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Health Leader Roundtable: Narcolepsy and Sleep Health Awareness

Narcolepsy is a sleep disorder impacting between 135,000 and 200,000 people in the United States alone. With symptoms like excessive daytime sleepiness and insomnia, it's no wonder many people with narcolepsy report problems with sleep.1

To help us celebrate and raise awareness for the National Sleep Foundation's Sleep Awareness Week®, we asked our Community Health Leaders a few questions about managing narcolepsy and sleep health. Here's what they shared.

Bedtime routines and sleep hygiene

Q: Do you have a sleep routine or bedtime routine? What are the essential steps you take to try to get the best rest?

Alyssa Walker: My bedtime is at 10:30 PM, while my bedtime routine starts at 9 PM. The first thing I do is limit my screen time. I turn off my computer and the TV, then I limit my phone usage. I often take a shower and then play soothing music. Lastly, I write out my to-do list for the next day. I do this because it helps me relax knowing I have somewhat of a plan for the next day. An essential thing that has helped my sleeping is leaving my phone in another room. I used to check my phone throughout the night, and that's not a good sleeping habit. Whenever I don't have it next to me, I am not tempted to grab it and scroll through it.

Tatiana Corbitt: My bedtime routine (when I am being "good") includes bathtime and a podcast and a cup of tea. I also like to keep my phone away from my bed so I don’t mindlessly scroll in the middle of the night on accident while half asleep. I also have to take my nighttime meds, wear a nightguard to reduce teeth-grinding (it started to get bad when I got narcolepsy), and sleep with a stuffed animal to keep away the nighttime hallucinations (or at least make the experience less scary).

Kerly Joy Bwoga: I start by taking my Xyrem in the kitchen. I take all my night medication, brush my teeth, put on face cream, do my nighttime eye drops, and ready my CPAP [continuous positive airway pressure] machine. Then I ask Alexa to play airplane sounds. Recently, my insomnia is out of control, so I am taking melatonin at night and it's been helping a bit.

Myths about narcolepsy and sleep health

Q: What do you feel is the biggest myth or misconception about narcolepsy and sleep?

Iris Vasconcelos: I feel that the biggest, and most harmful, misconception about narcolepsy is that it's "not a serious illness." Unfortunately, I do believe that this is quite a widespread belief. People’s approach towards (and handling of) those of us with narcolepsy communicates a very dismissive attitude. What exasperates me the most is that everywhere you look, people are always talking about the importance of sleep and its impact on your quality of life, yet when it comes to narcolepsy, this same understanding doesn’t seem to apply.

Lauryn Craine: There are a lot of myths and misconceptions surrounding sleep and narcolepsy, and it's annoying. I think the biggest misconception is that people with narcolepsy can push through being sleepy. Sometimes I can catch myself, but it's rare. Even then, I’m more than likely bobbing in and out of consciousness trying to wake myself up, which is not fun! I wish there were fewer stereotypes surrounding falling asleep and pushing through. If my body is sleepy and I'm ignoring it, that’s going to make the situation worse, not better. If I had spaces to rest or people who understood I couldn't push through the sleepiness and let me nap for a bit, I might have had fewer sleep outbursts during lectures. It's easier and safer to rest.

Tara O'Connor: I feel like the biggest misconception about narcolepsy and sleep is that it is not like what movies portray, and we cannot just fall asleep anytime and anywhere. I feel like whenever I tell someone new that I have narcolepsy, they almost always say, "So do you just fall asleep randomly all the time?" This is usually frustrating at first because I hear it way too often, but I have started to look at it as an opportunity to raise awareness and educate others who do not know much – if anything – about narcolepsy and sleep.

Tatiana Corbitt: I think the biggest myth surrounding narcolepsy is that it’s just about being a little extra tired. In reality, sleep is one of our body’s most important functions, and with narcolepsy, its ability to sleep and wake is impaired. We are not lazy like people tend to think. In fact, we are much stronger than the average person, since we are constantly struggling to participate in consciousness.

Alyssa Walker: One of the biggest misconceptions about narcolepsy is that because we sleep so much, we are well-rested.

What I wish others knew about sleep disorders and sleep health

Q: Is there anything you wish more people knew about sleep and sleep health?

Lauryn Craine: I wish more people knew that narcolepsy isn't the only sleep condition that has excessive sleepiness! There are so many conditions that are similar to narcolepsy – idiopathic hypersomnia (IH) exists, too! Also, I just wish more people knew the details in general; our conditions have more to them than being sleepy. They come with a plethora of symptoms! I realized after being diagnosed that people (myself included) don't really know about narcolepsy and assume a lot about the condition. If more people took the time to research when someone tells them they have narcolepsy, then I feel there would be fewer people in the world who think it's "just dozing a lot."

Kerly Joy Bwoga: After 21 years of dealing with narcolepsy, I want people to know that sleep is important and it affects your physical, emotional, spiritual, and mental well-being. If you don't get enough of it, your whole life is disrupted. I want people not to take sleep for granted and to realise it is a privilege to be able to sleep at night and have healthy sleep. People who have sleep disorders are not lazy; I would love for people to know how much people with sleep disorders crave restorative sleep and the health benefits it has. I would also like people to know that lack of sleep affects your mood. It is hard to be cheerful all the time when your body feels like it has not slept in 3 days.

Tatiana Corbitt: I wish more people knew that sleep is not for the weak, it is for the strong – you can’t stay healthy for long without good sleep. And it affects everything.

Want to see more articles like this? Browse our collection of Community Views articles and read more stories and advice from the narcolepsy community by clicking the button below!

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Narcolepsy.Sleep-Disorders.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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