
Associated Press - Friday, November 9, 2001
Martin Fackler
Two months later, he learned he had the AIDS virus.
Like many with AIDS in China, he has not told friends and family for fear of losing his job and shaming his parents. But many in China know about him anyway, because rather than suffer in silence, the university-educated engineer has begun chronicling his lonely struggle on the Internet.
"My Final Battle," updated about twice a week on a Shanghai Web site, gives a rare look at life with AIDS in China. It also coincides with an abrupt switch in Chinese government policy, from pretending there is no epidemic to confronting it head on.
The diary of the man who calls himself Li Jiaming has created a sensation in online chat rooms and state media, drawing attention to discrimination against people with AIDS.
His real name is secret, and he gives no clues to his identity. But Zhu Weilian, manager of Rongshu.com, the Chinese-language Web site where the diary appears, said he had talked to the author's doctors, who confirm that the diarist is real and has AIDS.
The writer tells of humiliations universally known in the world of AIDS, such as the company that sacked an AIDS sufferer and then disinfected all the toilets, and of habits that evolve directly out of everyday Chinese life, such as not letting his lips touch his chopsticks when eating with friends from shared dishes.
Fear of ostracism
"I have learned special strategies that allow me to continue life with my friends," he said in a telephone interview arranged by the Web site's managers.
"Living with AIDS is a life of loneliness," said the soft-voiced, articulate author. "If you tell the truth, you face discrimination that will rob you of everything you have. All you'll have left is the disease."
The online diary has been visited 2.2 million times since the first entry appeared four months ago, the site's operators said.
"Li Jiaming has washed off some of the shame of having AIDS, but it is still very difficult to tell the world," said Fei Le, who edits the diary for Rongshu.com.
Fear of ostracism is so intense in China that most HIV infections go unreported. While 26,058 people have been reported infected with the virus, the Ministry of Health says the true number is closer to 600,000.
'Terrified'
In August, the government gave up insisting that AIDS was not a problem in China and confirmed that the virus was spreading, especially among drug users and in the flourishing sex trade.
But even though authorities have announced a campaign to train health workers and educate the public, many Chinese still hide their disease, even to the point of avoiding medical treatment.
Doctors say some patients have been dismissed from jobs or schools and even refused treatment by hospitals when their infection was revealed.
"Ordinary people are terrified of AIDS," said Dr. Pan Qichao, who treats AIDS patients at the Shanghai Municipal AIDS Surveillance Center. "If they know there is an HIV carrier living nearby, they will cut off all contact with him."
The diary alternates in tone between anger at discrimination and despondency about the toll of AIDS.
The author writes that a friend infected with the virus took out his rage by advertising in newspapers for girlfriends and having unprotected sex with some of them.
He says he had a girlfriend but ended the relationship before they ever had sex because he feared exposing her to the virus.
He writes that doctors have told him he is showing early symptoms of AIDS, including memory loss that causes him to lose his train of thought in midsentence.
Because like most Chinese he cannot afford Western anti-AIDS drugs, he takes traditional medicines, including herbal teas and a bitter melon that doctors say slows the virus' advance. He vows to live a normal life as long as possible.
What he fears most is that his parents will be made to suffer for his disease. "I will devise a way to make it look like I died a natural death," the diary said. "I can't bear to see my parents living under the accusing gaze of others."
011109
AP011110
Copyright © 2001 - Associated Press. Reproduction of this article (other than one copy for personal reference) must be cleared through the AP Permissions Desk.
AEGiS is a 501(c)3, not-for-profit, tax-exempt, educational corporation. AEGiS is made possible through unrestricted funding from Broadway Cares/Equity Fights AIDS, Elton John AIDS Foundation, National Library of Medicine, Pacific Life Foundation, and donations from users like you.
Always watch for outdated information. This article first appeared in 2001. This material is designed to support, not replace, the relationship that exists between you and your doctor.
AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.
Copyright ©1980, 2001. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .