i am so lucky to not have narcolepsy

Narcolepsy is not cute or funny

I don’t like to police how people use tags, but I guess I’ll just say it because this is a matter of like… literally making fun of a disorder and making it even harder for us to be taken seriously. I’ve touched on some of these things before, but this needs to be said. 

Please don’t tag pictures of your friend/SO/family/pet/small child taking a nap as #narcolepsy. I’m talking about a photo of someone sleeping or napping, someone who is not narcoleptic but simply sleepy. 

Just like OCD isn’t a synonym for finicky, picky, organized, or having particular pet peeves, narcolepsy isn’t a synonym for sleepy, tired, naptime, knocked out after a long day, or just getting in bed to rest. Cancer isn’t a synonym for sick, or bald. You’d never take a photo in a headscarf and tag it #lol #cancer, would you?

Not only does it make it harder for those of us that use the tag as a means of finding others with this debilitating, lifelong neurological condition and learning more about how to cope with it, but… tagging a non-narcoleptic person/pet/whoever that way is kinda harmful to spreading awareness because, like in every form of media, narcolepsy is a big joke. And it’s just… hurtful. To us. Like, personally hurtful. 

Think about how many narcoleptic characters you’ve seen. Not that many, but what do they generally have in common? They’re joke characters. They’re peppy and happy and healthy but how funny and quirky and cute, sometimes they fall asleep at the wheel or in the middle of a conversation. COMEDY GOLD.

And that hurts. It really does. To see the condition that causes me daily pain, and that makes it 10x harder for me to live a normal life and that has been a huge, huge struggle not only for my physical health but my mental and emotional well-being just being made fun of all the time and treated like some silly harmless cute ~*thing*~ that makes people sleepy—it just sucks.

Because it’s always like “Here’s a picture of my 3 year old napping #LOL #NARCOLEPSY” or “today was a long work day zzz #narcolepsy”. 

And what’s worse is when someone takes a photo/video of someone sleeping on the subway or restaurant or wherever and comments/tags things like “WOW NARCOLEPTIC MUCH GET YOUR SLEEPY ASS HOME LOL THIS STUPID SLEEPY ASS SLEEPIN’ AT A CAFE." 

That hurts and that’s so fucked up. 

  1. You don’t know that person and you took a photo of them sleeping in public without their permission
  2. You don’t know if they’re narcoleptic, you don’t know if they have some other disorder, you don’t know if they’re just really wiped out, or having a serious problem—and your first thought is to snap a pic/video and make fun of them?
  3. And then tag as #narcolepsy?
  4. And in the instances I’ve seen where someone was literally passed out on top of their food, you didn’t check to see if they were okay but instead chose to make fun of them?
  5. Like, really?
  6. Really?

I’ve said this before… When I’m out and about for long periods of time, or just having a bad day on the narcolepsy scale, it can be hard for me to sit up and talk and eat dinner and be sociable. At my birthday dinner recently, I had to rest my head a lot on the table. I felt embarrassed but I needed to rest. I was teased about it by family. Whatever, that’s another issue.

If someone had taken a photo of me resting and made fun of me for my condition, whether they know I have it or not (because based on the hundreds of tweets in the #narcolepsy tag basically anyone sleeping = NARCOLEPSY LOL) I would be so upset. I would literally cry. Even more so if like, Idunno, I was resting alone at my table and instead of checking on me, someone’s first instinct would be to take a picture and make fun of me. 

More commonly, narcoleptic people, particularly those with cataplexy, are considered disabled. They can’t drive and they can’t go anywhere alone. 

I am so lucky not to have cataplexy, but that doesn’t mean that my daily life isn’t hard. I’m literally in pain every single day. I don’t mean like ohh, little aches and pains, I’m talking about full body pain, hot flashes, fevers, aching bones, burning skin, wanting warmth for relief but having to nap with an icepack strapped to my head, migraines, not being able to run to the store for groceries without needing to rest for a few hours after, having to really coordinate my day because of how much I have to rest especially if I get wiped out, being literally unable to fall asleep unless medicated (and it doesn’t always work, like tonight), having to spend entire days with such strong headaches and foggy head that I can barely read, write and draw for fun anymore and am reduced to lying in bed shivering while sweating and praying that my medicine kicks in so I can get some relief. Oh, and family and friends telling me "OHHH I KNOW THAT FEELING EXACTLY, I JUST DRINK A 5 HOUR ENERGY” and not even trying to understand that narcolepsy doesn’t mean I’m just sleepy,  it means that I cannot fall asleep, and so my body/brain is now fucking up because I CAN’T REST PROPERLY, among all the other symptoms.

Everyone’s experience with narcolepsy and related disorders is different, but it’s never easy for anyone. But this is lifelong. This is incurable. This is forever for us. It’s every day. It’s being stuck between being unable to stay awake during the day, and being unable to sleep at night (in my experience). It’s not being happy peppy normal “insomniac” at 4am. It’s being so worn out you can’t even get out of bed to pee, but your brain is ???????? and doesn’t remember how to make you sleep.

Sounds fun, right? Neurologists actually report that the incidence of suicide in narcoleptic patients is extremely high. Gee, I wonder why. Also worth mentioning that narcolepsy generally comes hand in hand with depression and anxiety, both of which are also not taken seriously by even DOCTORS. I had an anxiety attack last week, and my narcolepsy is as bad as it was before I got treatment, simply from the anxiety. Now I’m miserable and struggling again.This entire week has been desperate attempts to rest and lots of painkillers and lots of frustration and sadness because of the realization that I have no control over this. I’m still young, and generally healthy if we ignore the two main things that frick me up… and it’s hard to accept having an incurable, painful, sometimes crippling disorder. 

If you wouldn’t make fun of or ridicule another disorder or condition, then why would you do it for narcolepsy? 

Narcolepsy isn’t cute or funny! You hurt feelings AND the cause when you tag your sleeping poodle as #narcolepsy #lmao #dumbsleepydog.

This has been a PSA by your friendly neighborhood narcoleptic, New. 

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Movie Challenge (Keanu Reeves edition) - Best Drama

  • My Own Private Idaho (1991)

“He always does this. He’s not dead, he’s just passed out. It’s a condition. Narcolepsy doctors are saying it’s brought on by certain chemical reactions in the brain. Comes about in situations of stress. Some hustler, huh?”