My Experience with Idiopathic Hypersomnia

I’ve fallen asleep everywhere. Even screaming kids and cold concrete floors have proven no challenge to my propensity for dozing off. 

The summer after sophomore year, I was diagnosed with idiopathic hypersomnia, a condition characterized by intense daytime sleepiness. Idiopathic hypersomniacs often find little relief from naps, and spend parts of their days riddled with brain fog. Tiredness can occur any time, and in severe cases, individuals with this condition will go on autopilot, completing tasks as they fall into sleep.

At the time of my diagnosis, I had just finished my final exams, frustrated with my extreme lack of motivation. In class, my eyelids would droop, my head would loll to the side. I would pinch the inside of my arms, fidget, doodle, or do anything else to try to stay awake.

As a kid and then teenager, I was eager to learn, annoyingly over-participating in high school history classes and voicing my opinions loud and clear. In college, my participation grades plummeted, because I could only use my energy to look alive, so the professor would not catch me dozing off. It was at night when everyone else was drifting off to sleep that I would feel sparks of creative energy returning. Sometimes I would fall asleep with birds chirping outside my window, announcing the new day. I would get three hours of sleep, only to wake up and run late to 9:00 a.m. meetings.

In a society that values productivity above all else, I felt lazy, like I was letting my education go to waste. Everyone around me seemed so enthusiastic, ready to contribute to class discussions, jumpstart creative projects, and experience vibrant social lives.

Before my diagnosis, I refused to let the sleepiness get the better of me. I continued to take hard classes and participate in extracurriculars. I knew what I was capable of, so I made myself do it, even if it meant I was sleepwalking through the parts of life that were supposed to be meaningful. My work held no passion and my relationships suffered. The parts of me that loved to be artistic, that loved education, were dampened by playing a never-ending catch-up game between my body and brain.

Even after being prescribed stimulants to stay awake, I continue to struggle with feelings of inadequacy when my tiredness trumps my productivity, when I know the material but my brain isn’t awake enough to participate in class. However, I still do my best work in the middle of the night when I am an entirely different person than my unmotivated morning self. On the summer days when I can work on my own schedule, I rediscover sparks of creativity and love for learning after everyone else has gone to bed. 

I’m not lazy, but I do need a schedule different from the norm. Though I need to adapt, it is a privilege to live in a different time frame. I will never be able to both live the most ideal lifestyle for my idiopathic hypersomnia and be an active participant in the world in the ways I want to. Changes I make to my schedule may also not be possible for other people with similar conditions, especially those working full-time jobs. 

My experience with idiopathic hypersomnia has made me realize the importance of taking time for yourself in a world overfocused on productivity. It’s no use beating yourself up for something that can’t be controlled, and pushing yourself to exhaustion when it is not necessary. When possible, it is crucial to take the steps to accommodate your needs, especially when chasing normalcy means you are never fully present. There is no shame in taking care of yourself, in taking a break to refuel and actually enjoy life. Embracing this lesson has helped me rediscover my love of learning. If I want to be my best self and make the most of my education, I may have to live differently, and that’s okay.

Lily Ahluwalia is a member of the class of 2027 and can be reached at lahluwalia@wesleyan.edu.