Breathe Creative Project

Behçet’s UK members from across the UK were invited to participate in a creative project with Breathe Creative, an arts-based company from Wales. Breathe Creative use art, whether that be drawing, painting, craft, creative writing, music, drama, or dance, to positively impact physical and mental health and wellbeing.

As a charity, we approached Breathe Creative to work with members to create an animated film on the lived experience of Behçet’s Disease as a way of raising awareness on both the disease and the patient perspective. Creative sessions would take place on Zoom, which would allow any members across the UK to join.

Twenty-four Behçet’s UK members registered an interest in this project, however, we had initially stated that only twelve places were available. Katja Stiller, Therapeutic Arts Facilitator, was keen for all those who registered an interest to be involved in the project, understanding that this may be the creative outlet they needed to express their lived experience of Behçet’s. The project was therefore adapted to accommodate the interest. Two groups were created, with each group allocated three weeks to produce creative work, using art (drawing, painting, and writing) as a way of expressing their individual experience. All participants were invited to be part of an ‘editorial’ group, with a particular focus on the script, ideas for the animation and the message of the film, and further creative work.

The sessions also focused on the emotional wellbeing of the participants, using Mindfulness and Emotional Freedom Therapy to create a safe and relaxing space. This enabled the safe sharing of experiences, with drawing, painting, writing, and poetry becoming the much-needed outlet for expressing those difficult situations, feelings, and responses to being diagnosed and living with Behçet’s.

Once both groups had completed their three-week process, Jane Hubbard, BAFTA award winning animator, joined the sessions to gain ideas for the animation and form a script. Based on recordings from sessions, artwork produced, and creative writing a script that reflected the group’s lived experience was produced. This took some time to get right. There is a darkness to Behçet’s that needs to be represented, however, those living with the disease were very keen to also reflect the hope, resilience and strength that is within them all. Behçet’s is a distressing, painful, and unpredictable disease which often prevents life from being fully lived, however, it is still lived and participants wanted to give hope to those newly diagnosed that life may need adjusting but life does not end at the diagnosis. There needed to be a balance between the dark and the light. Adapting and adjusting to meet the needs of their disease became an important message and the group wanted to show what can be achieved despite having Behçet’s Disease.

There were challenges to overcome. Participants weren’t always well enough to attend all of the sessions planned, or they would have to leave the session part-way through to take care of themselves if they were particularly unwell. The project also lacked a male voice and despite attempts to engage some men in the project, we were unsuccessful in recruiting them! Luckily, we were able to use some writing a male member had done to raise awareness which helped to give the script the right balance. We were also under-represented culturally, with the majority of participants being white British. However, we did have representation from all Nations, which is such a positive of virtual sessions.

The end result is a raw, vulnerable, and emotive film which reflects the lived experience of Behçet’s Disease, with the artwork and style of Sarah Lin being included and represented.

This was officially launched at the 2022 Conference & AGM in Stevenage.

More artwork and creative writing from the project can be seen further down the page.