Unrest, a new documentary, explores the stigma surrounding chronic fatigue syndrome.
Isabella Rosario
Last semester, I began experiencing unrelenting fatigue and muscle pain like I had never felt before. For weeks, I could barely go to class or even stand to do the dishes. I begrudgingly made an appointment at UI Student Health & Wellness.
The day before my appointment, I went down the rabbit hole of Googling my symptoms. One result I came across was chronic fatigue syndrome. When I brought up the possibility of the condition at my appointment, the doctor chuckled and told me that it was not a real illness. He said my symptoms were most likely the physical manifestation of depression or anxiety — i.e., it was all in my head. He gave me a handout for University Counseling Service and sent me on my way.
Soon after, I visited my primary-care doctor back home, tested positive for pneumonia, and was promptly given antibiotics. So much for “all in my head.”
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Fast forward to last week’s PBS release of Unrest, a documentary by Jennifer Brea. She was a Harvard Ph.D. student preparing for her upcoming wedding when she was struck with a high fever. After the fever broke, Brea experienced dizziness, recurrent infections, and debilitating neurological symptoms. Her neurologist diagnosed her with conversion disorder. He said Brea’s physical symptoms were in response to some psychological trauma she may not even remember.
Brea was eventually diagnosed with myalgic encephalomyelitis, more commonly known as chronic fatigue syndrome — a very real illness twice as common as multiple sclerosis and recognized by the World Health Organization since 1969. Directing from her bed, Brea interviews people from around the world with the condition, which causes fatigue that does not improve with rest, memory problems, widespread pain, and more symptoms that range in severity; 25 percent of sufferers are either housebound or bedbound for long periods. And yet, they are continually dismissed and disbelieved by doctors who psychologize their symptoms—especially if they are women.
I hadn’t heard of conversion disorder prior to my appointment at Student Health, or at least I thought I hadn’t. It was originally called hysteria, which Plato described as women’s uteruses “blocking passages, obstructing breathing, and causing disease.” In the 19th century, Freud dropped the uterus component and instead theorized that people could subconsciously convert psychological pain into physical symptoms — which is exactly how my first doctor explained my symptoms. Today, hysteria — renamed “conversion disorder” — is diagnosed two to 10 times more in women than in men.
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And so it comes as no surprise to me that ME/CFS — an illness two to four times more common in women — is not taken seriously by the medical community. It comes as no surprise to me when I hear stories from female friends who have had doctors dismiss their fevers or coughs as stress-related. Multiple sclerosis was diagnosed as hysterical paralysis until CAT scans revealed brain abnormalities. Why are we repeating this narrative with ME/CFS almost 50 years into its recognition by the World Health Organization? Why is it that when doctors do not immediately have the answers, they assume an absence of biological cause?
I do not believe the medical community is full of raging sexists. Rather, my experience and viewing of Unrest illustrated to me how incredibly human doctors are — how they are susceptible to unconscious biases and sexism in the same way all of us are. And how they, in congruence with society, would rather offer easy explanations for the unfamiliar.
As we embark on a new semester, I hope we can open our minds to the diversity of others’ experiences and the class material presented to us. With persistent curiosity, our generation can be the one that looks deeper than hysteria and other flawed explanations for what we do not yet understand.
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