I’m so torn. For me the answer is as follows:
It depends on my mood. And how a person makes me feel. And where I am. But mostly I don’t tell them unless I have to. In fact, since my diagnosis in 1998 (at age 14), I have lived in (minus my 10 semesters at college) the same small town. And, during my flare up last spring, I learned quite a few people whom I have known for the entirety of that time had no idea I have a chronic illness. I consider this amazing. They are either… very kind and gave me the benefit of the doubt on countless occasions, or very forgetful. Either way it meant a lot to me.
On the other hand, it means just as much to me to think of the hundreds of folks who know I struggle with health challenges. They haven’t made it their business to tell people. They haven’t made it their business to make a scene when they can tell I am not feeling well. Quite the opposite.
Anyway, back to the point. When I have to tell folks I just say it. Something stupid sounding, I’m sure. But I always say it matter-of-factly. “I have fibromyalgia and osteoarthritis.” I then typically downplay whatever symptom or situation has necessitated my discussing my invisible illnesses. And I am usually tempted to crack a joke. But I typically resist the immature urge. Because it’s not a joke. And I don’t treat it lightly (that doesn’t mean I act like it’s the end of the world, either).
- Live Well, by SilverRiverMetal
Once I’ve told people I’m pretty open. I don’t inflict more pain on myself by trying to mask a limp as I walk (like I normally do). I am myself. And I don’t pretend to be otherwise. Frankly, once someone knows I feel more comfortable and less confined. WARNING: I find that this can be dangerous. I find that the fewer people who know about my health issues the more motivated I am to live well. (And I don’t mean well as in good, I mean well as in not ill.) The more motivated I am to level with the fact that there are countless things I can do with fibromyalgia. (And very few things I can’t do. For the most part I lead a very normal life.)
When people know about my fibromyalgia it is especially important to stay motivated and to refuse to excuse an effort that is inconsistent with my capabilities. I think this is the biggest struggle for me and my fibromyalgia… as I discussed here and therefore fall short of our purpose.. And, to be honest, I think it’s a healthy and helpful one. It is far too easy to fall pray to excuses (although there is plenty of room for reasons with fibromyalgia).
So whether your new friends know, or don’t, remember they can challenge us to find the limits of our capabilities and push them slowly. Kinda like stretching. But be careful not to over do it.
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