Children of HIV-positive parents in China band together to self-educate about the taboo disease

By Xu Ming Source:Global Times Published: 2018/4/11 18:53:41

Many Chinese seniors living with HIV face abandonment from their adult children

A WeChat group is proving popular among the adult offspring of HIV-infected parents who previously lived in secret shame

Many ordinary Chinese still have deep-rooted misunderstandings about HIV/AIDS, which makes it difficult for patients and their relatives to live in peace

Primary school students form a red ribbon with candles to promote AIDS awareness in Hohhot, Inner Mongolia Autonomous Region, on December 1, 2017. Photo: VCG

Cookie, a 25-year-old woman from Sichuan Province, closely followed her WeChat group even during an overseas holiday.

Having an HIV-positive mother in prison, Cookie relies heavily on WeChat to obtain news, updates and information about living with HIV-infected people, in preparation for her mother's release next year.

The group, named Wu Ai Wu Jia (Loving My Family), is for people with HIV-positive parents, allowing them to share knowledge, quell fears and misunderstandings, and draw courage from each other in their collective fight against AIDS/HIV.

The members of the group, currently numbering in the 40s, each have at least one parent infected with HIV. Living under this shadow, they all have gone through the initial shock and panic of their parents' illness, and have also come to terms with it. Now they are making efforts to tackle the situation by confronting the disease and Chinese society's misinformed stigma of it.

Prior to finding the WeChat group, it was a long, lonely process for these members, facing pressure from both society and their own parents. Cookie, upon first joining the group, used to ask questions like "Do you dine with your parents?" which she now regards as "naive." Such questions are typical for newcomers to the group who, even though slightly familiar with AIDS, still find it hard to accept as part of their daily life.

In Chinese society, AIDS and HIV remain a taboo that is seriously misunderstood by a large percentage of the population. With HIV-positive parents, some of the members have ended their marriage after revealing it to their spouse, while others keep it a secret from their loved ones.

There are also some who, finding it too hard to shoulder the responsibility and live on, relent to the disease and life itself. "We usually would scold and lecture him or her until they get awakened to the sense," said Sally whose parents are both HIV-positive.

Breaking silence

"My dad fell down and bleeds. What should I do?" "My parents help take care of my baby, but is it okay if they kiss the baby?" are among the many types of questions asked on Wu Ai Wu Jia.

While similar anxious questions have been asked online anonymously but not properly answered, questions on Wu Ai Wu Jia are mostly well-addressed. Joining in the discussions - either to ask or to answer - is a process of enhancing their collective knowledge about AIDS. Newcomers to the group often ask similar "newbie"-type questions, which long-term members must patiently explain for the umpteenth time.

Sally went through her darkest hour one year ago, after first learning about her parents' disease. She still remembers how she cried her eyes out for over a month.

"I was totally dumbstruck. I had no idea about what should I do about my parents and my own life," said the 28-year-old from Northeast China's Liaoning Province.

Sally even once called a suicide hotline before finding out about Wu Ai Wu Jia.

"It was like I finally found where I belong. People with other diseases could gather and openly discuss their experiences and share information. But we are all rather lonely and helpless. There are too many details in life that we didn't know who else to ask," Sally told the Global Times.

"The group helps a lot in relieving our psychological pressure," she said.

The group was started by Cheng Shuaishuai, a 28-year-old man from Central China's Henan Province who is now working in AIDS counseling. One year ago, a woman whose parents are HIV-positive asked Cheng to start a platform for similar people to communicate.

"At that time, I noticed that elderly AIDS patients had problems socializing and even taking their medicine regularly. So I thought it was a good idea to encourage their adult children, who have more access to information and good receptivity, to help," Cheng said.

Most of the group's long-term members are well-educated about AIDS, but it remains a personal challenge that each of them must face every day. To Cheng, the group allows people to discuss details of their life in confidence, which reduces their own fears of the disease.

"The group makes us feel we are not alone. After all, it is not a disease for open discussion yet," said Cookie.

Overcoming fear

Sally, an only child, had long known that her father was a homosexual, and also that her mother had many secret lovers. They were a family in name only, marrying most likely for convenience or societal pressures. But finding out that both her parents had contracted HIV within a month was an even bigger blow.

"Unlike what they did before (having secret lovers), this disease affects not only them but also my own family and future."

Overwhelmed, she revealed her family's shame to her former husband, hoping he would help shoulder the burden. Instead, the husband divorced her.

"It was time for a couple to bond, but he just ran away. I did not cry over him. I went to work as usual the next day. That's all," said Sally, who believes that such experiences forced her to quickly grow up.

Cookie learned about her mother's disease from her cousin in 2014. She clearly remembers how she was shattered that morning. She once had seen her mother using a hypodermic needle but dared not ask her about it. In 2012, Cookie's parents were both sent to prison for drug trafficking, where her mother was diagnosed HIV positive. By the time her mother told Cookie that she was infected, in 2015, Cookie had already accepted it.

But not everyone is so accepting of such news. Cheng revealed that, while volunteering in his hometown hospital several years ago, he saw many HIV-positive seniors who had been abandoned in the hospital by their adult children. Many of those same children did not reappear until their parents had passed away.

Cookie told the Global Times that her cousin, whose father is also HIV-positive and drug addicted, felt so ashamed of him that she once said she hoped he would "die early."

Fighting together

Discussions on the Wu Ai Wu Jia group mostly focus on exchanging helpful information about medicine, how to help their parents obtain proper treatment and how to get along with them during this emotionally tense time.

Many group members admit that they have to force their parents to regularly take their medicine, not unlike small children. "I tell them, if they want to live, they need to take medicine on time," said Sally.

Besides confronting the disease itself, many members must endure the fear and sense of shame in society. An infected father of one group member disappeared for several days after finding out he was sick. By the time he was found, it was too late; he had committed suicide, according to Cheng.

"I guess I play a bigger role in dispelling their fear of this disease. I feed them all kinds of information to help them clearly understand the disease, but I tell them it is not something to be afraid of," said Sally, who pointed out that, decades ago, China once had a history of fear-mongering when it came to AIDS and HIV education.

Sally told her infected parents that they will not bring any trouble to others (at work) as long as they treat their wounds, if any, properly. As a result, both parents are now emotionally closer than ever before and lovingly take care of each other. HIV, it seems, has ironically helped them feel more like a family.

"If there is only one (sick parent), it would be more embarrassing for them to live together," said Sally. "Most importantly, I never detest them. I divorced my husband because I chose my parents over my marriage."

Cookie is also trying her best to make up for the past, sending long letters and photos to her mother, who is still in prison. She admits that prison has given her mother a better living environment, everyone being equal and living disciplined, for controlling her disease. Going back into society, on the other hand, means she has to face inevitable discrimination.

In the meantime, Cookie refuses to tell any of her boyfriends about her mother's disease. "I also asked my grandmother not to tell anyone," said Cookie.

Sally likewise forced her ex-husband to promise not to tell anyone about her parents' disease. "I can shoulder the burden alone. I would never let anyone else I know share my secret in the future," Sally said, adding that she is hoping to use her experiences to establish an organization to help people like her.

"I know how torturing it is to endure all this," said Sally.

Newspaper headline: Confronting AIDS


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