My Hidden Life With Idiopathic Hypersomnia
My chronic illness really began to take ahold of my life as a senior in high school. I can remember my dad asking me if I was depressed. “I don’t really know,” I thought. I slept through my classes, dreaded practice after school, plopped on the couch right when I got home and slept until the next morning. Don’t even bother waking me up for dinner, Mom.
But then I didn’t wake up the next morning either. When I did, I found it in me to trudge down the stairs to go lay on the couch and sleep through the rest of the day. My mom stopped making me go to school when she realized I was actually that tired.
I went to college. I napped – I mean, we all love napping! I remember reading others’ posts on Twitter and Instagram about sleep and thinking, “Yes, we’re all in this together!!!” (sorry if you just sang that like High School Musical) but I realized that’s not the case. No average person sleeps more than 10 hours at night, wakes up just in time to go to one class, then comes home and sleeps until dinner. No average person in their early 20s feels their energy deplete as they are getting dressed in the morning.
I loved college – it was the best time of my life. I met the most amazing people, made the dumbest choices, and got to nap whenever I wanted as long as I didn’t have an in-class assignment that day. But having made so many friends and having been so social makes me feel weird now that I’m not in college.
I used to be the life of the party. I’m now actually referred to as “shy.” I used to be confident; I now stumble over words and wonder what the person on the other end is thinking of me. See, chronic illness hurts me physically, but it also takes a toll on my mind.
I am funny and witty, but I’ve lost my humor to my old friend fatigue. I have weeks I dream of seeing my family who live out of state, but when they are near I get mad because they are talking too loud in a room where I want to sleep. This past weekend, I got dressed to go out and enjoy my day with them and broke down in tears telling them I couldn’t do anything more after we had a 30-minute lunch.
“OK, we don’t have to do anything else, we can go home if you want to.”
It’s not that I can’t handle my illness. It’s not that I am unhappy with my life, either. I’m not crying out for help.
It’s that I feel guilty. It’s that I want to travel, I want to play in the sunshine, to dance, to go on just one girls’ day trip with my mom where I don’t exhaust after one stop. It’s that I wake up every day hopeful for great things. But my guilt for my inabilities consumes me. What would I even be like without this condition?
I am a teacher for children with autism. I love my job, but my illness doesn’t care. There are days I can hang the moon and days where I might as well clock out and go home because I feel that my presence is worthless. I’m sure no one can see how much my body aches or how hard I am fighting my fatigue. Some days I come home and I lay in bed and I cry. And sometimes I fantasize about the ability to go to sleep and to stay that way for quite some time, forgetting any responsibility I have.
Perhaps there are illnesses far more severe than mine. I am blessed with my life. But that does not make my life with chronic illness any less of a challenge. There is so much I don’t let the world see.
If only they knew.
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Thinkstock photo via kameshkova.