Open Liu Kaixin's social media page and the first thing you see is a close-up of her face: long hair, large-framed glasses and a feeding tube running from one nostril. Then comes her light, gentle voice when she speaks to viewers as if they were friends. "Many people leave comments on my videos saying, 'It's heartbreaking to watch this. What can we do to help?'" Liu said. "But in my view, being seen is already a form of help."

For Liu, 33, that belief is rooted in lived experience. Living with Ehlers-Danlos Syndrome, a rare inherited connective tissue disorder, she spent years with its symptoms that were noticed but not understood. By the time she was diagnosed in 2015, she had already lived for more than two decades with pain, misunderstanding and delay. Before doctors named the illness, other people had named her in other ways. "Too delicate, too fussy, too troublesome, too fragile ..." she wrote in her first book, listing the labels that clung to her through the first two decades of her life.

Born in Yantai, in East China's Shandong province, Liu could eat only liquid or semi-liquid food since childhood. Crying or sweating could bring out rashes on her skin. Her joints slipped out of place easily. Bruises came quickly. Pain came often. The signs were there, but for years they did not add up to an answer.