What terrifies me is that you can disappear because someone’s telling the wrong story about you. People with poorly understood chronic illness disappear behind false labels — crazy, malingerer, hysterical, attention-seeker. Jennifer Brea’s documentary Unrest revived my memories of years in bed, struggling to live through pain minute by minute, trying to hang onto a thought as ideas and words slipped away before I could remember how to speak.
The experiences and people Brea weaves together are familiar to me, but seeing them gathered up in one place was unexpectedly powerful. Her film is validating . . . and disconcerting. I knew what was coming. Hints foreshadowed the film’s ending, a reality that people living with ME/CFS know too well. But seeing the names listed as a memorial to those who chose to leave the struggle yanked me back to the day of my friend’s suicide. Unrest recalled all the days I thought my own life was better ended while simultaneously breathing a plea to survive each moment.
Jennifer Brea's Sundance award-winning documentary, Unrest, is a personal journey from patient to advocate to storyteller. Jennifer is twenty-eight years-old, working on her PhD at Harvard, and months away from marrying the love of her life when a mysterious fever leaves her bedridden. When doctors tell her it's "all in her head," she picks up her camera as an act of defiance and brings us into a hidden world of millions that medicine abandoned.
In this story of love and loss, newlyweds Jennifer and Omar search for answers as they face unexpected obstacles with great heart. Often confined by her illness to the private space of her bed, Jennifer connects with others around the globe . . . she travels by Skype into a forgotten community, crafting intimate portraits of four other families suffering similarly. Jennifer Brea's wonderfully honest and humane portrayal asks us to rethink the stigma around an illness that affects millions. Unrest is a vulnerable and eloquent personal documentary that is sure to hit closer to home than many could imagine
Brea’s film explores the experience of falling ill, then falling apart, being disbelieved, told you have a psychological problem (for Brea it was conversion disorder), and the internalized ableism that results. We force ourselves to show a positive attitude, rise above the problem, and push through. We pretend to be healthy. The sickness is all in our heads, we are told. We know that’s not true, but are determined not to be labelled psychologically unfit. However, we can only push through a short time before collapsing, unable to rise again. For some, family and friends dismiss the reality of chronic disease and tell us to snap out of it. Others believe us and offer help that sometimes strengthens and other times shatters relationships. Many doctors abandon or mistreat us.
We can barely think but must advocate for ourselves. The ME/CFS community validates our experiences, amplifies our voices, and offers solutions that might help. Standard western medicine has failed us so we search for something else. For me, “something else” brought me back to life, but like Brea I had to fight for it. I didn’t return to the life I had before illness altered everything, but to a different life.
I told my story in SpiritSisters: I Joined the Wandering Womb Society and Healed. Brea’s story and my story are not uncommon. An estimated 15 to 30 million people worldwide have ME/CFS; 75 to 80 percent are women; 80 to 90 percent are undiagnosed.
Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.
It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden….
Myalgic Encephalomyelitis (ME) is a systemic neuroimmune condition characterized by post-exertional malaise (a reduction in functioning and a severe worsening of symptoms after even minimal exertion). It causes dysregulation of the immune, nervous, and energy metabolism systems. The effects of ME are devastating enough to leave 25% of patients housebound or bed bound.
...ME patients score more poorly on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and various cancers . . . Symptoms can fluctuate significantly from day-to-day, but the unpredictable progression of this disease is be measured in years, not weeks or months.
Unrest is a feminist film that examines the history of medicine disbelieving and demeaning women. Modern medicine is still diagnosing women with wandering wombs, but instead uses labels like conversion disorder. The theory of hysteria began with the ancient Egyptians and the idea that wombs wander through a woman’s body causing different conditions depending on where they are located. Hippocrates connected epilepsy to the womb being near the liver. The cure is to put the womb to its intended purpose, childbirth, thus stopping the wandering. The practice of diagnosing with women with hysteria (it’s all in her head — or in her wandering womb) persisted through centuries and women still are diagnosed with somataform disorders — faking it.
In an interview with Alice Wong for the Disability Visibility Project, Brea explained that the film project was a lifesaver for her.
...there's . . . a place in the film, where I say you know, "Sickness doesn't terrify me, and death doesn't terrify me. What terrifies me is that you can disappear because someone's telling the wrong story about you." And I think that was very much how I felt at the beginning of the process, that I was being, in a sense, I was being erased in a real kind of metaphysical way by a system and a kind of public story that was wrong and wasn't my experience but that was also endangering my life and endangering other people's lives….
The film was very much an act of reclaiming my own right, my own right and power over my narrative. And I remember very consciously thinking, I wanna build a microphone that's bigger than the one that's shouting me down in this moment. And I have to do that. I must do that. 'Cause if I don't do that, I'm not going to survive. And so, I think it was about power, and it was about taking back power.
Women are reclaiming the right to tell our stories. We are taking charge of the chronic illness narratives, says Bitch Media.
What’s radical about these portrayals is their creators are women who have chronic illnesses. The effect is honest, raw, funny, and (for anyone who’s been through something similar) profoundly validating.
Disabled people are learning how to care for themselves, to support each other when medicine and society fail us.
In the documentary, Brea responds to the deficiency of her doctors by searching for community. She rapidly taps into a global network of YouTubers, Twitter users, and other people who talk about their conditions online. We meet them, get to know their families and how they make sense of their lives, and see Brea and her husband—Omar Wasow, a professor of politics at Princeton University—work through their own experiences. She tries various treatments, experiences mini-relapses, then struggles again. In her newfound online community, though, Brea starts to find her way.
Brea’s film shows the many sides of ME/CFS. People whose health status waivers from frozen with pain in bed one day, to mobile and focused another day (thus resulting in more disbelief that this is a real disease and not a choice). People like Katrina Hansen, a Danish girl who was forcibly removed from her bedroom of her parents’ home. She was kidnapped by the government and held captive at Hammel Neurocenter. Denmark views ME/CFS as a “functional disorder,” a psychosomatic illness (it’s all in her head). Her parents were forbidden to see her and told their delusions were keeping Hansen sick (it was all in their heads, too).
Brea shows the cycles of illness, improved health, relapse she experienced as anti-viral treatment or mold avoidance gave her brief windows of relative health that ended abruptly with intense pain and profound malaise. Millions of people are living versions of this story and the problems do not originate in our heads as mental illnesses. Patients and parents of children with ME/CFS are better informed than most doctors. Parents fear their child will be kidnapped. Both know names that could end up on the memorial list. The suffering from symptoms can be intense, but it is the weeks, months, years of fatigue and pain, the lack of hope for improvement, and the absence of understanding from doctors and the public that results in suicides. ME/CFS can be a life spent in bed, avoiding light, sound, and movement.
The film has already won seven awards and is short-listed for an Academy Award nomination as Best Documentary Feature.
Ultimately, Unrest is a study on love and compassion. It invites medical providers to reflect how they can best support patients and caregivers grappling with any lifelong illness for which there are no clear answers and to reconnect with the reasons they first choose their healing profession.
Unrest was created from illness but it also reveals how illness can deepen our relationships with ourselves and others, and can spark new relationships in a previously unknown community. By telling our true stories, Brea brings herself and ME/CFS patients out of hiding.
The film is available to stream for free on PBS for a short time, and on Netflix and elsewhere.
Join us next week at 4pm PT when Occupystephanie tells her story of how sudden disability altered her marriage:
When Love Comes with Burdens.