I follow and read alot of blogs by people who suffer from Crohn’s.
Being a relative newbie to all of this ‘crohnic illness’ stuff, I find the words of others, their experiences and opinions very reassuring.
But it does make me wonder.
I really don’t mean for any of this to come across as ‘bragging’ about how ‘easy’ I’ve got it / had it, but relatively speaking my experiences with Crohn’s is nothing compared to others. And yes, comparing different people with the same condition – one which varies tremendously from person to person – is completely naive and stupid, but I feel so much of the pain everyone else has. I know that what I went through, have had happen to me, is happening to me, is probably nothing. I’m 5 months into my diagnosis and I’m pretty much back to my ‘normal’ life, bar the medication, dietary and energy constrains. I haven’t had surgery. I haven’t experienced too many complications or side effects of medications / hospital stays. Besides the usual pain that IBD causes to my body, mind and emotions, I have no idea how some of the people who have Crohn’s ‘worse’ than me function day to day.
But I do know. I know what it is like to explain to friends that you can’t just go out for a drink on a whim. I know what it is like to have people look at you with pity in their eyes, or worse still they not understand it what so ever. OR, that they think its IBS or I’m faking being so sick to my guts. I know what its like to have your consultant send you for tests that come back ‘inconclusive’. I know how hard it is to sleep in a hospital bed despise pain meds. I know about the night sweats, the fevers, the inability to do things for yourself, the frustration of letting someone else help you, the feeling of guilt of taking yet more time off to get ‘healthy’ again.
And yes, this is all subjective and individual, but as a group of sufferers, we know way too much about pain. But it doesn’t stop us. We sit in bed some days and just try to get better. And that’s much better than doing nothing, of giving up and surrendering to the shit that is Crohn’s. Yes, this is a crappy hand that whoever is up there is serving me, but hey, I am here fighting, every day.
I remember the days I sat in that ward, in that hospital, wishing it was not me in this situation. I wished I wasn’t the one who had to go down to Enoscopy and have cameras put places they shouldn’t be put, take test after test only to end up exhausted and frustrated. I wished many times I was just back at home, living my life like I used to, with my friends, having my social life, enjoying my work, loving where I was. But I know better now.
I know better now because I read. And I listen. And I care. Because a problem might not be solved once its shared, but it helps everyone else. Even if it sounds stupid and simple and trivial, it helps. Writing helps. I know how strong I am because of Crohn’s. And we all share that. And believe it or not, I wouldn’t change my disease for anything now because I have friends who suffer just like I do.
Awareness is key. And I am neither too proud or too embarrassed to share the ups and downs, ins and outs of having Crohn’s with anyone. It’s all here in writing.