“You don’t look disabled” 

Mark’s Story

Mark has lived with Ulcerative Colitis for 29 years and commuting to work every day is a real struggle because of urgency to poo and chronic fatigue. “Where is the nearest toilet? Will I get a seat?” These questions are constant worries. On top of this, Mark faces discrimination from people who don’t realise ‘not every disability is visible’.

A rush hour commute into central London can be a nasty experience for me because of my chronic fatigue and urgency to poo.

It’s usually impossible for me to get a seat unless I travel in after 9am.  I typically use the toilet 3 to 4 times before I leave home, this means I’m already fatigued so standing for a 25min journey is physically draining for me.  I don’t ask for a seat, because to look at me I’m a young man with no visible disability.  Previously I’ve been asked to give up my seat by other commuters, typically people are fighting the corner of someone elderly or pregnant – I don’t challenge them as I know I’ll just get a mouthful of abuse.  It makes me feel small and worthless because today’s society judges you on how you look. And when you don’t look disabled people think you’re not worthy of a seat.

One of the stations on my route only has an accessible toilet and I have been told by station staff, “You shouldn’t be using it, you’re not disabled”.  When I tell them I have an invisible condition and that not every disability is visible, they just shrug their shoulders.  Members of the public have also said things or looked at me in disgust for using an accessible toilet. All I want is some understanding of what living with Crohn’s or Colitis is like!

It sounds cliché but don’t judge a book by its cover. You don’t know the story of the person using an accessibility toilet or sitting in an accessible seat, nor are you entitled to know. They’ll be using them for a good reason and will appreciate your understanding!

Crohn’s & Colitis UK knows that not every disability is visible – “we’re campaigning to change public perceptions of disabilities by raising awareness about Crohn’s Disease and Ulcerative Colitis and changing accessible toilet signage. It’s easy to make a difference, you can get involved today.”