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7 Things People With Narcolepsy Want Others to Know

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It’s Sleep Week 2021 (March 14-20), so here are some things that people with narcolepsy want others to know about this often misunderstood condition:

1. We are not lazy.

Sleepiness is not laziness. Narcolepsy is a chronic, neurological disorder that impairs the brain’s ability to regulate the sleep-wake cycle. People with narcolepsy experience the level of sleepiness that people without narcolepsy would feel after staying awake for 48-72 hours.

2. It is not “just being tired.”

Narcolepsy takes a toll on the body that’s more than just excessive sleepiness. Unlike public perception, narcolepsy can also cause disrupted nighttime sleep due to the timing of sleep being “off.” Many people with narcolepsy also experience cataplexy, sleep paralysis, and hallucinations that can be frightening and confusing. In addition, these effects can induce feelings of anxiety, isolation and depression.

3. Please don’t shame us for needing a nap or wanting to go to bed early.

To us, naps are our fuel and our medicine. Sometimes that 20-minute recharge after lunch is the only thing that will keep us going for the rest of the day. So don’t make fun of us for needing that time to ourselves.

4. Don’t assume an understanding of how someone’s narcolepsy affects them.

Everyone’s journey is different, and everyone’s experiences impact them in a different way. While many people with narcolepsy are open to discussing questions to help educate their friends or family on their situation, many also do not appreciate comments that are made as a result of bravely volunteering their diagnosis. Comments like, “So you can just fall asleep?” or “You shouldn’t be driving if you have narcolepsy” are inappropriate, as they assume an understanding of how someone’s condition affects them. These words can be demeaning and make the person uncomfortable speaking out in the future.

5. Sleep disorders are invisible.

“Just because someone carries it well doesn’t mean it’s not heavy.” It has been almost two years since my diagnosis. Up until recently, I was fairly shy about my diagnosis and did not openly talk about it to anyone other than my family and friends. Recently after sharing my personal story, I had someone tell me “Wow, I never would have known you were going through all of that.” Sometimes, you have to look past what’s on someone’s Instagram feed and realize that many people are fighting invisible battles. It’s frustrating when people tell you that you look fine and there’s no way you could be dealing with something like this because you don’t display it.

6. We need our supporters to be open, caring and understanding.

The best thing a supporter can do is ask, “How are you really doing today?” Sometimes, we just need someone to listen. Not to give advice, not necessarily to comment, but just show that you care by asking and listening. That means more than you know. There’s no cure for narcolepsy, but social support makes symptoms more manageable in addition to medication. Sometimes, people have different ways of coping with their diagnosis. One of the most important things is to learn how you can best support someone with narcolepsy based on their individual needs.

7. There needs to be an emphasis on rest.

In a world that’s so stimulated and focused on the “hustle” mindset, the world needs to learn to be still. Resting today will help you live the life you want to live tomorrow. This Sleep Week (March 14-20), take the time to rest, rejuvenate, and refresh.

Originally published: March 15, 2021
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