The first time I saw Jennifer Brea, it was in some fuzzy iPhone footage filmed at floor level. In it, she is trying to crawl to her bed, shuffling her clearly unresponsive body along the floorboards and struggling to breathe. When she tries to lift her torso, she holds it for one agonising second before collapsing. It is excruciating to watch.
She remembers filming it: “I didn’t have the strength to call out and I was just lying there listening to [my husband] downstairs and I was like, ‘Please, please come find me’ because I didn’t know how long I was going to lie there until I could move again.”
Now Brea, 35, is thousands of miles from her California home, articulately and animatedly talking me through her documentary, Unrest, which unnervingly shows the reality of living with Chronic Fatigue Syndrome (CFS), the autoimmune condition from which she has suffered for the last six years.
The disparity between the dynamic woman in front of me and the woman in that fuzzy iPhone footage (which forms the opening scenes of Unrest) is disconcerting and goes some way to explaining why this disease is so frequently misunderstood and misdiagnosed.
Brea was 28 years old, newly engaged and studying for her PhD at Harvard when she first got sick with a high fever. In the ensuing months, she became dizzy, exhausted and sensitive to sound and light. Soon she lost the ability to finish sentences, to write and to get out of bed.
Multiple doctors found nothing wrong with her. “I thought I had a rare disease, frankly, that doctors couldn’t diagnose,” she explains. Eventually, a neurologist diagnosed her with “conversion disorder”, meaning a past trauma she did not remember was causing real symptoms, but there was no biological cause. After walking home from that doctor, she collapsed and didn’t get up for two years. Brea didn’t have a rare disease. It was CFS, also known as ME, and it affects 17 million people around the world. Eighty per cent of sufferers are women.
There is an ugly history in medicine of women being ignored and placated. Brea’s diagnosis of “conversion disorder” is not unusual and she is sceptical about what the term really means: “In 1980, hysteria was renamed “conversion disorder” and, for a long time, that was a catch-all of symptoms that usually had some type of effect on behaviour, like MS and epilepsy, until either better diagnostics or treatments started to remove some of those diseases from that basket. I think that conversion disorder is sort of the only option neurologists have when you have neurological symptoms that they can’t explain.”
Not a single woman that I talked to hasn’t, at some point, had that experience where they were told ‘It’s all in your head’
Anecdotally, Brea says, “Not a single woman that I talked to hasn’t, at some point, had that experience where they were told ‘It’s all in your head’.” She doesn’t believe that male sufferers have access to better treatment options, but she does think they tend to be believed more quickly. “When I talk to women who got sick much earlier, when the gender bias was much more overt – they would tell me stories that are insane. Like, if you’re single, then, “Get married and have kids and that will solve all your problems,” or “Get a haircut. You just need a makeover.” These are literally the things that doctors would say.”
“I never had anyone say anything like that to me, but I definitely started to bring my husband to appointments instinctively, because there was this kind of condescension. I often felt I wasn’t being listened to or believed, and I thought that if I brought this man into my appointment, I would be treated better or more seriously.”
If it seems absurd that this brilliant and bright young women felt voiceless, Brea says that the gender bias in medicine runs deep: “For many decades, they wouldn’t even incorporate women as test subjects, because they get periods and that screws up the data. So, you would have all these drugs that were trialled only on men.”
The 80:20 gender split in CFS is reflected in other autoimmune disorders, like MS, and although male and female immune systems are fundamentally different, there is little research on the topic. Misdiagnosis and the refusal to accept CFS as a physical condition are not just damaging to sufferers (many of whom make themselves worse by exerting themselves too much in the early stages of the disease) but also to research, public investment and philanthropy.
Despite this, Brea is grateful that the internet has allowed her to connect with fellow sufferers, some of whom had been without a diagnosis for decades. Her discovery of the online community sharing experiences from darkened bedrooms all over the world, hidden from view and voiceless, made her reconsider the disease as a social-justice issue: “I thought I don’t want to be sitting here in 30 years and talking to another young person who is getting sick in the prime of their lives.”
Today, a cocktail of antiviral drugs originally developed in HIV research has helped her to regain much of her cognitive ability, although there has been little effect on her physical abilities and she uses a wheelchair. It has been difficult for Brea to watch back some of the footage of herself, but the response from fellow sufferers has been one of gratitude and relief to see their experiences acknowledged and mirrored. “There’s this feeling that so many of us live with some kind of private pain, in our homes and bedrooms, that no one ever gets to see,” she says.
Brea’s subjects are mostly confined to four walls. Leeray and Casie are a mother and daughter who live only a few miles from each other in Georgia, but hardly ever see each other. Both CFS sufferers, even that short distance is too much for them to travel. Jessica, from Kent, can only be interviewed for 10 minutes at a time, lying on her bed. Most disturbing is the story of Karina, a CFS sufferer in Denmark, who was forcibly removed from her parents’ care for three years, during which her condition deteriorated dramatically.
One of the most heartbreaking themes is how Brea and her husband, Omar, have adapted their relationship to deal with her CFS, how she feels he has sacrificed his potential in order to care for her and their discussions over whether they could start a family. “The reason it’s in the film is that it’s both something that I was thinking about and we were wrestling with as a couple that had just gotten married… But it’s also in the film because I saw a lot of discussions online where there was a lot of judgement expressed towards women with this disease, but also towards women with disabilities, around their choice to have children.” The couple do still intend to have children and are trying to work around the difficulty that the most important drug in Brea’s carefully balanced cocktail, also causes birth defects. But she is confident they will find a way.
After all, when Brea was making the film, she was spending 23 hours and 50 minutes every day in bed, using a team of assistant directors and conducting interviews using Skype. It was incomprehensible that she would embark on this promotional tour.
If you had not seen the documentary, you could easily have no idea there was anything unusual about Brea, but there are a few clues. As we near the end of our interview hour, occasional grimaces flutter across her face. She holds a blink a little longer than normal and apologises for being “foggy”, explaining that the travelling has taken its toll. She points out how she sits with her legs neatly folded underneath her to stop the blood rushing to her feet and causing her to pass out.
But those crashes that are so difficult to watch in the documentary, the moments when she slides into a catatonic state, happen “almost never” now and, even as she is apologising for her slowing speech, she is unequivocal in her belief that her condition can be treated: “I’ve been able to recover enough to be able to forge a new life, but I still hope and want to make better. I have hope that it’s possible, because I have found things that work. This is a disease that’s amenable to treatment, just like any other disease.”
Unrest is out now