How "Illness Porn" Changed Chronic Illness Forever

More chronically ill people are sharing stoma bags and feeding tubes on social media without apology. It made me uncomfortable at first. I've come to think that discomfort was the actual problem.

Over the last few years I've watched more chronically ill and disabled people share the intimate physical details of their lives online: stoma bags, feeding tubes, the parts of illness that used to stay hidden by default. I'll admit it made me squeamish at first. I've come to think that squeamishness was the actual thing that needed fixing, not the visibility.

With roughly half of US adults living with a chronic condition, this kind of visibility does real work: it pulls people out of a silence that was never chosen, just inherited from a culture uncomfortable with sick and disabled bodies. Activists like Alice Wong, through the Disability Visibility Project, and campaigns like #OstomatesofInstagram have changed what's sayable in public, not just online.

Critics raise real concerns about privacy and the mental health cost of oversharing. Those concerns deserve to be taken seriously. In my experience, the community and reduced isolation these spaces provide outweighs the risk for most people choosing to participate, and it's their choice to weigh, not a bystander's to make for them.

If seeing a non-conforming body still triggers discomfort, that discomfort is worth examining rather than exporting back onto the person who shared it. Nobody chose this life. Choosing to live it visibly, without apology, is a different thing entirely, and it's changing the culture faster than a decade of awareness campaigns did.

Further reading: Alice Wong and the Disability Visibility Project, and PatientsLikeMe for peer support built specifically around shared symptoms and treatment experience.