TY - JOUR
T1 - "It's not all nice and fun"
T2 - Narrating contested illness on YouTube and Instagram
AU - Groenevelt, Irene
N1 - Funding Information:
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research is funded by a Vici grant (277-20-008/2737) from the Dutch Research Council (NWO), which has been granted to Jenny Slatman’s research project “Mind the body: Rethinking embodiment in health care” (2017-2022).
Publisher Copyright:
© The Author(s) 2021.
PY - 2021
Y1 - 2021
N2 - 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.
AB - 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.
KW - balanced positivity
KW - contested illness
KW - moral legitimacy
KW - online ethnography
KW - self-care practices
KW - social media
UR - https://journals.sagepub.com/doi/full/10.1177/13634593211017187
U2 - 10.1177/13634593211017187
DO - 10.1177/13634593211017187
M3 - Article
SN - 1363-4593
JO - Health. An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine
JF - Health. An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine
ER -