I get this from time to time, the sad face, head tilted to one side, sometimes there are actually tears in the eyes. The look of full on pity, perhaps a hint of ‘thank fuck it’s not me’ mixed with horror.
“Ohhhh, I do t know how you cope!”
I cope because I have no other choice. I actually hate the word ‘cope’. It’s nonsense isn’t it?! Coping simply means getting through each day, each hour, each minute. There’s no opt out in life (well, there is but let’s not go there), you can’t choose to not be ill one day, you can’t pop off your stoma and reattach your arsehole. So asking me how I cope sometimes feels like you’re asking how I am still alive. How I’ve chosen to live even with this disability.
Perhaps I’m being over sensitive, but sometimes I can’t fucking stand the sad looks I get, the pity, the tilted headed frown.
When I talk on here, in public, on social media, it’s not because I want your sympathy. I just want you to understand a little more. I don’t want to feel like you are appalled by the realities of my illness, I just want you to know what they are.
I had a big leak recently and someone saw what had happened and the aftermath. They said with utter horror and sadness “ohhhh Sam, it’s just awful!!! I don’t know how you can live with this! How do you cope?! I couldn’t do this!”
I don’t think they meant to be hurtful, I don’t think they realised that their words hurt me far more than the blockage that had caused my bag to block up and push away from my skin.
Perhaps I’m being unfair in expecting understanding without sympathy, care without pity. After all it’s hard enough to understand my own feelings let alone expect others to know how I need them to react.
Just remember for the future though that I really don’t want you to feel sorry for me. We can talk about it, we can say that it’s shit (with every pun intended!), we can discuss how it’s sometimes really, really fucking hard to have a chronic illness and a disability.
Take my lead, if I’m crying then please care for me and give me a hug. But if I’m just dealing with my usual day to day life, be aware that your pity can make me feel like I’m a second class citizen, it makes me question your thoughts on me and my life. Your tilted head sad face may be well meaning but feels patronising as hell.
✌️ & ❤️