My main goals are: to not harsh myself out with guilt or shame or embarrassment, and to remember that it’s disappointing for other folks too. But how to do that, to balance that, in a world that constantly says you’ve got to be able to “gogogo!”?
Maybe some tips?
If you have a friend who cancels plans because of disability stuff, it’s ok to be frustrated or sad about that, definitely. i think it’s important to be able to talk about it with each other. But there’s a real fine line between sharing your feelings and dumping them. As folks with disabilities, we sometimes deal with incredibly disagreeable bodies, bodies that can make us frustrated and pissed off too.The last thing we need is more shame and guilt about that. i’d prefer folks not beat around the bush with me, but be honest about feeling disappointed, and then work together to find alternatives (which is not the same as offering “helpful advice” about how i should be dealing with my body, in case that’s not clear!).
One example: a friend and i had planned a dinner together at her house. On the day, i knew i wouldn’t be able to get up her stairs and thought we’d have to reschedule. But instead, she suggested and i agreed to made up a picnic basket and have dinner in the park :) It was such a simple thing, but meant a lot to me, because she worked with me and my body in a way that didn’t make it all about what my body couldn’t do. She found a way to help us accommodate my needs, while keeping our plans. And it turned out to be heaps of fun :)
If folks are open to it, come up with other possibilities. There are so many ways to work with the bodies we’ve got. On days i can’t move much, the reality is i’m not really up for many adventures. It means i’m dealing with a heightened level of pain and probably also agitation. Company ain’t always the best idea lol. But sometimes it really is the best thing. Work together to figure out what’s going to work for your particular situation, and i really believe that frustration, disappointment and loss of a sense of community can decrease, and new adventures can be had for everyone involved.