10 Things People With Narcolepsy Love to Hear! Just Kidding

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1. “OMG I totally have that.”

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No you don’t. You’re just tired because that’s what happens when you stay up until 2 a.m. doing whatever it is you do.

If you actually have symptoms of narcolepsy, this of course doesn’t apply to you. Ironically, the people who actually have symptoms of narcolepsy are never the ones who say “OMG I totally have that.” (If somebody can explain to me why people say this, I’d love to know.)

2. “You’re so lucky! I wish I could sleep that much!”

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Oh my gosh.

No.

People with narcolepsy don’t actually sleep longer than other people.

Also, if you have narcolepsy, your sleep tends to not be helpful. Imagine waking up every morning feeling worse than you did when you went to bed. Like if you stayed awake for three days straight and then got hit by a bus after being bitten by a zombie and contracting bubonic plague.

You still want that?

Also, the word “lucky” implies that whatever you’re talking about is “desirable.” You wouldn’t tell a cancer patient that he or she is “lucky” because they have cancer, would you. (There’s a period there because that was a statement, not a question.)

And about taking naps:

Remember back in kindergarten when they forced us to take naps every day and we didn’t want to, so we spent the whole time coloring pictures or whispering to the other kids because we thought the teachers couldn’t hear us (because not all 5-year-olds have realized that “whispering” isn’t actually “quieter” if it’s the same volume as your “outside voice”). That’s what it feels like, except you actually sleep (because you can’t not sleep) and it’s for the rest of your life and you’re not five years old and you may or may not get fired because your boss doesn’t think adults should take naps. You also don’t even get crayons.

3. “Narcolepsy? Oh that’s no big deal. You just need a psychiatrist.”

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There are no words.

Other than NO.

4. “Oh you just need to get more exercise. That will fix everything.”

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Oh thank you, Fairy Godmother! I had no idea that all I needed for all my problems to disappear was for you to wave your wand and say “Bibbity Bobbity Boo, an elliptical for you!” Maybe if I start exercising, not only my narcolepsy will be fixed, but my bank account will suddenly contain millions and I will never have cavities or a sprained ankle again and tomorrow a gorgeous prince will whisk me away to Fairy Land and we’ll live happily ever after! Oh you are just too helpful.

5. “Oh my gosh you can’t even begin to imagine how tired I am right now!”

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You don’t have narcolepsy? Please keep talking about how you’re more tired than I am.

Before I go on, I should say this: it’s okay if you’re tired, and you can tell me that you’re tired. That’s not the issue. It’s not annoying when people are genuinely sleep deprived (due to something other than bad life decisions). In fact, if you’re tired, I’ll feel bad for you, because I can relate. What IS annoying is when someone goes on and on about being tired and how I couldn’t possibly imagine how they feel, all because they’re looking for attention or whatever. If you’re sleep deprived, I’m sorry. But I’m not impressed, and I don’t think it’s cool.

(Also nobody whine at me because the Willy Wonka meme is “like way overused” or “so cliché,” because so is saying, “Oh my gosh you can’t even begin to imagine how tired I am right now!”)

Something I’m curious about — why are people proud of the fact that they are sleep deprived? It’s now some kind of (ridiculous) contest to see who got less sleep last night, and everyone is determined that they are more tired than everyone else. That’s insane. On a scale of one to crazy cat lady, it’s like Loki in The Avengers (except without the maniacal take-over-the-world-with-aliens plot).

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(I’m pretty sure that’s a cat. Sort of.)

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6. “That medication is actually super duper hard for us to get. Like we have to order it and everything! Maybe you should just ask your doctor to prescribe you something else. That would be easier.”

(I kid you not, I have heard this twice already. From pharmacists. That’s not even mentioning how much they complain at me.)

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Oh! I’m sorry, are my medical problems inconvenient for you? Darn it, I should be more accommodating and easy to deal with. I definitely shouldn’t have gone out and gotten myself an obscure disease and then specifically asked my doctor for the weirdest and most difficult to get medication that has ever existed in the entire history of the human race. Shame on me. I’ll try to remember for next time. (Because there will be a next time… because I call you every month asking for the same medication, and somehow it’s always such a shock to you that I still have the same chronic lifelong autoimmune disease that I had last month…)

I have an idea! How about you tell me what is convenient for you to have in stock each month and I’ll just have that! Brilliant.

