Want to tell us about your journey? Share Your Story.

“The best advice that I can give to someone else who has my condition is to learn what your limitations are and don’t try to push yourself too hard…”

How has your life been impacted by narcolepsy and/or idiopathic hypersomnia?
No one ever seems to talk about how people with Narcolepsy Type 1 need to regulate their emotions more. Anger and saddness can cause me to have a full body Cataplexy attack. If I’m startled then I can feel my knees buckle and I worry that one day I could be triggered into having a more severe reaction. I’m able to work, but not much else by the time I get off.

I fall asleep if I’m a passenger for more than thirty minutes and I can’t drive as a result. I have to rely on public transportation, which doesn’t run at night even though I live in an area that’s defined as a metropolis. It’s difficult for me to go much further than the city limits without assistance from my family or friends.

I have to sacrifice a lot of my free time and social life to do the things that need to be done (like household chores or work).

What is one thing you’d like people to know about narcolepsy or idiopathic hypersomnia, and the challenges that you’ve faced?
I feel like a lot of professionals focus on the excessive daytime sleepiness, but none of them talk about how tired that can actually make a Narcoleptic person feel. My medications help keep me alert and awake, but that doesn’t really solve my overall problem with sleepiness. I am exhausted by the end of the day and my quality of life feels shortened by the limitations that I have.

Have you faced barriers to care? If so, please tell us about these barriers (e.g. geographic location, financial, family support, etc)
The biggest barrier that I’ve faced is getting medical accommodations approved at work and the lack of public transportation past 6 pm on the weekdays (Monday through Friday) and 4 pm on Saturday. My city doesn’t have any public transportation available for me on a Sunday and traveling outside of the city limits requires me to rely on family and friends or coordinate with larger transportation companies like Megabus.

What lessons have you learned that could potentially help others living with this disorder?

The best advice that I can give to someone else who has my condition is to learn what your limitations are and don’t try to push yourself too hard.

What is one thing you’re proud of as someone who is affected by narcolepsy and/or idiopathic hypersomnia?
I’m proud of the fact that I am able to work because I know many in this community can’t. I’m also proud of the the independence that I’ve been able to achieve despite my limitations.