Endo Episteme

The process of gaining recognition and treatment for a medical condition involves multiple stages where knowledge is negotiated along the way. This is particularly true for endometriosis, or “endo,” a chronic condition affecting one in ten menstruating individuals. In this article, I present a phenomenology of key epistemic practices involved in the journey toward knowledge about endo, based on interviews with fifteen individuals diagnosed with endometriosis in Sweden. These lived practices constitute what I call endo episteme and demonstrate how knowledge is gained, negotiated, or lost. Drawing on Miranda Fricker’s notion of epistemic injustice and Axel Honneth’s theory of recognition, I conceptualize the following practices: comparing-with, expressive uptake, a pedagogy of pain, the struggle for diagnosis, an epistemology of ignorance, and epistemic activism. Together, these practices shape the crucial processes of becoming a knower, becoming a patient, and becoming knowledge in relation to endo. This work contributes to feminist and social philosophy by enriching the frameworks provided by Fricker and Honneth, and it introduces novel concepts to deepen our understanding of the experiences of endo patients. The analysis of endo episteme emphasizes the central role of epistemic practices for the misrecognition of a gendered illness affecting millions worldwide.