Endometriosis and Epistemic Violence: A Look at the Construction of the Pathology By Exploring Medical, Patients’ and Patients-Activists’ Discourses

According to the most recent clinical definitions, endometriosis is a chronic inflammatory disease characterized by the presence of endometrial-like tissue outside the uterine cavity. It is estimated that approximately 10% of AFAB (assigned female at birth) people worldwide of reproductive age are affected by the patology.

The socio-anthropological literature has highlighted how the highly gendered construction of the disease can contribute to the diagnostic delay. Indeed, several authors pointed out how delegitimization and minimization of symptoms are more often suffered by people socially perceived as women, due to the androcentric and paternalistic conceptions that still permeate the health care system.

Recently, the commitment of online and offline activism has meant that knowledge about these diseases is reaching a wider audience and has gained public recognition in some countries.

The paper presents the first results of a research project conducted in North-Western Italy using different qualitative tools: participant observation, semi-structured interviews with patients, patients-activists and health practitioners, and (social) media analysis.

Our analysis shows how transfeminist mobilizations and online outreach have contributed to greater dissemination of information about the condition. However, access to diagnosis and treatment remains strongly influenced by individual social, economic, and cultural capital. In particular, it is access to feminist networks and the ability to connect with patient-experts that has a positive influence on awareness about the condition.

In a framework where remains a lack of knowledge about the condition among primary care physicians and gynaecologists who do not specialize in the treatment of endometriosis, inequalities are strongly influenced by processes of genderization, racialization, and individualization of responsibilities for access to health care. The intersectional approach highlights how different patient characteristics (e.g., sex, gender identity, class, race, educational level) and their intertwining affect the interaction with health professionals by hesitating in different levels of epistemic violence.