I’ve had a busy couple of weeks. I’ve turned 30, threw a super fun 80’s party, worked a ridiculous amount of overtime and got a shiny new ball of terror (kitten). There’s been good news and bad news, happiness and sadness. Fun is always a little peppered with glum. It’s not ideal but its life.
But what of those who live solely in the glum every day? I’ve noticed lately that I’ve become a little distant from the Crohn’s ‘community’ – Twitter, Facebook, etc. Not through choice of course, but I’ve noticed I’ve been losing Twitter followers and finding those of my circle with Crohn’s tend not to engage with me unless it’s related to our disease. Now you might think this is to be expected as the reason these people are following me in the first place is due to us having the illness in common; or perhaps because they’ve taken the time to read my blog. However I imagine it would be horrifically mind-numbing if I were to post every tweet and every update about my life with Crohn’s Disease. I personally can’t think of anything worse.
Social networking is an amazing outlet for people living with chronic illness, and specifically those affected with conditions making it almost impossible for them to leave their home. It can be a life line and a wonderful way to develop friendships and build a support network. For those reasons and more I would never bad mouth these methods of support. However I do feel it can often be used negatively which ends up doing more harm than good.
When I was first diagnosed with Crohn’s I scoffed at the very idea of speaking to anyone with the same illness as myself. The mere thought of it seemed abhorrent to me. I’m not entirely sure why this was; I think I was mainly in denial that anything was wrong with me in the first place. It’s a pretty strange feeling to explain to someone who has never experienced such a diagnosis. It was easier for me to attempt to focus purely on getting out of hospital and not really thinking much further beyond that. It was too hard to deal with the idea I wasn’t ever getting better. At least that’s how I felt at the time. Reverse rose-tinted spectacles if you like.
Those who use social networking as a support network or community, (and I would consider myself amongst them) have often vastly different expectations. Many assume simply because someone else has the same condition that it instantly establishes a bond. In my opinion this is not the case. Don’t misconstrue what I mean by this; I am more than happy to help anyone in any way I can; offer advice, a listening ear, a virtual shoulder to cry on, or a giggle if at all possible. But Crohn’s and all its foibles and various difficulties are only a PART of my life. Crohn’s is not, and never will be, all I am.
If that means I am somehow in the wrong for not devoting more of my time to it then so be it – everyone is entitled to their opinion and mine’s is just as valid as the next diseased person. I like to think it’s possible to dip in and out of a community without being reprimanded or frowned upon for such an activity. I don’t think it’s particularly ‘healthy’ for people struggling with health issues to spend all day every day talking, tweeting and posting about their woes. I know this because I’ve done it. Many times! I’ve been lonely in hospital and bored in bed with a sick bowl, but on the few occasions I’ve told the world and its wife about it, I’ve just felt a wee bit daft and a big bit pitiful. So when I feel that way I tend to stay away from my phone, or write a blog. And often not go on to publish it until I’ve read it back post-drug-fuelled-pain-haze.
I want to know you are well so I can rejoice and be happy for you, I want to know you are struggling so I can try to help; I don’t want to know your every bowel movement. I have more than enough of my own to contend with...