I was at an opticians a while ago and a woman that I hadn’t met before was on the reception. We were going through the terribly boring process of filling in some forms, prior to the exam and I’d mentioned the visual disturbances caused by RSD and how the red and green circles really hurt. Sounds a little weird I know, but many RSDers will know what I mean. Anyway, she started to ask about RSD and she was a little gobsmacked – right or wrong, I don’t hide the reality of living with RSD, ask me a question about living with RSD and I’ll try to answer honestly in a way that you’ll understand. Then there was the cringe moment, the phrases that should never be said.
“oh, you’re so brave….but you look so happy smiling!”
Oh, ground, just swallow me up now! Get me away from this narrow minded numpty!!
How can I be brave? Bravery is a choice surely? If you wrestle a grizzy bear and stop it from attacking someone else, that would be brave. To jump infront of a speeding car and scoop the child in the cars path, up into your arms and into safety on the pavement, that is brave. They’re choices, choices that you make to do something out of the ordinary and put another persons life above your own safety. RSD/CRPS isn’t a choice, it’s something cruelly inflicted upon me, something beyond my control. Am I brave because I live through it? Again, that isn’t a choice.
As for smiling, is it so hard to phantom that someone in pain can also be happy? Should people in chronic pain shut themselves away from the world and sulk, never to smile or laugh again? It would be an awful world if that was the case.
Sadly it’s not an isolated case, it happens regularly to me, so no doubt happens to thousands of others every day, too. Is it so hard to grasp that a person doesn’t want a pity party, just because they live with a disobedient body, just a little understanding is what is wanted, – I’m not brave and why shouldn’t I be happy? All I want is a little understanding when it’s needed, not a pity party with a 3 tier cake and a karaoke!