" I was really, really nervous posting it" Communicating about Invisible Chronic Illnesses across Social Media Platforms
Proceedings of the 2019 CHI conference on human factors in computing systems, 2019•dl.acm.org
People with invisible chronic illnesses (ICIs) can use social media to seek both informational
and emotional support, but these individuals also face social and health-related challenges
in posting about their often-stigmatized conditions online. To understand how they evaluate
different platforms for disclosure, we interviewed 19 people with ICIs who post on general
social media about their illnesses, such as Facebook, Instagram, and Twitter. We present a
cross-platform analysis of how platforms varied in their suitability to achieve participants' …
and emotional support, but these individuals also face social and health-related challenges
in posting about their often-stigmatized conditions online. To understand how they evaluate
different platforms for disclosure, we interviewed 19 people with ICIs who post on general
social media about their illnesses, such as Facebook, Instagram, and Twitter. We present a
cross-platform analysis of how platforms varied in their suitability to achieve participants' …
People with invisible chronic illnesses (ICIs) can use social media to seek both informational and emotional support, but these individuals also face social and health-related challenges in posting about their often-stigmatized conditions online. To understand how they evaluate different platforms for disclosure, we interviewed 19 people with ICIs who post on general social media about their illnesses, such as Facebook, Instagram, and Twitter. We present a cross-platform analysis of how platforms varied in their suitability to achieve participants' goals, as well as the challenges posed by each platform. We also found that as participants' ICIs progressed, their goals, challenges, and social media use similarly evolved over time. Our findings highlight how people with ICIs select platforms from a broader ecology of social media and suggest a general need to understand shifts in social media use for populations with chronic but changing health concerns.