chapter 5

“This pill organizer is really helpful”

All of them had started taking medicine, carrying it with them everyday wherever they go, to the unknown eye it looks innocuous just a few pills which could pass off as ibuprofen or whatever. But it is these pills which will stabilize their condition and allow them to prevent their conditions turning into AIDs.

One pill a day; everyday for the rest of their lives.

No matter what, they need to keep taking the medicine. If they don’t take the medicine for even a few days, it gives HIV the chance to mutate into something more dangerous. “Currently the medicine we buy is procured by the state, so we get it free of charge, I’m set to take my pills everyday at 10am no matter wherever I am or whatever I’m doing.”

“I can do whatever I want from not sleeping the whole day to not eating the whole day but I must take the medicine.”

Through our naked eye, we cannot see what harm HIV is doing to their bodies, and other than health check ups, all they can do is take the medicine everyday forever praying it will not develop into AIDs.

“When I was going to hospital for my check up in Henan, I saw so many people waiting in line to get their meds for HIV.”  During the 2000s, there was a scandal where many people in Henan were infected with HIV due to blood transfusion mistakes. “But I chose not to collect my medicine, as I was about to go home for the Chinese New Year and was afraid that my parents would find out.”

“No, listen you really need to take your meds.” Others sitting next to him started to persuade him as well. “Well, the doctor said that I don’t need to start taking medicine at least not for this month, right now I’m still waiting for my third check-up results. If the doc says I need to take the medicine, then I’ll take the meds”. His CD4⁺ cell counts are still high, so he worries less I guess.

Regarding the side effects of the medicine, most said that they felt dizzy when they

first took the medicine. “I definitely feel my memory has deteriorated since I’ve started taking the medicine.” But regardless, other than the one person who’s afraid of his parents from finding out, all of them take it, they even chart their own medication history with time, day, month, etc. One of them says “Whoever invented the pill organizer is a genius”.

“I once read that some guy gotten by a dog and found out that his HIV status disappeared.”

“There was another guy who received a bone narrow transplant, the donor had a genetic defect where he couldn’t be infected with HIV so after the transplant the guy who got the bone marrow was cured.”

These news/rumors from whatever source they’ve heard of have become their only ray of hope for their future; who knows maybe they’ll get lucky from a dog bite as well.

“Guys lets all relax, all of you are still quite young so I’m sure they’ll find the cure in our lifetime”. I said that because I honestly believe in it. I wasn’t trying to ease up the mood or anything.

“No way can they find out”

Whilst we were waiting for the everyone to come here, the most common question that was asked is: What is the purpose of this meeting? Can we keep this dinner a secret? The girl even asked: Can I wear my mask? (So to keep identity hidden). I smiled and said “We’re here to eat, how can you eat whilst wearing a mask?”

In order to protect their identity, I guaranteed them that I would not leave out any clues that could validate who they are in the article, and in order to let them chat freely I will not ask them their real names. Even now after this article is published, I still don’t know their real names.

This is the biggest pain of all for people living with HIV; you can’t talk or confide in anyone about it without fear of being repulsed. Communication is at best with close family or friends and healthcare groups. The youngest one with HIV is from a divorced family, his mother knows but his father doesn’t.

“No way am I telling them…there’s no point in making them worry.”

In 2019, there was also a very disturbing news article where people living with HIV were being blackmailed by fraudulent calls and if money was not paid, they would expose their personal information. Regardless of whether these information was exposed to the public, the fact that this information is leaked to criminals desperate to make money out of the sufferings of others is disgusting. Officially, the national AIDS-related information system is listed as a classified and secured information in the national network managed by 3 levels of information security. But as these news reports show there is still a danger in their information being exposed.

Privacy is just for the sake of their appearance. And they keep their privacy for the fear of panic in wider society. An HIV-infected person is likely to be refused employment, to lose friends, and to suffer all kinds of stigma, ostracism whether its in the school, the community, or the workplace.

“People with AIDs must be sluts” or “Don’t touch me or you’ll pass it onto me”, But even with the relevant knowledge such as understanding the three ways of transmission of AIDS; it is still difficult to for the average guy to sit and relax next to an HIV person.

Therefore, though HIV is a physical disease, it is also very much a psychological disease and a social disease, in that it ostracizes those with the disease whilst creating discriminatory attitudes in those who know of it.

