When Amy posts a photograph of herself on Instagram, she knows what will attract attention. A picture of her in a bikini may receive thousands of views. A post explaining the realities of living with a stoma (an opening in her abdomen that directs waste to a bag attached to it) may reach far fewer people.
“I get caught up in the numbers game like anyone,” said Amy. She has around 5,000 followers on Instagram, which is a respectable following considering that she creates content about surviving bowel cancer. Amy, like many others we have spoken to, uses social media to share her experience, connect with others and raise awareness. But what happens when sharing health information becomes tied to the rules of social media attention?
Finding others facing similar situations can be life-changing for people with rare or rarely discussed conditions. Amy has Lynch syndrome, an inherited condition that substantially increases the risk of developing certain cancers, often at a younger age. About one in 400 people are affected by Lynch syndrome, yet only 5% are aware of having it. Amy’s posts provide something many people with Lynch syndrome struggle to find: accessible information and the experience of someone with the condition.
In our research into how hereditary cancers are discussed online, we spoke to dozens of people around the world who share their experiences of illness on social media. They all told us that their primary goal is to educate others and support their peers.
Some want to represent their communities, especially if they feel these communities are underserved by the healthcare system. Kiara (not her real name) told us: “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’.”
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