Since having M.E. I haven’t been able to get out and about as much as I would have liked. As a result I feel I’m slightly lacking in handling social situations. Not only that but I feel out of the loop, like I don’t have much in common with people. Take for example an upcoming family party.
First off I know I shouldn’t be worried or anxious, I mean it’s my family but without even realising it I’ve already started assessing everything that could go wrong. I’m worried it’ll be too noisy, too busy, go on too late. My health hasn’t been of it’s best of late so there’s the added worry of what the ‘payback’ will be. Will a day resting on the sofa be enough to recover, or it will it be a few days in bed? I can’t tell.
I also feel stuck in time compared with people my age who’ll be there. They’ve finished their degrees, are working, have moved out, are getting married etc. all the ‘normal’ things people my age do when unihibited with an illness like M.E. And I don’t begrudge them that, I’m happy for them I really am. Yet at the same time I feel a social abyss opening up – I don’t know what we could talk about. I’m not clued up on the latest news, I don’t work. Heck I still rely on my parents for almost everything; from finance to helping me dress at times. The differences between our lives is just so great how am I supposed to know what to talk about, especially with the resident brain fog?
Of course there’s always that dreaded question of ‘how are you?’ I mean how am I meant to answer that without either sounding perfectly fine or like I’m about to keel over at any minute? (ok slight exaggeration but I’m sure you can get where I’m coming from). For simplicity I usually stick with ‘ok’ even if that actually translates to: ‘the pain is veering on unmanageable, energy is depleting at an alarming rate, I don’t know how much longer I can stay’. The only problem with that answer is no one except my very close family and friends really knows what that ‘ok’ translates to at a particular point in time (and even they have trouble deciphering the meaning). So anyone else could actually portray my answer as literally being ok, well enough to be at the party even if that’s technically not the case.
Along with everything I’ve mentioned already there’s the question of ‘will they understand…’
Will they understand…if I have to use my wheelchair?
Will they understand…if I have to sit outside because it’s too noisy?
Will they understand…if I have to leave early?
Will they understand…if I can’t answer a seemingly simple question?
Will they understand…if…
Will they understand…that…
That list is pretty much endless. It’s something I’ll only find out the answer to should one of those things actually occur. I know it’s useless worrying about these things, and ultimately it does me absolutely no good. Yet when I’m lying there resting, unable to do much else but think, these are the things that end up running through my mind. It’s not just limited to this one family party, it’s any social event – meal out, party, etc. – anything where I’m in the company of people I don’t see everyday or very often. Where I’m the odd one out, trying to lead a life with a chronic deibilitating illness.
I’m guessing I’m not the only person who does this, but how do you deal with it? Currently this is my way of dealing with it – blogging about it in the hope that raising awareness of these things will somehow change it, that with that awareness will come a change in attitudes, a slither of understanding, a way to bridge this social abyss.