Aussie musician Sia announced on Twitter a few weeks ago that she’s been diagnosed with Ehlers-Danlos Syndrome (EDS), a condition I also have.
There’s ambivalence whenever you hear that a celebrity shares a relatively under-recognised chronic illness. You hope that they’ll be able to raise awareness for it, secure research funding, get people diagnosed and adequately treated. At the same time, you know those are unrealistically high expectations to put on anyone, especially someone with a painful and exhausting condition.
Sia’s announcement highlighted issues with the way chronic illness is portrayed in mainstream media as well as how it’s treated by mainstream medicine. And yet, the counterpoint narrative – the one that offers alternative, anti-scientific explanations and treatments – is even more problematic. Whichever path you take is riddled with misinformation, vested interests and few opportunities to ease suffering.
