The Mighty Logo

How a Lack of Social Support Worsened My Rare Disorder

The most helpful emails in health
Browse our free newsletters

Editor’s note: If you struggle with self-harm or experience suicidal thoughts, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741741. For a list of ways to cope with self-harm urges, click here.

From my old report cards, I know I overslept and missed the bus 58 times in my junior and senior years of high school. Sometimes I would wake up two or three hours after my five alarm clocks had gone off. Then, I would sneak into my closet to go back to sleep. I would lay out my blankets and pillows on the closet floor, curl up my body, knees to my chest, and close the closet door. When my mother came home from working the graveyard shift, she wouldn’t think I was in. I would doze off a foot under under my jackets and jeans, just as comfortable as I could be. Then I’d wake up sometime in the afternoon, after my mother had already gone to sleep herself.

I was always tired. When I did make it to school, I’d fall asleep in most classes. Then I’d get home around 3:00 p.m., doze off maybe half an hour later, and often not wake up until eight, nine, or 10 the next morning. I bought alarm clocks advertised as the loudest, with bells and chimes, and I bought pure caffeine on the internet to mix into everything I drank. Still, I slept entire days away.

At first, I chalked it up to my workload. I had taken 10 AP classes and played two sports. I was at the top of my class in sophomore year, though that class rank plummeted by the end of the next. I had always been academically successful, moving up classes, skipping a grade, and, even with my sleeping problems, I would graduate high school at 16. Part of me figured daily exhaustion to be par for this course.

No one who noticed, no teacher nor classmate nor coach, not my mother nor any other family member, ever brought up the question of whether there might have been something serious.

No one ever inquired about my health or suggested I see a doctor.

Instead, I got jokes, rumors, and accusations, even from my mother, that I must be skipping school on purpose. Maybe I was just being lazy, or maybe I had gotten into drugs. My voice lowered and became monotone, and my gait slowed. I lost weight because I wasn’t eating, and I wore the same clothes for days without showering.

I still showed up in my standardized tests, even though my grades became a mess. I could cut through, say, a two-hour-long test, even if I couldn’t function for a seven-hour school day. I was a National Merit Scholar, an AP Scholar with Distinction, and I had 99th percentile SAT scores. Some schools sent full scholarships, despite my grades –one was the University of Arizona.

I accepted their offer. Coming from chilly New Jersey, I figured I could rebound in the steamy Tucson sun. But at the U of A, my sleep trouble persisted. After my second semester, the university rescinded my scholarship. Professors sent me emails describing how “unmotivated” I seemed, how my “priorities seem to be elsewhere.” After three poor semesters and a 10-day trip to the psychiatric ward, my mother bought me a plane ticket back home.

For the next three years, I bounced from therapist to therapist for depression and anxiety. These suspicions weren’t unfounded, though. I had gotten into cutting my arm with razors and once attempted suicide, hanging myself with a belt until I went unconscious. Then, the belt gave and I woke up in a daze on the ground. However, in spots when my depression improved, when I felt motivated enough to work or return to Arizona, I still averaged almost sixteen hours a day asleep. Every therapist I met said it must be due to my depression, and that, if I could repair my mental state, then my sleeping problems would also resolve.

In early 2014, my primary physician referred me to a neurologist, who recommended I take a series of sleep studies. One of these was a polysomnography, an overnight sleep study. From its data, showing the time I spent in the various stages of sleep, came the critical evidence for a sleep disorder.

Most adults spend about 20 percent of their sleep in the REM stage, the deepest stage, where most dreaming occurs. However, in my polysomnography I only spent 4.8 percent of my sleep in the REM stage. With my body not entering REM sleep for more than three hours after I had fallen asleep, my neurologist suggested that my sleep failed to restore me, as if I were constantly sleep deprived even after being out for 12 or more hours. My neurologist and the testing physician who ran the polysomnography both agreed with a diagnosis of idiopathic hypersomnia.

Hypersomnia is sleeping too much, the opposite of insomnia. Idiopathic indicates the cause is unknown. It didn’t change, regardless of the medications I was taking. I had no known history of head injury or anything that might cause excessive sleeping. There was some strange neurology, something interfering with my sleep to where I could hardly function. Idiopathic hypersomnia has an estimated prevalence of 1 in 20,000. Remission occurs in about 10-15 percent of cases. There’s no FDA-approved treatment.

