The makings of a modern epidemic: Endometriosis, gender, and politics

Kate Seear’s The Makings of a Modern Epidemic offers readers an in-depth critical examination of a modern illness from the perspective of the medical profession and the community of women who suffer its symptoms. She combines interview data alongside analysis of self-help and historical medical literature to tell the story of this contested illness and the dynamics of gender and discourse that it reveals. Estimated to affect 5–15% of all women, endometriosis involves the migration of menses tissue outside of the uterus causing severe cramping, bleeding and pain. Women may spend years suffering before receiving a diagnosis and treatment. More than just a case study of this gendered modern ailment, Seear provides an inspiring synthesis of constructionist theorising to reveal its foundational binaries. She examines the constructionist paradigm in contrast to realist and objectivist frames and explores the conceptual dimensions of risk, agency and the performative nature of disease. Methodologically, the analysis takes the form of a ‘pastiche’ of seemingly disconnected data points, unranked by hierarchy or narrative connection. While her analysis does not provide, nor claims to provide, a comprehensive overview of endometriosis, the portrait of the disease and the discourses surrounding its aetiology and symptomology cover a variety of sources making for a compelling analysis. Physicians have struggled to understand the underlying mechanisms that lead to endometriosis. In the absence of clear facts and medical certainty, practitioners and patients alike turn to assumptions about women and the body. Historically, the disease has been thought to strike primarily ‘career women’ who delay having children, thus allowing menstrual tissue to build up as they experience a greater number of cycles throughout their lives. This classic victim-blaming approach leads to some disturbing ‘interventions’ – namely, the prescription of pregnancy as the solution to women’s suffering regardless of economic or fertility status. Beyond the discourse of the medical literature and the stories of women themselves, Seear turns to the surprisingly large self-help literature that has grown around the issue of endometriosis. Here, like her treatment of women’s narratives, she questions the notion of empowerment. It is difficult to view the medical community’s failure to diagnose or effectively treat the illness as a catalyst for empowering women. Self-help literature ‘performs’ endometriosis and the women who suffer it by portraying the disease as stable and surmountable. Women are individually advised to avoid the seemingly limitless substances in their environment that may contain harmful chemicals. Calls for political action that might compel government regulation of these numerous toxins are scant. But medical experts and practitioners are not the only source of gendered discourse. Through technologies of the self, patients themselves call upon conflations of femininity with emotional instability and biological abnormality that gridlock them into the unfortunate position of renouncing the self as either delusional or incurable. Regardless of their resolve, the women in Seear’s sample are forced to grapple with the always-lurking Global Public Health, 2015 Vol. 10, No. 2, 273–274, http://dx.doi.org/10.1080/17441692.2014.986159