Wednesday, 7 January 2015

Anus Last Words

The fairly recent trend within the IBD community for flashing the flesh and proclaiming pride at your scars, stomas et al, has left me feeling decidedly conflicted. 

I am of course absolutely thrilled that Crohn's and other forms of IBD are being spoken about more openly; to, and by a wider audience, but I wonder whether the various fads and trends to raise awareness often tend to alienate rather than include. 

Personally I have always been pretty averse to joining groups and forums linked to Crohn's Disease because Ive never felt I've gotten anything from them. That may sound incredibly selfish, but I feel I already dedicate quite a sizeable chunk of my life to this condition. I write very personally about my own experiences, here, and on other sites, I accept emails, comments, posts from others day and night, and I always offer support where I can to sufferers and their families in my own minuscule way. 

I also live with this disease on a daily basis. 

I feel by becoming part of a group or jumping on certain bandwagons I am being led by the hand down a road I perhaps don't want to go down. 
Often I consider that because these various groups are doing 'good work' and 'raising awareness/money' that it must be cruel and even rude of me to decline requests to get involved. If anyone dares to question the validity or aim of these activities they often close ranks and show themselves as cliques only allowing access to a select few. The first rule of IBD club is that you don't talk about IBD club, if you will. 

Well I want to talk about it, and I can because I choose to buck the trend and seek every available resource at my disposal to educate myself on my disease and my future. It's important to get a balanced view. Don't settle for one opinion; it may be based on nothing but conjecture. 

On the flesh-flashing side, I don't want to show you all my scars because they are mine and mine alone. They still scare me a little bit, and remind me daily of the most traumatic and terrifying time in my life. They have gone from something once gruesome and hideous, to a regular part of my outer shell that I am still not convinced I'll ever be 100% comfortable with. That's my problem and no one else's. It doesn't make me any less of a person because I don't want to parade my milky white body all over social media. I'm really being selfless in saving you that vision to be honest. 

I suppose the point of this blog is to remind you that you are all individuals with your own minds, thoughts and feelings on how your disease affects you. You don't have to agree with someone because they've perhaps had the condition a million and one years longer than you. You don't even have to agree with anything I say. What the hell do I know anyway?! 

And therein lies the rub. You probably read my ramblings because you like my daft sense of humour/stumbled upon this blog by accident whilst searching for Anusol/are sleeping with me/or all of the above; but what do I know? All I have is my experience. That's all I aim to share with you, and maybe try to raise a smile in the process. Because I don't for a second wish to pretend life with Crohn's is easy, it's really not, but I do wish to remind you that the help out there really is endless nowadays: it's up to you which door you choose to go through to reach for it. If that means you knock on one and find it's not for you, then of course that's absolutely fine too. 

Your disease, your body, your life.

Oh, and it's spelt A.N.U.S.O.L if you want to continue your search..

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