Sweden is often claimed to be ”the best place in the world to be a woman”. But when it comes to a common chronic illness such as endometriosis, national guidelines for diagnosis and treatment of have been missing until 2018. Endometriosis is a painful condition where tissue that lines the inside of the uterus grows in areas outside it and onto other pelvic organs causing inflammation, chronic pain and sometimes infertility. My PhD project explores what it is like to live with endometriosis in Sweden today and how aspects of recognition shape this experience.

International research on endometriosis describes a significant lack of knowledge, acceptance, and support when it comes to endometriosis. Symptoms are normalized or described as the result of somatization. In several studies women have reported adverse effects on their emotional well-being, leaving patients feeling isolated and misunderstood. Several studies report that the patients’ sense of well-being was reduced not only by their symptoms, but by the ways in which others (health professionals, partners, family, friends and colleagues) related to them and their condition. It is thus evident that endometriosis has social, emotional, and relational dimensions that seem to make the illness particularly hard to bear and receive appropriate care and support for – to receive recognition for from others. However, this connection between endometriosis and recognition has not been explored.

Using in-depth semi-structured interviews and drawing on recognition philosophy and feminist phenomenology, my study aims to investigate the role played by recognition for the lived experience of endometriosis. This means analysing recognition as a practice in the multidimensional lifeworld of everyday experience. The multidimensional approach enables me to explore how recognition within different spheres of society – from health care institutions and working life to relationships with family and friends – matters for how life with endometriosis takes shape. Gaining knowledge about how people with endometriosis experience their life situation is crucial for the possibility of promoting and achieving gender equal health care and living conditions. I argue that relating this painful condition to recognition is a key for understanding the processes involved in life with endometriosis.

Ina Hallström is a PhD Student in Gender Studies at Stockholm University. My PhD project “Painful Subject: Endometriosis, Embodiment and Recognition” focuses on lived experience of the chronic illness endometriosis. My research explores connections between embodiment of illness and responses from the surrounding society, from welfare state to close relationships.

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