Grant: Project Grant

Endometriosis affects ~10% of reproductive-age women and an unknown number of gender-diverse people. Psychosocial effects of debilitating symptoms such as chronic pelvic pain and infertility are alarmingly common and are catalyzed and sustained by shame and stigma. Our piloting of participatory, arts-based digital storytelling (DST) with people with endometriosis suggests that DST facilitates emotional healing and connection with others, and empowers people to share their digital stories, potentially influencing social change. Digital stories can also make visible complex and marginalizing illness experiences grounded in the realities of those afflicted, of relevance, considering gendered conceptualizations and representations of endometriosis and pain. The goal of this research is to generate and begin to test a robust model of online DST as a therapeutic intervention, source of authentic experiential evidence, and knowledge translation tool for endometriosis. This will involve 1) delivering online DST workshops to people with endometriosis and qualitatively describing how workshop participation influences psychosocial health, 2) collecting psychosocial measures pre- and post-DST workshops regards participants' outcomes, 3) analyzing participants' digital stories to illuminate the gendered dimensions of endometriosis experiences., and 4) hosting hybrid Film Festival events and describing the connection between viewing digital stories and audience member attitudes. Our ultimate objective is to lay the foundation for further work that eases the profound psychosocial burden of endometriosis.