What People Don't Understand About Narcolepsy

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What our blogger Amanda wants people to know about having narcolepsy. Some of what she says may be surprising.

I was one of those kids who had a 20-year plan. My plan was to be a civil rights attorney -- to advocate for those who didn't have a voice. But when my grandmother got sick and my family needed my tuition money to pay for her care, I left college in Alabama, moved back home to Florida, and got a full-time job as a bartender in a country club.

So I did. I adjusted my work schedule and cut back on my shifts. I tried drinking less coffee, then more coffee. Nothing seemed to make a difference. In fact, my sleepiness got worse. I was like a zombie.It got to the point where I couldn't drive during the day without falling asleep. Once or twice a week, I would wake up on the side of the road. Often I'd be awakened by the sound of horns honking at me because I'd veered into oncoming traffic.

But for now, I'm doing well. It's safe for me to drive again. I'm stronger than I have been in 5 years, and I'm able to weightlift competitively. My chances of getting a national title look pretty good.I've always been pretty open about my diagnosis. When I tell people I have narcolepsy, I always expect to get a comment that will hurt my feelings because it's happened so many times.

Some of the comments I get are hurtful. I'm studying to become a veterinarian, and when I told one of my classmates that I have narcolepsy, he said,"How do you expect anyone to let you work on their animals when there's something wrong with you?"One of the biggest misconceptions is that we're hindered. I don't view myself as being hindered in any way. Quite honestly, I think my narcolepsy is the coolest thing about me.

 

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