On sick communities and Jen Brea’s Unrest
I can’t walk, but I can putter. Around the house. Once in a while around the grocery store. But if I over-putter. Or stand too long. Or talk too long. Or play guitar too long. Or read too long. Or write too long. I get very sick. If I overdo it even a little, go past my “fuel envelop” (a metaphor one doctor uses for how much a particular person with this illness can safely exert at a particular moment in time) I am in such excruciating pain I plead with god (I am a mildly religious atheist) for the kindness of unconsciousness.
For a time, I refused to accept that I couldn’t walk. After my initial diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME) in the summer of 2014, I continued to try to push myself. Mostly because I didn’t understand why I couldn’t do the things I used to do. Why I couldn’t go for a walk around the block or swim or bike or do my morning yoga routine. Why everything hurt and why if I exerted myself (in ways that used to seem mild) everything hurt a million times worse. I just didn’t get it and tormented myself. I began to wonder if certain doctors were right—that my symptoms were all in my head. Was I making this up? If I could only figure out the right mindset, would I be okay?
Meanwhile, people were disappearing from my life at alarming speed. Friends, colleagues, neighbors who used to say hi and now, when I sat on the front porch, hurried past the house without looking my way—or glanced at me and glanced away, hoping I hadn’t noticed them. People I came into contact with were saying all sorts of questionable things. “I’m tired too,” (i.e., and still able to work). “It’s all in your head.” “You’re just stressed out.” “Everything happens for a reason.” “Just do some yoga.” “Just do some gardening.” “All you need is a vacation.” I couldn’t go to the corner store without being sick for hours. Even just being in a car a little too long could be disastrous. But I’m supposed to take a vacation? From what? My body?
In 2015, I went to an infectious disease doctor in Boston who specializes in CFS/ME. I was very lucky to get an appointment with her. If I didn’t have access to excellent health insurance and to generous friends who were willing and able to drive me there, if I hadn’t had a friend who knew of the doctor and how to get a referral to see her, if I hadn’t had a primary care physician willing to refer me to this doctor (even though my PCP didn’t “believe” in CFS/ME and was always grumbling that she wanted to find out what was “really wrong” with me, she still agreed to help me get an appointment with the specialist), I might not have gone to see the infectious disease doc in Boston, and my story might be even more troubling than it is. But I was able to go see her, and after getting grilled for over an hour in her office (which was not in any way set up to accommodate the needs of CFS/ME patients) and after she had me get blood taken for a lot of tests and after she sent me to a rheumatologist to make sure I didn’t have a distinctly rheumatological disorder (though I’d already seen a rheumatologist closer to home who ran many tests and made inappropriate comments about me being trans and was annoyed by the fact of my symptoms and doubtful of their actuality, and tried to ping-pong me back to the horrid local infectious disease doctor who sent me to him—an infectious disease doctor who said that the Stanford researchers who are researching the connections between certain infections and CFS/ME are crazy and that I was crazy for trying to do any research about my illness and wasn’t it funny that only educated people get so-called CFS/ME)…after several appointments and many tests, the Boston infectious disease doctor gave me her official diagnosis and referred me to a pulmonologist, someone who tests most of her CFS/ME patients for circulatory and mitochondrial issues and who had found, the last I spoke to him, that every single one of them had either significant circulatory issues due to autonomic nervous system dysfunction, or mitochondrial dysfunction, or both.
A year and a half into being sick I went to this pulmonologist for a test and had to ride an exercise bike with a catheter in my carotid artery and in my wrist so they could take blood every few seconds and track my blood oxygen levels as I exerted myself. At a certain point not long into this exertion my blood pressure dropped so profoundly that I was getting, at my highest points, only 21% of expected blood oxygen.
I’m grateful I did this test, because before doing it, I was really doubting, with the help of doctors and other community members, the truth of my own reality. After the stationary bike test I was incapacitated for over six months. But at least I had a “respectable” diagnosis, a clear understanding of why I couldn’t walk. I have Severe Preload Heart Failure. A condition caused by autonomic nervous system impairment. Thankfully, it’s a bit more “serious”-sounding than the poorly named “Chronic Fatigue.”
