Hello. I have narcolepsy.

I have tried to talk to a lot of different people about living with narcolepsy, but it usually doesn’t go very well.

Trying to communicate with people about narcolepsy has been an ongoing challenge for me, but I know that I need to, and that is part of the reason that I decided to create this website. Narcolepsy has become a significant part of who I am and how I operate day-to-day, and I don’t feel like I can truly be known unless I am willing to explain it to others. I honestly can’t imagine what my life would look like if, for the past eight years, I didn’t suffer with narcolepsy symptoms everyday.

What I want from non-narcoleptics

It’s interesting how differently people have reacted when I have told them that I have narcolepsy. I never assume that people have any idea what it is, because I have met several people that have never heard of it and even more people that have inaccurate perceptions of the disorder.

The reaction that I like the best is when people have shown me a combination of both interest and compassion. It doesn’t happen often, but I am deeply grateful for the people that have showed me love in that way. When people don’t assume that they understand narcolepsy, and when they want to learn more about my experience living with it, it communicates love and humility.

I always think of a girl my age named Julia when I think about communicating about narcolepsy and health issues. Julia showed me love, humility, and compassion in a way that demonstrated to me more deeply the character of Christ Jesus. I have only spent time with Julia a handful of times, but each time has meant a lot to me. She only recently entered my life because she is the fiancé of my husband’s best friend.

What stood out about Julia from day one was her genuine interest and desire to know me deeply. She asked thoughtful questions and did not hold back from asking about topics that many people generally view as private or too personal. Julia mourned with me over my losses the first time I spent one-on-one time with her. She literally cried for me out of compassion. I don’t think I knew how much I longed for someone to mourn with me like that until I experienced it.

What is most beautiful to me about my experiences with Julia is that they aren’t experiences with just Julia. In all my encounters with her, I have witnessed the presence of Christ Jesus. She is an example to me of what it means to be a light in the darkness, and it is so evident that grace and compassion mark her life. Not only did I feel Christ’s compassion toward me through Julia’s mourning, but I felt his love for me when she communicated that my faith has unique power because of the weakness that I know and live.

I need to learn too. 

Julia offered me what I desire from others when I communicate about my pain and struggles, but I know that I can’t count on people to always respond that way. There is a lesson for me to learn when I reflect on all my attempts to communicate about narcolepsy for the past eight years.

I can think of several qualities that I could grow in, but acceptance and grace for myself and others are things that I struggle with regularly. I have to accept my weaknesses and needs to be able to explain narcolepsy without resentment. For most of the past eight years, I have given into minimizing my narcolepsy. It is easy to minimize your problems when you believe that everyone would prefer if you did.

I am learning that extending grace and acceptance to others starts with receiving acceptance and grace from Christ Jesus. I am still figuring out what that means for me day-to-day, and I know that it is a journey that will not be accomplished overnight.

Remembering who I am in Christ and what I have already received through his life, death, and resurrection is my starting point. I am grateful for how Christ is teaching me to reflect him more as I continue to communicate about my narcolepsy.