"I was really, really nervous posting it": Communicating about Invisible Chronic Illnesses across Social Media Platforms
Abstract
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.
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Emerging research highlights the potential benefits of passive SMU for marginalized populations, such as LGBTQ+ individuals, autistic people, and people with physical disabilities.
“Emerging research highlights the potential benefits of passive SMU for marginalized populations, such as LGBTQþ individuals (Fish et al., 2020), autistic people (Gillespie- Lynch et al., 2014), and people with physical disabilities (Sannon et al., 2019).”
From Are active and passive social media use related to mental health, wellbeing, and social support outcomes? A meta-analysis of 141 studies (2023) · cites this paper as Sannon et al., 2019
Cites
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“Some ICIs, such as chronic fatigue syndrome and fibromyalgia, are also "contested illnesses"—that is, both physicians and the public often question the validity of these illnesses, which further stigmatizes people’s illness experience [9].”
BackgroundSharing Health Data for Better Outcomes on PatientsLikeMe
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Godard, R., & Holtzman, S. (2023) · Journal of Computer-Mediated Communication · doi:10.1093/jcmc/zmad055 · Cited by 171 · see citing works
- Authors
- Sannon, S., Murnane, E. L., Bazarova, N. N., & Gay, G.
- Affiliations
- Cornell University (US)
- Stanford University (US)
- Venue
- Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems
- Publisher
- ACM
- Published
- 2019-05-02
- Pages
- 1-13
- OpenAlex
- W2942214282
- Cited by
- 56
- References
- 8
- Citations by year
- 2026: 2 · 2025: 7 · 2024: 9 · 2023: 9 · 2022: 12 · 2021: 10 · 2020: 6 · 2019: 1
- FWCI
- 47.62
- Type
- conference paper
- Language
- en
- Open access
- closed
- Locations
- CHI Conference on Human Factors in Computing Systems (publishedVersion)
- Funders
- National Science Foundation (1405634, 1344587)
- Topics
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Social Sciences › Health › Social Media in Health Education
- Social Sciences › Sociology and Political Science › Impact of Technology on Adolescents
- Keywords
- social media disclosure, online stigma, platform selection, social support, emotional support, disclosure of illness, Facebook, Instagram, Twitter, social media use
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