Wednesday, 3 October 2012

A Fine Line

One of the worst things about Crohn's being an 'invisible illness' is that I have to talk about it.
Don't get me wrong, I'm by no means ashamed of having this disease, I simply mean as no one can see what's wrong I have to speak up for myself and explain my symptoms. I've spoken about this in my blog before, but as it still appears to be something I'm struggling with its still relevant to me.
Outwardly for Crohn's sufferers the milder symptoms, and most common, are not instantly apparent. Certainly I have found that the disease affects my appearance, in such things as bloating, skin rashes, dry skin and hair loss (lovely eh?) but again these things could all be written off as feeling under the weather or run down.
My parents, partner and close friends all 'know' when I'm feeling awful- they can see it in my flaky, cracked, dried out, haggard face, my behaviour and even my stance, being hunched up like the hunchback of Notredame gives it away most of the time. But even a select few of my colleagues have also said they can tell when I'm poorly- they see me almost everyday after all, and after a while start to spot the signs.
I spend an inordinate amount of my day saying "I'm fine!" when I'm not. Why do I do that? Yesterday I wasn't fine and my boss insisted I lie down in our first aid room. She tucked me in and everything like a proper legend. I felt slightly uncomfortable and awkward but as we get on pretty well I didn't feel daft being 'ill' around her. I think on the whole I'm not as honest as I could be about my Crohn's as I don't want to be pitied. Especially in a work environment- I want to appear strong and professional, not limp and sickly. Even if the latter two are how I feel the majority of the time.
This may all sound silly to those of you who may be reading this and are healthy - but bear in mind when you are sick you complain, you go to the doctors, you are 'cured' (on the whole) - you are entitled to gripe and moan because that's just what you do when you are ill, you get leeway to feel sorry for yourself for a few days!
But what do you do when that's how you feel everyday? When you feel awful almost everyday in life and know you aren't going to get better and there is no cure? It's the thing I struggle with most, trying to separate my 'life' with my illness. An impossible task. I can't seem to find where I am meant to comfortably slip this in. This blog is a great place for venting and waxing lyrical on my woes, a sort of public diary, but when the laptop is closed and the post is out there, I still have Crohn's. The end of the page is not the end of my story.
I've said before, honesty is key. In all aspects of life it's so important. So why do I find it so difficult not to lie about what's in my gut? (Literally). Having given it some thought I suspect I'm terrified of people getting 'sick' of me. Sick of me complaining, or cancelling plans or generally not being 'fun' anymore. But this is a vicious circle as the more I focus on that the more I bring my mood down! When I told my partner my fears about this, he said "But you don't talk about it - at all" - that was a long time ago, and since then I've made a point of telling him when I feel bad and explaining as best I can my symptoms. Because I realise I'm not alone, and that's something I'm very thankful for. I try to think of how I'd feel if the diseased guts were in the other body and it doesn't even bear thinking about. I'd be heartbroken and helpless to see someone I love going through this. I can't even handle it when my Dad has the cold. So I try to be tolerant and patient when people ask because I too am allowed to be cared for and loved. And that's a wonderful thing, that makes me feel so very FINE.

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