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Dear Idiopathic Hypersomnia,

A teddybear lays face-down in a bed reflecting the tone of an author's letter written to idopathic hypersomnia

Because of you, I have always, and will always, be Forever Tired. I have an insatiable need for sleep. People say “Oh, I’m tired, too.” but they don’t know this kind of tired.

Some people go to brunch, read books, hang with friends, play sports, have hobbies. I sleep. I’ve fallen asleep while driving, while at the circus, in countless waiting rooms, on concrete floors, in the shower. It’s embarrassing to wake up late for a 2pm meeting. It’s shameful to fall asleep in the middle of a conference room full of business executives.

A boss of mine used to say “You’ll sleep when you’re dead.” What a privilege for sleep to be optional. To be able to CHOOSE to be awake. And not just awake, but PRODUCTIVE. To do more than walk around in a sleepy haze, daydreaming about crawling into bed.

The problem is, sleep feels GREAT. It’s my drug. How do I not give into the siren call of sleepiness? Sleeping is my superpower. And my kryptonite.

How much of my life have I spent hitting snooze? I’ve missed so much. I’ve unwillingly devoted entire days to sleep because of you. The sun makes me tired. Rain makes me tired. Eating too much. Not eating enough. Car rides. Bike rides. Swimming. Everything makes me tired. Idiopathic Hypersomnia, YOU make me tired. And no one knows why you exist, how you came to be, how to control you or how to cure you. I don’t even know if I’m calling you by the right name. One doctor says Hypersomnia, the other says Narcolepsy. There’s also Non-24 Hour Sleep-Wake Syndrome and Delayed Sleep Phase Syndrome to choose from.

I’m so tired of talking about being tired. I’m so tired of being tired.

I’d even say I have a MILD case of you. I have a job and pay my mortgage. I know there are many others who aren’t so lucky. Yet there are things you’ve certainly stolen from me. The idea of having kids has always felt impossible. Would a baby be safe with me? Would I wake up in the middle of the night to feed them? Would I have enough energy to get them up for school, pack lunches, help with homework and attend soccer games?

Just when I thought I had you pegged, that I could predict what you’d do and how to work with you, being the inevitable life partners we are, you changed all the rules. Or something else did. Many hypotheses have been made. First it was Multiple Sclerosis, then adrenal fatigue, anxiety, depression, anemia, perimenopause or Celiac disease. No, it must be latent trauma, or a vitamin deficiency. Or maybe it’s just YOU, Hypersomnia. Presenting differently today than you did yesterday.

I aspire to be SO MUCH MORE than what I’m capable of being because of you. I’ve had to live small while dreaming big. I mourn all the time I’ve lost to sleep and can only hope tomorrow will be different somehow.

Female, 43
Idiopathic Hypersomnia, Generalized Anxiety Disorder

Dear Diagnosis Affirmation Key

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1 thought on “Dear Idiopathic Hypersomnia,”

  1. You have described, verbalized, made known about this so clearly, as maybe no one has before. I would love to see this published. Thank you for your vulnerability in sharing this. Despite my familiarity with the issues at hand, I value knowing more about your experience. I admire your ability to communicate with compassion despite the difficult situation you are in.♥️

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