A lot of people with or without medical education of any kind like to deny the possibility of chronicity. Of chronic infections that don’t go away with a short (or even a long) course of antibiotics. Of the obliterating fatigue that often goes along with CFS/ME and other chronic illness. But there are people with this illness for whom most forms of exertion (even deep breathing, even yoga, even gardening, even sitting on the porch and “getting some fresh air”) are excruciating, dangerous and/or incapacitating. For some sick folks, the exertion of lifting a glass of water to their lips is unmanageable. For others, sitting up. For others, standing. Some people with CFS/ME are able to live more active lives, can work part- or full-time, though they often struggle in other ways. At least 25% of people with CFS/ME are homebound and/or bedridden. I fall into this category.
In her TED Talk “What happens when you have a disease doctors can’t diagnose,” Jennifer Brae articulately and eloquently describes what it is like to have a devastating illness that is not recognized by most western medical doctors. She tells the story of going to a neurologist who diagnoses her with “Conversion Disorder,” the modern-day way of saying hysteria. The neurologist said Conversion Disorder, related to a past trauma, accounted for all of Brea’s symptoms, from her infections that she treated with antibiotics to her disabling fatigue. Either it was Conversion Disorder, the neurologist said, or Brea (a graduate student) was just stressed about final exams. After hearing her Conversion Disorder diagnosis, Brea decided to try to push through her symptoms and walk home from the appointment. This exertion had devastating consequences that lasted for years.
The neurologist I went to see after I wound up in the E.R. with convulsion four months after getting the flu-like illness that started my descent into full-blown CFS/ME, spent five impatient minutes with me, ran no tests, and told me that my symptoms were “psychogenic.” (“Having a psychological origin or cause rather than a physical one.”) This is irresponsible and dangerous behavior, not to mention staunchly unscientific. To brush off concerning symptoms and tell someone with a serious illness that their illness isn’t, in essence, real, keeps people not only from getting appropriate care, but also from taking care of themselves.
I appreciate Brea’s ability to articulate the serious consequences of irresponsible misdiagnosing of CFS/ME patients. She clearly describes a medical system set up to dismiss people like us. Because they have, for various reasons, created categories that don’t include us and, and because they refuse to acknowledge our very real experiences, we don’t know to avoid over-exertion or how to keep our symptoms to a minimum. We are subject to dangerous isolation and have people questioning the validity of our illness at every turn, which can start us questioning ourselves, and can also cause our loved ones and community members to doubt our experiences and to refuse to support us in any way. The emotional torment of having an illness you don’t understand—and the absence of access to adequate support and clarifying information—amplifies the devastation of having a disabling or debilitating chronic illness. For many, the lack of support leads to poverty and depression and even death.
I was lucky to get a CFS/ME diagnosis early on (within the first year). But I first got that diagnosis from a local doctor who ruled out everything else he could think of and said therefore what I had was CFS/ME. He shrugged. Gave me a pitying look. And sent me home. He didn’t give me any tips or coach me about how to manage the illness. He didn’t give me contact information for any support organizations. He just sent me home with a shrug and a “bummer for you.” I had no idea what he meant by CFS/ME. I had only known one person ever who was open about having this illness and it was someone I met only a few times in the mid-1990s. A friend of a friend of a friend. I can still remember her slow, careful movements. The strange and meticulous way she navigated a room and prepared her meals. I didn’t understand it and frankly it frightened me. Now the memory haunts me. Because I had no access to understanding and I lacked any curiosity or compassion. Maybe had she been a friend or a closer acquaintance I would have tried a bit harder to understand her experience? I hope so. But there’s no way to know. Now, suddenly, I had to figure out how to have compassion for myself, how to meet my basic needs, how to manage my daily life, how to maintain some kind of social life. I had to, in essence, learn how to be sick.
