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My Unexpected Response to a Narcolepsy Diagnosis

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When I first heard the word as a possibility, I thought the doctor was being funny. Even though at the time, I was staring at a spot on his office floor, fantasizing about taking a nap. Narcolepsy, after all, was a joke illness — thrown around when teenage boys were suddenly asleep in the middle of band practice.

But one torturous multiple sleep latency test (MSLT) later and I understand, now, this unnamed monster I’ve been fighting my whole life. Many things are now put into perspective — the 4 pm coffee on which the act of writing this hinges. The struggle and ultimate failure to finish college because I was, frankly, too devastatingly tired. The Secret Nap Spots I found in every office building or school I’ve ever been in. All the jobs I left and lost because I couldn’t fulfill my duties while feeling like a living sandbag.

The relationships in which I was made to feel inferior. The friends I’ve lost because of all the cancelled plans. The doctors upon doctors I’ve seen since I was 18 years old, begging — I am so tired. Please help me. I am so tired.

The times that I’ve been hospitalized with the need to end my life — not to escape it, but because it’s the only way I could ever rest.

These things make sense now. These things are OK, now. I was just sick. I can get better now. I expected this feeling.

Yet underneath the relief, there it is —  the unexpected side effect of this diagnosis.

I am angry.

I am angry at every doctor who ever said “you’re probably just depressed.” I am angry at every manager and co-worker to whom I’ve ever explained: “I’m trying, I’m just so tired. I’m sick.”

I’m angry at every loved one who ever called me lazy. Called me depressed. Kept me awake to keep me from “moping.” Who refused to believe me, to take care of me. Who said this real illness that makes me feel like I’m drowning was all in my head.

I am angry that I’ve been told I should eat more or less of this or that, to exercise more or exercise less or I must have a drinking problem if I wake up in the night and see monsters. Who saw my illness as a failure of character and punished me for it.

I am angry at every person who has ever responded “I know how you feel, I didn’t get enough sleep last night, either,” after I’ve tried to explain my life.

I am angry at everyone who has ever graduated or succeeded or made a living without running out of steam at 11 am.

I am so angry. And this anger takes so much energy — a currency, I’ve found, I can’t afford to waste.

I do believe that for every con in life, there are ten more pros. I can be grateful for upcoming treatment, for the things I will soon accomplish, for the partner who pushed me to get a sleep study when he saw I stopped breathing at night. He tells me to rest when I need it.

So. My anger is mine to subdue, and it is my responsibility to sleepily put my life into the perspective of overall success.

But here is where I ask of you:

Listen to your tired friends. Listen to the friends who can’t quite keep the jobs or the plans or push forward. Whatever the cause of their difficulty, the judgment you’re tempted to extend can only become anger. Let them keep canceling plans and just give them love.

And for the love of Pete, just let them sleep.

Getty image by cosmaa

Originally published: March 6, 2020
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