“Activism Was a Survival Strategy”: Chronic Illness and the Power of Endometriosis Activism as Work

Abstract

This article is part of the special issue “Laboring from Ex-Centric Sites: Disability, Chronicity and Work”, Anthropology of Work Review 46(1), July 2025, edited by Giorgio Brocco and Stefanie Mauksch. In this article, we take the example of endometriosis activism to explore the interrelationship between chronic illness, activism, and work. Endometriosis is a life-limiting condition affecting at least one in ten girls and women, and unmeasured numbers of transgender and gender-diverse people. While most studies emphasize the disease's negative effects on people's paid work, we extend the concept of work to include the unpaid labor of activism. Moreover, building on critical analyses of care work and activism, we also illuminate the complex link between endometriosis and activism, highlighting both activism's empowering potential and its connection to paid employment. The framing of activism as work also reveals the condition's susceptibility to capitalist performance pressures which may negatively impact health and well-being, highlighting the broader interplay between activism, political structures, and labor. This article thus makes two key contributions: first, it theorizes activism as an invisible and unpaid form of labor that plays a vital role in shaping the lived experiences, narratives, and public understanding of endometriosis and chronic illness more broadly. Second, it deepens our understanding of the multifaceted implications of endometriosis in relation to labor—both paid and unpaid—thereby situating the condition within broader sociopolitical and economic structures.