People may not understand how invisible illnesses disrupt our everyday lives - precisely because they’re hidden. Danny uses poetry to describe his personal struggle with ulcerative colitis.


People don't get it,
They don't understand.
Invisible illness, we go hand in hand.

From the outside looking in. Where do I begin? Fear of not wanting to go out because you are terrified your colitis will flare up at any given moment. The fear of not finding a toilet quick enough... And then it's too late. The refusal of being allowed to use workplace toilets is soul destroying. People look at you and think you look fine to me. 

We are not fine, we are suffering in silence; no one seems to listen, does anyone really care? I'm alright Jack, as long as it’s not them they don't care.

Numerous hospital trips, endoscopy, sigmoidoscopy, tablet, after tablet, try this, try that, with no end in sight you are sent away with the same things. Then the fatigue kicks in. The tiredness, the weakness. And still no one can see this... "you look fine, late night was it?" "Yes it was, up and down in the night. Constant toilet trips, lack of sleep" people still don't get it.

You feel like giving up because it will not go away. A lifetime of illness that's what they say. So everyone else with ulcerative colitis or crohn's, you are not the only ones suffering in silence. You are not alone. We all suffer differently. We take each day as it comes, as we don't know what's coming next, or what's around the corner. But we do know that you cannot see within and do not know what we are going through.... We... SUFFER IN SILENCE.... 

 

Do you have a Hidden Story you'd like to share with us?  

We'd like to know how your invisible condition has affected your day-to-day life, and hear of the kind gestures or dismissals you've experienced along the way. Or can you offer a perspective as a friend, family member or carer? Or as someone who now feels differently after learning about another person's experience with an invisible illness? 

The stories we collect will form part of our Hidden Stories project, which is about exploring – as a community – the way we behave towards people with conditions and illnesses which can't be seen. Only by sharing our experiences can we begin to understand them. 

Get in touch with Rachel (rachel@rootexperience.org) and we'll help you to (sensitively) share your story and find support if you need it. 

Join our support group on Facebook

We've started an online Hidden Stories community for those living with or affected by invisible conditions and disabilities. As a closed Facebook group, it’s a safe place for sharing stories, asking questions, and for mutual support and solidarity – amongst  people who really know how you feel day to day.

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