I’ve felt tired my entire life. As a child, I would often fall asleep in unusual places and situations. I remember when I was in first grade, I woke up underneath my seat on the school bus. I must have passed out on the way home. The school had to call my mother to pick me up, and I was confused and embarrassed. I have countless memories of falling asleep at restaurants, friends’ houses, and in the car.
Every time, I could feel it coming: an irresistible sleepiness that told me I had to find somewhere to crash ASAP. Often when I woke up after these “sleep attacks,” as I called them, I was unaware of where I was and what was going on. It would take me a few minutes to process what had happened.
I learned how to cope with exhaustion and push through the day while struggling to keep my eyes open. Until eventually, I couldn’t anymore.
In the mornings growing up, I’d schedule in extra time so I could take several breaks to lie in bed while getting ready for the day. To keep my energy up, I start drinking copious amounts of coffee as I got older, as well as energy drinks and soda. I spent most of my time sleeping on weekends. It got to the point where my dad didn’t want me to hang out with my friends as late as I wanted to because he assumed that was why I was so exhausted all the time.
I always felt like something wasn’t right with me. When I couldn’t do the things I wanted to do or function at the level I thought I should be able to, I got really down on myself. In my mind, I was lazy and lacking in motivation, and this was a behavioral problem I needed to fix.
When I went to college in September 2013 to study psychology, everything became much more difficult.
I’d drive to school with wet hair and in sweats (having sacrificed getting ready for sleep), only to be struck with exhaustion. I frequently missed classes because I had to turn around, go home, and pass out for hours. When I tried to do homework, I’d fall asleep one page into the assigned reading. Writing college-level papers was extremely challenging, too.
As a result, my grades tanked and I felt completely overwhelmed. There were a lot of tears, panicked calls to my dad, and feelings of depression and anxiety over my academic struggles. Sometimes, I’d email professors to ask for extensions or leeway on assignments. But I’d feel guilty about making requests like that more than once per class, so many times, I didn’t say anything.
During an important seminar course, I was tasked with presenting my group’s final project to our professor. I slept through it all. I felt so bad for letting my group down and didn’t understand why I couldn’t follow through and handle my responsibilities. I knew I was smart and passionate about what I was studying, but for some reason, I couldn’t keep up.
By the time I became a junior in 2018, I knew I needed help.
I was convinced I had depression because of my oversleeping habit and low mood. I was also feeling really anxious. When I wasn’t at school or working as a server, I was sleeping around 16 hours per day. But even when I was “awake,” I’d often be in bed trying to complete homework or on the couch relaxing. For a while, I was prescribed antidepressants and anti-anxiety medications but I still didn’t feel better.
I thought I might have a sleep disorder like sleep apnea because it ran in my family and I never felt rested after sleeping. I finally visited my doctor in the spring of 2020 to address my sleep issues. I only had a year left on my parents’ health insurance plan, so I knew I needed to handle any pressing health concerns while I was still covered. At this point, I thought maybe I had insomnia. I woke up multiple times each night and always felt tired. My PCP put me on a mellow sleep aid, but I was referred to a specialist for a sleep study.
After my initial sleep study, the doctor told me she suspected I could have narcolepsy.
I arrived at the doctor’s office to go over my results, sure that I would be leaving with a CPAP machine for sleep apnea. To my surprise, the doctor said I had no signs of sleep apnea…but she thought I might have narcolepsy.
Narcolepsy is a chronic sleep disorder that causes overwhelming daytime sleepiness and sudden attacks of sleep. It’s not known what exactly causes it, but low levels of hypocretin seem to be a key factor. Hypocretin is a neurochemical in your brain that helps control wakefulness and rapid eye movement (REM) sleep, the sleep phase associated with dreaming. People with narcolepsy may have too little of it due to an autoimmune reaction that destroys the brain cells that create it, but more research is needed and other factors like genetics could also be at play.
The results of that sleep study showed that I had obvious signs of narcolepsy. A month later, I returned for a multiple sleep latency test (MSLT), another type of sleep study that takes place over the course of a day and involves periods of staying awake and trying to nap when instructed. Two weeks later, in October 2020, I went back for my results, and the doctor immediately confirmed that I did have narcolepsy.
I was so happy to have the answers I didn’t know I’d needed. The doctor encouraged me to join a narcolepsy support group to talk about everything I’d been through. Symptoms of narcolepsy often begin in childhood or early adulthood but can occur at any time. As was true for me, it’s common for people to suffer for years without a diagnosis or to be misdiagnosed with psychiatric disorders or emotional problems, according to the National Institute of Neurological Disorders and Stroke (NINDS).
My life did a complete 180 after I began treatment.
Today, I’m only a few months into treatment, which consists of a stimulant during the day to stay awake and alert plus additional medication to help me sleep through the night. I also schedule 20-minute naps to cope with daytime sleepiness, a common coping skill for people living with narcolepsy.
Now I feel like I’m the college student I always thought I should have been. It’s so much easier to look at my day, figure out what I need to accomplish, and make it happen. Because I’m functioning at such a higher level, my mood’s up, too. I can finally read extensive research articles and college textbooks *without* falling asleep, my relationships have improved because I don’t have to cancel plans as often, and I can even blow-dry my hair in one sitting (!).
I’m still very much on this journey, and I don’t want to give off the impression that I’ve been “cured.” For now, there is no cure for narcolepsy, and many people face lifelong struggles with symptoms and sleepy spells. My doctors have informed me that there will likely be a trial-and-error period to find the treatment that works best for me. So far, I’m off to a great start, but I can feel my energy leveling off. I’ll likely need to try several different medications in the future.
Knowing that I was managing untreated narcolepsy for most of my life, I now have a newfound sense of sympathy for my past self.
Despite all the good, I’m also still mourning all of the struggles I faced before my diagnosis. There’s so much to process, and to be honest, sometimes I become very upset. I feel sad for my younger self who at times thought she was worthless or not as functional as her peers. It’s hard to think back to times when I had to cancel plans last-minute for social events like my college spring fling or meeting up with a friend for a girls’ night due to my chronic tiredness. There’s a lot that I missed because I was, well, asleep.
While an estimated 135,000 to 200,000 people in the U.S. may have narcolepsy, the average time from symptom onset to a diagnosis is up to 15 years. That means many people—like me—have already faced a lot of challenges and struggles by the time they realize what was *actually* going on with them all along. I wish I could have discovered that I was living with narcolepsy sooner so I could have spent more of my years as a teenager and young adult living to my fullest. Learning how to be compassionate to myself and my experience has only expanded the compassion I can hold for other people. I can’t wait to start this new journey.
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