“You Scrub Up Well”: CF artists tell their story of how life differs at home and in hospital

Artworks from people with cystic fibrosis are being presented over six weeks at the Hearth Gallery, based around their own experiences of CF – and how their lives and identity at home differ to their lives and identity when they are in hospital.

The artworks convey the inner voice and emotional state as well as the external voice. The aim is for the artworks and exhibition is to express the complex emotional responses to the world around us and the things we experience not only as patients, but as people.

When visitors enter the exhibition, they’ll have a chance to contribute too, by sharing their thoughts and part of themselves and their experiences with hospital services. They will be asked:

Who are you? - in hospital/at home.

The artists involved in the project included Shannon James, Adam McCusker, Stephanie Rutt, Caroline Marie & Kimberly Toogood, and the exhibition was curated by Paul Whittaker and Tamsin Griffiths.

The CF Voices Artists said: “As people living with cystic fibrosis we live two lives, moving between hospital and home so seamlessly, interchanging and fulfilling the roles of patient and person. When we are in hospital we can feel like a subject matter to be studied on paper and in those moments our interactions fail to represent us as the people we are. We feel like lower… paler… duller versions of ourselves. Our personal lives put on pause; our lives governed by timelines not of our making. But outside, in our lives beyond the hospital, where our timelines are our own, we are not low or pale or dull. We are humans with deep complex feelings and full lives, with hopes, dreams and many, many commitments.”

Tamsin and Paul added: “What made this project unique was the opportunity to work with the CF staff as well as the patients, connecting them together as people. As artists with mental health diagnoses, we know how easy it is to view a service through the lens of either a patient or a health professional, falling into playing out a specific ‘role’.

The CF team's goal is to develop a shared decision-making service between patients and staff that recognises each other's expertise as having equal value. We were engaged in the project to amalgamate our creative practice and lived experience to help bridge the gap between the patients and staff by changing the conversation and allowing them to start looking at each other as people. Instead of the question being "What does cystic fibrosis mean to you?" the question we asked both staff and patients, “Who are you?”

The project was a collaboration between the Arts for Health and Wellbeing Team, Cardiff & Vale Health Charity, CAVUHB, Four in Four and the staff at the All Wales Adult Cystic Fibrosis Centre, University Hospital Llandough and Multi-Disciplinary Team.

It was made possible by the HARP Nourish Programme. HARP - Health, Arts, Research, People – has been an innovation and research partnership between Arts Council of Wales, innovation foundation Nesta and Cardiff University’s ‘Y Lab’.

Kimberly, one of the artists, said “I’ve loved being a part of this project, I feel it’s such an important experience that not all get to have with cystic fibrosis. To be able to not only bond due to similar experiences but to be able to collaborate in a form of an artistic and professional way; it’s profound, it’s a unique experience to have had, to have built the exhibition from the start. Our Zoom meetings I believe formed a very important exhibition that all will be able to connect with in some way.”

Find out more about the exhibition

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives -and we won’t stop until everyone can live without limits imposed by CF.