Invisible Illness: our CF story

A digital storytelling collective connecting young people with Cystic Fibrosis

“I found it interesting hearing about other people’s stories that I could relate to – so many things have been said which I feel the exact same about and it was so nice to talk to people who were experiencing the same things as I’ve never been able to do that before.” 

Youth participant 


People with Cystic Fibrosis can never meet due to the risk of cross-infection. We designed and delivered a six-week online storytelling workshop to support a group of young people living with Cystic Fibrosis to find friendship, understanding and confidence through shared digital stories. What emerged was a powerful set of stories about stigma at school, the toil of their daily routine, the stress of hospitalisation and the importance of good friends who can help them stay on track.


We designed a bespoke, six-week ‘story sprint’ with the young reporters which was comprised of weekly two-hour virtual meetings and regular messaging via a chat app. This digital approach gave the young people the ability to connect using tools that they were already familiar with and offered one young participant from India the opportunity to engage with a group of peers in the UK. 

We used a methodology called ‘Crazy 8’ where participants were given eight minutes to come up with eight ideas about how Cystic Fibrosis affected their everyday lives. We discussed these themes and grouped them into eight main categories. Each workshop was used to do a deep dive into one of these themes before designing a social media campaign as the final output. 


At the end of the project, the group were able to come together to process the news that three UK-licensed cystic fibrosis therapies would be made available via the NHS. After years of campaigning, this was a critical announcement for the Cystic Fibrosis community. The group have since formed lasting connections with each other based on understanding, companionship and creativity.

Read more about the project here.    


Cystic Fibrosis Trust