Most of us only watch Netflix in bed. Jennifer Brea self-directed a documentary, now streaming on the service, from hers, offering up a stunning glimpse of life with myalgic encephalomyelitis, the mysterious illness better known as ME, or chronic fatigue syndrome. Brea was a Ph.D. student at Harvard University and a soon-to-be bride when an unexplainable disease left her bedridden and struggling even to make use of a wheelchair. Called Unrest, her film captures that difficulty of diagnosis and care for both patient and caregiver while exposing prevalent stigmas around what is often “invisible,” misunderstood, and largely incurable. Told what so many people with chronic illness initially hear—that it is “all in her head”—Brea finds strength in self-advocacy and community; video-chatting with others with ME/CFS from her home, she tries to come to terms with a life she had never anticipated. Prepared to meet any skepticism head-on, she explains as the camera captures her ordeal: “I know you might be saying to yourself, if I really couldn’t stand up, why would I be filming it? Well, I kind of think that someone should see this.”
Unrest, which won a Special Jury Prize for Documentary Editing at Sundance and later found a large following after airing on PBS, has been a beacon for those with similar conditions, inspiring group viewing parties around the country. But the documentary is not only for those suffering from chronic illnesses—it’s for everyone, especially those who feel they cannot relate. In the same way that we don’t need to be in love when we read a love story, viewers don’t need to be sick in order to participate in the much-needed conversation that Brea’s documentary proposes. In fact, participation and engagement by a more diverse population is not only preferable, it’s crucial. Millions of people currently have some diagnosis of chronic illness, with a reported 15 to 30 million people worldwide reportedly suffering from ME/CFS alone. There are no clinical tests that offer a conclusive diagnosis for the condition that causes debilitating fatigue, widespread pain, sleep disturbances, memory and concentration issues, and other symptoms; meanwhile, sufferers may be relegated to spending a large portion of their time in the confines of their home. In an early scene of Unrest, Brea’s partner talks about one of the major obstacles in trying to get treatment: “If you say too little, they can’t help you, and if you say too much, they think you’re a kind of mental patient.” Though the illness crudely interrupts daily life, work, and relationships, making even mundane tasks an incredible challenge, there are few answers for those who suffer—and no known cures.
While we tend to think of illness narratives as personal stories only, Unrest hints at a larger cultural epidemic: namely, the widespread denial or discounting of that which is other to us, a phenomenon that we see everywhere from the streets to social media to our political landscape. Who reading this hasn’t been trolled or gas-lighted, had a very real and personal experience discounted, or been told that something is “all in their head”? The diagnosis of this social malady is an important first step. Brea’s film demonstrates how vital self-advocacy is for those with chronic illness, but it also suggests the importance, and the necessity, of advocacy that extends beyond the self. If chronic illness remains invisible in the arts and in public conversations—as difficult to see as its symptoms often are—these conditions will continue to be ignored, even though every viewer has either been diagnosed with a chronic illness themselves or likely knows someone who will be.
Brea and others who work like alchemists, lending their sickness to artwork and activism, show us how to fight for answers that will, if not offer a wholesale cure, lead to a better quality of life as well as greater connection within a community—perhaps even building one where it may not already exist. What if we did the same? What if we didn’t wave away that which we do not understand and turned toward, instead of away from, even those things that we feel we do not suffer from ourselves? Imagine how such an exchange of self-interest for human interest might impact health-care options for those struggling with chronic illness—and how this might present a societal remedy for so much more.