Communicating a Silent Disease: Exploring Health Communication Through Lived Experiences of Endometriosis

Sammanfattning

Endometriosis, a chronic inflammatory disease affecting approximately one in ten individuals born with a uterus, remains widely unknown despite its high prevalence. This thesis conceptualizes endometriosis as a “silent disease” characterized by both physical and social invisibility. Drawing on a social constructivist perspective and Harding’s (2008) feminist standpoint theory, the study examines how media and health communication shape the visibility, recognition, and understanding of endometriosis, while positioning the lived experiences of those affected as a central source of knowledge. The thesis is based on four qualitative focus group discussions with ten participants affected by or suspecting endometriosis. The empirical material was analyzed using Kuckartz’s (2014) methodological framework for qualitative text analysis with a particular emphasis on an inductive approach inspired by the logic of Grounded Theory. The findings suggest that individuals with endometriosis must navigate fragmented landscapes of information and support shaped by insufficient institutional health communication. Formal sources were frequently perceived as limited, outdated, or overly generalized, leading participants to rely heavily on participatory communication, particularly through social media. At the same time, participants described repeated experiences of dismissal within healthcare systems and everyday social interactions, contributing to feelings of self-doubt and internalized stigma. The analysis conceptualizes these dynamics as the Vicious Circle of Silent Suffering, in which attempts to make the condition visible are frequently met with disbelief or stigmatization,thereby reinforcing further invisibility. To address this invisibility, participants emphasized that effective communication surrounding endometriosis requires both participatory, bottom-up communication and institutional, top-down initiatives. While participatory communication can provide experiential knowledge and emotional support, institutional communication is necessary to achieve broader public awareness, legitimacy, and structural support. The thesis further develops the concept of the Triple Burden, arguing that insufficient health communication forces affected individuals to become (1) self-educators, (2) self-advocates, and (3) participatory communicators. Overall,the findings suggest that health communication surrounding silent diseases is most effectivewhen bottom-up and top-down approaches are integrated and grounded in lived experience.