We all know someone with a chronic illness. Given that 117 million people in the United States live with one or more chronic illnesses, we’re more than likely encountering someone in our workplaces, our homes, and our everyday lives who is navigating the ins and outs of sickness and the pain that accompanies it. Chronic illnesses are especially pervasive among women, and thanks to medicine’s long history of paternalism and ambient sexism, doctors regularly dismiss or disbelieve women who suffer with unexplained pain.
“In Sickness” is a weeklong series about chronic illness—and what the misdiagnosis, disdain, and marginalizing of people with chronic illnesses reveals about our culture.
This article appears in our 2017 Summer issue, Invisibility. Subscribe today!
Dr. Moran tapped his heavy silver pen against a sheaf of test results. “Well,” he said, “I’ve found the problem.”
I had arrived enervated in his office a few weeks ago, drifting through the door in a fog of weakness and fatigue. Headaches hammered me all day. I was 23 years old and my bones ached. I couldn’t feel my feet. My guts felt oily and torqued. Once a month or so, I would slip into a hot, dizzy spell that made the floor slant and my eyes blur. None of this was new.
I was there because he had a reputation as a diagnostic virtuoso. I had heard that he once traced one man’s seizures back to a rare South American parasite. They said no ailment was too obscure to escape his scope. I would put my name on his lengthy waiting list.
He was as thorough as they said. He wired me up like a dead auto battery, switched on the current, and measured each muscle twitch. He stuck syringes into strategic locations on my scalp. He timed me as I clumsily pushed plastic pegs into a puzzle board.
Now it had arrived: the moment my strange, bumbling body would start making sense. Dr. Moran’s eyes flicked toward mine, and then returned to his pages of data.
“It’s called conversion disorder,” he said, enunciating every syllable. “At some point in your childhood you likely experienced a traumatic event. Rather than processing that trauma, you’re unconsciously converting that trauma into physical sensations—performing illness, so to speak.”
I couldn’t think of a single thing to say.
“I’m going to write you a referral to a psychiatrist,” he continued, still looking down. “He’ll be able to help you sort this out.”
The skies opened up as I wrote out a check for the receptionist. I ran to my car and landed hard in the driver’s seat, wiping rainwater from my eyes. I dialed my mother with wet, shaking hands.
“Lovey, what is it? What’s wrong?”
“What happened to me?”
“What? What are you talking about?”
“When I was a kid. Dr. Moran says my sickness has something to do with trauma, that something awful must have happened, that I’m repressing it.”
My mother was quiet.
“Mommy, what happened?” My voice rose and broke. I swallowed the slick saliva pooling in my throat. “What happened to me?”
“Nothing happened, honey. Nothing happened to you that you don’t remember.”
“Nothing. I swear.”
Illustration by Panteha Abareshi
Dr. Moran was not the first physician to tell me my illness was psychological, nor would he be the last.
Experts in every imaginable specialty labeled me a malingerer, hypochondriac, hysteric, drama queen. I was diagnosed with an eating disorder and an anxiety disorder. I was prescribed Xanax and threatened with institutionalization. An emergency room doctor sent me home with “women just have pain sometimes.” An allergist told me I was breaking into hives because I wanted attention. “You must like feeling special,” he said.
I wish he was right. I wish this was about me, that this story was mine alone. I wish I couldn’t name a dozen friends who have been through the same thing, or recite a litany of horrific statistics: A man in pain waits an average of 49 minutes for treatment in the emergency room, compared to the average woman’s wait of 65 minutes. Women’s symptoms are more likely to be downplayed, disbelieved, or dismissed. Men in pain are generally given painkillers; women, sedatives.
Women are also far more likely than men to be diagnosed with conversion disorder, which was rebranded as “functional neurological disorder” by the American Psychiatric Association in 2013. The term “conversion disorder” was itself a rebranding. For nearly 2,000 years, it was simply called hysteria.
My doctors made it clear that there were two kinds of illness: those they could identify, and those that didn’t exist. My symptoms were simply shadow puppets cast by a mind that couldn’t control itself. I was confused. They were certain.
They were wrong.
The person who finally got it right was not even my doctor. Dr. Renault was a cardiologist specializing in chronic fatigue. I was a graduate student in science writing interviewing him for a summer project. He asked me why I had chosen him.
It had been six years since I had seen Dr. Moran. I was still so weak. So tired.
