Hysterics and Heresy: Using Dialogism to Explore the Problematics of Endometriosis Diagnosis

Despite advances in biomedical technology, endometriosis remains a disease that is inefficiently diagnosed and treated. American women often suffer from debilitating symptoms for a decade before being diagnosed. Addressing this deficiency is crucial if women are to live well with endometriosis. Framed by relational dialectics theory 2.0, the current study analyzes women’s experiences of endometriosis diagnoses via online narrative postings. Results reveal two centripetal (dominant) discourses: (a) the discourse of psycho-abnormality, and (b) the discourse of biological normality. Narrators’ invocation of the discourse of psycho-abnormality disqualifies women’s suffering as imagined and “all in their heads,” whereas invocation of the discourse of biological normality naturalizes women’s suffering as “just part of being a woman.” The discourse of psycho-abnormality and the discourse of biological normality, both rooted in patriarchal influences, hinder diagnosis and subsequently treatment and rehabilitation of endometriosis. Encouragingly, a third (though marginalized) discourse emerged: the discourse of reclaiming expertise. Narrators’ invocation of this discourse directly opposes the discourses of psycho-abnormality and biological normality by inciting validation of embodied knowledge in medical encounters and urging patients to enact agency in healthcare settings. This project discusses the interplay of these three discourses, and aims to improve diagnostic efficacy as a result.