“How can you sleep all day and STILL be tired?” “So you can just fall asleep?” “Do you ever just pass out?” These questions are all too familiar to someone with narcolepsy. When I’m asked these questions, my mind is instantly flooded with everything I want to say that I wish others knew.
I want people to know that sleepiness is not laziness. Narcolepsy is a chronic, neurological disorder that impairs the brain’s ability to regulate the sleep-wake cycle. If you have narcolepsy, you feel like someone who has stayed awake for 48-72 hours straight. Just because I may not have the energy to do something doesn’t mean I don’t want to, whether it’s simple chores or getting out of the house.
It’s more than “being tired.” When I say that I’m tired, I don’t want you to respond by saying everyone gets tired. I know you’re trying to say that it’s OK to be tired, but please don’t tell me you know how I feel if you’ve never walked in my shoes. Don’t make it a competition of who should be more tired, because you did more than I was able to.
When I say I’m tired, I also mean that I’m exhausted from last night. My night was filled with unrestful dreams that had me waking up every hour. My night consisted of sleep paralysis where I also saw a terrifying man standing over me. My morning consisted of dreaming through my alarms, unable to wake up peacefully. I try my best to go about a normal day while walking through a thick brain fog. I can’t just suck it up and push through a daytime episode when there’s nothing I can do to stop a wave of sleepiness.
I feel disconnected from reality, and nothing else matters when I need to lie down. So please understand when I need that nap to recharge. Don’t tell me that I’m lucky to have narcolepsy because you wish you could sleep when you want or get a nap break like me. It’s not something I would wish on anybody, and saying things like that completely undermines the severity of this debilitating chronic condition.
Don’t invalidate my struggles by comparing them to someone else’s. Others often say things like, “It’s not that bad,” or “Be grateful it’s not worse.” What you see on the outside is just the tip of the iceberg. Some days are worse than others, and because the condition is so misunderstood, some people may not know how to react. I’ve had people tell me that it doesn’t seem like I have it that bad. I’ve just learned over time to carry it well and manage my symptoms with a treatment that works for me.
It’s not like what you see in the movies and shows. The media often shows inaccurate portrayals of narcolepsy that can be damaging, hurtful, insensitive, and can increase negative stigma about what the condition really is. The same thing is true for portrayals about treatment. People with narcolepsy experience many kinds of stigma: structurally within the health care system, interpersonally due to the lack of support and understanding, and internalized negative beliefs.
Narcolepsy is a chronic and rare condition, so research for new medications for it is important and gives hope. While the sleep community celebrates a victory when a new medication is approved, the media seems to use it to show negative and inaccurate portrayals of the medication without having any experience living with narcolepsy. The way that these life-changing medications are represented is critical, which is why it’s so important to be educated on both the condition and treatments.
Not everyone’s symptoms affect them in the same way. Please don’t assume an understanding of how someone’s narcolepsy affects them without knowing their story. I appreciate you wanting to learn, but please be mindful of how your words come off. Some people have asked me, “So you can just fall asleep?” While I understand that some people are genuinely trying to learn, some also don’t realize the frustration that comes with the wording of these questions or statements. Saying that I have the disease where I fall asleep a lot invalidates all the other things that come with having narcolepsy such as sleep paralysis, brain fog, disrupted nighttime sleep, hallucinations, and cataplexy.
Letting others know how narcolepsy affects me is not seeking pity or making excuses. Instead, I’m bringing awareness so that others can understand it and help support me better. Many of us love to educate others about narcolepsy because few people know how it affects us.
You can have a huge impact on someone with narcolepsy. Ask how it affects us and ask how you can help support us. Ask what you can do to help accommodate our needs. Listen to our stories, learn from us, and try to be understanding, because these things go a long way.
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