“I’m sick,” I said flatly. “I’m sick, and I don’t know why.”
“Ah.” He gestured toward two chairs around a broad conference table.
Eventually I ran out of questions. When I looked up from my notebook, he was observing me with an expression I didn’t understand. “I bet you’re hypermobile,” he murmured, almost to himself.
Gently, he explained what he saw. My fingertips bent backward like plastic straws as I gripped my pen. I supported my neck with one hand as if to keep my heavy head from dropping onto the table. The whites of my eyes, on closer examination, were pale blue.
“May I?” he asked, reaching for my arm and extending it outward. “Look at your elbow.” I did. It looked fine to me. He pointed at the hyperextended joint. “It’s not supposed to do that.” In a five-minute cursory examination, knowing almost nothing about me, he had spotted a body’s worth of signs and symptoms that scores of specialists had overlooked.
Dr. Renault gave me nearly an hour of his time, slowly explaining his suspicions. He recommended a good doctor in my city who would know what to do. That night he e-mailed me a packet of papers on the illnesses he was pretty sure I had.
Hypermobile Ehlers-Danlos syndrome (hEDS) is a genetic disorder that corrodes connective tissue. Postural orthostatic tachycardia syndrome (pots) affects the autonomic nervous system, which is responsible for breathing, digestion, and pumping blood to the extremities and brain. Mast cell activation syndrome (mcas) causes overblown allergic reactions to things like sunlight, exercise, food, and medications.
Three acronyms explained every symptom I’d ever experienced—the pain, the exhaustion, the nausea, the dizziness, fainting spells, headaches, even the hives—and some things I hadn’t realized were symptoms. The bruises perpetually spattering my legs. My laughable clumsiness. My translucent, fragile skin. Trouble focusing in school and at work. The difficulty absorbing nutrients that led to the weight loss, which had looked, in a teenage girl, a lot like an eating disorder. My racing heart.
With a diagnosis, my experience suddenly had a name. With diagnosis came the possibility of treatment and information with which I could reframe and reclaim my life.
There are no cures for these diseases, and I will likely never be well. But I have medication for the pain now and braces for my knees, shoulders, and wrists. I have supplements and exercises to help me sleep and make me strong. I’ve learned what warrants a trip to the emergency room and what will likely pass. I’ve accepted that, for now, I need a job I can do from home. I’ve attended conferences and met other women with my conditions. I’ve held their bruised hands and looked into their tired, understanding eyes.
Although I waited 29 years for answers, I was lucky. Eventually I got them. If I hadn’t had the economic privilege to go to graduate school, I never would have met Dr. Renault. I would either still be searching, or I would have given up.
In all my years of research and doctors appointments, I had never heard of any of these illnesses. One might think, as I did, that they must be incredibly rare.
They are not rare. But they are rarely diagnosed.
Symptoms such as pain, exhaustion, and weakness are invisible to the dubious eye and the CT scanner. There’s little room for a patient’s subjective experience in a medical system organized around quantifiable results.
All three illnesses are deceptively multi-systemic. Symptoms rotate through the body, sending sufferers from specialist to specialist in vain. The gastroenterologist you see for abdominal pain will not ask about your easily torn skin. A rheumatologist will not ask about your difficulty finding words.
Then there’s the scientific neglect. pots, hEDS, and mcas are not taught in medical school, and there has been very little research into their causes or treatments.
It’s probably not a coincidence that all three disproportionately affect women.
My illnesses are the result of molecular abnormalities brewed up in my body before I was even born. They’re indisputably real. I didn’t imagine them or bring them on myself.
The average EDS diagnosis takes 10 years. But most women will never be diagnosed at all. They’ll be referred to psychiatrists, or left to their pain, or sent home with prescriptions for Xanax. People with pots and hEDS are more likely to experience depression and anxiety. Researchers don’t know why. It could be neurological. It could be pain-related. It could, they say, be the consequence of being accused, over and over, of playacting.
My sleep this morning was unsettled by a familiar dream.
It started out promising, with a flyer on a telephone pole announcing auditions. A local theater was staging a play about invisible illness. I clambered onto the dusty black stage and read for the lead role, the sick woman. The scene flowed naturally. I felt good about my chances.
Then the director called and explained that he’d given the part to someone else.
He sounded like he was standing somewhere windy.
“We appreciated your approach,” he shouted, “but you just weren’t that convincing.”