Shortly after writing my last article, I got on public transport (the Tube in this particular case) with a good friend of mine who had read it and sympathised with me. The Tube was packed, rush hour nightmare, and I wasn’t able to get a seat. I didn’t want to say anything, as I find it very awkward and just generally embarrassing (there’s a whole other blogpost in that…), so I was prepared to just stand. My friend, who we shall call H, could see I was in some pain, and decided to help. The following exchange occurred:
H (to seated man) – “Excuse me, but can my friend….”
Me (cutting in) – “H! What the hell?! Sorry, ignore them, its fine, don’t worry” *looking daggers at H*
H – “But can my friend sit down, she’s in a lot of pain and really needs a seat”
Man – “Oh, uh, yeah…” *looks at me*
Me – “No, its fine, thank you” *blushing furiously*
The man then proceeded to get off a couple of stops later, and I sat down then. The entire thing made me incredibly uncomfortable, and actually brought me close to the point of tears. When I confronted H about it afterwards, when we got off the Tube, they explained that they were only trying to help, and that if me being annoyed with them was the cost of me not being in pain, then so be it.
I am sure there are some of you who will sympathise with H, and not understand why I was annoyed in the first place, so let me explain. I still have deep seated difficulties with explaining to strangers, in crowded and public places, that I have an invisible disability. I very rarely (until now) actively “out myself”, even when not doing so causes me pain. For me, it is my choice, and a very personal one, when I tell people, and in what circumstances I do it.
I understand that you all want to help. Its difficult to see a friend in pain, and “do nothing”. But as anyone with a chronic condition can tell you, they will have weighed up the benefits and costs of saying something themselves, and made a choice. That choice might be to say something, it might be to stay quiet, or it might be to ask you to help them by speaking on their behalf. For you to remove that choice from them, to make it on their behalf, is not helpful. It can cause greater distress than the physical discomfort you think you are alleviating, and it will spoil their day. Having a physical disability gives you every day, real experiences of having your choices removed from you, and your friends should not be adding to that.
My main message is, if you know someone with an invisible disability, and you want to help, just ask. Or, wait for them to ask you for help. It’s a matter of consent, and without it you are only adding to their problems.