Sleep is my drug; I can’t live without it, I can’t get enough of it, and I crave it every second of every day. To the average person, I might just sound like your typical sleep-deprived college student surviving off of very little shut-eye and numerous shots of espresso. How can sleeping too much be a medical issue? Many times I have been reminded how “blessed” I am that I have no problems falling asleep or staying asleep. Sure, I’m not saying I don’t enjoy dozing off moments after my head hits the pillow, but sometimes I want to be able to fully experience the world beyond the dreams that conspire in my mind. How can I live when all my brain and my body want is to sleep?
It’s called Idiopathic Hypersomnia. I’m guessing you haven’t heard of it, and I don’t blame you for not knowing about such a rare disorder. Everyone seems to know what insomnia is, so when asked what my disorder means, I usually refer to it as the opposite of insomnia; instead of sleeping too little, I sleep too much. Idiopathic Hypersomnia (IH) is commonly defined as excessive daytime sleepiness. My brain is constantly telling me to sleep, but even after hours and hours of resting, I often feel more tired than I did before. On rare occasions, I will feel completely awake, and it is the most amazing feeling ever, something that the average person might take for granted.
Even though my symptoms were not fully apparent until my teenage years, I have always been a tired person. When I was a baby, my mom couldn’t even breastfeed me because I would fall asleep before she got the chance. Once I got older, my tiredness was easily mistaken for laziness, which is ironic because people with IH are the least lazy people that I know. We want so desperately to be able to do what everyone else does, but often times, we just physically and mentally are not capable of keeping up with the busy day-to-day life. I did not find out that I had IH until I had a sleep study done the middle of my senior year of high school. Before that time, my family, friends, and teachers didn’t understand why I would cancel plans, turn in homework late, or sleep all afternoon and still all through the night. Receiving a diagnosis was one of the best moments of my life. Some people might not understand why that is, but for me it was an answer to my problems, and in some ways, it was a solution as well.
Now that I have been diagnosed, I have been on a stimulant called Modafinil. Although it often takes away my appetite, for the most part, it does a decent job of keeping me awake. However, mornings are still the absolute worst. I love mornings, but I often miss them because I can’t will myself out of my bed. Because of this, I requested that my school let me sign up for classes early in order to ensure that I didn’t have any early morning classes. I don’t know if my school didn’t understand the depths of my disorder because they had never heard of it, but I was not welcomed with understanding. In fact, I was told that there was only so much that could be done for me without risking me jeopardizing the system. Well, if you have ever been in college, I’m sure you know that the system is already pretty messed up, but this was just another situation where I felt misunderstood and hopeless.
Sleepy is not a synonym for lazy. I often imagine my life without idiopathic hypersomnia. I think of all the things that I could accomplish, all the challenges that I wouldn’t have to face, and all the mornings that I would be awake for. After I am done feeling sorry for myself, I move on to think about all the things I have accomplished, all the lessons I have learned, and all the relationships I have built not only despite of IH, but also because of IH. All I ask for is understanding. I’m not making excuses, and I’m not being lazy, but I am still trying to just figure this all out. It might take a few (or a lot) of naps along the way, but someday, I hope to get my mornings back.
If you would like to know more about IH, visit hypersomniafoundation.org
