Health Activism and Sexual Politics

Lisa Lindén, Emily Jay Nicholls, Josefin Persdotter
2025 · doi:10.4324/9781003319818 · W7110992168
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This chapter analyzes how personalization and digitalization shape endometriosis activism in Finland, revealing how digital platforms enable discussion of diverse patient experiences and minority concerns often overlooked by biomedical approaches.

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This edited volume explores the intersection of health activism and sexual politics through feminist research, creative practice, and scholarly inquiry. The collection features interdisciplinary contributions from various global regions that challenge hegemonic biomedical knowledge by valuing lived experiences of illness, pain, and marginalization. One specific chapter examines the evolving landscape of endometriosis activism in Finland, highlighting how digitalization and personalization impact patient mobilization. Relevance to endometriosis: listed as one indication for GnRH antagonists, though the paper's main focus is uterine fibroids.

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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.
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Abstract

Health Activism and Sexual Politics: Feminist Engagements with Health, Illness and the Body explores the intersection of health activism and sexual politics through both traditional research chapters and innovative contributions on creative and scholarly practice as activism. The book showcases the analytical power of feminist research at the intersection of sexuality, health, and activism. As digital technologies create new possibilities and challenges for politics, sex, and health interventions, the contributors demonstrate diverse ways to engage meaningfully with activism. Spanning Latin America, Southern Africa, Northern Europe, the UK, and North America, the collection offers alternative epistemologies to hegemonic biomedical knowledge about illness, pleasure, pain, and marginalization. The interdisciplinary approach incorporates feminist technoscience studies alongside perspectives from the medical humanities, sexuality studies, gender studies, design studies, and drama studies. Each chapter challenges inequities and reimagines possibilities for health and well-being through collective action, creative engagement, and scholarly inquiry. Together, they insist on recognizing the multiplicity of experiences around illness and desire, making knowledge that values lived experiences as communicable, worthy of care, and deserving of recognition. This book will appeal to scholars, students, activists, and artists interested in health, sexual practice, gender, activism, and public engagement. The Open Access version of this book, available at https://www.taylorfrancis.com, has been made available under a Creative Commons Attribution-Non Commercial-No Derivatives (CC BY-NC-ND) 4.0 license. TABLE OF CONTENTS part 1|23 pages

Introduction

part 2|64 pages Health activism and public mobilization chapter 2|18 pages The changing landscape of endometriosis activism in Finland: at the crossroads of personalization and digitalization of health chapter 3|18 pages Risks, pleasures, and desires: attending to the sexual politics of gynaecological cancer patient activism chapter 4|26 pages Abya Yala bleeds, exists, and resists: introducing the Latin American social movement for menstrual dignity part 3|66 pages Creative practice and the arts as health activism chapter 5|21 pages Hysterectomy: BedRock – emplacing and making visible experiences of surgery for hysterectomy and surgical menopause through creative practice chapter 6|26 pages Feminist performance-making: radically kind theatre-making redressing the act of being vulnerabilized part 4|55 pages Feminist scholarship as health activism

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