By Erica Verrillo
In 2017, Jen Brea did the impossible. She catapulted ME/CFS onto the public stage, and into the international spotlight, all in one fell swoop with her film, Unrest.
Brea’s moving documentary has been received with universal acclaim. It has been reviewed by the New York Times, the Wall Street Journal, LA Times, The Guardian, The Telegraph, the Boston Globe and a host of regional and industry publications. Vogue called Unrest a “must-see” and “a stunning glimpse into life with myalgic encephalomyelitis.” The Los Angeles Times called the film a “sensitive and arresting rally cry for increased awareness about this disease, and an existential exploration of the meaning of life while battling a crippling chronic illness…remarkably intimate, deeply edifying and a stirring call to action.”
Unrest has been shown across the United States and as far as Abu Dhabi, Pakistan, and India. In the UK, there was even a showing at the House of Commons. Special screenings have been held for medical professionals, for congressional representatives, for community organizers, and in churches, colleges, libraries, and hospitals. Panel discussions led by notable experts, physicians, researchers and advocates have raised awareness about the disease to an unprecedented degree. The film was aired on NPR in January 2018, and is now available on Netflix, where it can reach millions of viewers.
It is probably safe to say that nothing has galvanized the public, or mobilized advocates, as much as Unrest. By using her own story as a touchpoint, Jen Brea was able to reach a public that had no concept that the disease even existed.
As a story-telling device, nothing is quite as effective as a personal tale. We can all identify with one person’s experience, because we all know what it is like to be an individual. But with ME/CFS patients, that identification is more than hypothetical. We know precisely what Jen went through, and we are with her every excruciating step of the way.
The first time I saw Unrest, there was so much weeping coming from the person sitting next to me that I missed much of the dialogue. An outpouring of grief is by far the most common response to this film among ME/CFS audiences. There is so much that is familiar to us. “It was like I had died and was forced to watch while the world moved on,” Jen says, echoing the feeling we all have of being isolated and forgotten, unable to participate while we are trapped in a hellish suspended animation. Jen’s tearful confession to her husband, “I am nothing. I can’t give you anything,” is the full expression of what people with ME/CFS come to realize when everything has been stripped away. And her husband’s touching response, “If I can talk to you. If I can hold you tight, I’m good,” is something we all would like to hear. Sadly, many of us never do.
Subscribe to the World's Most Popular Newsletter (it's free!)
Unrest begins with Jen filming herself as she tries to get up, and eventually resorts to crawling into bed. In the next scene, her husband, Omar, drives her to the ER, but he leaves her with a fateful warning. “If you say too little, they can’t help you. And if you say too much, they think you are a mental patient.” Later, Omar’s warning comes true. Jen is diagnosed with “stress” and later “conversion disorder,” the modern term for hysteria. This encapsulates the ME/CFS experience. Navigating the medical world for the first time is treacherous, filled with pitfalls, prejudice, and the presumption on the part of doctors that their patients are lying.
Jen’s long years in bed resonate with ME/CFS patients who have been severely ill. The loss of her former life, and the dashed hopes for her future, make her wonder why she was born at all. “It was like I had died and was forced to watch while the world moved on,” she says. Every patient can understand how time just disappears “when you’re in a bubble.” Eventually, with the help of antivirals, Jen breaks out of her bubble. She rejoins the world through her contacts with other patients, and through her own efforts to reach out with her film.
There is no doubt in my mind that every person watching this film will come away with a trove of important messages – the all-too-frequent psychological misdiagnoses that plague patients with complex diseases, the missed opportunities for medicine to find a cure, the pain of families helplessly watching their loved ones suffer, the hope at the smallest breakthroughs, the frustration with the slow pace of research. All of these are important takeaways for medical professionals and politicians who watch Unrest. Through Jen’s eyes, they can see the agony patients and their families go through.
But for me the most moving moment of this film was when Jen, witnessing the sun set through the camera crew’s traveling van, cries out with joy, “There’s the sun!” and almost immediately breaks down. And then a moment later, she smiles again as she regains her footing.
This is what it is all about: Joy, when we experience a hint of those simple pleasures – a sunset, a stroll by the sea – followed by grief when we realize how long it’s been since we had those experiences in the flesh, with no guarantee we will ever have them again. And then, renewed appreciation of that small taste of what it is like to be fully alive.
Free at last.
Erica Verrillo is ProHealth’s expert editor for the ME/CFS HealthWatch and Natural Wellness newsletters. She is the author of Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition, available as an electronic book on Amazon,Barnes & Noble, Kobo and Payhip (PDF file). She is the founder of the American ME and CFS Society (AMMES.org), a national nonprofit dedicated to serving the needs of patients and caregivers through support, advocacy, and education.