What It's Really Like To Live With Chronic Fatigue Syndrome

Photo: Courtesy of Jason Frank/Unrest.
When Jennifer Brea was 28 and studying for her PhD at Harvard, she got sick with a fever that left her bedridden for days. Weeks passed, and Brea felt worse, to the point where she couldn't manage sitting up straight in a wheelchair. Doctors were confounded by the severity and complexity of her symptoms, and brushed it off as something that was "in her head."
As a patient, Brea was frustrated. But as someone who had always kept a diary, she was inspired to document what was happening to her. So, she grabbed her iPhone and started filming: "I couldn’t even write and at times I had to tap out because the effort was so great; I had really major issues with the language areas in my brain," Brea says. "Filming was a way to pass the time, and have a place to put this fear and pain and grief." She also posted detailed descriptions of her symptoms on social media, in hopes that "someone somewhere would see this or have this," she says.
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Messages poured in from Brea's female friends from college, who were in their mid-to-late 20s and had experienced various other illnesses. She noticed a common thread: "They were also getting disbelieved by their doctors, and just minimised, frankly," Brea says. "It was almost like they were being perceived — I think because they were young and female — as just being kind of anxious, overly concerned, or sensitive."

I won’t be able to lift my head or arms, sometimes my brain will shut down, and I won’t even know who I am or that I am.

Jennifer Brea
Eventually, Brea was diagnosed with myalgic encephalomyelitis (ME), commonly called chronic fatigue syndrome (CFS), a complex, disabling condition that often starts with a flu-like virus. Because doctors don’t know what causes ME/CFS, there’s no cure or approved treatment for it, and patients have to learn how to cope with the overwhelming fatigue, problems with sleep, pain, and dizziness. Brea, as anyone would, started googling.
She uncovered an online community of people all over the world living with the same illness and struggling to be seen. Anywhere between 836,000 to 2.5 million Americans suffer from ME/CFS, but most of them have not been diagnosed, according to the CDC. And among adults, ME/CFS affects women more than men.
Brea wanted to open people's eyes to the illness, and make a film that served as a "rally cry" for anyone living with it who can't advocate for themselves. "I had always turned to novels and stories to understand what I was going through, and explain my experience to myself," she says. "When this happened to me, I suddenly felt like I didn’t have a story, and a profound sense of loneliness, isolation came from that." While bedridden, Brea directed a documentary, called Unrest, which premiered at Sundance Film Festival and won a Special Jury Prize for editing. The reaction from within the ME/CFS community, Brea says, has been overwhelming.
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"I think this really should be part of the conversation around women's health and our own feminism," Brea says. "The only way we're going to get the equal access to treatment and what we need is by localizing able-bodied allies." Brea and her husband, Omar Wasow, told us what it's like living with ME/CFS, and what she hopes people gain from her film:
Can you explain what it feels like to have ME/CFS?
Jennifer Brea: "The way I describe it is that I feel like I’m this battery that is broken and only charges 20%. As long as I stay within that 20%, I can function really well and do a lot of the things that I want to do in the day. It's different for everyone, where that metabolic line is. When I crash, all my systems can’t work. It's sudden, and I won't know that I have it until I start getting symptoms. It depends how bad it is, but oftentimes I'll just be completely immobilised.
"I won’t be able to lift my head or arms, sometimes my brain will shut down, and I won’t even know who I am or that I am. When I was really sick, I ended up bedridden for days, weeks, and months as a result of [miscalculating my own energy]. Everything shuts down, and every symptom in my body starts going crazy. The only thing that helps and will get me out of that state is rest."

In some ways, when a patient becomes homebound, their caregiver becomes homebound with them. To have to do that, and feel like you're hurting the person you love, is so hard.

Jennifer Brea
What was it like to discover that there were other people with your condition?
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JB: "In the doctor's office, I sort of felt like I was someone experiencing this bizarre, rare disease, and oftentimes didn’t feel understood. But online, talking to other patients, I felt this profound sense of mirroring. People were describing my symptoms, like my sound sensitivity, or my loss of language, or things that are not written down the literature. Suddenly I realised, Oh, actually a lot of people with this condition have those experiences, and our bodies actually function and don’t function in ways that follow fairly clear patterns. I think that is helpful just in terms of understanding: I have a thing, and it actually is defined, and now I need to go about trying to figure out how to get a little better...
"In making the film, and going deep into other people's stories, I discovered the courage of people who had been sick for 10 or 20 years, and had found a way — even within extremely narrow bounds — to have full lives, have relationships, and family. It gave me hope in a moment that was really quite awful. Even if I didn’t know how I could find myself someday, I would eventually find a way to live."
It was touching to see your relationship dynamic in the film. What advice would you give other couples or caregivers dealing with a chronic illness?
JB: "Any illness, especially a chronic illness, puts a huge stress on your relationship. I think either it’ll break you, you'll break it — or maybe you will get stronger from it. Frankly, I don’t know that Omar or I could’ve known where we would end up if you told us, when we were going to get married, that this would happen. I couldn’t have predicted that.
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"We came to know each other really well through the daily struggle of grappling with this. We always feel lucky in the sense that we found the person who was very specifically the right person. Compatibility and understanding that we are completely irreplaceable to each other was always part of [staying together through this]."
Omar Wasow: "Part of what has allowed us to get through some really tough times is this enormous sense that we were meant for each other. What has been a source of great joy in our relationship is that we just enjoy each other's company: We enjoy talking, enjoy thinking about the world — and pretty much through all of Jen's sickness, that is something we still need to do. There are days when she’s so knocked out that she can only watch movies...but our ability to essentially enjoy each other's company has been a really powerful foundation, and I think that's something that can translate to other relationships."
JB: "The thing that I hope comes through in the film, that I still struggle with, is the sense of guilt. Even though this isn’t my fault; I didn’t choose this, and can’t get out of it. In some ways, when a patient becomes homebound, their caregiver becomes homebound with them. To have to do that, and feel like you're hurting the person you love, is so hard. What Omar has always done is to frame that as, like: No, this is just an adventure our lives.
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"This [disease] can be [an adventure], and we can face it together by treating it that way. Whether it's this journey into the film world or our journey together into the science, politics, and social justice of this. We still see life the same way we would have if it hadn't happened to us."
What can you do to help spread the word about ME/CFS? First, go see the film, which opens in theatres on October 20th. Then, support their campaign, called #TimeForUnrest, to advocate for more recognition, education, research, and funding around ME.
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