When I was first diagnosed with Crohn's Disease, the doctors and nurses fired all the usual 'support' options at me. Websites where I could gather more information on my condition, support groups where fellow 'crohnies' and I could sit and share stories of defunct bowels till the cows came home, phone numbers of a special Crohn's 'expert' I could call at anytime, endless trees worth of information leaflets and booklets outlining all the in's and (more specifically) out's of my disease.
All of this I instantly, and politely declined. I was not interested in talking to people who had the same horrible problems I had. It was bad enough I had to deal with this happening to my own body without having to hear about other peoples issues. Heaven forbid!
The image I had of these so called 'support groups' was a bunch of ill looking people, probably all over 70, moaning about their visits to the toilet and whining that they are feeling just awful, like, ALL THE TIME :( I also didn't like the idea of researching my disease anymore than I already had, i'd seen enough bad news to last a lifetime, I didn't want to pile more misery on my own diseased shoulders.
I was confident with my family and friends support i'd cope fine. I certainly did NOT want to associate with any other 'me's'!
What an absolute plum. I soon realised that although my family and co are amazing and listened intently to every last worry and whine I had about my recent diagnosis, there really is no substitute for talking to someone who has/is going through the same thing. Most of the more, shall we say, intimate, details of the disease can be discussed in-depth with fellow sufferers as there is no such thing as subtlety where Crohn's is concerned. Talking to someone with Crohn's cuts out the middle-man, that awkward pre-curser 'we are now about to talk about my backside' or rapid fire vetting of the symptoms to ensure the conversation is socially acceptable.
Fellow 'crohnies' are amazingly open and honest - there really is nothing else for it. They understand exactly what i'm going through because they are going through it too. They can sympathise and offer constructive advice; from experience. It's especially helpful talking to people who have suffered with Crohn's for massive chunks of their lives as they know all there is to know, and even better, are totally un-shockable. It also puts things into perspective and stops me wallowing in my own woes.
The main benefit of Twitter, other social networking sites and support groups where other Crohnies can unite is the feeling you are not alone in dealing with this disease. Perversely it helps to know that there are people just like me dotted all across the globe who feel just as rubbish as me a lot of the time. And although I obviously wish that wasn't the case, while it is, I'll make the most of my global comfort blanket.
Can one of you pass the loo roll please?