Research project Painful Subjects: Endometriosis, Experience and Recognition

In the project, I explore how experiences of illness are shaped by the ways in which the surrounding society, in the form of welfare state, working life, and close relationships, respond to the individual in need of healthcare and support. How does recognition, or misrecognition, affect experiences of illness and health?

Endometriosis is a painful disorder where tissue that covers the inside of the uterus, the endometrium, grows in areas outside it. The main symptoms are chronic pain and infertility. Endometriosis is a common disease, in Sweden one in ten people menstruating are affected. The chronic nature and severity of endometriosis pain often leads to considerable deterioration in quality of life. Even so, there is a significant delay in diagnosis of up to 10 years. It is common that people with endometriosis feel isolated and misunderstood in relation to family and friends as well as colleagues. In Sweden, often claimed to be “best place in the world to be a woman”, there were no national guidelines for diagnosis and management of endometriosis until 2018. There is thus a lot of evidence pointing to the fact that it seems especially difficult to receive sufficient care and support – to receive recognition from others – when it comes to endometriosis. In a Swedish context, qualitative research on endometrios is almost non-existent. Internationally, the connection between recognition and the lived experience of endometriosis has not been explored. Therefore, I aim to fill a research gap both in a Swedish and international context.