"When I started uni, we had a health class to teach us about HIV/AIDs. But it didn't take long for it to be about homosexuals and them lot. The teacher just talked about what those people were like and the students just listened and agreed. That was it.” This was from the guy who went to uni in Hangzhou (a top 5 to 10 city in China).

This is the result of a misinformed professional teaching others more misleading information. Statistically, the percentage of HIV carriers in homosexuality is indeed relatively high, but to consider that “homosexuality is the main body of HIV transmission” is wrong as there are non-LGBT individuals who can infect HIV as well. This “teacher” could simply have said “homosexuality is a high-risk group for HIV” instead. It is this kind of misinformation that can easily lead to stigmatization.

“Actually, I would suggest it is high-risk behaviors rather than high-risk groups. As it is the behavior which causes transmission rather than groups of people.” Another said whilst holding his chopstick.

Here in China, HIV knowledge has already become part of the mainstream society. But what we need to pay more attention on is how to convey it properly and prevent stigmatization. No group is high-risk rather only the behavior is high risk. In fact, the LGBT people that I know are all very knowledgeable on the HIV subject, much more so than the heterosexual people around me and even partake in HIV tests a lot more often. Hence the LGBT community are a lot more transparent and collaborate together to prevent future transmission whereas it is heterosexual people who are more at risk nowadays.

If HIV exists as a mental illness, it will hurt those who are already HIV positive-

At their workplace, if they tell their workmates they risk being fired from their job leading to depression and maybe even suicide, hence HIV can even count as a mental illness.

Even in their own LGBT community, they may be stigmatized and excluded.

Everyone has a basic desire to share major changes in their lives especially when you can’t   carry the burden yourself. However, in this society; that burden is for them to bear alone.

 “Before I had it, there was an HIV carrier who liked me, but I rejected him”

They should have the right to love and the right to have the same intimate experiences as everyone else, but unfortunately HIV has become a barrier for them to have that right as well.”

“I’ve never thought about that.”

“Sigh, I don’t know what to do.”

Another person shared the story where his father died of AIDs yet their family was not infected. And similar stories such as these are reported quite often where the members of a family living with HIV had not been infected by others for decades.

I remember when I went to Peking University this time last year to participate in a WHO debate contest on the distribution of condoms. Organizers reminded us very seriously that we should not call them bi-yun-tao (pregnancy prevention hood) rather it should be called an-quan-tao (safety hood). Because condoms first and foremost are not to prevent pregnancies but to promote safer sex and to prevent the spread of HIV and other sexually transmitted diseases i.e gonorrhea, HPV, syphilis, etc.

But its difficult to explain this, because most would simply see it as a way of having sex without getting pregnant and not realize this danger.

Several people sitting on the table are probably single. When we started to talk about relationships, one of the them mentioned that in the past there was someone who liked him, he had never been in a relationship before but when he told him that he had HIV, he rejected him. He never thought he would be in the same tragic position as that person.

(In the Chinese language, there is no gender hence the translator/me presumed that both these people are men)

One of the carriers came from Hangzhou, he is currently in the process of choosing his major at university and wants to study media. “I think I developed quite early, I was already sexually aware by the time I was 8 and once I was in junior high and I was already doing it even with men who was a lot older than me.” Its likely that these men who were older than him didn’t use condoms but having said that its also likely that he didn’t mind as much either.

“Wow, you’re that young?! I’m like 10 years older than you, I’ve never even had a sexual encounter with someone as young as you.”

“Ah, but I have.”

I ask the guy sitting next to me “After you tested positive, have you done it since?”

“Its only been 5 days since I got my results.”

Next we chatted about our own history on coming out and we had nearly finished.

After we’d finished, they even came up to me and took selfies with each other. Through that, I went back to the role of a celebrity being adored by my fans.

But compared to being adored by others, I’d much rather learn about other people, their lives and how they are perceived in society. They do not need around the clock daily care and assistance. So for their sake, I don’t want to write an article about pity for. Hence this article isn’t actually written for them, but its written for you sitting in front of the computer and learning about a new community.

Around 9, we all went downstairs by the same elevator, some went home by metro, others got a taxi, a few even went back to work whilst me and my colleague went off to drink a few rounds.

This was a very pleasant meal, I have learnt a lot about a new community and even though they are different, I realize that they are not that different.