Words by Sawyer Dohman
It started, as all wars do, with a single conflict: me versus gravity. My laptop was heavy and required more effort to lift onto my desk. I had to heave my own body into the air at dance class for the leaps. And it started slowly so that by the time I realized something was wrong I was too weighed down to start fighting back.
I wondered, had it always been so hard to keep my eyes open after lunch? When did digestion become such a task? Maybe it had always been like that. Maybe I just needed to get more sleep. For the first month or four, even I thought I was just being lazy.
The line that separated Before I Was Sick and After I Became Sick is blurry and vague, but by the summer between my junior and senior years of high school, I’d decidedly found myself over that line.
I was seventeen, had two jobs, was participating in training camp on the dance team off-season, and had no idea what was wrong with me. I’d always been a busy kid and wasn’t necessarily doing more than I had in years previous.
By then, the pervasive sleepiness filled me up so there was hardly room to think about what may or may not have been wrong. I was frustrated, sure, but I was mostly sleepy. And then the headaches, in those days occupying most of my afternoons, filling me with static—brain, bones, and skin all buzzing—and making it hard to read, hard to watch movies, hard to carry a conversation.
It wasn’t until my senior year that I started to get more scared than sleepy. I knew there was a time before I felt so horrible, vaguely remembered it, and I couldn’t see an end in sight. The idea of a doctor wasn’t necessarily appealing; growing up, I saw doctors for ear infections and strep, but that had been the extent of it as I remember. I’d always been a healthy kid.
Eventually, I worked up the courage to talk to my mom. And then again, hinting at it. And again, until I was sat in my GP’s office, the man who’d been my doctor just about my entire life.
That first attempt didn’t go well. Haltingly, sat on crinkly paper and with my heart hammering in my chest, I tried to explain what was happening to me.
“I’m exhausted when I wake up,” I confessed. Earlier that week I’d woken up already so tired I was crying.
“Sounds like a case of perfectionism,” he said, shooting a conspiratorial glance my mom’s way. “I see it all the time in young people, especially women.”
He suggested, in his expert medical opinion, that I stop doing so much homework and drop out of a few dance classes.
Over my dead body, I thought, too busy holding back tears to say it aloud. (True to my word, though, I didn’t miss a day of school, a single dance class, or a lone homework assignment for being ill the entirety of my senior year.)
I fell into a rhythm, as people are prone to do.
In the summers I had headaches like clockwork. I could plan for 3-4 hours of productivity in the mornings, followed by a quick crash. Midday naps granted a reprieve of up to an hour and a half. My vision fizzled out in a headrush just about every time I stood up. This could occasionally be avoided if I was (1) currently eating, or (2) careful not to sit for more than ten minutes at a stretch. I was uncomfortable, but okay, as long as I didn’t stay in the sun too long.
Worse still were the winters. The fatigue was all-encompassing, like going around in three winter coats; maneuvering through the world was a clumsy and inconvenient affair. The joints in my fingers ached when I picked up my guitar. My leaps in dance class barely got off the ground and left me hungry for oxygen. The depression and the illness started to converge in those months. It was dark all the time and things were so hard that my will to do them wilted.
Neither were as bad as the spring and fall. For all their faults, winter and summer were more-or-less stable states. The thawing of spring and the freezing process of fall were acutely painful. They left me curled up, facing the back of the couch, the rest of reality smudged away. The doubt fell away and single-minded certainty took its place: something is wrong. It was, if nothing else, vindicating.
The first solid proof, however, came midway through my undergrad career, during a summer appointment in my hometown.
“Mono,” the nurse said.
"What?" I said again. “I never had mono.”
“You did," she insisted. “Markers stay in the blood, so we can tell after the fact. Maybe you got a false negative at the time.”
The knowledge is of little medical use this long after the fact, but it means something. Maybe only that I wasn’t entirely wrong, but I’ll take it.
Admittedly, the routine didn’t change a whole lot after that. Summers are uncomfortable, winters weigh me down, transitional weather atmospheres hurt.
In general, I don’t mention it. Not a single professor knew, nor any of my employers. There are a couple of friends I’ll complain to, but it’s not like they can change anything, so what’s the use?
Recently my regular doctor (shockingly, the same one to diagnose me with Perfectionism at 17) was out of town, so I saw someone new. A woman. Within ten minutes she had new ideas, was ordering blood tests, and asking me if there was anything else I thought worth checking for while we were at it. I stumbled through the answer, flummoxed, as this was the first time such a question had ever been directed toward me.
She was downright helpful, though I had to spend the next three weeks trying to make the next appointment with a specialist. (They’ve since given me the next available appointment, nine months from now when I’m not even slated to be in that state.)
The process is an exercise in exhaustion, even though it’s going more smoothly than it has in years.
Historically, I've done my damnedest to keep my hurt and exhaustion under wraps; if I don’t mention it then people don’t have the chance to undermine it. If my chest hurts and my muscles twitch, or if I’m so tired I forget my own name or which way my house is—it’s mine, and if we don’t talk about it, it stays that way, only as serious or routine as I make it.
If ever my problem was perfectionism, I’ve been cured. These days I run on hope and guess work. I’ve learned to trust myself, even if that only means I have to trust myself to throw spaghetti at the wall.
If I’ve learned anything over the course of my unwellness, it's this: nobody’s authority rules over my own when it comes to me, just as you should be the ultimate authority on you.
Click to Read Next: Sick & Tired: One Woman's Journey to Less Stress
About the Author:
Sawyer Dohman is a recent graduate of Bard College with a degree in fiction writing. Originally from South Dakota, she currently lives in New York with her two teachers-in-training housemates, five rats, and a rather cat named Yoshi. At the moment, she lays claim to the titles of assistant, driver, editor, and babysitter.