More Than Tired

When I was a junior in high school I had become convinced that an evil spirit cohabited my room with me. Strange way to open a blog post, I know, but bear with me here. 

Starting in middle school I would occasionally hear inexplicable things occurring around me in my bedroom at night. One night when I was in 7th grade, I heard a dog walking around my room, its nails clicking around. It was a week night and I was already tucked into bed, on the verge of falling asleep, a YouTube video playing beside me. At that point I didn’t own a dog anymore, but I was familiar with what its company sounded like. I knew there couldn’t truly be a dog walking around… but just to make sure, I checked anyway. No dog. After bolting to my parents room for safety, my confused parents looked around, figured I was being dramatic, and sent me back to bed. I remember hearing the dog again later that night as I was about to doze off. This time it was much closer. I heard nails clicking underneath my bed, and the jingling of its metal tag as it settled. 

I guess you could say that from middle school through my junior year of high school I was one to keep busy, and without a plausible explanation as to what had happened, I chalked up moments like those to paranormal activity. I played for soccer teams, performed with theater troops, and joined as many clubs as I could justify time for. All my classes started with “Honors”, “AICE”, “AP”, or “IB”, and sleep was scattered throughout my day. I was known for being able to sleep anywhere, a ‘talent’ that impressed my friends, and at times embarrassed me (and offended my teachers). I was always tired, but what kid wasn’t? Many mornings I’d walk into class, plop beside a friend and complain about being tired. I’d usually get a sleepy “Me too,” in response. 

It wasn’t until I went to a pulmonologist appointment in my junior year of high school that my story changed. I have asthma, and the clinic I visited specializes in pulmonary and sleep care. Unbeknownst to me, I was handed a narcolepsy screening test on my way in. At the end of my appointment a sleep specialist slipped into my room to discuss my screening results (apparently saying yes to more than 3 of the questions was a red flag). She asked me some questions about what my life looked like, and assessed some of the major symptoms of narcolepsy that I seemed to be presenting. She asked me if I was tired, and I told her no, because I had actually taken a nap in the car on my way to the appointment (narcolepsy is highly associated with Excessive Daytime Sleepiness , aka EDS). She asked me about my sleep habits, which were disordered. She asked me about sleep paralysis, which I hadn’t experienced yet, but I sometimes heard creepy things at night (I would come to learn that this symptom is called a hypnagogic hallucination , another symptom of narcolepsy). The doctor thought I would benefit from undergoing a sleep study, and I underwent one not long after. 

Later that year, I was brought into the sleep clinic to discuss the results from my sleep study. I wasn’t too surprised upon being informed that I have narcolepsy type II, as my lived experiences seemed to line up with many of the symptoms. But the conversation we had was still surprisingly difficult. My doctor told me that there is no cure for narcolepsy, as well as something along the lines of, “your chronic disease is covered under the Americans with Disabilities Act.” That sentence was a lot to process. Yes, my strange experiences felt reaffirmed and I didn’t feel crazy anymore, but now I was being informed that my health condition is not only chronic, but also cureless, and a disability. For several years following my diagnosis I struggled a lot with those labels, and my confidence took a hit. I wondered how this would translate into my adult life in the future, as I didn’t know anybody else with narcolepsy. How was I going to handle college? Would I be able to reliably wake up to my alarms for a 9-5 job once I started living on my own? Could I be able to one day serve as a functional mother, balancing my sleep and a needy baby? The implications were scary and concerning; I was afraid of the consequences of failure.

Accepting my limitations hasn’t been easy, but getting medicated, working brief naps into my day, receiving accommodations, and improving my mindset has been a total game changer.  Connecting with the narcolepsy community has also helped me feel less alone (shout out to Project Sleep! ), more informed, understood, and less intimidated by my disease. Thanks to the many people in the narcolepsy community sharing their stories, my fears have been eased. In 2020 I received the Jack and Julie narcolepsy scholarship , and got tips on how to succeed in college from past recipients. I saw people with narcolepsy thriving as a lawyer , as a famous late night talk host , and one is even an NFL player! I saw moms with narcolepsy sharing their pregnancy stories and giving advice to future mothers. Narcolepsy became less of a summary of who I was and more so an aspect of my life. I have brown eyes. I’m 5’5. I have narcolepsy. 

September 22 is World Narcolepsy Day . I decided to share my story in order to raise awareness about narcolepsy symptoms and to emphasize the importance of sleep. My story changed relatively close to my onset of symptoms– 3 years– but many people living with narcolepsy won’t get diagnosed until about an average of 15 years after their onset of symptoms . This rare disease occurs in 1 in 2,000 people , and sometimes the symptoms are misinterpreted, resulting in a misdiagnosis. If you see yourself in my story, please get in touch with your healthcare provider. 

Sleep is often unprioritized by many college students. Lack of sleep and poor sleep quality has been associated with reduced memory , as well as impaired emotional resiliency . According to the Sleep Foundation, adults should aim for 7 to 9 hours of sleep each night . You can’t literally “catch up” on sleep over the weekends, so plan your week carefully to ensure that you can get assignments and studying done within a realistic timeframe, within reasonable hours. I have learned that, at the end of the day (wink), allowing oneself adequate time to rest is both an act of self care and of self love.