Uncovering the Hidden Disease - Endometriosis Experiences Through the Documentary Lens

Abstract: This paper explores the use of documentary-style video to support and explore Troubling Design in the field of the gender biased health care system. Women have been neglected within the health care system for centuries and their physical concerns are often not taken seriously by a respective doctor. This research project aims to co-design a film with women suffering from endometriosis. This approach is a way to produce evidence of women’s experiences and contrasts it to the evidence within research and the health care system to explore the connection and potential of documentary film for co-designing practices within the field of Troubling Design. At the same time, the documentary film is a story-telling tool to represent these women's neglected voices and communicate their narratives to the public. It attempts to highlight the advantages of the medium film within complex settings, such as the health care system. Thereby, it translates different ways of knowing about endometriosis to varying stakeholders involved while suggesting possibilities for an improved handling of the disease within the medical encounter. The study represents how qualitative research can inform the creation of a documentary film that reflects specific users’ experiences and solutions for their health care situation while offering the option for a more ethical approach to research at the intersection of filmmaking.