I have an illness. Some days, weeks and months, it’s not a big thing. It’s not who I am and I exist in uneasy silence with it while it sleeps, waiting in the hope that its feeling tired and not going to rear its head when I least expect it. As I said, it doesn’t define me, but it IS a part of who I am now.
And then at other times, it consumes me like a hunger that I can’t fix, a void that I can’t fill. I struggle to walk up the stairs; I get out of breath and my heart races doing the smallest of tasks. I get sleepy, I feel dizzy and I get forgetful. My illness becomes the first thing that you see about me; dark circles, a pallid complexion and a girl who sleeps for 23 hours a day and could drink a river dry.
Last week, the hint of the day on the WordPress blog was to explain to someone who didn’t know anything about a part of you. And it came at a poignant time, as that week I had been in bed, struggling with the other part of me and dealing with people who just don’t understand.
I see it from the other side, I really do. I can remember a time when I wasn’t ill, when all the bits in my body did what they should when they should and I used to get annoyed with people taking lots of time off and having to cover their work. So I can put myself in their shoes, and I get it.
But I wonder how many people, equipped with the knowledge of my day to day life, could put themselves in my shoes? Imagine a day where the first thing you do when you wake and the last thing you do before you go to sleep is stick a needle in yourself, or you would get really sick? Not to mention the four or five times in the day in between. A life where you can’t get pick and mix at the cinema because you can’t exactly work out the sugar content, or where you can’t reach for the calming bubbles of that full fat diet coke when you have a hangover, making do with diet versions or fizzy water?
It all adds up. Don’t feel pity, the majority of things I can do, with some subtle adaptions, and I do. But there are some days that something happens, like someone sneezes in my face on the tube, and then the whole balanced micro system goes to pot. The cells that are preventing me from coming down with any other nasties get confused and rush to a different place, leaving the alien bugs of someone else’s sneeze to bring down my pathetic immune system in one fell swoop. And then the sugar becomes the enemy and infiltrates, causing a whole host of other problems. I make light of it, but it’s serious.
If someone could stand in your shoes for one day, what would you like them to see?