The changing landscape of endometriosis activism in Finland: at the crossroads of personalization and digitalization of health

Abstract

This chapter explores how two ongoing societal changes, personalization of medicine and increasing digitalization, are shaping endometriosis activism. The analysis draws on in-depth interviews with members of a gynaecological patient organization as well as endometriosis activists who use social media to advocate for awareness and better treatment in Finland. The chapter shows that digital channels provide outlets for discussing treatment experiences as well as addressing concerns of gender and sexual minorities affected by endometriosis but often sidelined in the medical conceptualization of endometriosis as a gynaecological condition. Digital platforms enable foregrounding differences between endometriosis patients that are highly relevant for the improvement of care but that are not captured by biomedical approaches to personalized medicine. The analysis shows the relevance of patient activism in bringing up concerns about how individualized care is realized and raises questions about what personalization ultimately means in contemporary health care. Furthermore, the chapter traces how patient activists navigate the tensions between the multiplicity of illness experiences that underpins personalization and digitalization and the conceptualization of menstruation-related pain and disorders as binarily gendered in health care.