Accepted Paper:

"I can't describe what I'm going through": role and boundaries of research, arts, therapy  


Nicole Brown (UCL Institute of Education)

Paper short abstract:

I explore the boundaries of research, therapy and arts and the role of the material and metaphorical in making sense of experiences with fibromyalgia. I reflect on the therapeutic quality of the approach as it fosters recovery and on how data may be impacted by the new knowledge that is created.

Paper long abstract:

In my presentation, I explore the boundaries of research, therapy and arts and the role of a material, metaphorical approach in supporting participants to make sense of their experiences of identity under the influence of fibromyalgia. Fibromyalgia is a complex condition characterised by wide-spread pain, cognitive dysfunctions, sleep problems and psychological disorders (White and Harth, 2001). In my research, participants complete an identity box, which requires them to find objects representing their responses to questions such as "Who are you?", "What affects you?" or "How do others see you?". Thus, participants reduce their experiences to an essence, represent that essence as a metaphor and finally elaborate upon that in subsequent conversations.

Participants describe how they remain active and creative, and how the identity boxes have led to them reflect more deeply on their experiences than they would usually in diary entries. Participants also highlight that it is not necessarily the creative process that helps them make sense of their experiences, but the reflective and reflexive approach. They state that the reflective journey helps them gain a more positive view of their identities, which helps them reconcile their pre-illness selves with their post-diagnosis selves or accept their condition. As such participants acknowledge the therapeutic quality of my approach as it fosters a coming to terms and recovery. I conclude with a reflection on how the data may be impacted by the fact that new knowledge in this process of recovery and self-finding is created.

Panel P020
Making, Materials and Recovery: Perspectives "from the inside"