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2018-08-16 04:13:00 Voices

In June, the Chinese movie “Dying to Survive” drew critical acclaim for its depiction of some of the country’s cancer patients who, forced to pay huge prices for medication, smuggle cheap but unproven treatments into China from India. The film also portrayed the profound emotional distress, social isolation, and feelings of helplessness that many Chinese cancer patients experience as a result of being sick.

China’s overburdened health care system means that while the initial cancer diagnosis and treatment are of a reasonable standard, rehabilitation and mental health services fall by the wayside. In addition, the popular image of cancer in China emphasizes pain, decrepitude, and — falsely — contagiousness.

As a result, a number of private support groups now cater to the needs of cancer patients. Some organizations boast tens of thousands of members. The reasons why Chinese people attend these groups are broadly similar to their Western counterparts: a desire to share the burden with people who understand what they’re going through, and a need to recover a sense of normality. In China, such groups give chances to people who feel socially shunned to restore some respect.

However, the structure of some self-help organizations asks pertinent questions about Chinese society’s relationships with consumer capitalism and competition. Many groups reward members who have wealth or who live longer than other patients with status and influence, peddle health care products and services from corporate donors, and introduce elements of competition into the rehabilitation process.

As part of my research, I visited Shenzhen Rehabilitation Paradise (SRP), a cancer support group founded in 1998 that today boasts more than 20,000 members. Life at SRP revolves around an invisible, pyramid-like hierarchy. Members pay an initial 200 yuan ($29) to join, which buys them participation in a variety of basic activities.

Although some Chinese support groups accept direct corporate donations, SRP is run as a vehicle for its chairman, Lu Zhihong, to sell his other company’s health care products — mostly traditional Chinese medicines and programs that teach breathing techniques. Members who buy these products in significant amounts accrue more social capital and influence within the hierarchy. Indeed, the most influential SRP members are predominantly middle-class patients who are deemed superior by virtue of their purchasing power.

The extent to which market forces influence interactions at organizations like SRP might seem cynical, even morally questionable.

Almost all self-help cancer organizations in China elect role models known as kang’ai mingxing — literally, “anti-cancer stars.” Put simply, these are members who manage to outlive their peers. At SRP, new members are encouraged to venerate and emulate anti-cancer stars and vie with one another to see who can live the longest. Anti-cancer stars, in turn, move up the hierarchy if they volunteer to help others. The best volunteers gain positions as members of the SRP’s council and influence the organization’s operations.

At a meetup for cancer patients to share their experiences, I heard Hong Xiaoming — an amiable anti-cancer star in her 60s — reminisce about living with the disease. “Like a bolt out of the blue, I was diagnosed with mid-stage lung cancer eight years ago,” she said. “I felt desperate, until I came here. When I met people who lived for more than 10 years after having their tumors removed, I saw glimmers of hope. I saw them as role models and dreamed that one day I could become like them, radiating positive energy and calming patients’ fears of death.” Hong finished her speech with a rallying cry to the 30 or so members in attendance. “I survived! And my today is your tomorrow!” she concluded, to a round of applause.

At a typical self-help organization, cancer patients participate in a number of group activities. At SRP, many practice Guo Lin-style qigong, a set of breathing exercises approved by China’s General Administration of Sport that claims to relieve cancer. Patients are instructed to calm their minds, breathe deeply, and visualize their tumors shrinking and disappearing. Teachers routinely claim that these techniques encourage the body to absorb higher-than-normal levels of oxygen into the bloodstream. The oxygen, in turn, helps kill supposedly anaerobic cancer cells. (To date, there is no conclusive scientific evidence to suggest that qigong exercises help fight cancer.)

Regardless of qigong’s actual cancer-relieving effects, mere belief in its benefits is sometimes enough for SRP’s members. Liu Qitong, a 65-year-old man who was diagnosed with nasopharyngeal cancer 20 years ago, underwent surgery the same year, and has been in remission ever since, practices qigong five or six hours a day. “If you choose to do qigong, you must stick to it,” said Liu, who took up the exercises during chemotherapy. “At the time, I was too weak to stand up. Qigong made me feel better.”

The extent to which market forces influence interactions at organizations like SRP might seem cynical, even morally questionable. The phenomenon demonstrates both how much the general public has internalized market values and the legacy of so-called model workers, the much-lauded paragons of virtue held up in the early years of Communist rule. The role of anti-cancer stars echoes that of model workers and encourages other patients to conquer their health problems by sheer force of will.

While it is true that cancer patients who strongly believe in the value of life tend to report better rehabilitation outcomes than those who don’t, the Chinese approach is perhaps controversial, as it reduces the question of individual rehabilitation to a competitive, zero-sum model that equates death with losing and fails to account for the complexities of individual diagnoses, disease progression, and recovery.

But the lasting popularity of such organizations, and the testimonies from many of their members, should encourage us to draw more nuanced conclusions. Most people at the SRP are older, middle-class cancer patients who have suffered the shock of their diagnosis, the pain of treatment, the dearth of rehabilitation, and the social isolation that comes with being chronically ill in China. Many have been rendered unable to work, and the same competitive instincts that once fueled their career ambitions now motivate them to fight cancer. Away from the product offerings and invisible, consumption-based hierarchies, self-help groups still provide unique psychological support for China’s often-overlooked cancer patients. For many people, that’s all they need.

Editors: Wu Haiyun and Matthew Walsh.

(Header image: A still frame from the film ‘Dying to Survive.’ IC)