LIVING WITH IDIOPATHIC HYPERSOMNIA
I’ve often joked that I’m tired of being tired. But I am. I’m exhausted.
I’ve always been sleepy. I’ve slept through classes, through weddings, when sitting and standing. My mom would come into my room to find me passed out on the floor, because I was too tired to walk one step further to my bed. I sleep talk, I sleep walk, but most of all - I sleep and sleep and sleep. We didn’t know how uncontrollable my daytime sleepiness was until I got my driver’s license. I remember driving down the freeway slapping myself in the face as I sobbed because I could feel myself slipping into sleep even though I’d had a full 10 hours the night before. No amount of sleep is enough
I've dealt a lot with people saying, “Oh, I wish I could sleep more! You’re so lucky!” Lucky? Before I was properly medicated, I experienced hallucinations as a result of entering REM while still technically being awake. I daily experience immense brain fog, which hinders my ability to think clearly. I have been publicly chastised for yawning when others speak. This even happened in college by professors, though I wasn’t about to explain to the class that I have a rare sleep disorder. I stopped driving for years for fear of harming myself and others. In the past decade, I’ve moved from doctor to doctor and have had to learn to advocate for myself - which I could never have done without my mom by my side, who always believed and validated me as I battle exhaustion.
I get it; we’ve all felt tired. But I have never felt awake. Before my diagnosis, I was drowning. I was 50 feet underwater and no matter how hard I kicked I couldn’t burst through the waves to the surface. Most days now, I’m bobbing in the surf. Waves knock me down constantly. Salt water overwhelms me. But at least I can breathe. Every now and then, it gets bad, and I slip back beneath the waves of tiredness. This is my reality. This is every day.
I am tired of being tired.
It’s hard to find any information about a debilitating disease. Idiopathic Hypersomnia is one of many invisible illnesses.
I’ve never hidden my sleep disorder. But I’ve also never spoken out about it. If anything, please come away from this with empathy for one another. We are all fighting our own battles. And me? I sleep about 12 - 15 hours a day. And even then, I’m still tired. I would sleep 20+ hours a day without any medical intervention. That’s just my reality. I’m lucky to have family and friends who support me, believe me, and love me.
So yeah, I’m really, really tired. That’s not going to change. But I am more than my sleepiness. It does not define me.