For many people, using a public toilet is something they rarely think about. But for thousands of people living with Crohn’s disease, ulcerative colitis, painful bladder syndrome and other invisible conditions, every journey begins with one question:
“Where is the nearest toilet?”
In this powerful episode of Disability Matters, John Comiskey speaks with Victoria Spillane, CEO of Crohn’s and Colitis Ireland, and Maria Crowe, campaigner for the No Wait Card, about the daily realities of living with invisible illnesses and why a simple card could restore dignity and independence for thousands across Ireland.
Understanding Inflammatory Bowel Disease
Victoria begins by explaining the difference between inflammatory bowel disease (IBD) and other digestive conditions.
“Inflammatory Bowel Disease is the umbrella term for Crohn’s disease and ulcerative colitis,” she explains.
Crohn’s disease can affect any part of the digestive tract—from the mouth to the back passage—while ulcerative colitis affects the large intestine.
Both are lifelong autoimmune conditions with no cure.
But Victoria is keen to challenge one of the biggest misconceptions.
“People often think it’s just a tummy ache or needing the toilet a little more often. It’s so much more than that.”
She explains that alongside severe abdominal pain, bleeding and urgent toilet needs, many people also experience:
- chronic fatigue
- joint pain
- brain fog
- skin conditions
- mouth ulcers
- hair loss
- eye inflammation
“It’s a systemic disease,” Victoria says. “It affects the whole body.”
A New Normal
Victoria herself has lived with Crohn’s disease for over twenty years.
She describes diagnosis as a grieving process.
“The life you once knew changes completely. You have to learn a new normal.”
While treatment options have improved dramatically—with biologic medications, injections and infusions—finding the right treatment often takes time.
“It’s trial and error,” she explains.
“There is still no cure, but thankfully there are now many more options than there were twenty years ago.”
That progress gives many people hope.
Planning Every Single Journey
One of the most striking parts of the interview is hearing how much planning goes into even the simplest outing.
Travel, work, shopping or meeting friends all revolve around one thing.
Access to toilets.
Victoria explains:
“People are constantly thinking: Where is the next toilet? How long can I travel? Should I stop eating or drinking before I leave?”
Living with IBD means balancing pain, fatigue and anxiety every day.
“It brings another layer of mental exhaustion,” she says.
“You already live with physical fatigue. Planning every journey adds mental fatigue as well.”
Maria’s Story
Maria Crowe lives with Painful Bladder Syndrome, another invisible condition that requires urgent access to toilets.
She shares one heartbreaking experience that inspired her campaign.
While shopping one day, she desperately needed to use a staff toilet.
Despite explaining her condition and showing her medical card, she was refused.
“I had to go outside, open my car doors and urinate in the car park.”
It is a moment she says no one should ever have to experience.
Since beginning the No Wait Card campaign, Maria says hundreds of people have shared similar stories.
Some carry portable toilets.
Others wear continence products just to leave home.
Many simply stay home altogether.
What Is the No Wait Card?
The No Wait Card is a small wallet-sized card that explains a person has a medical condition requiring urgent toilet access.
It simply asks businesses to allow immediate use of staff facilities when public toilets are unavailable.
Maria explains:
“We’re not asking for special treatment.”
“We’re asking for dignity and compassion.”
The campaign aims to introduce a nationally recognised government-backed No Wait Card that businesses across Ireland will understand and accept.
Hidden Disabilities
Because these conditions are invisible, many people experience judgement.
Victoria explains:
“We may look perfectly well on the outside, but inside we’re dealing with severe pain and urgency.”
Maria agrees.
People frequently question why someone who “looks fine” needs urgent access.
Even when businesses cooperate, members of the public sometimes challenge people who move ahead in toilet queues.
“You shouldn’t have to explain your medical history to strangers.”
More Than a Toilet
Both guests stress that this campaign is not simply about toilets.
It is about freedom.
Being able to go to work.
Attend concerts.
Travel.
Visit family.
Shop.
Live independently.
As Victoria says:
“Toilet access is a human right.”
Working Towards Change
The campaign has already gained significant support.
A proposed Equal Access to Toilet Facilities Bill has been introduced, while organisations including Crohn’s and Colitis Ireland, the Irish Cancer Society, Spinal Injuries Ireland, the Continence Foundation of Ireland and Hidden Disabilities Sunflower Ireland continue working together to improve awareness.
Victoria believes progress is happening.
“Baby steps are still steps.”
Maria remains hopeful too.
“We’re positive. We just need the awareness to continue.”
It Takes a Village
One message from the interview stands out.
Support comes from communities, businesses, healthcare professionals, families, government and the public.
Victoria reflects on their recent awareness campaign with a simple phrase:
“It takes a village.”
Because no one should have to choose between leaving home and risking humiliation simply because they cannot access a toilet.
Greater understanding costs nothing—but it can mean everything.
For more information, resources and support, visit crohnscolitis.ie
This interview aired on Disability Matters on 92.5 Phoenix FM, a programme produced by Blanchardstown Centre for Independent Living (BCIL).
Tune in to Disability Matters Thursdays at 4PM | Repeats: Mon 3AM, Tue 3AM & 7AM | Also available on Mixcloud and on bcil.ie/radio.
Compiled by Valentyna Hordiichuk