Are online communities for chronic illness doing more harm than good? | Aeon Essays

"The initial weeks of this turmoil were pure hell. I couldn't eat, I couldn't sleep, and I had burning in my mouth, throat, ears, and nose 24/7. I want to die just to stop the burning ... feels like something is "tearing" into my stomach ... I eat, I suffer. If I don't eat, I suffer. I'm being bullied by my body.'"

"This is the paradox of chronic illness today. Never before have humans possessed such convenient access to abundant medical knowledge, expert guidance, health influencers, and communities of fellow sufferers. Expertise flows across digital networks, promising hope for every ailment. Yet, paradoxically, this abundance can become a source of suffering. Instead of finding relief, many individuals suffering from chronic illness find themselves descending into a spiral of suffering - a cruel journey where each piece of information, whether from expert opinion or laypersons, may offer hope momentarily, but over time deepens their distress."

"While diseases such as cancer, AIDS, ALS, Alzheimer's, multiple sclerosis and diabetes often evoke deep fear, sympathy and collective urgency - reflected in dedicated charities, advocacy groups and public awareness campaigns - there exists an under-recognised class of bodily conditions that also wreaks havoc on human lives. These illnesses often receive little social legitimacy and may even be dismissed by medical professionals, family members and society at large as mere tiredness, laziness or psychological fragility. Conditions such as chronic fatigue syndrome (CFS), irritable bowel syndrome (IBS), Long COVID and Lyme"

A user describes relentless, debilitating symptoms of reflux that make eating and living unbearable. Access to abundant medical knowledge and online communities provides hopeful expertise but can intensify distress when treatments fail. Repeated exposure to conflicting advice and promises of relief can trap sufferers in a worsening spiral of hope and despair. Many chronic conditions lack social legitimacy and are often dismissed by professionals, family, and society as weakness or laziness. Conditions such as chronic fatigue syndrome, irritable bowel syndrome, Long COVID, and Lyme frequently produce profound suffering without commensurate recognition or support.

Read at Aeon