Explaining CFS to Family: Tips and Tricks

A lot of what it was for me was explaining the difference between being tired and being exhausted (fatigued). As well as just cause I want to sleep doesn’t mean I can. And that I don’t sleep till mid afternoon for the sake of it, it’s cause I can’t wake up earlier.

I say, "imagine you have the flu, and then you go for a run, and are asked to do some complicated maths equations. Imagine how exhausted you would feel. This is how I feel when I wake up, then I have to get up and function throughout the day."

I say that my cells/organs use more energy than they produce (which is a very simplified version of a legitimate theory, so it doesn’t feel like lying).

Usually I like to only call it ME around family who are invalidating. It’s a nueroimmunilogical disorder that’s not well understood. It’s characterized by pain, debilitating fatigue, and post-exertional maliese. Also emphasizing that it’s not just normal tiredness because it’s to a clinically significant and disabling degree. If I’m explaining it to children or family who are understanding I just say it’s extreme fatigue that keeps me from functioning normally, getting super worn out from excercising (to an abnormal degree), and chronic muscle pain.