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“We’re all in the same boat”: finding confidence through story-telling

Every young person with cystic fibrosis (CF) has a story to tell, but how can we help them tell those stories together and overcome the barrier of cross-infection? Bahar, Digital Youth Outreach Officer at the Cystic Fibrosis Trust, takes a look at how an innovative story-telling workshop, run by On Our Radar, helped a group of young people living with CF found friendship, understanding and confidence through storytelling.

Building Brighter Futures is a digital youth programme we offer, sponsored by Children in Need. We run digital skill-building and creative workshops for groups of young people with CF, many of whom have never spoken to others like themselves before due to the risks of cross-infection. As one individual noted: “…because of the risk of cross-infection it can be hard to talk to people who really understand without having people who constantly make assumptions about you such as ‘you’re not ill you look fine’ or ‘you seemed fine yesterday’”.

We work with experts to deliver these workshops, and not only do young people gain confidence and mastery of a particular skill, but because of advances in digital technologies and social media, we are able bring them together safely in an online space. We believe through group work and building mutual support networks, young people with CF can thrive from a digital learning environment. 

This summer, we had an exciting opportunity to work with On Our Radar, a London-based communications agency for marginalised communities. We approached them because of their impressive record of using creative digital solutions and storytelling to bring isolated groups together. We wanted their expertise to support our young community in a six-week storytelling workshop. 

Picture of a young South Asian woman with long dark hair wearing glasses. Her quote reads: 'One I was coughing and couldn't stop and this all happened in class. My classmates never said anything related to my problems. They were nice. Some inquisitive, but it was alright.'

Paul Myles from On Our Radar said: “We’re motivated by the belief that it is those with lived experience that have the expertise to inform progress and facilitate real and lasting change. Therefore, when the Cystic Fibrosis Trust asked us if we could work together to support a group of five young people to talk about the daily realities of living with CF - it was a perfect match!” 


However, On Our Radar, who had previously used innovative comms to bring people together into the same physical space, were now faced with the new challenge of young storytellers who can never meet in person due to their condition.  


When asked how they responded to this challenge, Paul said: “We designed a bespoke, six-week ‘story sprint’ with the young reporters which comprised of weekly two-hour virtual meetings and regular messaging via a ‘chat app’. This digital approach, despite a few technical challenges along the way, gave the young people the ability to connect using tools that they were already familiar with and even offered one young participant from India the opportunity to engage with the project. The group soon bridged lasting connections with each other and began to build a supportive community of understanding, companionship and creativity.”


We wanted this project to be led by the young people themselves. On Our Radar used a variety of storytelling devices, such as ‘story-sprints’ and ‘deep dives’ to help the group generate themes they wanted to address in their stories, from time pressures and the burden of treatment to stigma they face at school and the importance of supportive friends and teachers.

Often participants found that others had very similar experiences to themselves. One member said: “I always have to make a list of all my meds and everything before going on a trip so I don't forget anything” to which two others in the group exclaimed: “Same here!”. 


Paul said: “Each week, the young reporters would be asked to send a short report, film or voice note on one of the themes into the group chat which they would then discuss at the next session. This produced a broad range of exciting and imaginative multimedia stories and proved the value and diversity of storytelling that occurs when you give people the creative freedom to tell their own story in their own way.” 


What was evident, was the way in which this storytelling project brought a group of young people together who experienced much of their CF in isolation from others with the condition. In this safe, digital environment, they were able to demonstrate to one another the struggles and successes that they faced when met with every day challenges.   


In the words of one of the participants: “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."


Find out what other Building Brighter Futures workshops and events are coming up in the new year, including Games Nights and a coding workshop!

Find out more

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