I used to be (and still am to a certain extent), the type of woman who spends [wastes?], a great deal of her time getting wrapped up in the actions of other people around me. I’d worry what they think of me; if they like me, if they think I’m funny, or intelligent, what that certain look or sentence actually means regardless of what they say. This has caused me no end of hassle and confusion at times, mainly in relationships. So you can imagine the additional strain on someone who performs this sort of behaviour, when they have an incurable (and not particularly well known), illness thrown into the mix.
For a good while after my diagnosis I found myself slowly shaking off the shackles of caring too much what other people thought of me. It suddenly no longer seemed of any importance. I was dying, and unless these random strangers were for some reason going to be asked to give a eulogy at my funeral, their opinions had become invalid. I cared about getting well, and I worried instead about my family and friends being sad and confused. I wanted to learn about my illness and help myself and the people I love to understand it.
As I adapted to life with Crohn’s Disease, I claimed back the confidence that had previously been taken by my badly behaved bowels. I learned to get over myself and stop worrying about how people would view my supposedly unsightly scar, I stopped fretting about people misunderstanding my condition and I became confident in my ability to communicate how I felt – through writing and elsewhere.
But more recently, as my mental health has struggled alongside my physical, I’ve found myself slipping back into those feelings that I am on the outside looking in. That I am a second class citizen. It’s a strange feeling, and hard to explain, but I suppose you could say I feel that I am somehow less of a whole person due to my illness. I know that isn’t true. And I would beat another patient who said the same to within in an inch of their lives (with cuddles and soft pillows), but it’s a feeling I’ve felt start to drift back in during the last few weeks. I feel those same feelings of struggling to express myself and am at a loss to convey the complexities of my illness in a few mere sentences. Is that even possible? I doubt it.
The other day someone asked why I was unwell, quite aggressively, not a kind, “are you ok?” but more of a “what’s wrong with you?!” – this was after a day of having tried my absolute utmost to conceal the fact that I felt as though the Grim Reaper was grabbing at my coattails. Which is made even creepier by the fact that I wasn’t even wearing a coat. I felt ashamed and embarrassed to have been ‘outed’ like this; I had to explain an unexplainable illness in under 30 seconds to avoid the social horror of backtracking and pretending I’m fine. The heat was on. Not least on my forehead as my temp was through the roof by this point.
Anyway, I said “I’ve actually got Crohn’s Disease...” but before I could even delve into my brief synopsis of my irritated intestines, I was met with THE LOOK. The Look is difficult to describe, but one professional sick-people have seen many times in their lives. It starts with the glazed eyes of someone who has already decided they are heading straight down BOREDOM FALLS without a raft or life-jacket. It then moves to the vaguely sympathetic head nod, usually at the wrong places, which conveys to the recipient that you-aren’t-listening-to-a-single-word-I’m-saying-you-are-singing-Maroon 5’s-latest-single-in-your-head-right-now. It ends with silence. Painful, uncomfortable, excruciating, Best Man at wedding makes a rude joke that doesn’t land; SILENCE. There’s no way back. You’ve begun on this road and now you have to navigate over the speed bumps.
So what do I do? I try to appease the poor unfortunate soul who is at a loss for words about my disease by reassuring them ‘it’s actually fine, and no big deal, and let’s change the subject shall we? Did you see the game last night, my favourite bit was when the man kicked to the other man then his foot kicked it in the big net’.
But I should confirm that it IS a big deal. It IS a horrible and uncomfortable disease, but all I require from you, as an inquisitive wee soul, is not to assume I am ‘faking it’, or making a diseased mountain out of a diseased molehill. To listen for 30 seconds and maybe learn why it’s a difficult thing for me to talk about. If you struggle to hear it, think about how it feels to feel it. THEN and only then, can we talk about the game where the men kicking their balls into other men’s nets.