I’ve been having a lovely time at the Greenbelt Festival – well within my limits anyway! I have spent a limited amount of time on site (yes we are staying in a hotel – for all the same reasons ), and when there I have found a quiet corner to sit and listen, or to try to chat with people.
What is has reminded me of, is all the problems of having an invisible disability, ie one where when people see you they think, and often say,
Well you look well!
Because yes I probably do look ok – if you don’t notice me coughing; or that I don’t move far, and when I do it’s very slowly; and that I don’t hang around for long because I can’t concentrate and I certainly can’t talk for very long; and when I look bored, I’m not, I’m just struggling to follow or stay awake. But just because someone looks ok, doesn’t mean they aren’t carrying illness or disability within them and struggling. And you don’t always want to have to spend your life having to explain this to people, or it becomes what defines you.
But when I try to explain I can’t climb stairs, or park my car a long way away and walk – I’m not being lazy, or awkward. And just because you see me on a day when I’ve got my “presenting front” on doesn’t mean I’m coping, just that I’ve got practiced at looking like I am – and you don’t see the price I pay when I get back home…
Just because you can’t see a disability it doesn’t mean it’s not there. Don’t assume that what you see in someone is the reality of their lives – please. v