A woman named Amy has around 5,000 followers on Instagram. She survived bowel cancer and posts about living with a stoma, an opening in her abdomen that directs waste to a bag attached to it. She knows exactly which posts will perform.
A photograph of herself in a bikini can draw thousands of views. A post explaining what it is actually like to live with a stoma reaches far fewer people.
"I get caught up in the numbers game like anyone," said Amy. She also has Lynch syndrome, an inherited condition that significantly raises the risk of developing certain cancers, often at a younger age. About one in 400 people are affected by Lynch syndrome, but only 5% know they have it. Amy's posts offer something rare: accessible information from someone living with the condition.
Researchers studying how hereditary cancers are discussed online spoke to dozens of people around the world who share illness experiences on social media. According to Phys.org, all of them said their primary goal was to educate others and support their communities. Yet the platforms they use are not built to reward that goal.
Social media platforms prioritize engagement. Posts that collect reactions, comments, and shares are more likely to be shown to other users. Recommendation systems have grown more powerful over time, giving individual users less control over what appears in their feeds. That structure tends to favor posts that provoke emotional reactions over posts that deliver medical facts.
Amy understands this. "I'm like, that post is so important and then my dumb post of me in a bikini gets so many more views. I get mad about it," she said.
Some creators post because they feel their communities are not represented in mainstream health coverage. A participant identified only as Kiara explained why she felt compelled to share. "If you are a Black or brown person and you don't see yourself represented, then the immediate thought is that, 'Oh, this is not something that we do, this is just something that white women do,'" said Kiara.
The researchers note that finding others facing the same rare condition can be life-changing. For conditions like Lynch syndrome, where diagnosis rates remain low and medical literature can be difficult to access, personal accounts from patients may fill a real gap. But those accounts have to reach people first.
The platform mechanics work against that. Engagement-savvy posts face fewer fact-checking and moderation hurdles than they once did, according to the research. That means a carefully written post about cancer screening may lose ground to a post that simply generates more clicks.
The study does not offer a fix. But it documents a gap between what health creators intend to share and what the platforms choose to amplify, a gap that may carry real consequences for people searching for information about conditions they do not yet know they have.
