In this week’s Speaker’s Corner, North Perth’s Eva Niedzwiedz talks about her recent ulcerative colitis diagnosis. As a personal trainer, her active lifestyle means she can look fine on the outside but the invisible illness can strike unexpectedly. She says businesses can make going out in public easier for people with Crohn’s and colitis by signing up to the “Can’t Wait Card” register and making their toilets available for emergencies: https://www.crohnsandcolitis.com.au/cant-wait-card
WOULD you be willing to open your (bathroom) door for me?
I’m currently in Sir Charles Gairdner Hospital being treated for the incurable chronic condition ulcerative colitis (one of the irritable bowel diseases).
Being in hospital, along with all my recent experiences living with my new diagnosis, has taught me a lot about a world I previously knew little about, and something tells me that unless you or someone close to you has an IBD, you won’t know a lot about it either.
I wanted to share this world with you, in the hope it might help you make life a little friendlier for someone suffering an IBD.
As it turns out, you can register your business premise as a toilet-friendly location for sufferers of Crohn’s disease and colitis … but there’s currently no businesses in North Perth on the list.
Research and personal experience from now being in the IBD community, has made it clear many sufferers base decisions on where to shop, eat and travel on how confident they feel about access to toilets.
One of the symptoms that comes with IBDs is the inability to “hold on”. Urgency leaves you with 10-30 seconds to find a bathroom, and it’s common to have that occur 10-30 times per day, even waking you up in the middle of the night.
Trust me, having 30 seconds to find a toilet, and needing to go anywhere from 10-30 times a day is scary!
Throw in the unpredictable chronic pain component, and it shouldn’t be surprising to hear that people with Crohn’s and colitis are prone to isolation, depression and anxiety.
Since being diagnosed I’ve spent a lot of my time in hospital talking to people suffering with this disease, and the one thing everyone agrees on is that living with an incurable IBD is hard, scary and truly life-altering.
I’ve spoken to people who are now scared to leave the house after being turned away from using bathrooms, or not being able to locate one when in need.
No-one should have to experience that.
So, thank you for reading this and learning a little bit more about these often stigmatised and hidden diseases.
And to anyone who would be willing to consider registering their business, or talking to their boss about allowing their doors to be open to suffers, please know that whilst it may seem insignificant and possibly slightly inconvenient to a non-sufferer, knowing there is a business that will make their bathroom available in an emergency can really help give a person with an IBD the confidence to go out … and that’s a big thing.