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7. “Why can’t you just stay awake? It’s not THAT hard.”

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“Why can’t you just do this one thing? It’s not like I’m asking that much of you.”

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“You know, it would be nice if you would actually TRY.”

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Etc. etc. etc.

How about NOT giving us a hard time? It’s not like we went out and intentionally gave ourselves a debilitating chronic disease for the express purpose of making YOUR life difficult. (I can totally understand why you would be confused and think that though. Totally.)

Look: we get it. Narcolepsy is inconvenient. We need people to make accommodations for us and be understanding. Just remember this: when you get frustrated with me because of my narcolepsy, remind yourself of how frustrating it is for me. If it makes things inconvenient or difficult for you, just imagine how inconvenient and difficult it must be for me. All we need is a little understanding, and we’ll try to understand you too.

Everyone needs things from other people. That’s how society works — I make compromises for you, and you make compromises for me. We need things from other people, but we also have a lot to give.

8. “You can’t be THAT sick. You look fine!”

That statement is based off of the entirely inaccurate assumption that someone has to look super terrible or be in a wheelchair or live at the hospital in order for them to be sick. That is not the case.

Also, just because I’m so crazy drop-dead gorgeous doesn’t mean I don’t have problems too.

Seriously, though — I don’t roll out of bed looking like this:

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(I actually never look like that, but that’s beside the point.)

I roll out of bed looking more like this:

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(Just not as cheerful.)

It’s nice when people think I look good. But don’t think that because I have mascara on, I’m somehow magically cured, or that you don’t have to take my disease seriously. I just try hard to look nice because I don’t want to go in public looking like that troll doll.

9. “Narcolepsy?” *Proceeds to provide lots of totally not correct information and say lots of totally not correct things*

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1. We have enough problems WITHOUT people spreading misinformation.

2. The misinformation is never something good… It always always always makes things harder for us.

3. Can we all just agree to stop talking about things we know nothing about? (I feel like that should be obvious but apparently it’s not.)

4. Before saying things, you should probably check your facts. Someone once said, “Better to remain silent and be thought a fool than to speak and remove all doubt.” I heard that Abraham Lincoln said that. But I’m not positive, so I’m not going to definitively say that it was absolutely him. (See what I did there?) Whoever did say it was totally spot on. It’s annoying when people say stuff that isn’t true. It’s annoying when people believe people who say stuff that isn’t true. And it’s a problem for other people when people believe people who say stuff that isn’t true! (Are you still with me?) And when you get called out for saying incorrect things you look stupid. And nobody wants to look stupid.

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5. I have narcolepsy, and I still check my facts. When I post something to our company’s Facebook, Twitter, and Instagram pages, I check my facts. When I blog on The Huffington Post, I check my facts. I have the disease, and I still don’t assume that I know everything about it. Nobody else should either. (Especially if you don’t even have the disease yourself.)

10. “Why haven’t they fixed you yet? Tell your doctor to give you something that helps!”

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Oh okay. That’s a super suggestion because my doctor is actually Dr. Who! I’ll just make an appointment with him and demand that he team up with Harry Potter to advance medical research by several decades or so.

If you’ve ever said any of these things, please don’t beat yourself up about it. I don’t expect everyone to be perfect all the time. I certainly wouldn’t want other people to expect that from me. I know I don’t always say the right things to everyone all the time, and I don’t expect you to either. This is not to point out how you’re doing everything wrong or anything like that. It’s for future reference.

And to people with narcolepsy: hearing these things can be frustrating. Just try to remember that not everyone can understand, and that’s not their fault. Explain to them why you feel the way you do about certain comments or reactions, and give them a little understanding, too. If we want them to cut us slack, we have to be willing to cut them slack too. I know I’m not always the best at that, and that’s something I’m working on. I just remind myself that people will be much more eager to help me if I’m nice to them and patient with them. That’s just human nature — nobody wants to be around a nasty or impatient or overly sensitive person who takes everything the wrong way. But everybody loves a person who is friendly and understanding and forgiving and lighthearted. Very VERY few people are actually interested in personally attacking us. In fact, it’s typically the complete opposite — they want to understand, they just don’t yet. Try to see everything in that light. I know I’m much happier when I don’t take things so personally.

Source: huffingtonpost

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