It’s (Not) in Your Head: When Bodies Defy Logic
Elizabeth Lewis“If you say too little they can’t help you, and if they say too much they think you’re kind of … a mental patient.”
Less than five minutes into Jennifer Brea’s stunning new documentary, Unrest, her husband captures this central tension for people with rare or undiagnosed conditions and their loved ones. Brea has myalgic encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome, and has been rushed to the ER. Viewers are thrown into the couple’s journey head-on, pushed to grapple with how the misleadingly clear language of her diagnosis collides with gaps in current medical knowledge plus the stigma of a condition still dismissed by some as psychosomatic.
Unrest offers a fascinating window into the strategies of such patients for whom medical explanations do not yet exist — not adequately, at least. The documentary centers on Brea, who is also the filmmaker. While in graduate school at Harvard, she fell ill with a fever that was high, but otherwise unremarkable. In the aftermath of that ailment, however, Brea began to experience a constellation of symptoms marked by increasing weakness.
As painfully depicted in the film’s footage, she struggled to do things that were once easy for her, such as speaking clearly or walking home effortlessly to her apartment. Instead, we see Brea crawling on her hands and knees up a flight of stairs, down the hall, and hoisting herself into bed. We see her fall, pass out from exhaustion. Thanks to her early decision to document this experience on video, we are able to witness — after the fact — what appears to be the inexplicable unraveling of her body as she knew it.
As an anthropologist interested in rare and undiagnosed disorders, I’m intrigued by the new attention to this topic. When I was in the midst of my dissertation research several years ago, people were often surprised when I spoke of disabilities and health conditions that were evident, yet largely unexplained and, in many cases, nameless. It wasn’t that they had trouble grasping the idea that an illness or condition could be rare or undiagnosed.
Most people simply not have the framework for conceptualizing such rare or unruly forms of difference. Unless they had experienced something similar personally, most took a baseline of diagnostic clarity for granted. A disability or chronic condition would correspond to a clear diagnosis, they assumed. The diagnosis, in turn, would provide objective knowledge, potential treatments, and information regarding future outcomes. I was interested in what happened when this system broke down, which happened far more than many realized.
Several people mentioned Brea’s documentary to me when it was still a work in progress, having heard about it through her crowd-funding efforts for the film. I vaguely recall visiting her Kickstarter page. The project was going by the name “Canary in a Coal Mine” and had a funding goal of $50,000. I was intrigued, but was not sure how ME fit into my research. I was too early in my project to realize the similarities between the experiences of patients with ME and those of people I encountered through my research on rare and undiagnosed genetic disorders.
Fast-forward to this January, when Unrest premiered on PBS stations across the country and then launched on Netflix. I was on the edge of my seat throughout the film. The stories were all too familiar, from the initial trauma of learning that biomedical answers did not exist to the ongoing hustle involved in constructing knowledge and community from seemingly individualized circumstances.
In watching Unrest, I thought back to many of the parents I interviewed about their experiences with children who were at one point undiagnosed. I recalled the dad who spoke of his son’s first few years, in which the child barely slept — far beyond a typical family’s bedtime struggles. The boy was crying, presumably in great pain, but no one could figure out why. He also exhibited behaviors that potentially suggested autism, such as delayed language and stimming, but could also mean nothing more than a meaningless variation in child development. Did the pieces fit together in a coherent puzzle? Without precedent from similar cases, it was impossible to know. Like Brea, the family struggled to be taken seriously.
The boy’s father recounted trips to the doctor after both he and the child were unable to sleep for weeks on end. The parents adamant that their child was in pain — somewhere, for some unknown reason — yet specialists continued to question their account, writing them off as neurotic first-time parents. The story I remembered most clearly is an encounter this family had with a physician at a renowned medical center. After the parents explained the situation to the doctor, he proposed a solution to the crisis of sleeplessness in the home: simply spray the boy’s pillowcases with lavender to help him calm down at night. Another physician suggested having the child sketch when he woke up in the night, presumably to calm him. The boy was too young to hold a pencil.
But, as Brea notes in Unrest, when real suffering happens behind closed doors, it seems less real to the outside world. It is far too easy to dismiss as “all in your head” and, if we look closely, many of us can relate. In an age of Google and WebMD, who among us has never engaged in medical speculation or casual diagnostics? We have all, I would wager, been on both sides of this, at some point doubting both ourselves and others. I won’t delude you by pretending I have never dismissed a loved one’s health claims as psychosomatic, based on little more than preexisting knowledge and a hunch of my own righteousness. I know I am not alone.
As we see in Unrest, this impulse to take doubt as a starting point can be catastrophic. It’s the undercurrent in Jennifer Brea’s story and also in the father’s experience with his young son. Health struggles must be constant and visible to be valid, or so goes this thinking. They create an insidious circle in which identity becomes dangerously collapsed with diagnosis. Lapses in pain and suffering will, in these spaces of diagnostic doubt, trigger speculation of something psychological or otherwise external to the body. This, for Brea, is part of the problem. She can appear healthy and strong, but then crash from exertion after the fact — after she is no longer visible and public. And, as she reminds us in the film, “When we crash, we disappear.”
I think of how the clinical language in parents I meet makes them seem, initially, informed, and then borderline unhinged. As Brea’s husband ruminates at the beginning of the film: “If you say too little they can’t help you, and if they say too much they think you’re kind of … a mental patient.” The systems for both health care and disability services assume that good patients — model patients and families — have a degree of medical literacy, just not too much. Too much is suspicious. Too much throws off the balance of power. Too much sounds like the stuff of paranoid online message boards, ranting fringe groups, or conspiracy theorists. It’s a delicate balance. Families and patients are expected to have the time, social capital, and educational skills necessary to grasp such complex materials — and to know not to push their knowledge claims too far.