One thing people without a debilitating chronic illness might have a hard time understanding is that it takes time to learn how to be sick. For those of us with access to resources to survive, we still have to figure out how to feed ourselves, how to get to appointments, how to stay in connection with friends/loved ones, how to deal with all of the horrible things people say to us. How to process the many losses—all the things we can no longer do, all the people who stop being in our lives. People who, after we tell them unnumbered times that we have an incurable chronic illness, say, “Whelp. See you when you’re better.” Or who simply stop returning phone calls and emails. It takes time to figure out what we can and can’t do, though it’s never an exact science—the borders of what is manageable and unmanageable are dynamic and different for everyone. It’s like ocean waves lapping up on the shore. Their contours are always shifting. Just so, one day I might be able to play guitar for an hour or more and be okay, and another day, after an hour of playing, I might be a convulsing, aching, miserable mess. Some days five, ten, fifteen minutes is all I can do. And on my worst days, I can do nothing but lie still in my dark and quiet room. Some days I might be able to visit with friends for an hour or two or even three, and some days the sound vibrations of my own voice are a kind of torture.
It takes time and practice, a lot of trial and error, to learn to navigate a minute, an hour, a day. What has helped me most is talking it through with people who understand—being in communication with others who share similar experiences.
Thankfully, soon after my diagnosis, a friend connected me with a friend of hers who has CFS/ME (or Ehlers-Danlos syndromes, or some combination). She came over and sat with me, listened to me, understood what I was going through. She described exercise intolerance, something I definitely had but hadn’t heard of before. She explained that most people with CFS/ME have sensory issues and could be said to be in something of a chronic migrainous state (thus helping me understand why I was profoundly noise-, smell- and light-sensitive). She described some autonomic nervous system issues that can affect many of the bodily systems of people with CFS/ME, particularly circulatory issues in the form of postural orthostatic tachycardia syndrome and/or Preload Heart Failure. She directed me to the infectious disease doctor in Boston whose CFS/ME diagnosis was “respected” and who then sent me to get other, helpful tests.
This is all to say, that one really unique thing about people with CFS/ME is that we are often in the position of teaching ourselves and each other how to manage our illness. Doctors rarely help in any way with this. At least not doctors I have come into contact with. And, in fact, many doctors will do more harm than good.
Most of us with CFS/ME cannot recover from exertion. It is hard for people without exertion or exercise intolerance to understand this. Most people, when they exercise, rebound pretty quickly. Even if they’re sore and tired, they have endorphins. They feel great. In a day or two they’re back to exercising. But those of us with CFS/ME have nothing but excruciating pain and obliterating exhaustion after we exert ourselves past the point where it is safe. I think Jen Brea made this failure to recover from exertion legible in her TED Talk and in her film Unrest. And a lot people with this “unrecognized” and very serious illness, some who cannot even sit up in bed, have little to no medical support and very minimal community support and connection. She does not represent people who are entirely unsupported by their families and communities and health care systems, but she does make visible the struggle of people with this illness to find support. And most strikingly, she shows how many of us become—in our way, in the absence of appropriate medical care and social support—educators, and health advocates for ourselves and each other.
Why this illness is unrecognized is an important question and a sinister thing. For generations, really since the beginning of ‘Western Civilization,’ chronic illness has been treated with a certain amount of dismissiveness. There has always been, at least since ancient Greece, the propensity to blame people for their own illnesses. Either their lifestyles weren’t “balanced” or they were “sinning” and god was punishing them. And as chronic illness is more prevalent in people designated female at birth (dfab) and as dfab people have always had their realities questioned by patriarchal cultures, the dismissiveness and blame is amplified. This, of course, exacerbates the devastation of illness. A lot of people still maintain these cultural beliefs about chronic illness. Many people I have come into contact with—health care providers, colleagues, people in my religious community—seem to think that CFS/ME is an illness of laziness or a psychological or spiritual issue. A failure to “push through” or past a thin veil of illness or dysfunction into a world of better health. Things people have recommended to me: therapy, fresh air, vacations, walks, meditation, yoga, gardening…I do go to therapy and have for a while. As far as the rest, for the most part I can’t do any of it (I do sometimes get a little fresh air, which is wonderful, but it comes with a cost). But people who don’t “believe” in chronic illness or don’t “believe” in CFS/ME (there are people who think you can decide not to “believe” in an illness the way some people don’t “believe” in ghosts) don’t understand the difference between “can’t” and “won’t.”
