Weird Things People Say About Narcolepsy
As a person with narcolepsy, I’ve gotten a lot of comments about my disease. Some comments about my narcolepsy have been inquisitive, but also supportive and understanding. The larger majority of comments tend to be a little off-the-wall. And that’s putting it nicely!
Weird comments I get about my narcolepsy
The average person tends to view health issues as something that can be fixed. Or they view sleep as a commodity rather than as the pillar of health that it is. Other people struggle to believe that an outwardly healthy person can experience uncontrollable fatigue or sleepiness.
Whatever the reason, I’ve received a fair number of weird comments about my narcolepsy. These include:
“Oh, I love naps. It must be nice to get to sleep all the time!”
No, it is definitely not nice. I sometimes think back to before my narcolepsy onset and remember what it was like to feel fully awake. It’s so different from my experience of every day with narcolepsy. I am always tired, and while naps are helpful, it is also frustrating to have to take them, because it isn’t optional for those of us with narcolepsy. It is a treatment plan, just as valid as popping a pill.
“You just sleep too much.”
Yup, that’s exactly the problem. My brain can’t regulate the sleep-wake cycle like a normal brain.
“If we could just get you to stay asleep at night, you’d get better sleep.”
If only we could make my sleep better, then my sleep could get better. Once again, my brain cannot regulate sleep or wake cycles. This includes sleep cycles.
“What did you even do today?”
Comments like these do not feel great. Before my narcolepsy onset, I was incredibly ambitious. That didn’t go away when my narcolepsy onset, but my symptoms do limit me. Phrases like these can be hurtful when I am already feeling insecure about what I am capable of completing in a day.
“I’ve been up longer than you. Why are you more tired than me?”
I rate this comment a 0 out of 10 on the narcolepsy empathy scale. One of my college friends would say this to me after my narcolepsy onset. I do not recommend spending a lot of time around people this invalidating!
“Take melatonin!” or “Try yoga!”
Offering simplistic, unsolicited sleep advice is not helpful. People with narcolepsy are experts on sleep. We’ve tried everything. And while I personally love yoga, it isn’t going to fix my literal brain damage.
“You’re too young to be this tired.”
Disability doesn’t have an age. It can onset at any point in your life. Statements like these are unhelpful because they perpetuate the idea that young people are exempt from experiencing invisible diseases or disabilities.
“Can’t you just stay awake?”
No, that’s actually the problem.
“You don’t know what tired is until you’ve had kids.”
I understand that parenthood is a beast of a thing. That’s actually part of the reason why I don’t want to have kids, at least at this time in my life. I doubt I could handle the constant messes, vigilance required, and irregular sleep and wake hours, on top of my own self-care and narcolepsy symptoms. However, when I hear this phrase the sassy narcolepsy advocate in me wants to respond, “Maybe YOU don’t know what tired is unless you’ve had a sleep disorder!”
What are some things people have said to you about your narcolepsy?
Have you heard any of these phrases about your own narcolepsy or your symptoms? Do you have any others to share? Share in the comments below!
How important is following a daily routine for managing your narcolepsy?
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