Living with Sjögren’s Syndrome: An Analysis of YouTube Vlogs on the Autoimmune Disease

Abstract

ABSTRACT People who experience symptoms of autoimmune diseases often have to struggle for illness recognition. Women experiencing such symptoms face additional challenges as their accounts of pain are frequently treated with skepticism. This study examines experiences of people living with Sjögren’s Syndrome, an autoimmune disease which is primarily diagnosed in women, by conducting an analysis of individual vlogs posted on YouTube using the themes of gender, chronic illness and neoliberal governmentality. Sjögren’s Syndrome is the second most common rheumatic disease after rheumatoid arthritis and affects nearly 4 million people in the United States alone. An analysis of 70 vlogs posted by people living with the disease revealed the challenges faced by them including diagnostic delays and perceived attitudinal biases amongst medical professionals, especially in the context of the gender of the patients. Apart from highlighting the impact of the disease on their gendered roles, the vloggers urged viewers to conduct their own research on the disease and advocate for themselves during interactions with physicians. The study illuminates how dissatisfaction with healthcare services reinforces neoliberal rationalities such as individual advocacy, resilience and self-labor. The findings of the study delineate the role of neoliberal governmentality in making self-management of chronic illnesses such as Sjögren’s Syndrome an internalized ideal for women living with the disease. Additionally, the study provides empirical evidence of the need for addressing the medical and socio-cultural factors that contribute to delays in the diagnosis and management of Sjögren’s Syndrome.