By Jessica Nora, as told to Rachel Ellis
My family and I jokingly refer to the year I found out I had narcolepsy as my “blackout year.”
I was living a nocturnal life at college, up all night with insomnia and stuck in my dorm room sleeping during the day. I couldn’t make it to most of my classes, and eventually I had to take medical leave. I'd been having similar symptoms since I was 12 or 13, but doctors had always attributed them to other things like anxiety or ADHD. But once I got to college, they got significantly worse.
I went to a sleep doctor, thinking it was insomnia that made me sleep all day. She asked me questions that seemed totally random:
Do you get hallucinations as you fall asleep?
Do you sometimes see critters running around?
She also asked me about sleep paralysis symptoms, which I'd had, but didn’t realize were unusual. I just thought I was prone to really scary nightmares. My answer to every single question was yes.
Turns out, I was a textbook case of narcolepsy with cataplexy. That's narcolepsy with periods of muscle weakness.
Learning -- and Adapting
I'd lived with symptoms for about 5 years before I got my diagnosis. Learning what I had made a huge difference in my life. I was finally able to find a medicine that helped me function. Recently, I’ve had other health issues crop up that made my narcolepsy worse and made me stop my medication for a little while. It’s been amazing to see the significant change in me when I’m not on it.
But one silver lining to pausing my meds is that I’ve learned behaviors to keep me from going into what I call the “nocturnal zone.”
There are a lot of tricks or rules I use to keep myself functional during the day. One is I only use my bed for sleep and intimacy. Any time I'm not doing one of those things, I’m somewhere else, even if it’s just in the chair beside my bed.
I also don't let myself nap after 8 p.m., or go to sleep before 10:30 p.m. Those are the times I've found that work for my body. You have to find what works for you.
An Artistic Turn
There's really no part of my life that my narcolepsy hasn’t influenced in some shape or form.
I’m an art activist. Even though I've always thought of myself as an activist, I didn’t always identify as an artist. I found my art because of my narcolepsy.
The only thing I could do sitting alone in my room during that “blackout year” was create art. Then I looked online and found the amazing world of art therapy. It's a way that people learn to use art to work through things that trouble them. I knew that becoming an art therapist was what I was meant to do, and that's how I found my career.
Narcolepsy has also had a big impact on my life as a disability activist. It’s really changed how I see the world, and also how I look at state and federal legislation. It's helped me see a part of society that I had blocked myself off from, as most people do. We put on blinders around things that we don't understand, things that make us uncomfortable.
But having narcolepsy has opened my eyes and broadened my activism. There are wonderful activism groups, like Project Sleep, that raise awareness and work on various state and federal bills and improving disability rights. Some groups even provide scholarships to students with narcolepsy.
The Real Narcolepsy
I think the biggest misconception about my condition is that it fits into one easy picture. Very few people have heard of it, and the ones who have usually see it as some sort of comedy sketch. I mean, sure, it's funny when I fall asleep. But that's just one part of narcolepsy, and not everyone deals with that symptom.
Narcolepsy doesn't have a one-size-fits-all template. Every aspect of it depends on the person who has it, like:
- If you can drive
- Whether you can travel
- What your most alert hours are
- If you have cataplexy
- What sets off your sleep attacks
One huge issue in getting narcolepsy accurately diagnosed is access to knowledgeable specialists. There are wonderful resources out there for support and education, too.
When I found out I had narcolepsy, I was lucky to have an incredible doctor who had a wealth of knowledge about sleep disorders. I’ve since learned that's extremely rare. But it isn't impossible.
The key is to know your body, because it's the best guide to tell you what your narcolepsy will be like for you.
Jessica Nora, 27, is an art activist and art therapist living in the Boston area. She uses her artwork to spark conversation, often about the subjects of invisible illnesses or trauma. You can find her on Facebook as The Narcoleptic Jew.