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2019-11-22 08:33:06 Voices

At 8 every night, Xiaorou — bewigged, glammed out, and dressed to kill — fires up Douyin, known as TikTok outside of China, and welcomes her fans back to her livestream channel. But unlike the platform’s other aspiring viral stars, Xiaorou’s wig isn’t just for fashion or performance: Diagnosed with cancer in 2017, her regular chemotherapy treatments have left her bald.

Xiaorou, who’s 35 and goes by “Anti-cancer Angel” online, isn’t hiding her condition from her fans, and she occasionally doffs the wig when viewers tell her how much they like her “real” appearance. In addition to her nightly show, Xiaorou also records her routine hospital visits, turning them into short, 15-second videos for her fans to see.

Over the past few years, short-form video apps like Douyin and rival Kuaishou have exploded in popularity in China, where they currently boast a combined user base of nearly 648 million. As emerging, next-generation social networks, these platforms have fostered virtual communities for millions of otherwise isolated young Chinese. Among them there are those who, like Xiaorou, have been diagnosed with cancer at an age when they could be climbing the corporate ladder or thinking about starting a family.

“Cancer” is an intimidating word, and people’s evident awkwardness when discussing it leaves many patients reluctant to talk about their conditions or reveal their diagnoses at all. So what is it about video-sharing platforms that give people like Xiaorou the confidence to stop suffering in silence and open up about their lives?

Xiaorou records a livestream (right) and the user interface of her TikTok account. From the author

Xiaorou records a livestream (right) and the user interface of her TikTok account. From the author

In October 2018, I started following 15 livestreamers who’d been diagnosed with cancer, and I’ve since interviewed seven of them in-depth. I found that these patient-livestreamers often turn to online communities for support their families or social networks are unable to give.

In China, good doctors and medical facilities tend to be clustered in cities, and especially at a few top hospitals in major metropolises like Beijing and Shanghai. Getting an appointment is difficult, and because most cancer drugs are not covered by medical insurance, the cost of treatment is exorbitant. Many cancer patients, especially those from the countryside or smaller cities, struggle to receive the needed care, and may have to travel to or stay long-term in a large city far from home.

A few days after “Strong Swallow” underwent surgery, her older sister asked her to immediately repay the money she’d loaned her.

Ideally, cancer patients would rely on their families for emotional care and support during this time. But the long-term burdens of organizing and paying for cancer treatment can be exhausting, both mentally and financially. Some families go bankrupt; in others, relatives cut their potential losses by cutting off their relationships with the afflicted. A few days after 21-year-old rectal cancer patient “Strong Swallow” — her Douyin screen name — underwent surgery, her older sister asked her to immediately repay the money she’d loaned her.

“She probably thought she wouldn’t get that money back,” Strong Swallow said. Beset both by disease and her family’s indifference, Strong Swallow frequently told me that her life contained nothing she’d miss.

Many of the young cancer patients active on Douyin have had similar experiences. Of the 12 patient-livestreamers I followed who were women, nine were or had been married. Of these, six had been divorced by their spouses after their diagnoses. The neglect of friends and family can dishearten patients, until, like Strong Swallow, they lose the will to live. Fortunately, the rise of the internet has allowed an increasing number of them to find the emotional — and in some cases, even financial — support they need.

For many patient-livestreamers, short-form video platforms are a place they can go to open up about their conditions. Some said they share videos online in the hopes of finding a confidant with whom they can talk about their experiences and receive encouragement. This is especially important if the people closest to them have cooled toward them or their friends have grown distant.

According to her own account, Xiaorou closed herself off from the world after her diagnosis. “Later I figured, just because I’m sick, doesn’t mean I have to despair,” she said. “I wanted to use this method to encourage (those like me), and to sing, share my story, and give health tips.”

The positive, warm comments left by strangers — sometimes hundreds of them — reassuring the livestreamers that “it gets better,” offer much-needed comfort. After her friends started dropping out of her life, Xiaorou struck up friendships with a number of Douyin users from across the country, even becoming real-life friends with a few of them.

Strictly speaking, there’s nothing particularly novel about patients building communities for themselves online. Previously, cancer patients may have joined support groups on chat platform QQ or posted on web forums dedicated to the subject.

What differentiates video platforms like Douyin from these other communities is their reach. Patient-livestreamers’ voices aren’t confined to dedicated groups full of others in the same situation. Douyin and Kuaishou are highly public, and they offer cancer patients a space where they can cast off the stigma associated with their diseases and regain control over their image and self-identity.

“Just because we have cancer doesn’t mean we can’t have the same mental outlook as ordinary people,” Strong Swallow told me. “Can’t we also enjoy looking good, putting on makeup, and wearing something nice?”

Viewer approbation allows patient-livestreamers to actively respond to the ways in which their treatment regimens have altered their appearances.

Many patient-livestreamers will dress up for their shows; some even try to perfect their looks with filters that clear their skin, slim down their face, and elongate their legs. Viewer approbation allows cancer patients to actively respond to the ways in which their treatment regimens have altered their appearances. Strong Swallow, who said she cares deeply about her looks, once wrote in one of her videos: “Heading to the hospital for PD-1 (treatment) in a wig and beautiful make-up. Going to be the belle of this ball.”

And while their conditions may have cost them their ability to work and their social networks, some young Chinese with cancer, like Xiaorou, find they can regain their sense of self-worth by becoming “wellness advocates,” sharing short clips of their experiences fighting cancer and reminding their viewers to take care of their bodies.

Livestreaming also offers cancer patients an opportunity to win financial support. It’s common practice on Douyin and Kuaishou for fans to give their idols gifts or buy items through their pages, and well-intentioned fans or philanthropic organizations might send patient-livestreamers money directly. One female livestreamer, who goes by “Single Mother,” received 3,000 yuan ($425) from a charitable organization through Douyin. A man, “Lucky Brother,” also receives donations through his account.

But rather than rely on charity, many patient-livestreamers prefer making use of their own abilities to earn money, singing and performing to win audiences’ financial support. Doing so helps alleviate the shame and lower self-esteem that sometimes accompany charitable donations.

A screenshot shows an online converation between a livestreamer and a viewer. Livestreamers often receive unsolicited medical advice from fans. From the author

A screenshot shows an online converation between a livestreamer and a viewer. Livestreamers often receive unsolicited medical advice from fans. From the author

In short, while many assume that those with serious diseases can only be passive recipients of aid, video platforms are helping young adults with cancer break through the stigma surrounding their condition, transform the public’s perceptions of cancer patients, and even find ways to support themselves and others. In the process, patients are moving from the margins to center stage and actively constructing new support networks.

But the social support derived from virtual platforms has its limits. Cancer patients who go public can easily become the target of unwanted curiosity or unwelcome medical advice, and not every viewer can be counted on to be kind. In addition, any material gains they make are generally unsustainable in the cutthroat streaming marketplace, which also tends to favor those with classic good looks.

Ultimately, Douyin can help cancer patients, but it’s no substitute for systemic improvements to China’s medical safety net. Caring for the nation’s cancer patients will require not just online communities, but also a comprehensive social security system, strong family and friend networks, and a constellation of professional medical groups, support groups, and social workers. That way, even if one part of the system fails, we can still guarantee that no one falls through the cracks.

With contributions from Tu Jiong.

Translator: Katherine Tse; editors: Cai Yiwen and Kilian O’Donnell; portrait artist: Zhang Zeqin.

(Header image: Wu Huiyuan/Sixth Tone)