Narcolepsy Onset Is Traumatic

By Tatiana Corbitt

2 min read

My narcolepsy is unique. My narcolepsy was caused by a virus — a little bug. I was visiting home from college when I learned upon arrival that my nephew was sick. I made the decision to stay after being pressured to do so. I'd driven 45 minutes to have a nice weekend with my family, and I was looking forward to seeing my nieces and nephews.

I look back on this memory and kick myself for it – because I would never be the same after the events that transpired here.

Falling ill

I wrapped myself in a blanket on the couch, a large soft thing. I immediately could smell the sickness on it. It's difficult to describe; the best I can do is compare it to the smell of feverish breath. My stomach churned when I inhaled. I sat under its warm embrace and hoped I wouldn't fall ill.

"The worst that can happen is that I'll miss classes for a few days," I remember thinking to myself. I was, unfortunately, very wrong. I became ill from that intense virus, and it knocked me down for weeks, which wasn't normal for me. I trusted my body to make it through. And it did. Mostly.

A name for my condition

After my cough cleared up, my intense tiredness didn't. In fact, it gradually became worse. I started falling asleep behind the wheel while driving. Those were my first signs that something was very wrong. It wasn't until I collapsed in a heap after laughing at a joke that the gravity of my situation sunk in.

After 6 months of testing, I would finally have a name for my condition: type 1 narcolepsy with cataplexy. These words ring in my skull even years after I first heard them spoken.

Scars remain

I have other scars too. I've avoided using blankets since college. When visiting friends, they would tease me for it, and I would laugh along with them. I figured it was a sensory thing. It wasn't until today, 4 years after my diagnosis, that I realized why I hate using blankets – especially other peoples'.

Blankets remind me of that one time that I didn't advocate for myself, and I ended up with a lifelong disease because of it.

I hate the reminders

I hate blankets for the same reason that I checked for open COVID vaccination slots every day for over 3 months until I finally got access to the vaccine.

I hate blankets for the same reason I fear walking into a doctor's office. All of these things remind me of the traumatic experience of my narcolepsy onsetting and the steps that led there.

Missing the person I was before my narcolepsy

Some people are born with narcolepsy and don't know what life is like without it. I do. I was a different person before my narcolepsy. I miss that person sometimes. I'd like to think that I'm stronger for all of this. Fighting for every second your eyes are open can do that to a person.

When did your narcolepsy symptoms first start?

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Gabrielle Keith Moderator & Contributor
<inline-mention username="Tatiana Corbitt" user-id="4122413"/> This sounded like a horrible experience! This makes me wonder what triggered my narcolepsy. I had strep throat all the time as a kid. I had to get my tonsils removed when I was 7 because they were the size of a teenagers! I also had mono and pneumonia in high school, which I'm sure that didn't help either. Thanks for sharing your story! Xoxo/Zzz, Gabrielle
Lauren Frankland Moderator & Contributor
<inline-mention username="Tatiana Corbitt" user-id="4122413"/> That sounds so awful, was cringing so much at the thought of the blanket! Thanks so much for sharing your experience and sending empathy and support as always! Wow really drawing attention to how important it is to follow our own intuition and how hard it is! I struggle with this kind of thing, too but sometimes it can be such a life changing difference so it's an important story to be more in tune with it! It's really hard to contend how life would be without narcolepsy but I think that it's a great perspective to think about the ways it might have changed you for the better, it's something I'm coming to as well, but it doesn't negate the hard times of course! I agree with Icilii that no one is actually born with narcolepsy since it's autoimmune, perhaps you meant to say some people got narcolepsy so young they can't remember how things were before? That's true and must have been a really difficult adjustment getting it as an adult (though having N from a young age does come with it's own difficulties of not knowing what life might have been like and growing up with it etc). Best Wishes, Lauren 😀
Icilii Member
Hi, I don't know if you know this, but N1 (or narcolepsy with cataplexy) is caused by viral infections a lot. I most likely got mine from strep throat, which I became infected with several times when I was a teenager. Also no one is born with narcolepsy. It's an autoimmune disorder, it happens as a result of something in the environment. 
1. Lauren Frankland Moderator & Contributor
 <inline-mention username="Icilii" user-id="4531060"/> You're very right, viruses are the commonly accepted possible trigger of N1! It's interesting to think about what our triggers might have been. I don't know for certain what mine was and it was not viral in my case. You're right, the most accepted theory is that N1 is autoimmune and so it's highly unlikely to be born with it (Have to look into whether it would be possible for a foetus that caught a virus from the parent could have already developed an autoimmune disorder but I think it is unlikely). I think they probably meant that some people get it very early on in life and don't remember a time without it (though that comes with it's own difficulties!) I have heard of some rare cases of N1 which the child developed very young. Best Wishes, Lauren (Team Member)