My UC (ulcerative colitis) – what other people don’t see…

People generally find it hard to grasp the impact inflammatory bowel disease (IBD) has on people and that’s a problem in today’s society, because more and more people are diagnosed with Crohn’s disease or ulcerative colitis – and more and more people are writing about it on social media.

To help other people understand what IBD is, there’s an old saying of ‘try to put yourself in someone else’s shoes’, but that’s not exactly a straightforward task, as you can sit in the toilet for an extra 30 minutes, but you cannot mimic the experience of constipation or diarrhoea (although it could be easier than you might think).

Here, we talk about Kim, a 57-year-old woman, who was diagnosed with ulcerative colitis in 2002. Ulcerative colitis, or UC, is one type of IBD, which involves inflammation of the inner lining of the colon and rectum.

“Your whole life is just turned around, but you just accept it, I just accept it, that it’s not going to get any better”

What other people don’t see…

Whereas you may take 20 minutes to get out of bed, brush your teeth, do your ‘business’ and get dressed for work, a person with IBD may need extra time getting ready.

Needless to say, catching up with friends can be a challenging task. If you have 300 Facebook friends, the odds are 1 of them will be living with IBD. And if you like catching up with friends, you should be prepared that one of them will decline your request every so often, because he/she may be physically and mentally tied to a bathroom.

That was just the friend’s side of the story, what about work or academic life? Well, it’s not any better because your peers are not obliged to hear your story or empathise with you. You may be dismayed at someone going to the bathroom 10–20 times through a typical day, but he/she might feel embarrassed and ashamed.

Losing weight and looking slim have always been a trend in today’s society, but people with IBD don’t choose to lose weight – their bowels dictate it! So if you see someone who’s pale and skinny, he/she may actually be suffering from malnutrition due to IBD.

“They say, if you don’t have your health, you don’t have anything, and that is so true.”

What other people DO see…

But people with IBD can live relatively normal and healthy lives. You may not be able to tell apart a person with IBD in remission versus a healthy person.

When Kim was in remission, she was able to enjoy a typical outing, like an everyday photoshoot at the races.

The unseen symptoms of IBD are generally shame, embarrassment and isolation – but you can (actually) change that. Do you know someone like Kim? Be more understanding and try to empathise. Ask them about their condition (if they’re willing to share) and show them you care. Share this blog with your friends and family and allow them to see what others don’t see in UC.