‘Facebook Is My Guerrilla’: On Ways in Which Social Networks Co-create Illness Experiences of Persons with Rare/Atypical Symptoms

Abstract

This chapter reports on Simenc’s ethnography conducted in Slovenia from January 2016 till December 2017. The analysis focuses on a woman, ‘Eva’. It concerns her health narrative and the author’s observations of her everyday (invisible) struggles and (visible) articulations on Facebook, in the processes of getting a sense of what her symptoms meant, an accurate medical diagnoses and treatment and support in the medical system. The analysis of the case opens up a window towards a better understanding of the process behind becoming an expert/empowered patient through daily experience of rare disease and the emerging dynamics between lay and professional knowledge.

What is more, the detailed excursion into a specific case tries to make meaningful sense of everyday practices and motivations that shape the emergence of the expert patient today, where social media (in this case Facebook) are seen as an important public arena for patients’ actions and articulations of resistance to established power relations within biomedicine. Eva is one of the loud voices, pioneers and examiners of the different future. She is loudly disrupting established medical authorities, calling for paradigmatic shifts in medical practice and research. She calls for more inclusion of experiential patients’ knowledge into medical practice and research. She is not an isolated case.

The analysis approaches Eva’s narrative within the context of the present Slovenian public health environment and draws on Barth’s (Current Anthropology, 43(1), 1–18, 2002) understanding of knowledge as an embodied, situated and contextual concept. The chapter aims to give a fresh perspective to our understanding of the relational and ontological complexity of contemporary illness experience. Creativity of users/patients mediated through Facebook during the process of illness experience is emphasized.