Monday, 13 April 2015

'Perfect Comeback' - #HAWMC

Todays Prompt- 'Tell us about a time when you felt marginalised or stigmatised by someone because of your health condition. What did you say or what would you have said?' 

Mainly due to the 'invisibility' of Crohn's Disease (and I'd imagine, most chronic illnesses), it can be incredibly difficult to express the complexities of the condition to outsiders. Not that we should have to, of course, but in some cases it's all but vital. 
Often the fact that the majority of my symptoms take place under this cloak of invisibility can be a blessing; I can conceal my illness if I choose to, and if people around me were to see the state if what's taking place underneath my skin, they'd most likely vomit on sight and/or disown me. 

Many of my symptoms ARE visible however, such as hair loss, my complexion, dry skin, fevers and shivers. Like many men and women in the same diseased boat as myself, I often feel I look rancid and unpleasant to the outside world because that's how I feel on the inside. It's hard to encourage yourself to dress up and slap on make-up when your skin is flaking and your hair is falling out in the shower. 
So why, just because strangers can't see all of that, should we have to explain ourselves? 

In terms of 'perfect comebacks', when considering one particular case, it was impossible to pin down. Over the years I've been patronised by nurses, employers, FRIENDS, and complete strangers about the ins and most commonly outs, of my condition. Let me just reiterate that: MY condition. It's hard enough to come to terms with having an incurable illness without being told what you should and shouldn't be doing. How you should and shouldn't be acting, and when you should just (wo)MAN UP AND GET OVER IT. 
It's incredible how quickly you become a 'patient' instead of a person when you have a chronic illness. Someone to be looked after and pandered to, someone who must be shielded from stress and bad news in case it serves to make matters worse. It may not feel like it, but that's just about the most insulting thing you can do - we are fighting on a daily basis to maintain some semblance of our identity post-disease, to chip away at that even further is more damaging that you can even begin to understand. 

I often wish I could hit back with a smarty-pants zinger in retort to the idiotic or insulting comments I hear about my condition on a daily basis. Sometimes I do. But it doesn't necessarily please me afterwards. In fact I feel like a bit of a failure; that I've missed another opportunity to educate. 
So now I try to do just that rather than getting defensive. 
When someone tells me they know how I feel because they've eaten a dodgy curry last night, I bite my tongue and calmly and briefly as I can, explain the intricacies of my disease. This isn't always the easy part. I tell them it's incurable and how it can be hurtful when comments are made through, what I'm sure must only be inadvertent ignorance. I don't insult or offend - I simply state my case and cross my fingers that they'll think twice before making the same error in judgement again. 

Or, if that approach fails I chop then into tiny pieces and bury them under my patio. 


This post was written as part of WEGO Health's Activist Writers Monthly Challenge - #HAWMC

1 comment:

  1. Having to constantly explain ourselves, especially to those we consider close, is so frustrating. Nobody has to explain why they're exhausted after a heart attack. Yet we constantly have to with invisible/chronic illness. Hang in there!