People tend to 'use' their illness for many things. For me, in the first (literal) flush of my illness I was so intensely and unrelentingly sick that I couldn't begin to see beyond just trying to get better. I admit that sounds quite selfish now looking back, but it was all so brand new to me, and terrifying. I had my family, and friends, and just being able to stand upright to think about.
Shortly after my surgery I started the blog and dipped my toe in social networking. It's been amazing. The main reason for that is because it's given me something positive, out of what began as a very negative part of my life.
Don't get me wrong here, and I don't know why I feel the need to reiterate this every time, but i'd still be 99% happier without an incurable illness, it's just that now I have it I need to ensure I make the best of it.
(The other 1% is for another kitten obviously).
Support for those with chronic illnesses online, certainly in the last few years anyway, seems to have spread like wildfire.
When I first researched the condition I found any aspect of it on the internet to be negative; forums professing you will surely die and how AWFUL your future will be if you manage to grasp your bony hand around life.
Not really what I was looking for.
The hearts and flowers and unlimited loo roll aspect wasn't there in the slightest. It made me fearful to open up and talk about myself.
Mainly because (are you INSANE? THATS TERRIFYING?!) and because there can be such unparalleled jealousy and competitiveness in the medical-world.
If you've ever had a stint in hospital you will know that there's always, ALWAYS, one patient who is 'sicker' than you. Trying to advise that person you are on deaths door will fall on (probably profoundly) deaf ears. It can be irritating and infuriating and put you off your re-heated ham sandwich.
It's also completely unnecessary. Why do people feel the need to compete over who is worse off than the other? That sentence itself confirms how utterly ludicrous it is. If people are suffering then let them suffer without fear they are going to be patronised or told how to behave. You're pain is not the same as Mrs Smith in Bed 5. So don't tell her how to feel. And don't tell her she shouldn't be complaining just because you aren't.
Of course this is by no means a one-fix-suits-all scenario: on the other side of the coin there are those who love to wallow in the abject misery of their lives and constantly gripe about the diseased hand the big guy has dealt them. Those people are unhappy and CHOOSE to be unhappy. I can't get with that. Leave them to it if you can't help and don't let then pull you into it.
I've tried to help those with the disease in anyway I can. Through my blog and Twitter/Facebook and on the phone/web chats/forums.
I've found it difficult at times as I forget that illness or not, people are still people. They don't become angelic and almost godlike because they are suffering. It's not the 1990's and we are NOT angels.
What I mean by this, is that Crohn's or no Crohn's, people can still be mean and rude and presumptuous. It took me an almost embarrassingly long time to realise that those people are not people I want to know at all: so why should I make space for that just because we share an illness in common? It is nonsensical.
I like to think that people are still essentially good. I was brought up to believe that the Big Good Guy (with the white beard who sits on clouds) always beats the Big Bad Guy (with the red skin and goatee and tail) so I think in the grand scheme of things we'll all be ok in the end.
(Just to avoid confusion I'm obviously talking about Jim and Bill from my old neighbourhood there by the way).
On the whole the good far outweighs the bad in the world of Crohn's support- or at least once you do your research and don't just jump on the first bandwagon. It might lead you down a road you can come back from.
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