In Brea’s film Unrest, she focuses on her own experience in a pretty powerful and intimate way. She connects with other sick people and their families as well, and we get a window into the lives of folks as they fight for basic support and treatment. Brea represents sick people fighting for their very right to exist. To be sick is one thing. To be sick and to be told our experiences are unreal; to be left to fend for ourselves; to not know how to manage basic self-care. This is another level of hurt.
This is perhaps why I was particularly captivated by one story in Unrest about a family in which a mother is sick and mostly bedridden. Her husband, after hearing the doctor say that her illness isn’t real, leaves her, but her daughters spend a lot of time with her and though she can’t leave the house, she is able to be with and support them. She describes how she was able to show up for her daughters in a way not all parents can, because they sat in bed with her and talked for hours.
Years later, one of her daughters became sick. It’s not clear why they are both sick. Whether there is a genetic predisposition, or if they were both somehow exposed to similar infections or toxic conditions, or if it was purely by chance. There is not enough known about this illness to answer that question. But what is interesting to me is that the daughter had a role model for illness. Illness was a normal part of life in her family and so she, in a sense, knew how to be sick. Her mother taught her how to be sick. And the fact that she loved her mother, that they cared for each other, took away the stigma and alien-ness of illness. Through trial and error, the mother figured out how to take care of herself and also how to remain a present and loving parent. And her daughter was able to do the same, but with much less uncertainty. What a difference it makes for an illness to be in some sense normalized. It was part of the family’s story and history, so the daughter didn’t doubt herself, lose the thread of life, or become dangerously isolated.
What has become clear to me as a person with ME, is the important role we play in each other’s lives. We learn how to be sick from each other. I have been on both sides of the divide now. I was once a person with a baffling, disabling illness and crippling self-doubt. I had no idea what was going on and my existential pain matched my physical distress. Then, I was taught by another sick person how to begin trusting my experience and taking care of myself.
And I have had the good fortune to be able to “pay it forward.” I have done my best to be of some support and comfort to other folks with chronic illness. And it is really nice to be able to have that to offer. Of course, one must be careful not to “project” one’s illness and experiences onto others. It is easy to want to diagnose someone with the same illness you have when their symptoms seem similar. At this point, though, I know enough to recommend a broad spectrum of tests and potential health care providers as well as certain supplements that are known to be helpful with a broad range of chronic illnesses with similar symptoms. But, I try to always keep in mind, everyone’s body is different and just because something helped me doesn’t mean it will help someone else.
Despite all the challenges we face, a lot of us with chronic illness, those of us who have the privilege of social and financial resources and community support, figure out how to be sick and patch together a manageable or at least survivable quality of life. We do this through trial and error, and with the help and knowledge of those who share their experiences and insight with us, we gradually figure out how to manage our symptoms as best we can. We figure out how to keep from getting sicker to the best of our abilities, which usually has a lot to do with not pushing. Not pushing through. Not pushing past. Not pushing at all.
In Brea’s film there are such wonderful moments of connection we get to witness. Brea reaching out to other sick people. Getting to witness them in their daily lives. Exploring their life alone and with family. There weren’t many people in this movie whose friends were present in any way. At least one stated directly that she has no friends. Many of us have no one but each other. Thankfully, each other is a sizable blessing.
Before getting sick, Dov Zeller struggled to sit still and often read while walking (in between swimming, biking, and yoga). Now he is an intrepid recliner. Though sick with a devastating chronic illness, he is determined to appreciate the ecosystems he comes into contact with. As it turns out, even a small world is full of endless complexity. He enjoys visiting with friends, reading, listening to audiobooks and classical guitar, and observing birds who drop by the window feeder. Zeller lives in Western Massachusetts, where he moved in order to complete an MFA in fiction at UMass Amherst. He has also lived in San Francisco and Oakland, California, and Brooklyn, NY, and he grew up in eastern Pennsylvania. He has two novels coming out this year.