Gendering Chronic Illness in Patient Advocacy

Abstract

Investigating the association of gender to medical conditions and its implications for healthcare research and practices has become a notable trend in social scientific literature on medicine and health. While gender biases in medical research are well-documented, less attention has been paid to how patient advocacy groups engage with gendered narratives associated with chronic illnesses. This study examines how Finnish patient organisations advocating for endometriosis, migraine, and fibromyalgia navigate genderedness and engage in gendering – at times reinscribing genderedness for inclusion, at others emphasising it for legitimacy, or distancing from genderedness to avoid stigma. We do this through a thematic analysis of the patient organisations’ websites and social media presence, and interviews with their representatives, using the conceptual framework of haunting. We show that there is no simple way to interpret and mobilise associations between gender and medical conditions, and that their approach to gendering is shaped by considerations of history, strategy, and aims of advocacy.