Before I was diagnosed with fibromyalgia, I would have been at a loss about what to say to someone with a chronic illness. It’s not because I didn’t care, I really just didn’t know. I think the same may be true of those in our lives who appear to be insensitive or rude in their remarks. They just don’t know.
I want to help those people learn to say “this,” but not to say “that.”
You could say … It must be so hard to be housebound most days. I can’t imagine what it would be like to not do all the things I want to do, like visiting and shopping. Don’t say … It must be nice to stay in your jammies all day and just lay around watching Netflix. I wish I could do that. (They might for a week or so, but I’m sure they wouldn’t want the pain and fatigue to go along with it.)
You could say … I would love to bring you a meal. Can I pick up anything for you on my way over? I’d be happy to pick up some groceries or stop at the pharmacy for you. But don’t say … It must be nice having people do your errands and cook for you. I wish I had a maid or servant. How lazy can you be?
You could say … Wow! I had no idea that fatigue could be so devastating, or that sleep could be so elusive. I’ve never heard of “painsomnia,” but it sounds dreadful. But don’t say … Everybody gets tired and has off days. Take a nap or get to bed earlier. If you get enough sleep you’ll feel better.
You could say … I’m sorry you can’t be involved in the physical activities that you used to enjoy so much. That must be devastating. But don’t say … If you would just exercise more I’m sure you’d feel better. Don’t you know that exercise will give you more energy?
Things you shouldn’t say come across as accusatory, judgmental, unwilling to try to understand, sounding like a know-it-all. The things that you should say come across as compassionate, caring, helpful, and convey a willingness to understand. Which do you believe would be most uplifting?
You also could just ask sincerely what would be appropriate to say. We will be happy to tell you. We want to be understood. We want our pain and other issues to be acknowledged.
Fibromyalgia is an invisible illness, so it’s hard most times to see how we are suffering. We put on a brave face and say we are fine when we’re asked. But it’s exhausting trying to defend how we really feel.