Tilburg University, The Netherlands.
Health (London). 2022 Sep;26(5):589-604. doi: 10.1177/13634593211017187. Epub 2021 May 25.
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 ; 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.
本实证研究借鉴了叙事理论的观点，深入探讨了患有争议性疾病的女性如何在社交媒体上讲述自己的经历。本研究基于 2017 年至 2019 年间 13 个月的在线观察，分析了 8 名非常活跃的荷兰女性社交媒体用户如何在 YouTube 和 Instagram 上分享自己的疾病。此外，我还采访了其中的 5 人。通过她们的在线表现，本研究中的女性展示了她们对自我保健实践的投入，同时也揭示了这些实践在确保永久健康方面的局限性。她们通过在线表演来传达自己的经历，这意味着疾病主要以“积极”的方式来处理，偶尔也会展现（困难时刻）。我确定了这种平衡积极性表演的三个主要方面，即：（1）外表，（2）心态，和（3）在场。平衡积极性的实践与合法性叙事的概念是一致的，因为它允许患有争议性疾病的女性展示她们应对疾病的努力，以及尽管做出了这些努力，但仍然存在的无数挑战。
