It’s become something of a hobby of mine lately to share with many of you here, on Twitter, Facebook and in real life, the more insensitive and ignorant comments about my disease I encounter on a daily basis. It’s intensely infuriating and disheartening to hear from people who have an already formed opinion on me, and of how I should live my life, and/or whether my disease is even genuine. It’s staggering to me that people consistently make such inane assumptions on how I feel. On how I should behave. How I should manage my illness.
However the more I consider my predicament, and that of I’d imagine, hundreds of thousands of chronically ill people all over the globe; I have been forced (by my own pesky conscience) to stop and take a look at myself. To try to walk in their non-sickly shoes for a moment. I want to believe people are inherently good. I want to try and understand these assumptions. But I’ve come to realise maybe I don’t necessarily need to. I’ve already made enough of my own at some time or other.
SO I suppose I’m a reformed character when it comes to judging people without taking the time to know all the facts. A rather shameful admission I grant you, but an important one to make before I spiral out of control in my rage at others.
When someone tells me “You don’t look sick” that’s an observation they are making a choice to verbalise. But also perhaps a more malicious step further to allow these words to slip from their mouths when I’ve just explained the complexities and invisibility of my illness. Are you looking to embarrass me? Shame me for my condition? Remind me that I’m not playing the part of the sickly person I profess to be?
Maybe all of the above.
When I hear those four immortal words I feel frustration, but it’s also a stark reminder of how I used to view the world. I myself have looked at someone at many times throughout my life and thought ‘you look fine I don’t know what all the fuss is about…’ – then felt ashamed when I’ve discovered the true extent of the person/s situation.
When I was younger I was naive to the concept of ‘invisible illnesses’. I thought you got ill, and looked white, ghostly, lost weight and maybe your hair if you were really sick, then got better or died. (Please bear in mind I grew up when AIDS was the most terrifying thing on the planet since I woke up without having removed my make up from the night before).
Illness, and the ‘look’ of it, seemed as distant to me as the Moon. It meant nothing. No impact. Then, as I got a little older, I watched my beloved Grandmother slowly fade to a tiny husk of a woman and pass away. This happened gradually, as she wasn’t especially ill beforehand, just old and ready. But when she died she didn’t look peaceful as all those films in black and white we’d watched lead me to believe. She looked almost afraid, and not like ‘her’.
It terrified me. It still does.
But it also allowed me a glimpse into the mind of a woman I’d loved deeply, come to terms with her life having come to the end of its term.
From that moment, my outlook changed overnight. I no longer judged. I no longer assumed the worst of everyone around me, and I tried to learn about those conditions and emotions surrounding them when, and if they came into my life through others. This of course bubbled away as just another trait until I became ill myself. Then I had the experience first-hand. I feel what it’s like to be judged. Not believed. To be made to feel ashamed of something you have no control over, and like death, its ugly.
I am ashamed of ever judging another person for how they look. And you should be too. But it’s not too late to redeem yourself; just stop it. Immediately. Look, listen and learn. Its child’s-play.