"It's Not Normal to Feel like You're Dying on Your Period...": Understanding the Journey to Diagnosis for Endometriosis

This study aims to understand how medical providers, family, and friends, as outside and inside social networks, affect the journey to diagnosis of endometriosis. Following the tradition of social construction, symbolic interactionism, and feminist theory, I explore how key individuals can shape individuals experiences navigating the healthcare system as they search for a diagnosis. As a stigmatized illness, endometriosis is an excellent site to understand how doctors and loved ones alike may provide support and shape expectations of how illness should present. As a negotiated experience between multiple groups, the diagnosis of endometriosis reveals the interactional process of diagnosis. Past scholars have highlighted the role of medical providers in shaping the diagnosis and treatment of various illnesses. However, endometriosis has not been examined from this perspective. As the illness centers around complaints of pain, I argue that endometriosis offers an opportunity to examine assumptions about pain and how those assumptions can be gendered, racialized, and classed. Exploring how these individuals navigate the journey to diagnosis of a stigmatized illness offers ample opportunity to learn how the journey to diagnosis is not limited to a single person.