Open Liu Kaixin's social media page and the first thing you see is a close-up of her face: long hair, largeframed 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.

Then, in a hospital in New York in the United States, someone finally gave that answer a name.

"'What is this disease?' I asked the doctor," Liu recalled in her book.

"'Wait a second. Let me look it up,' she said."

"The answer no longer mattered," Liu wrote. "Those 'overly delicate symptoms' that had troubled me for years turned out to be a rare disease that even many doctors had never heard of."

The diagnosis explained what had long gone unexplained, but it did not make the illness any smaller. By then, the disease had already affected most of her organs. She would later survive two cardiac arrests and receive a pacemaker. Because of digestive failure, she cannot eat on her own. She has worn a feeding tube for more than a decade, uses a wheelchair much of the time, and weighs about 31 kilograms — about the same as she did at age 10.

Yet Liu has never presented herself only through illness. She paints and is a graduate of the Central Academy of Fine Arts and New York University. In 2023, she held a solo exhibition in Beijing titled UNFINIshed. She works as an assistant to the CEO of a listed artificial intelligence company. Last year, she published her first book, May You Live Freely and Boldly. Her second book, We Can Grow with Composure, was published in March.

When Liu uploaded her first video on Feb 28, 2023 — Rare Disease Day — she simply wanted to document and share her life, hoping to challenge public stereotypes about patients with rare diseases. Unexpectedly, the video quickly went viral, bringing viewers, recognition and then the complicated experience of becoming visible in public.

"I have never felt that I was seen because my life is especially hard," she said. "What is truly hard is for those who were never given the chance to be seen at all — those who were already abandoned, already given up on, before anyone noticed them."

For Liu, visibility is not mainly about sympathy. It serves a more practical purpose. "If one more person sees me," she said, "then maybe someone with the same disease won't have to wait 20 years for a diagnosis. Maybe we'll face a little less inconvenience in everyday life."

Her videos reflect that idea quietly. She does not present herself only through the language of pain. She talks about everyday life, friendship, jokes and the small details of ordinary days. It's not just a patient on the screen, but also an artist, a writer, a stand-up comedian in a wheelchair, and a woman thinking aloud.

In her second book, Liu wrote about how easily people mistake a fragment for the whole. "We each look at the world and at other people like blind people touching an elephant," she wrote. "Maybe you have not touched, or did not dare to touch, the difficult parts. That is fine. But please do not therefore say that my life is easy." Then comes the sharper line: "If all you have touched is the elephant's ear, do not say the elephant is shaped like a fan."

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."