Ina Hallström

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.

The relation between time and gender has been extensively discussed in feminist theory, from Simone de Beauvoir to recent studies of queer temporality and crip time. In this article, I explore gender as “lived time” in relation to a pressing feminist issue: social recognition of the chronic illness endometriosis (endo). Based on my interviews with individuals diagnosed with endo, I argue that lived time can be studied by approaching becoming as a dynamic process or flow of recognition, creating certain temporal patterns in the lifeworld. I propose the concept of “endo time” as a phenomenological conception of the lived time of endo. I identify three temporal patterns that characterize endo time: waiting time (I), cyclical or chronic time (II), and sedimented time (III). The analysis contributes to feminist philosophy by detailing how gender appears as a specific orchestration of time. Because of its connection to feminized pain and menstrual flow on the one hand and social recognition on the other, endo presents an illuminating case for exploring the relation between gender, recognition, and lived time.