This week has been all about raising awareness of what IBD is. I hope you’ve learnt something – I certainly have.
What always amazes me about the IBD community is how open, honest and brave the people who suffer from Crohn’s and Colitis are.
Back when I first became ill Crohn’s Disease and Ulcerative Colitis were relatively unknown, they were what Dr Christian Jessen would have described ‘an embarrassing illness’.
Talking about toilets was frowned upon – unless that is you were a lad who could fart really loudly, and then that was, well, your crowning glory.
Social media has it’s downsides (believe me I know) but for Crohn’s and Colitis it has been such a breath of fresh air.
The illness has gone from something people were frightened of talking about, hidden behind the toilet door, to having this massive community on twitter, Facebook, blogs and youtube full of people giving each other support and advice…and hope.
People proudly share their stories of bravery and their remarkable battles to go on to do amazing things, most of which I could only dream of: the ultra marathons; the world record attempts – even just wearing a bikini with a stoma.
The world is unrecognisable from the one in which the teenage me hid in the school toilets, tucking my feet up the side of the cubicle, and trying to be quiet as I tried to curl up in shame.
Now every single day celebrities, politicians and sport stars, and just incredible every day people are sharing their stories in local and national press….it’s remarkable.
It feels like a week doesn’t go by without IBD being in the tabloids, sometimes for weird ‘junk causes Crohn’s’ claims, but mostly for stories which make me want to punch the air and shout ‘you go girlfriend’ – now that would raise an eyebrow in the Welsh Assembly lobby.
Yes I wish people were still more understanding: especially when they tut at me for using the disabled loo – if my can’t wait card works in Italy why do I sometimes need to pretend to be pregnant to skip the toilet queue when my bag is about to explode (sorry my little rant).
I remember as a teen hiding in the loos, trying to hide my frightening illness, wasting away with no idea what was happening to me – I was so weirded out by what was happening I would rather have died than told anyone.
I wonder what it would be like now for me, in a world of being able to google for help and advice.
But there is no point in looking back in that wishful way, I’m just so happy things are on the way up for IBD: yes, there is still no cure, it is still a horrific illness, but awareness and understanding is growing on fundraiser, stoma bag selfie, and bare tummy at a time.
No one with IBD should ever feel alone again – get online, learn to laugh at those horrible moments with others, cry, smile, giggle, grumble and vent, and just support each other.
No one should be defined by an illness – don’t let it rule you, share your experiences and show it you’re the boss.
The big stoma bucket list 