And, yet, here we are at a time of rising rates (or awareness) of disability and chronic illness coupled with unprecedented digital access to both information and misinformation. There’s a peculiarly modern balancing act involved. We know better than to Google our most recent health scares, and yet we do it. The question is how we sift through what we find and how this information — and, again, misinformation — unfolds in clinical settings.
Unrest offers a window into these contemporary questions of ambiguous bodies. It provides an opening — a model for a new or newly explicit narrative for differences that are seemingly unusual but, in fact, far more common than we might realize. The film dwells in the blurry zones of diagnostic questions. We watch Brea experiment with treatments and approaches that fall outside of biomedicine, from worms and kombucha to green juice. In one scene, she and her husband road trip to the Southwest in an effort to escape molds where they live, having read that this improves daily life for some people with ME. We see her flourish in the desert, walking unaided — strong, confident — along the dry, rocky landscape.
But we see her lying on the ground outside of her home after a day at an alumni parade at Princeton, her garbled words almost impossible to understand. We watch her setting up her space inside of a tent in her backyard, talking her husband into changing his clothes yet again since he had gone inside and potentially picked up mold on the fabric. He says “I cannot change clothes every time I walk in and outside of the house!” She asks him to shower and put on new clothes. “You have to appreciate. It feels insane. I changed my clothes an hour ago and now I’m changing again. It’s a little maddening.” He walks away and we are left watching Brea in her tent. The camera lingers.
The significance of Unrest goes far beyond the parameters of a particular condition or disability, and the film is more than a memoir of an individual or a narrative of a diagnostic community. The intervention, instead, is that it is a critical demand that outsiders look and see. The film is a reckoning for rare, invisible, and undiagnosed disability communities. It is an insistence that these stories deserve their own cultural script, their own narrative to give broader structure and intelligibility to people who have not experienced what it means to be or to care for someone who is rare. Unrest is, at its core, a demand for acknowledgment. It insists on considering embodied experiences that resist tidy categories or labels. It makes the viewer uncomfortable, perhaps even doubtful. And it dwells in the ambiguous zones of difference. Unrest is not an answer or a cure, but it is an opening. A step.
And people are paying attention.
Featured image caption: Unrest trailer. (Courtesy YouTube)
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It took me 5 years of getting worse while being told, “Well, it isn’t X (whatever the recent specialist had tested for), you’ll just have to live with it” before I found an alternative health practitioner who diagnosed me with Non-Addison’s Hypoadrenia. I followed up with a more open-minded GP who used a saliva test to confirm the diagnosis. But it got me nowhere — there is no treatment, and no cure, and most mainstream medical people deny its existence even though they cannot explain why, no matter how diligently I follow a careful nutrition plan made by a nutritionist, and no matter that I work out — hard — 5 days a week under the guidance of a personal trainer — and I get rest and take vitamins and do all the right things — for years without end — I continue to gain weight. I remember lamenting to one mainstream provider — “Do I have to be obese before anyone will help me?!?!?” Well, I have gone from 125 pounds and a size 6/8 to 203 pounds and a size 18/20 and still no one has found help for me. I continue to workout and eat properly, to no avail. My weight is now causing secondary health problems. But when I ask a doctor what I can do, I am told, “Lose weight” — as if were I not so lazy and gluttonous, I wouldn’t have this problem — it must be a personal failing that I am fat when I used to have a figure like a panty model. In the past year or two, I have added peri-menopausal to my health woes — making it even harder to deal with weight gain.
I knew right away when I developed this condition — it felt like a switch had flipped inside me and something had changed. But I’d been fit and trim for years, and no one would believe me. What little I have found online, aside from mainstream medical practitioners scorning and ridiculing anyone who “claims” to have this “non-existant” condition, tells me that it is a not-uncommon secondary condition for people (like me) with PTSD, especially from an on-going circumstance rather than a one-time trauma. My adrenals have ceased to produce gamma aminabutyric acid, the amino acid that tells the body to come down after an adrenaline event — tells the body to stop slowing the metabolism, stop overproducing cortisol — in short, to stop the “fight or flight” mode in which my body is permanently stuck. I can take GABA over the counter — it’s not even expensive — and that helps with the PTSD symptoms, but it doesn’t work like GABA produced naturally in the body and doesn’t help my metabolism. I was lucky enough to find a professor at work who was doing research on metabolism and she did some testing on me; we found that my metabolism runs at 49% below what it should. Basically, that means no matter how hard I work out, no matter how strictly I restrict my calorie intake, my body will not allow me to lose weight. I think my diet and workouts may help slow the rate of gain, but I just keep getting bigger. My body is a nightmare in which I am forced to live.
Still the mainstream medical profession continues to insist that the condition does not exist, so no research is being done, no treatments are being developed, my insurance company does not recognize it so any alternative treatments I try (none of which have worked so far) are not covered.
And always, people I have long known look at me and assume I have “let myself go,” when, in fact, I have been fighting so long and so hard and I am so tired. The condition is different — the symptoms don’t come and go, or just happen “behind closed doors,” but the experience of these other patients resonates with my own, most particularly in the arrogance of mainstream medical professionals who are not willing to consider there might be health conditions about which they know nothing.