Talking about… invisible illness

Because they’re ‘invisible diseases’, there are lots of misconceptions around Crohn’s and Colitis. Just because your condition isn’t visible, it doesn’t mean you can’t talk about it - in many ways it’s more important to, because people can’t see you’re unwell.

Marinaa

It is so important to talk and share our stories to help each other. Because of my fatigue, people thought I was lazy and accused me of making up my symptoms in order to skip school! No- one would believe me until the day when I began to physically look like there was something wrong with me

Marina, living with Crohn's Disease
Ollie 1

Often successful sports people say things along the lines of; ‘no human is limited’. That annoys me. Not everyone has equal opportunity to perform or work at the highest level. As a medical student and someone who manages a condition you gain perspective and empathy for your patients. It’s clear that many people are severely limited in day to day life. However, what’s inspiring is the way they deal with their conditions and the power of support from friends and family.

Ollie, living with Crohn's Disease
Dominique

I always think and say to people, “Yes I look good but it doesn’t mean I’m not suffering”. There is no cure at the present moment and I have to live with this for the rest of my life, and this is how I cope with it....making sure I LOOK AND FEEL GOOD on this journey of my life.

Dominique, living with Crohn's Disease

Talking tips

The things we often think, and too rarely say. Now it’s time to speak up!

You could say...

“Even though I might look well Crohn’s and Colitis cause inflammation, ulcers or other damage to the bowels. They affect the whole body and need a lifetime of treatment – often including surgery.”

“The way I look is not the way I feel – never judge a body by its cover!”

“My condition is like being on a rollercoaster - how i feel can change very suddenly. Some days I’ll feel fine but the next day I could feel awful, and I’ll never know when the next bad day is coming.”

“Because I often look fine on the outside, I worry constantly that people will think I’m lazy if I don’t come out – or that I just don’t like them!”

“Just telling you all this is a massive help. Thank you for listening.”

“I may not look disabled, but I have an invisible condition. People with invisible conditions have just as much right to use the accessible toilet as a person in a wheelchair. Not all disabilities are visible.”

Useful information/links