When I was 16 at my first job, a haunted house, I met someone with narcolepsy for the first time. I asked her what the medical bracelet she had on meant, and she told me that she has narcolepsy, and that if she falls asleep behind the wheel, the bracelet lets the EMTs know why. To high school me, this seemed terrifying.
The most I had heard of narcolepsy were false stereotypes — people with narcolepsy were lazy and should just drink more coffee in the morning. I had never learned about narcolepsy at my public school, so all I had to go off of were these assumptions. Narcolepsy is much deeper than what people realize, the then 16-year-old me realized, and maybe if I had been educated sooner I wouldn’t have waited to go to the doctor for three more years.
My condition began developing when I was 14 years old. I started napping everyday after school. On weekends I would sleep for 12 hours every night, and still nap during the day. But teenagers need sleep, this is normal. COVID-19 came and I had nothing better to do but sleep all day, so that is what I did for seven months. Then school was back and I fell asleep during classes almost every day in my junior and senior year. My teachers must have thought I got no sleep at night but it was the opposite. All I could do was sleep. I must still be growing.
I hated myself because of this. I was aware I was napping my life away and I couldn’t stop. Hangouts with friends were canceled because I preferred to be sleeping. My parents would want to spend time with me and I would bail because I was so exhausted and couldn’t imagine leaving the house. They would wake me up from naps, telling me to enjoy the day, and I would get angry and would argue. My mom in particular, who had seen my depression develop and had experienced depression herself at my age, was concerned about my mental health. Me being depressed seemed to be the only reasonable explanation for how much I was sleeping. But I was doing well mentally. I just couldn’t handle being awake for an entire day.
I came to two realizations in my first month of college. First, I wasn’t growing anymore. Second, my constant exhaustion was getting in the way of my grades and my social life. I would sleep through my classes and leave hangouts with friends to nap. If I went to classes, I would battle falling asleep constantly. On school breaks, my main priority was sleeping and not spending time with the people I love who I don’t see as often anymore. It was getting in the way of everything.
I finally brought it up to a doctor, who was shocked at the amount I was sleeping everyday, and equally as shocked I hadn’t brought it up sooner. Tests were run and blood was taken to see if anything else was wrong with me that could cause extreme fatigue. Everything came back normal, and my doctor sat me down to tell me I may have narcolepsy. As she told me the symptoms of it, I felt seen for the first time in years. I am not broken or lazy like I had been telling myself. There is something actually wrong here. With that hope came fear. This is a lifelong condition. This is how I am forever.
Narcolepsy is a chronic neurological disorder that affects the brain’s ability to control the wake and sleep cycles. Its primary symptoms are excessive daytime sleepiness, changes in REM sleep, hallucinations/sleep paralysis and cataplexy. These are a lot of words, so let’s break it down. Excessive daytime sleepiness means that no matter how much sleep I get during the night, how much or how little, throughout the day I get more tired and more tired until I take a nap, or have a sleep attack. This also means, to me, that no matter if I sleep for 14 or 5 hours at night I am equally as tired during the day. Sleep attacks have gotten more intense as I get older. I can be in class, with friends, or even in the dining hall and I get hit with a wave of debilitating exhaustion. At this point everything goes out the window and my mind’s main focus is sleeping, no matter where I am.
With these sleep attacks, I also experience cataplexy. This is the loss of muscle movement and severe muscle weakness when experiencing strong emotions. For me, if I am experiencing a negative emotion in a strong way, my legs lose their muscle strength and I can’t stand up. It was terrifying the first time it happened but I thought it was a symptom of a panic attack rather than an underlying disorder, so I never said anything.
The next is our difference with rapid-eye movement, or REM, sleep. Normally, people enter REM sleep after 60-90 minutes of being asleep, and only at night. Because of my condition, I can enter REM sleep after only 15 minutes of being asleep, and during the day. This means cat-naps are very difficult for me to wake up from without an alarm. I also experience hallucinations. My hallucinations happen just as I am falling asleep. I hear people saying my name, and sometimes feel a presence next to me, but I know now it isn’t real, it’s just my brain beginning to dream while I am still awake.
I got a sleep study done. They hooked up wires to me and I slept in a hospital bed for a night. From this test, I found out I also have sleep apnea, which is where I stop breathing throughout the night, meaning I cycle in and out of a deep sleep. This also explains my excessive tiredness during the day, as the sleep I do get isn’t that productive to begin with.
I have grown to live with it. I am getting medicated, which will not make my condition go away, but can help me get through daily life easier. I am surrounded by amazing friends who understand that in my brain, sleep comes first. They have let me nap on their beds while at their dorms. I have an understanding roommate who knows I “sleep like a cat” (their words) but is perfectly fine with it. My best friend, who I have known since my condition started developing and was there for me the entire time, plans our days so I have enough time to nap in her bed when I take the train up to visit. My parents still get frustrated sometimes, but understand I can’t help it. My grades are getting better, as I learned to balance my time more effectively. I have come to terms with the fact that this isn’t something I am going to grow out of like I thought for years.
I still get upset about it, but I think back to the woman I met at the haunted house when I was 16, who I thought was awesome at the time, and still do. I saw her at a wedding this past November, and she was shocked at how much I had grown up. I told her I might have narcolepsy too. She immediately gave me all the advice she could, and wrote down the names of all the doctors she goes to in my Notes app. When I feel alone, I look at the name in my notes and feel hope. There are people in my corner who understand, and that makes everything okay.