I went through medication after medication with little help. There had been antidepressants: citalopram, escitalopram, bupropion. Then I was prescribed stimulants: modafinil, armodafinil, and Adderall. I didn’t feel anything from the first two, and the Adderall gave me headaches. There was lorazepam, because I had panic attacks, and levothyroxine, to increase my levels of thyroid hormone, even though my tested levels were within normal range. I continued to see therapists for depression and anxiety, and, just as the situation had been in Arizona, there was little advice that helped me. There’s still, on top of my dresser, a sheet of sleep hygiene “tips and tricks,” describing how I should make myself sleep at certain times, wake up at the same time every morning, and not to use my bed for anything other than sleeping or sex. I couldn’t do anything with that advice. I could sleep at almost any time, anywhere, in cars, at desks. It had been a joke in school that I could sleep while leaning on walls in the hallway. Waking up at the same time every morning was impossible as far as I could tell, because I always slept through every alarm clock I had. My mother even put ice down my shirt once to wake me up. She told me later that I had screamed and knocked the ice out my shirt, and that my screaming was so loud, she would never wake me up in any sort of intense way like that again. She’d rather just let me sleep.

I still needed to be active, however. My mother told me not to expect any support from me “other than a room.” I needed to make my own money, pay all my bills, buy all my food. For my part, I also badly wanted to work. I saw being able to work full-time as a measure of functionality. If I could get up and work for eight hours a day, then I ought to be healthy enough to return to university studies. From 2013 to 2017, I found and lost so many jobs, I can’t count all of them. I worked for two Wal-Marts, four pizzerias, a shoe store, a flower shop, a book store, a gutter repair contractor, a flag football league, and some more. I lost all of these jobs, except for one pizzeria job because the pizzeria closed down, due to oversleeping. I overslept some shifts entirely, waking up later for work than I would have gotten off. At the shoe store, the manager, who lived nearby, offered to give me a ride to work. On the day he stopped by, I slept until noon and woke up with five missed calls and seven text messages. He had come to the house, honked his horn, knocked, called me on my unmuted, full-volume phone, and I just snoozed through the whole thing.

I tried to mitigate my shame by being obsessive about the time I spent asleep. I recorded on an Excel spreadsheet every hour I spent in any activity. I recorded the times I fell asleep and woke up, in an effort to keep them consistent. I recorded the times I spent working or looking for work, reading and studying, going to the gym, and so on. Sleep dominated, with an average of 13.9 hours a day for a month spent asleep. After three months with no change, I slipped into another depression.

My mother berated me about how “worthless” and “lazy” I was becoming. She kicked me out the house, an attempt at “tough love” to motivate me into keeping a job. I wound up spending a few months on friends’ couches, then the county homeless shelter, then the psych ward again, before my mother took me back in. I was crippled, nonfunctional. My mental state fell into fear, embarrassment, and self-loathing about what my life was and would become.

Then my hypersomnia went away. I don’t have a smooth way of saying how it improved. I didn’t change my diet or start taking a miracle plant extract or something. I just started sleeping less.

I remember the first week I spent sleeping fewer than 10 hours every day. It was the last week of April, going into May, in 2017. On May 2nd, I slept nine hours. Then on the 3rd, I slept eight hours. When I woke up, I felt fine, not tired, not dazed, not in the kind of weird stupor where I’d be falling over if I managed to wake up with this little sleep before. That afternoon, I realized something was up, and I started recording my hours again.

That week, I slept close to nine hours a night. Every night was between eight and nine hours of sleep, without an alarm, without any drugs, anything. And when I did set an alarm, it actually woke me. That summer, I found a job working at a local tennis center, attending to the courts and teaching tennis (I had played the sport competitively). I was late to work a few time, but I never had a problem with staying awake or missing entire days.

Since then, my improved sleep has transformed my health. I’ve been able to take care of myself, shower and eat at regular times, the normal things. It shouldn’t be a big deal, but regaining just this basic functionality has been, for me, a miracle.

With that said, there’s a newfound depression in realizing that, at 23, I have to pick up pieces of my life that before seemed guaranteed. My academic life is paused, and my social life is barely breathing. I’m not in contact with anyone I knew growing up or from when I was at Arizona. The area I live in is rather rural, without much in the way of recreational activities, so I spend most of my time writing, working out, and studying. Now I’m planning on taking community college classes and then transferring back to a four-year university, with the same academic goals in mind as when I first went to the U of A. So many years have gone by that I can’t help but be bitter at the situation. I should have already been where I wanted to be, I think, if I hadn’t slept so much of my life away.

If you or someone you know needs help, visit our suicide prevention resources page. If you struggle with self-harm or experience suicidal thoughts, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or reach the Crisis Text Line by texting “START” to 741741. For a list of ways to cope with self-harm urges, click here.

We want to hear your story. Become a Mighty contributor here.

Getty Images photo via AdrianHillman

Originally published: January 5, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home