LIVING WITH IDIOPATHIC HYPERSOMNIA
While job-shadowing in Slovenia this past summer, I acquired the nickname “Panča.” This Slovenian word is an affectionate term for a sleepy baby or small child, and I earned this moniker by repeatedly falling asleep during meetings, car rides, and lunch breaks. After I finished job-shadowing, I participated in a two-week entrepreneurship course while still in Slovenia. My nickname followed me there, as the other students would giggle while they saw me struggle to stay awake in nearly every lecture. It was never used with malice, but nevertheless, it was a constant reminder of my disability. Many times, people identify me by my sleep disorder before anything else. In Slovenia, before I was Claire, I was “Panča.” Back at my high school or university in the United States, I am simply “that girl who is always asleep.”
Ever since I was very young, I have wanted to be a doctor. Reaching this goal requires outstanding grades, impressive MCAT scores, and the ability to manage an incredibly demanding schedule. Therefore, throughout elementary, middle, and the beginning of high school, I was always extremely engaged in my classes, worked hard, and emerged as a frontrunner for valedictorian. However, during my second year of high school, I began dozing off in my classes. It began as an occasional occurrence but eventually escalated into a daily event, even after full nights of sleep. I would only remain asleep for a few minutes, but the actual sleeping wasn’t nearly as aggravating as the ten or fifteen minutes I would spend fighting to stay awake before finally succumbing to sleep. I couldn’t focus on anything other than desperately trying to stay awake. Consequently, I missed crucial information and was unable to fully participate in class. My notebooks would show when I started falling asleep during the lecture because my typically pristine handwriting crumbled into unintelligible scribbles as my motor function declined before dozing off.
I had to work extra hard and meet with my teachers frequently after class to get the notes I missed. Because of this, I was able to keep my grades up, but people would say, “How are you smart? You’re always asleep in class!” After moving to North Carolina and starting college, the questioning persisted. People continue to assume I’m lazy or non-academically inclined because of my sleeping. They laugh gently, yet vaguely patronizingly, and say “Aw, honey, you were falling asleep in class… again.” Additionally, they figure that my fatigue is no different than the groggy tiredness all college students experience after a late night of studying. For many years, I thought they were right. I thought I just didn’t know how to battle my fatigue and needed to drink more coffee. I grew angry and frustrated with myself for sleeping during inappropriate times. But after falling asleep in the middle of conversations, nearly dozing off while driving, and accidentally napping three to four times a day for nearly three years, I finally wondered if something more was going on.
When I was nineteen, I underwent an overnight sleep study and a MSLT (Multiple Sleep Latency Test) and was diagnosed with idiopathic hypersomnia. This condition is diagnosed by excluding other sources of sleepiness such as sleep apnea or narcolepsy. I was thrilled to finally have an answer, but this new label didn’t immediately solve any of my problems. Knowing that there was indeed something abnormal about me brought my dream of becoming a physician into question. Medical school and residencies notoriously involve long shifts at the hospital with no room for sleep. I was determined to fight through it, just like I fought through high school and the beginning of college, but how much is too much? My university days were becoming more demanding and jam-packed, and sleep was becoming more of a luxury. While most university students can tough it out, anyone with IH knows that downing cups of coffee or pinching yourself won’t get you through the day. For me, only leaving work early to lie down in a patch of grass before dashing off to my next commitment would. If this is what I need to do to survive my undergraduate years, how am I going to make it through medical school?
I’ve learned that living with IH is just as much of a challenge for achieving my dreams as my courses themselves. I realize now that every new phase of my life requires an additional adjustment, but after this summer, I’ll finally be equipped with some extra ammunition. I recently met with my doctor to explore treatment options and have discovered a support network of hypersomnia patients, physicians, and researchers. Reaching out to a sleep specialist and the IH community has made living with the condition easier and has helped me feel less isolated. Alongside improving my own wellness, I’ve dedicated myself to improving the lives of others with IH through advocacy and research. I may even become a sleep specialist within the psychiatric field! Each day is a challenge, but every nap I take motivates me to do more for the community. Soon, I hope that IH sufferers can make their first impressions as themselves, not as sleepers, dozers, nappers, or pančas.