Supporting a PWN

If someone you know or love has narcolepsy, here are a few things to remember:

1)  Don't take their sleepiness personal! A PWN (person with narcolepsy) sometimes simply can't help it if they fall asleep- even mid conversation. Also, sometimes the lure of a nap is much more appealing than participating in an activity, for example going to the park, going shopping, or participating in a DIY project. Simply put, the idea of a nap for a narcoleptic is quite intoxicating while the idea of an activity can just be exhausting.

2) Don't give a PWN a hard time about napping, or put a guilt trip on them. Trust me, we are hard enough on ourselves and the added guilt of loved ones is almost unbearable.

3) Don't think for a second that we value sleep more than loved ones- although we value sleep greatly when we get it, we would much rather be like the Energizer Bunny and have an abundant supply of energy to participate in endless adventures with loved ones.

4) Do be supportive and encouraging!

5) Do make an effort to be understanding on those "bad days" when nothing seems to get accomplished due to fatigue.

6) Do make an attempt to search out information regarding an element of narcolepsy such as: research, treatment, diagnosis, blogs, facebook pages, charity/awareness events etc. A slight bit of interest shown by those we love can truly warm our hearts ;)

7) Do be aware of the triggers that can cause cataplexy. If you're going to show a PWN something funny on your phone for example, make sure they're sitting! Randomly showing a funny picture to a PWN in a grocery store for instance, isn't the smartest move to make- be ready to catch them if they fall...

8) Don't use your friend's narcolepsy/cataplexy as a form of entertainment. It's not nice to laugh at someone else's expense- unless of course the PWN is a willing participant. Remember, it's okay to laugh with them, not at them.

9) Do be sensitive to the fact that health information is very private. Discussing another person's illness without their permission is a huge no-no. This includes disclosing information about what medications the PWN may be taking or have taken in the past.

10) Don't criticize or judge, but please be honest. 

11) Do listen. Sometimes all we need to do is vent our frustrations or recount events such as cataplexy attacks, automatic behaviors, and hypnogogic hallucinations. Having validation from a loved one can make the experience not so lonely.