Inside OCD: Perspectives on the Value of Storytelling with Individuals with OCD and Family Members

Abstract

The Center for Arts in Medicine at the University of Florida (UF) partnered with the UF Center for OCD, Anxiety, and Related Disorders to develop a storytelling program for individuals with obsessive compulsive disorder (OCD) and their families. Over ten weeks, participants shared stories regarding their experiences with OCD and engaged in theater and storytelling exercises. In collaboration with each other and the facilitators, participants workshopped and transformed their stories into a cohesive theatrical performance. Participants performed in front of a live audience and engaged in a post-show discussion with the audience, which focused on the diagnosis of OCD, stigma regarding the illness, and the benefits of the program. Program members participated in a post-program focus group and completed a qualitative and quantitative online survey. Participants reported improved understanding of their OCD, more acceptance from family and friends, less shame and guilt related to their OCD, and more confidence about sharing their OCD stories. Although the program was not designed to be therapeutic, participants also reported therapeutic value. Preliminary findings of this study suggest storytelling programs can lead to a reduction in both self-stigma and community stigma; improvement of understanding of the lived experience of OCD by families, loved ones, and clinicians; and facilitation of interpersonal connections.