Key Takeaways
- Platform cultures differ markedly across Instagram, TikTok, and X, producing divergent informational ecosystems that can skew perceived norms, risks, and expectations for people with hereditary cancer syndromes.
- Visibility remains inequitable, with dominant imagery favoring reconstructed, normative survivorship and marginalising flat closure, stoma, male, LGBTQ+, and non-White experiences, amplifying isolation.
- Content creation functions as uncompensated caregiving labor, including crisis messaging, education, and emotional support, often performed during illness and recovery with minimal structural support.
- Moderation and algorithms can penalise medically relevant recovery images and suppress high-effort posts, contributing to burnout, self-censorship, and reduced dissemination of credible patient narratives.
- Community-generated support can be clinically consequential by normalising preventive interventions, countering misinformation that spreads faster than facts, and fostering timely care-seeking and shared decision-making.
“Being honest and accurate on social media matters, even when it is tough and the algorithm works against you.
This research is a reminder: our stories matter, and our voices bring hope and connection to those searching for support. Moving forward, it’s crucial for all of us to keep working together, be mindful of the content we create, and build a space where everyone feels seen and heard.”
Lynch Syndrome Ireland 