A Foreign Notion: China’s Perception of Cancer
“Cancer is contagious.”
“There is no hope.”
“There are no preventatives.”
And worst of all, “cancer is death.”
If you do not give credence to these notions, consider yourself special; the above statements represent the views of a majority of the planet’s population regarding cancer.
Having grown up in the U.S., it seems as long as I can remember, I’ve been aware of cancer–how it’s caused, how to prevent it, how to spot it, how to beat it. Most importantly, that it can be beaten. I think that for many young Americans, the word ‘cancer’ has always been synonymous with the words ‘fight’ and ‘hope’. Unfortunately, this positive attitude and outlook stops short of international boundaries. All around the globe, deadly stigmas surround the ruthless disease.
The Lance Armstrong Foundation has been conducting studies in countries such as Japan, Mexico, South Africa and India in order to get a view of how cancer is perceived around the globe. In the summer of 2012, I took part in their first study of the cancer situation in the People’s Republic of China.
We spoke with cancer survivors, their loved ones, health officials, doctors, non-profit organizers and conducted man-on-the-street interviews. People told us their stories and opinions, and we began to grasp the Chinese way of thinking regarding cancer.
The stigma takes different forms in every country as varying cultures and customs bring about their own unique view on the disease, and China’s expansive history and traditions have molded an attitude toward cancer as distinctive as its people.
Early in our visit, Ying Zhen, the director of a government-run cancer prevention group, gave a glimpse of the difficulties of spreading cancer awareness in China.
“In Chinese culture, people still have fear about cancer and they don’t talk about cancer and that’s a great barrier for getting information through to the public,” Zhen said. “For example, when we go to the communities to do a talk or lecture, if we say that we are going to be talking about cancer, people will not come because they still think that if you talk about it, then it will bring shame or bad luck. So if it’s an info session about breast cancer, we call it a ‘women’s health talk.’”
When asked if the Chinese culture influenced the creation of this association between cancer and shame, Zhen responded, “In the traditional Chinese way of thinking, cancer means that someone did something bad in their past.”
We encountered this view repeatedly during our stay:
“People who got cancer, others might think of those people as having karma for doing something bad before,” one woman said.
“They might think that they’ve done something wrong in their past life, or even that their parents did something wrong. So, the bad luck, they have to repay for those victims that they did bad things to before,” said another.
This haunting mindset burdens Chinese cancer patients in a number of ways.
Often, for a newly-diagnosed patient to accept they have cancer means they are accepting the accompanying shame. The resulting emotional stress causes many Chinese patients to experience an initial state of denial, out of fear. Dr. Quing, chief doctor of the Shanghai Institute Hospital radiotherapy department, explained, “In the beginning, most cancer patients start to deny or do not accept the fact that they got cancer. That causes a lot of confusion psychologically.” They deny the truth and put off the treatment, sometimes until it is too late, he added.
And sadly, even accepting and coming to terms with the diagnosis does not equal escape from the effects of the stigma. Quing continued, “A lot of patients feel very self-isolated and think that people will probably discriminate against them.”
Ultimately, some people fighting cancer voluntarily do so completely alone in the time when they need support from others the most.
The Lance Armstrong Foundation aims to change that.
“We believe in a participatory approach to our international work–building projects and programs with local stakeholders every step of the way so that the solution is a relevant and impactful as well as sustainable one,” said Rebekkah Schear, Manager of International Programs at the Lance Armstrong Foundation. “There’s no better way to make sure that a project is successful in a different country than to have people familiar with that country and culture not just providing insight, but doing all the work with you every step of the way.”
“The average time an oncologist spends with a patient is less than five minutes,” said June Chan, a long-time devotee to the fight against cancer and one of the Lance Armstrong Foundation’s new heads of operations for the upcoming project in China. Chan shared with us a somber, well-known joke that exemplifies the situation:
A cancer patient will only hear three things from their oncologist:
1. What’s wrong with you?
2. Here’s your care of order.
3. NEXT!” (Right over your shoulder to the busy waiting room).
So then, imagine, the patient is sent out of the doctor’s office with no one to talk to—the nurses are too busy and untrained to help—and if they are not able to access or use a computer for information, “can you imagine how they feel?” says June. “They are so lonely. No one is helping them. They are all alone, in darkness, in fear.”
June explains the biggest problem with Chinese healthcare, “the lack of a support system to help patients understand their diagnosis, their treatment, what they are going to face, what side effects they may encounter, and how to cope with it.”
In her estimation, the way to battle the stigma of cancer in China is not directly, but to bring in international organizations, such as the Lance Armstrong Foundation, to teach local support groups how to effectively educate and increase the quality of life of cancer patients. And that by doing so, the stigma will slowly but surely lose its footing.
There’s no denying the Chinese have work to do on the cancer front in order to catch up with the more educated, advanced nations, but China does have an outlook on life that even the most cancer-savvy peoples could benefit from.
In many initial interviews with the Chinese cancer survivors, I mistakenly believed there was a mix-up in translation, as over and over again I received a confusing response. But becoming more accustomed to China, I realized that the mistake was mine. I entered the country assuming they were the only ones with something to learn.
Many of the survivors spoke of their disease not as something they beat or overcome, but something they came to peace with. Some even said they were able to “be friends” with their cancer, that they had found harmony with the undesired acquaintance.
When Qian Yu Qing, a lively and captivating older gentleman, was asked, “what would your advice be to a fearful, newly diagnosed cancer patient?” he responded:
“I am not scared so new patients should learn from me. We come into this world with nothing, and we leave this world with nothing. The difference? On our way out, we take a smile.”