It’s incredibly difficult to cope day to day with Crohn’s Disease; or with any Inflammatory Bowel Disease, or chronic illness for that matter. The very experience of having to deal with all the rollercoaster-like ups and downs these conditions come with, both mentally and physically, is completely and utterly knackering. Throw having to try and live a normal life outside of your defunct body into the mix and suddenly it’s a feat of human endurance that Rocky Balboa would struggle to take on.
Living with an ‘invisible illness’ can be isolating, and frightening and you may feel like you begin each day under a veil of uncertainty. I know I do! ‘What does that pain in my stomach mean? Have I felt that before? Should I try to eat? Will I be able to go to work today?’ – And all before breakfast! Fear on french- toast! Concern on cornflakes! Worry on Weetabix! You get the general idea. No? OK, Alarm on ham! Yes I admit I’ve blown it, can we move on? Thanks.
The jist of what I’m clumsily trying to convey is that it can be overwhelming and intimidating living with chronic illness. I wholly understand why people with IBD join support groups online; I’m even a member of a few myself. In fact this very website is a great font of knowledge, and place to share experiences. (Brownie points please 😉 This site aside, to me these support forums can often seem like an almost endless stream of negativity. There only seems to be a select few places out there where patients can share and gain awareness and a deeper understanding of their condition without being bogged down in horror stories.
In the end these forums are all at risk of becoming places where competitive suffering is rife. I’ve written many times on this very topic (http://crohnologicalorder.blogspot.co.uk/2013/08/top-trumping.html ) and I find it one that crops up again and again like the proverbial bad egg. Chronic illness should never be a battle of will and wit to establish who’s ‘got it worst’! What an utterly counterproductive way of thinking! It’s a real shame because IBD can be so segregating as it is, so why those with it would want to make their fellow sufferers feel they aren’t ‘ill enough’? It just blows my tiny mind.
We are all in it together. Surely we should be helping one another up rather than beating one another down? Some forums, (and again I don’t allude to this site being one of them..) can feel like select clubs which have certain requirements before you can join; How many surgeries have you had? None?! Sorry your names’ not down… move along! Well I don’t want to be in a select club, I want to feel comfortable and be around other inclusive individuals who have time for everyone. Those people who help and share because they have the generosity and knowledge to do so, and not because they may have found a way to undermine or embarrass someone else. I was always picked last for sports at school (albeit rightfully so, I was atrocious), but I’m damned if I’m going to let the cool Crohn’s kids leave me on the bench again. Neither should any of you!
Written by Kathleen Nicholls from Crohnological Order. Visit her site for more personal stories about her life with Crohn’s Disease.