When Having Narcolepsy Ruins Your Day
I recently had the experience of getting my day ruined by narcolepsy — or, rather, my day was ruined because of the way I was treated due to my narcolepsy!
A sleep attack while alone at a public event
I was at the Oregon Renaissance Faire in Canby, Oregon when it happened. It had been a long day trying to keep up with my friends. At one point I lost my friends and got confused about where I was. I felt the panic welling up in my chest. Not only had I lost my friends, but I was also having a sleep attack!
As my eyes grew heavy, I knew I needed to find a safe place to nap... and fast! I sat with my back against a giant tree. This tree served as shade and a place to rest my head whilst I drifted off into sleep.
When I awoke, I found one of my friends standing above me, waiting for me to wake up. I was relieved that I wasn’t alone anymore! I thanked them for watching over me as I slept. I felt cared for in that moment. Having a sleep attack in public is a common occurrence for me; as usual, I napped in public and then went about my day. This is to be expected when living with a condition like narcolepsy, where sleep intrudes on everyday activities.
Taking a nap to avoid another sleep attack
Later on in the day, my friends were watching a show under a giant tent. I realized that I was having another sleep attack, and a pretty bad one. It had been a long week and a long day in which my daily nap schedule had been neglected. My brain needed sleep so badly that it just started shutting down on its own.
I told my friend, “I’m going to sit down here and take a nap!” I pointed to a table leg next to them and proceeded to sit against the table leg, just as I had sat against the tree. I closed my eyes and started to nap in order to allow the impending sleep attack to pass.
A staff member who didn't understand
I was roused minutes later with a tap on my shoulder.
“You can’t sleep here,” an employee of the bar stand said. Apparently, she was wearing antlers – but I didn’t know this until later, when my friend told me, because I was so out of it.
“They have a medical condition. They just need to nap,” my friend piped up. I managed to slur out some words of explanation about narcolepsy and my sleep attacks. But the employees weren’t having it.
“You need to go to the medical tent, then. You can’t sleep here.”
With cataplexy arresting my limbs, I was barely able to walk. I had to have 2 people support me on either side of my body. I could hear people saying, “What’s wrong with her?” as I stumbled past. I couldn’t open my eyes because of the sleep attack, and everything was passing in a fog. But I started crying from embarrassment.
How do we handle harassment in public?
I had a great time at the Oregon Renaissance Faire until this happened. It felt like a slap in the face after such a magical day.
What is most frustrating is that if I’d been allowed to exist as a person having a sleep attack in public, in peace, I would have left the faire happy rather than in tears.
Have you ever been harassed in public during a sleep attack? How did you handle the situation?
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