I need to get something personal off my chest. Forgive the self-indulgence. I've been feeling very angry this last couple of days and I think I've finally realised what some of that anger is about. I thought I'd share in case it resonates with anyone else.
I've been chronically unwell my whole life. Because of that, I never get to do everything I want. If I want to go to, say, the cinema or out shopping, or visit somewhere, I might have to wait weeks for someone to have the capacity to take me.
I've had to stay inside, isolated, for the vast majority of my life. I don't get to see many people. I don't get to go to clubs or do activities or social things. I don't mean this in a self-pitying way, I love my small, rich life, but those are the practicalities of it.
And, generally, people act as if this is not really a big deal*. It's just my life, everyone is used to 'that being how it is' and because everyone is busy with their own stuff, they often don't, or can't, think about it.
(*excluding my brilliant, closest people, obviously)
(*excluding my brilliant, closest people, obviously)
Now people have an opportunity to make some changes and sacrifices to their OWN lives for a few weeks, for their sake and for the sake of vulnerable people, suddenly it's a huge deal.
And it is. It is a huge deal. I have a lot of sympathy because change is really hard and GOD DO I KNOW IT, but why is it acceptable for people like me to live like this all the time, going without, having to stay at home, and not everyone else for a little while?
There is not an answer to that question, but it does hurt.
So, yeah, maybe your life is going to change for a while and it is going to suck. And maybe this could help you gain insight into what it's like for people who live with disability and chronic illness all the time. Maybe this is an opportunity for powerful new empathy.
