This is a standard email I send to people who have suggestions for things I should try for my chronic pain:
Hi, my name is Aliza. I have fibromyalgia.
I know that people don’t know what it is usually. I know most people can’t pronounce it or spell it. If you’re lucky, you’ve probably seen a silly advertisement in a magazine or on TV for a medication that is being used to help people COPE (not cure, there is no cure) fibromyalgia. And that’s about as much as most people know about fibromyalgia if they’ve heard of it at all. Even my close friends and family who see me on a daily basis have a hard time understanding how fibromyalgia affects my life.
I think it’s pretty safe to say that unless someone asks you for advice on their health problems, you shouldn’t assume they want it. After all, you wouldn’t go up to an obese person and give them pamphlets on weight loss. In the same vein, I would ask that you please not email me every single time you read something about fibromyalgia or you see an advertisement for a medication for fibromyalgia. If I tell you I’m in pain, I’m not asking you for suggestions on how to fix it. It’s rather like a weather report: Aliza’s pain is at 100 degrees rather than 50 degrees today.
Think about it for a second. What are the chances that you’ve heard of something that I, or the National Fibromyalgia Association which sends me information quite often, haven’t heard of? What are the chances that you’ve uncovered something that I’ve never uncovered before? Mostly, what are the chances that you know something that I don’t about fibromyalgia? Also, what are the chances you know something my doctor doesn’t already?
Please understand, I receive emails sometimes daily from well-meaning, well-intentioned people who have “suggestions” for things I should try with my fibromyalgia. (Everything from speaking software to tea, yoga, and other remedies.) I know they’re just trying to help but they don’t. At best, you’ve caught me on a bad pain day and added yet another annoyance to my life. At worst, your suggestion is the tenth I’ve received that week because everyone saw the same advertisement you did. It gets tiresome and at times, condescending.
If you want to help me cope with my fibromyalgia, ask me how you can help me. And here’s what I would tell you…. If you’d really like to help, make a donation to the National Fibromyalgia Association so that knowledgeable people can help find ways to help those of us who suffer with fibromyalgia cope with it in our daily lives.