I used to think it was a good idea to disclose to my friends that I have Fibromyalgia, so they could understand why I can’t do certain things, maybe appreciate why I’ve gained some weight, or why I can’t keep up with the things I used to do. I hoped that by disclosing, I’d get sympathy and understanding - and who knows, offers to help? I’ve learned this is not such a good idea and I never get the reaction I hope for. Well, except for once. A friend of my mother’s was truly saddened to hear it as he had a friend who had become completely disabled from it.
Mostly, the reactions I get run like this:
Comment 1: “Oh, I had that years ago. When I got myself out of the stressful situation, all the symptoms completely disappeared and have never returned.”
Translation: It’s all in your head and it’s only caused by stress.
Or…
Comment 2: “You know what Fibromyalgia really is, don’t you? It a few doctors getting together and deciding that if you hurt in these 18 places they’d just all tell you that you have fibromyalgia. Not to say that you aren’t really in pain, but…”
Translation: It’s all in your head and it’s a fake disease because doctors don’t know what’s wrong with you or there’s nothing wrong with you.
Comment 3: (After disclosing to a friend who had the flu that I ached all over from a flare up.) “Well, the good news is for both of us this will go away.”
Translation: It’s all in your head and you really just have the flu.
These were comments that were really said to me over the course of the last week. To the first person, I didn’t respond. To the second person, I commented after he continued to point to his head and imply that I shouldn’t let it take over my thoughts and consume me and that I could think myself better. SERIOUSLY. I told him that if I could have wished my way away from this, I would have. To the third person, I said, well, your aches will go away. Mine keep coming back.
Let me say here, Internet, this shit is NOT in my head. I’ve tried for the last year to do everything possible, including diet and exercise, to make this go away. I’ve tried to ignore it and “act as if” by doing everything I’ve been used to do. My body slaps me down and forces me to stop. Anyone who really has fibro knows exactly what I’m talking about.
The only analogy I can think of to describe this is that telling someone with fibromyalgia to just not let it get to their head and to not let the fibro take them over is like telling a drug addict or alcoholic to just have some willpower.
This ignorant attitude of others just pisses me off. And how do I educate them? Can I even educate them? I don’t know if I can. Never mind that the American College of Rheumatology recognizes it, so does the Mayo Clinic, or that the Job Accommodation Network, as part of the U.S. Department of Labor, has guidelines on Fibromyalgia accommodations, and so many other legitimate entities also recognize it.
I do know that I have decided that if anyone truly wants to know what is wrong with me, I just tell them - as was suggested to me by my younger daughter - that I have chronic pain. Or that my back is hurting me. That they understand. When you tell them it’s fibro, it’s like instant eye-rolling, sighs, and the implied, “Oh, that. That’s a fake disease and you’re just being lazy.”
The truth is that when some people ask you how you are, they really don’t want to know. It’s sad, but true. And as I was talking with these people who said this, all I could think of was that I wanted to talk with my circle of fibro friends that I’ve met and tell them about this. I knew they cared and would understand. That has to be enough for me. And I think it is. I know this isn’t in my head. I no longer need to convince the world also.
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Update on the Gabapentin: It seems to be working. I’ve not experienced any restless leg syndrome lately, unless I don’t take the meds at the same time each night, then I get some RLS. Or if I’m extremely over-exhausted, then I do. I’m not sure if it has helped with the fibromyalgia overall, or if my attitude has changed and I’m refusing to sit still regardless of how much pain it causes me. Could be a little of both. The jury is still out, I guess. Besides, I’ve only been taking it for a month and it’s a little hard to tell so soon.