Having cystic fibrosis (CF) is time consuming, exhausting and life limiting. Unfortunately, not everyone knows what CF is, and because people with CF don’t always look “ill”, having the condition can make you feel a bit invisible.
That’s why, for Invisible Disabilities Week, we spoke to our Youth Advisory Group (YAG), to find out what the most annoying things are about having an invisible condition like cystic fibrosis. Take a look at their top six...
1. Please give up your seat
There's nothing worse than people judging you or even having a go at you for using disabled parking or tube seating because you “don’t look ill”.
2. You might have heard this one before...
Feeling like you’ve got to have an explanation for CF up your sleeve at all times. Having to explain your condition to people all the time can get really boring.
3. "But you look so well!"
Hearing someone say: “but you look so well”. I might look well, but that doesn’t mean that every day isn’t a struggle. I have to do a lot to look this good!
4. It's enough to make you lose your appetite
When GPs, or even family and friends, ask daft questions or make inappropriate remarks like calling you “skinny minnie” when you’ve got a feeding tube up your nose...
5. "That's like asthma, right?"
Wrong! People with CF can have asthma as well, but they're not the same thing. Cystic fibrosis is a condition that clogs my lungs with sticky mucus and makes it hard for me to breathe, causing infections that are really difficult to shift. But it also affects my digestive system, my pancreas and my liver.
6. Poo, glorious poo
“How do you eat so much and not get fat?”
“’cause I’m gonna poop it out again soon!”
Who are YAG?
As well as shouting loud to promote awareness of CF, the YAG team help to influence the work of the Trust, ensuring that the voices of young people with CF are heard. They also meet in monthly online hangouts, receive social media training and have worked on developing an award-winning app.
Sound exciting? Find out more about YAG, contact Holly-Rae Smith, the Trust’s Youth Empowerment Officer, to get involved, or meet the team!