor I can see who can treat me, or care for me or explain what is happening to me.”
That moment launched Brea on a quest to find evasive answers to questions about her own health and then that of others with the same condition — once she eventually figured it out what it was.
Her efforts have since materialized as Unrest, a documentary film directed by and featuring Brea that will be shown for the first time in Canada at Hot Docs this weekend. The film takes a close-up look at Brea and her new husband Omar Wasow’s struggle to understand why the previously active, travel-loving, 28-year-old and doctoral candidate is suddenly in constant pain and unable to get out of bed.
Once told it was all in her head, Brea was later diagnosed with ME (myalgic encephalomyelitis) a disease that is also known as chronic fatigue syndrome and is sometimes referred to as ME/CFS.
Much information surrounding this condition remains ambiguous or unknown entirely. There is no known cause of chronic fatigue syndrome, nor is there a medical test to diagnose it or a cure to make it go away. The Center for Disease Control and Prevention describes it as a “devastating and complex” disorder. Those with the illness suffer extreme fatigue that doesn’t go away with rest, and they can also experience pain and weakness, have difficulty concentrating and remembering things.
While scrounging the internet for more information on what was happening to her body, Brea discovered an online community of people with the same condition, who had been confiding in one another.
“We all crave that kind of connection and we all want to know that we are not alone, and part of that is the want to know that other people feel what we feel,” Brea said.
Brea struggled with ME throughout the film’s production and directed most of it from her bed. Still, the documentary takes viewers into the homes of others with the illness around the world. Brea conducted interviews through Skype while sending teams to shoot at various locations.
While she’s learned a lot from making the film, Brea still hasn’t found all the answers. She said those stuck at home and in bed because of ME/CFS have remained largely “invisible” to the public and to science. She’s not sure why still so little is known about the disease.
“In some ways the answer was always there in front of us and all we had to do was believe the people who were telling the story,” she said. “We had to believe the patients, we had to trust them when they said ‘this is what my life is like’ — and we didn’t do that and I don’t know why. I think that’s a question I can’t answer.”
She wants people to connect with her film, so it can start to change the way the disease is perceived. The legitimacy of the illness has been met with skepticism by some. Brea wants to get the attention of researchers, scientists, doctors and policy-makers who can help advance knowledge on the condition, and possible treatments.
Brea describes herself as someone who has always relied on narratives to explain situations and the world around her, but when it came to her illness, she found herself without any material to draw on.
“I made this film because I didn’t have a story,” she said. “I needed that when I first got sick to help give me hope and to help me understand. So I think I created the film that I needed.”
Brea hopes Unrest can help people who have been recently diagnosed with ME and other chronic illnesses and their families understand what’s going on. She wants it to be resource she never had. Unrest will screen at Hart House Theatre on Saturday and again on Monday at Isabel Bader Theatre, and May 5 at Hot Docs Ted Rogers Cinema. Tickets are available at boxoffice.hotdocs.ca. As part of DocX, the interdisciplinary arm of Hot Docs, viewers can try Unrest VR, a 15-minute user-led virtual reality experience that seeks recreate what living with chronic fatigue syndrome feels like. This is available at Brookfield Place starting on Friday.