A journey of rare courage

For much of her life, Liu has had to contend not only with illness itself, but also with the assumptions attached to it. Those assumptions did not disappear when she became visible online. Alongside encouragement and acceptance came doubt, ridicule and abuse. At one point, after visitors intruded into her hospital ward, she stopped posting for some time. "The online world," she said, "can sometimes be noisier than the reality beside one's ears."

Even so, she did not step away from visibility altogether. "I am willing to believe that discrimination and prejudice often come more from lack of understanding than from malice," she said. "So I am willing to be a little braver, to let rarity be seen."

Liu rarely speaks as though she were speaking only for herself. That "we" matters. Her public presence has emerged at a moment when rare disease patients in China are becoming more visible in policy discussions and public life. But greater visibility does not automatically make life easier. Diagnoses can still come late. Public understanding can still lag behind. Illness can still flatten a person in other people's eyes.

Again and again, her videos return to the texture of ordinary life, resisting the urge to reduce her to a diagnosis. In her second book, Liu writes, "I hope that one day, when people see me, they will see nothing unusual — not worth a second glance."

Still, she knows that day remains far off. "If I do not yet have the strength to open a road, then I will first push away the obstacles in front of me," Liu writes, likening herself to Sisyphus pushing the stone uphill, or to the old man in a well-known Chinese tale who resolved to remove mountains through sheer persistence, day after day. "Before I have the courage to fully possess hope, I will still, stubbornly, do all I can."