This empirical study draws on insights from narrative theory to tease out how women with a contested illness narrate their experiences on social media. Based on 13 months of online observations between 2017 and 2019, I analyse how a sample of eight highly active Dutch female social media users share their illness on YouTube and Instagram. In addition, I interviewed five of them. Through their online performances, the women in this study illustrate their investment in self-care practices, whilst simultaneously laying bare the limits of these practices in ensuring permanent well-being. Central to transmitting their experiences is the performance of balanced positivity; meaning that illness is dealt with in a predominantly ‘positive’ way, as well as through the occasional display of (moments of) hardship. I identify three main aspects of this performance of balanced positivity, namely: (1) appearances, (2) mindset, and (3) presence. The practice of balanced positivity is congruent with the concept of legitimacy narratives, because it allows women with a contested illness to show their efforts to cope with their condition as well as the myriad challenges that remain despite these efforts.
This article is based on an online ethnographic study of Dutch women who use YouTube as a medium to document their contested illness experiences. During 13 months of observations between 2017 and 2019, we followed a sample of 16 YouTubers, and conducted an in-depth analysis of 30 YouTube videos and of 7 interviews. By adopting a ‘praxiographic’ approach to social media, and by utilising insights from phenomenological theory, this study teases out how bodies are ‘done’ in (the making of) these YouTube videos. We describe three types of bodies: (1) inert bodies, (2) experienced bodies, and (3) authentic bodies. Ultimately, this study shows how vlogging about contested illness is a practice in which bodies are continually (re)configured, and through which the ‘invisibility’ of a sufferer’s condition can obtain social visibility.
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