I’m sick of having to explain what inflammatory bowel disease is.
I’m sick of people confusing or conflating IBD with IBS.
I’m sick of Crohn’s and colitis being misunderstood, poorly understood, or dismissed as diseases that aren’t all that serious.
I’ve spent the last six years trying to change that, through my book, through my blog, through my social media activity, through my participation in advisory groups, and most recently, through my job. I’ve been lucky enough to make wonderful connections with people within the IBD community: bloggers, authors, advocates, nurses, doctors, and researchers. When I speak with the folks who get it, it’s a relief. I know I don’t have to mince words about bloody diarrhea and shitting my pants and passing out because of blood loss and dehydration. But there’s still an audience who don’t understand Crohn’s disease, ulcerative colitis, or inflammatory bowel disease. Sadly this audience is the general public.
It’s not that the majority of people are uncaring or indifferent when it comes to IBD; they merely haven’t heard of it. And if people aren’t being informed within the public forum of the internet, it’s time to educate in the public square of the city.
This Friday, May 19, is World IBD Day, and I’m going to be doing something I schemed up a few years ago. I’ll be in downtown Toronto at Yonge and Dundas from 8 a.m. – 1 p.m. with a toilet.
I’ll be taking that toilet into the middle of the scramble intersection, sitting on it until the light’s about to change, then picking it up and heading back to the street corner. Then repeat. Over and over again.
The point is to show how IBD can leave you in constant need of a bathroom, how tiring it can be to always have to carry the disease with you, and how people who look fine on the outside can in fact be dealing with serious health problems.
I know there’s more to IBD than bathroom trips (read pretty much any other post on this blog and you’ll know that I know). The point of this public display isn’t to associate the disease with the toilet alone, but to initiate a better understanding of IBD and all its facets through questions and conversations.
I’ll have a few other people who are all knowledgable about IBD at the intersection with me to hand out some info cards about Crohn’s and colitis and talk to passers-by.
If you’re in or near Toronto, you’re welcome – nay, encouraged – to stop by and say hi. Maybe take a photo with me and the toilet. Snapchat about it if you’re into that sort of thing. If you can make it out on Friday, I’d be really happy to see you at Yonge and Dundas.
Here’s hoping that people living with IBD, and the unlucky folks who will be diagnosed in the future, won’t have to carry the added burden of explaining to others all they must endure.