I wrote the following letter for members of several idiopathic hypersomnia and narcolepsy support groups on Facebook. Some people have personalized it as they see fit, and I have sent out personalized copies for a few hundred others. I don’t know the exact details of the struggles faced by people with other invisible/chronic illnesses, but I do know quite a few of them face a lot of the issues addressed in this letter, which is meant to be shown to those who don’t understand these challenges.
To Whom It May Concern:
I am writing this because [insert name] wanted to help you better understand some of the issues he faces on a daily basis because of idiopathic hypersomnia (IH) or narcolepsy.
The first thing I can promise you is that he hides as much of his suffering as possible because showing it would drag everyone else down. This is commonly referred to as our “game face.” If you ask “How are you?” the response you get is relative to how he feels all the time, so it doesn’t mean the same as when you use the same words. If the response is “Good!” it probably means he is really tired but is dealing with it well enough to almost function like any other person. There is also a pretty good chance that it is a flat-out lie. If the response is something like “OK” or “fine” he is struggling and needs your help. If the answer is “tired” he is on his last leg. Something more like “crappy” is an indicator that, if you really care, you need to send him to bed and keep the kids quiet or take them outside or somewhere else so he can sleep.