@janeatiu I would totally recreate the fight scene from They Live with the disease if I could, only without the happy ending.
Mostly I just like referencing the fight scene from They Live though.
@Cynthia I can definitely understand where you’re coming from where all the healthy people just assume it’s a little pain and that they can tell you how to manage it. Can’t find it right now, but saw a video recently which described the difference between being “sick,” as in you’ve had a bad cold or flu that laid you out and chronic disease, which is, as we know, nowhere near the same thing. That is, rest doesn’t help, you don’t get one antibiotic that may help, and in 5 days you don’t get to bounce back and get back to work with no issues.
My wife (who has been nothing but understanding during this situation and hasn’t told me what I should do once, but is understandably confused and unable to see the situation as she’s not in it, like anyone) finds it very useful when I show her a story or article that at least helps partly explain the situation.
Might I suggest showing or explaining to those close to you the story @tntlamb recently posted written by the fibro sufferer about the spoons, or, heck, even co opting the story and acting it out with them?
What I’ve been finding is that, on top of learning to do things again (thank god I don’t wear shoes with laces, I don’t want to relearn tying my shoes), we do have to explain to those close to us, and occasionally those we work with, that “getting over it” is never going to be an option. If you can manage to find a good way to explain it to them, you may find them to be more understanding in the long run. We’re not just relearning to live our lives, but we have to reshape relationships because of it so that we can relearn to live our lives.
Of course, there’s always going to be those that can’t or won’t understand - there’s little you can do about them but shake your head and walk away.