Endo politics: How identity obstructs the recognition of endometriosis

Receiving a diagnosis is a crucial moment in many illness experiences, providing both medical intelligibility and recognition of an individual's need for care. For those living with endometriosis (‘endo’) – a chronic condition in which tissue similar to the uterine lining grows outside the uterus – this process is often prolonged and challenging. Symptoms are frequently dismissed or normalised, leading to significant diagnostic delays. In this article, drawing on interviews with 15 individuals diagnosed with endometriosis in Sweden, I describe and analyse how their quest for diagnosis and treatment manifests as a ‘struggle for recognition’, which I term endo politics . This perspective raises important questions about the role of identity in such struggles. Since endometriosis is a gendered condition and a feminist concern, does this mean that identity – and gender in particular – constitutes the object for which interviewees seek recognition, as notions such as identity politics might suggest? The question resonates with longstanding debates on identity and recognition within feminist theory, notably a recent exchange between Judith Butler and Axel Honneth. Engaging with this theoretical debate alongside the empirical accounts, the article argues that identity is not the primary object of recognition in endo politics. Rather, identity functions as a barrier, obstructing recognition of patients’ rights and needs, while simultaneously serving as a basis for collective organisation. This dynamic unfolds across three key moments of political mobilisation: developing a fighting spirit, becoming a ‘we’ and struggling to be included. Together, these moments reveal how identity both complicates and structures the struggle for recognition – and how endo politics illuminates broader feminist concerns about the relationship between embodiment, social identity and recognition.