Same Conversation, Different Day
Have you ever found out important information and it was something you had to explain to basically everyone anytime you meet someone? My experience with narcolepsy so far is just that.
I tell people every day why I am tired and why I have to do things the way I do them. It is always the same questions and the same answers.
Explaining myself is exhausting
Some days it's different people, and other times it's someone I have already explained something to and they forgot. Don’t get me wrong, I am passionate about spreading awareness for narcolepsy, but when it is the same thing daily and sometimes even to the same person daily, it can become exhausting.
Things I have to explain
The most common things I have to explain to people are why I have to nap daily and why I need to keep a steady routine every day. I have noticed people without narcolepsy do not understand that sometimes people with narcolepsy just need a nap to get through the day.
Why I take naps
I have been finding myself just napping around a half-hour to an hour every day and then I am good until bed. If I let myself nap daily, then I do not have to take my afternoon stimulant. I try not to use my stimulant unless I absolutely have to because it causes my heart rate to go up and it’s really uncomfortable.
Why I keep a routine
Keeping a steady routine every day is so important for me. I have found that if I keep the same routine daily, it is much easier for me to manage my symptoms. If I even slightly go out of routine, it messes up my whole day. People without narcolepsy do not get that and they expect me to just do whatever they need me to do whenever they want me to do it.
Narcolepsy does not define me
There is one question that I get asked daily from multiple people and it is either the exact same or just changes by one word. That question is: “Can you even do ____ with narcolepsy?”
Whether the blank is my job, drive, etc., it is really annoying because people think that people with narcolepsy are limited. Yes, we might have some obstacles, but that does not mean there are things I cannot do. I do not let my narcolepsy define me and hold me back. If there is something I want to do, I do it!
No energy to spare on repeating myself
Having to explain myself daily over and over again is very exhausting. People with narcolepsy are already exhausted every day, so when we have to explain ourselves to everyone it takes up a lot of energy we do not have. The most exhausting part of being asked these things is when we have to repeat ourselves to the same person over and over.
I have come to the point with a lot of people that I just stop responding to them and walk away. For me, that is so much easier than trying to get someone to understand. If I have told the same person the same thing multiple times or have shown them different articles and they still keep asking and just not getting it, sometimes I just have to cut that person out. It can be hard, but the stress just isn’t worth it personally.
Resources I share with others
The best thing I have found to get people to somewhat understand is showing them articles or books I have read that have information on the things they ask because sometimes those explain it better than I ever could.
I have also shown them different support groups and websites that I have found helpful for myself. Everyone with narcolepsy goes through different experiences, this is just my experience thus far.
Do you feel that your doctor understands narcolepsy?