Communicating the Narcoleptic Life

Living with narcolepsy can pose problems in our relationships with others. From the outside looking in, it’s understandable that people see someone who falls asleep easily.

I don’t fault people for thinking I am lazy when they see me sleeping all the time. It hurts, but I can understand where they are coming from.

We can play a huge role in helping to educate those around us about the hidden sides of narcolepsy. Finding quick responses and simple explanations can set us up for success, as well as help to educate those who love us.

Self-evaluation sets me up for success

Learning to communicate with those around us is critical and takes a bit of self-evaluation. When I find myself short or snarky with those around me, I often evaluate why I am responding that way. Especially if a particular scenario or comment is continually triggering me. I detest being short with my loved ones and found some simple phrases to help set me up for success.

How I choose to respond to others

When I hear, “Isn’t it hard to eat such a restricted diet?"
My reply:  “Yes, but having my narcolepsy symptoms affect my day, is harder, so I am happy to eat this way.

When I fall asleep in a conversation:
My reply: “I am sorry, I do this to everyone, not just you.”

When I am extremely tired and getting short with my loved ones:
My reply: “Please excuse me for a few moments, I need a mommy time out.”
Then I evaluate what I need. A quick nap? Even laying down for 5 minutes on my back can help. My kids think it’s hilarious when I put myself in “time out.”

When I hear, “You are so lucky you get to nap whenever you want.”
My reply: “A nap is only a luxury when it is optional.”

When I have a cataplexy attack:
My reply: "I am ok. My brain just thinks I am dreaming so it knocks out my skeletal muscles. It just looks dramatic because I am awake and standing.”

When people think that narcolepsy only makes us fall asleep easily and that’s it:
My reply: “There are many invisible symptoms of narcolepsy. I just don’t talk about them all the time, because I don’t want to complain. If you are curious I am happy to share more.”

Making effort to assume the best in people

All in all, I choose to think the best of people. I always assume they mean well by their questions and comments. Most are genuinely curious about the uniqueness of narcolepsy.

Yes, there are some people who just judge without asking questions. I don't let that bother me. It's just not worth the energy. Even if what they are saying is triggering to me. I choose to stop and respond, not react.

Let's help each other out

There are plenty of opportunities to find ways to communicate effectively. Do you have a scenario that you could use some help communicating? Does a certain phrase trigger you and you wish you had a good response for it?

Let’s brainstorm! Leave a comment and we can figure it out together.