Narcolepsy Misconceptions
What are some of the biggest misconceptions about narcolepsy?
It makes me crazy that people think narcolepsy is funny. Sleeping is our most vulnerable state! Falling asleep in public is terrifying. I can't travel alone anymore for this reason. Falling asleep because you sat down to rest and ended up burning your food is not only wasteful and expensive but also dangerous, too. There is absolutely not a single thing funny about any of it. I have missed so many things I wanted to do because of my narcolepsy. I can't drive myself very far, I have to have my mother drive me, like I did in Middle School. It's mortifying. And inconvenient for her as well. It's a hardship on myself and everyone in my life. I miss appointments because I fall asleep, I'm late to things all the time, I have to leave early because I don't want to fall asleep in front of everyone... I struggle getting my son to school everyday because I fall asleep 15 times in the morning trying to get him ready.
This is a real disease, it's not a punchline, and it's got nothing to do with laziness.
(Sorry for the novel)
We hear you,
. I was at a conference recently where someone fell asleep during a panel presentation. Some people joked about it, but they actually stopped when I suggested the person might have a medical condition, like narcolepsy, that induces sleep. Their reaction gave me hope. Gentle hugs. - Lori (Team Member)
This is a good one. I had a hard time picking one, honestly. I think being looked down upon for being lazy has been the fuel for my general disdain.
One that hit home for me was a particular scenario that involved my eldest brother. He was mostly understanding of my condition, and I his. He has Russell-Silver Syndrome (RSS). He gets angry often. I suppose that comes with the territory, that being him living with social stigma as a result of his dwarfism. He's always in pain, and it won't get better. But, I digress.
Even knowing this, I let a simple comment get through my armor. I wanted to set up a drone my wife bought me for my birthday/Christmas (I don't recall exactly when), but I was succumbing to a sleep attack. He had recently become friends with a woman who has a sibling with narcolepsy. They, too, suffer like the rest of us.
This woman doesn't allow them the naps they need, and she thinks interrupting them is helpful. I think my brother took her as a sort of expert in the condition based on how they handle their sibling.
Well, my brother asks me of I started using the drone yet. I say, "No. I'm too tired to do it right now." And he simply responds, with a smile, "Oh, so you just don't want to, then, huh?" Still smiling, standing next to his most trusted advisor, he pins my ego to the ground. I didn't have the energy to fight. I couldn't. My mind couldn't physically defend itself. For a moment, at least, I felt wrong for being me.
We all want to do more than we're able, but the tide of sleep washes inward regardless of intent. Understanding others, just as well as advocating for ourselves, can lessen the gravity of ignorance. I know he means well. We can't always be the best we can be, but we can try to understand our best in the moments we find ourselves in.
Be kind to yourselves 🙏
- ✌️, ❤️, đź§I hope your brother has since come around to realize the ignorance of his friend's approach. Thinking of you. - Lori (Team Member)
Some people just don't get it and never will, it might be difficult to do, but ignore them. No more discussion with them, they are living in the Victorian age.
Friends being angry when you have to cancel at the last moment
We hear that from so many people with invisible, chronic illnesses. I wish your friends were more understanding and I hope that, someday, they come around. Thinking of you. - Lori (Team Member)
