What It's Like Living With a Rare Disease
Last updated: February 2021
Living with a rare disease is not easy.
There are a lot of rare diseases out there. Narcolepsy is the rare disease that I live with. I know zero people who have narcolepsy. I feel very, very alone not having anyone truly get what I am going through.
Feeling misunderstood and frustrated
People say they understand, but they really do not truly understand. Imagine having to explain yourself every single day. Telling people why you do what you do. Having people get upset because you fall asleep in the middle of a conversation because your medication hits so randomly, and so much more.
Not having your family truly get it is so frustrating. It is not their fault that they do not have narcolepsy and do not realize how much it affects me daily.
My daily energy is unpredictable
Every single day is different for me. Some days, I will have a ton of energy and be able to do most of the things I need to for the day. Other days, I have very little energy and can barely shower. It all depends on how much energy I use the day before and how well I sleep that night.
I can never predict how much energy I am going to wake up with each day. No matter how much I try to explain it to people, they always seem to get angry if I can’t go through with plans because I am just so exhausted. I feel like I am letting people down because I am so tired and they just don’t get it.
Sometimes I wonder if it is even worth trying to explain myself over and over again. Having to explain myself every day uses up energy I should be saving for activities I need to do.
Making hard choices to protect myself
I have noticed that I have had to cut certain people out of my life since being diagnosed. I had to change certain lifestyles and could not keep those toxic people in my life. I considered people who do not even try to learn or understand my narcolepsy to be toxic to me.
Also, people who bring me down because they do not understand and ask over and over again the same questions when they know how hard it is for me to explain why I am the way I am.
My hope for the future
I only have a few close people in my life that actually try to understand. It is lonely but I feel that having a few people who really try is better than having several that think I am overexaggerating.
I hope that one day narcolepsy will be more known and people will start to understand it and see it from our point of view. Not sure if that will be anytime soon, so until then I will keep advocating for narcolepsy the best I can.
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