An Interview with Viviann Nguyen

conducted by Jasmine Kan


So you told me that you have narcolepsy. Would you mind telling me about how you got diagnosed and your journey with that?
I first found out I had narcolepsy when I was in 4th grade. In the beginning of 4th grade during class I always fell asleep during lessons or when the teacher was reading. I never knew why I was always tired and always falling asleep. I would get yelled at by my teacher all the time. It was happening too constantly that I told my doctor. I was suggested by my doctor to get a sleep study. After getting a sleep study I was diagnosed with narcolepsy. Ever since then I have been trying to live a normal life with a sleeping disorder.

How would you define narcolepsy?
I would define narcolepsy as daytime sleepiness. I can fall asleep literally anywhere anytime. If Isit still without movement for too long I can fall asleep easily.

Have you adapted your routine to accommodate your condition? If so, how?
I’ve accommodated my narcolepsy in many different ways. One is I take daily medication to help me stay awake. I have also incorporated naps into my routine. If I don't take my naps then I get tired easily and can get sick and have migraines. I also do things in short periods of time with rests and breaks in between. I cannot work for long periods of time or I will become tired.

How has living with a chronic disorder affected your mindset?
It hasn’t affected my mindset too much as I have always been a positive person. I try to live my life as if I don't have this neurological disorder. I try to work my hardest and do my best no matter what. In a way it has helped me think differently. If it wasn't for it I wouldn’t be who I am today.

Has narcolepsy affected your relationships? (any, friendships, family, teacher etc)
I would say it hasn’t affected my relationships too much. My family and I have always been close and my narcolepsy doesn’t affect that. As for my friends I have always had great friends that are understanding of my condition and dont judge me for it. The only con is that I can get tired easily when I hang out with them for too long but they know this and let me sleep if I need to. In school I was lucky enough to have teachers that were always accepting of it and understood if I needed extra time on test or quizzes or were ok if I dozed off in class.

Is there a way people around you can make your life a little easier?
I just ask that people are understanding and respectful and don’t make judgments about me because of my disorder. I want people to know I am a hardworking person even if I may seem like I’m lazy or don't do much. I always want people to understand that I get tired easily and need breaks often.

Have you met anyone else with narcolepsy?
I personally haven't met anyone with narcolepsy but I do know Jimmy Kimmel and Kang Daniel (a kpop idol) have narcolepsy.

What’s the biggest misconception people around you have about narcolepsy?
The biggest misconception people have about me is that I’m lazy and don’t work hard. I always try my best even if I’m tired. I try to push through and try to get things done.

How are you feeling about your move from Boston to New York in regards to your disorder and medical care?
I feel fine especially because I’m still in the same time zone so I didn't need to adjust my sleep schedule. I'm still trying to get used to my new schedule though as my zoom class schedule is different from my in person class schedule. I still keep in touch with my doctor which I don't have to meet with often and I still have my medication I take daily.

What’s one thing you want people to take away from this interview?
Yes I have narcolepsy and I may get tired really easily but that doesnt mean I'm not a hard worker or I don't like to hang out with my friends. I am still a person and would like to be treated the same.