The other night, I watched an interesting episode of "Torchwood". There was a time-traveling character named Bilis who said he was trapped between time, or outside history, or something like that. He can travel through time, but lamented that he didn't belong anywhere in it, and in that episode, he'd had enough of it. I can relate.
I sometimes feel this way about my place in the world, as a relatively high-functioning fibromite. I don't quite fit in with "normal" people, because of my invisible limitations, yet I am not always easily welcomed into circles of chronically ill, either. (Or at least it doesn't always feel that way.) I did not realize the latter until recently, but I noticed the way I am treated in these groups is different from how some of the others there are treated. I have plenty of symptoms, yet I manage to work full time and do many of the things that normals do, even if I have to do them carefully or differently. This somehow makes it difficult for me to fit in anywhere. I don't feel I have the right to vent in these groups - not fully. Nor do I feel I can vent with so-called "normals" who don't have Fibromyalgia.
And I understand that those who are bedridden, in severe and constant pain, and without income, definitely have more to vent about. I get that. But the fact remains, I don't easily find a place that meets my own needs. I can give advice and share research information and offer sympathy, but I feel like my needs could never be a priority to them, not the way a more severely affected fibromite's needs may be. I feel a bit second-class there, even though I don't believe it is entirely intentional. Does this emotion make sense?
I still have these emotional needs, but I'm in some sort of no man's land, where I don't measure up or down to the standards of existing groups that I've found thus far. Don't get me wrong, but I worry that a group treating me this way could inadvertently be encouraging its members to stay sick.
Anyway, there was a response to one of my comments in a group that felt a little unnecessarily harsh toward me. It was not directly offensive, but a fibromite in a low mood would not have appreciated the response at that time. And I have recently been in that low mood, so it was a little fresh on my mind yet. I wanted to be the bigger person in all this, so I just let it be. I did not want to start an argument that neither of us wanted to have. There is always the possibility that symptoms are affecting moods among any of us at any given moment. So I try to remember to tread lightly, just in case.
So what's a Benia to do? Who can be my true peers when I need them? Are others feeling isolated among people who should be their friends, or is this just me? Is there an undercurrent in some of the interactions you have with other fibromites? Is there a place for people like me to feel at home? Do you know of groups like this?
If you think I'm making too much of this, I can appreciate that, but I don't think I should have to be on my own because I am managing my chronic illness to some degree, so I can live. We each need support, regardless of our own perceived level of suffering.
I think it's probably a good idea to let things simmer a bit before I comment or say something back that I might regret, in case I'm the one who has misinterpreted the comment. I mean, we're all kind of emotionally broken at one time or another, thanks to our ridiculously unpredictable symptoms. It's probably a miracle we can get together at all. I know that I may be making too much of all this, but, regardless of the way I feel about these specific examples, I do know that there is a variety of fibromites at various stages with varying symptoms and life challenges getting together in groups, and we are not always able to be level-headed about things when the fibro beast has been beating us down all day (or week or month or year). It's almost a powder keg for any of us to belong to these groups, given our fibro fog and mood issues. When we need a friend the most, we are not always going to be thinking clearly. It's a risk. Buyer beware and all that. Perhaps there should be a preamble or mission statement that covers this kind of stuff in the fibro groups.