Confront HIV/AIDS Stigma and Come Together as an Ally

This article is also available in Simplified Chinese.

Earlier this year I watched a British TV drama called “It’s a Sin.” It’s a story about a group of gay characters and their friends, confronted with the reality of death and loss during the AIDS crisis in 1980s. Back then when HIV/AIDS was still unknown and mysterious, the characters infected with HIV in the show were considered ominous and immoral because of their sexual identity, which was then often associated with the disease. A similar experience is also portrayed in HBO movie “The Normal Heart.” Both works not only show the struggle of the LGBTQ community, but also disclose how people with HIV have been stigmatised and criminalised by mass media, medical reports, and governmental institutions.

During that time, AIDS was not just a disease but replete with punitive metaphors.  The metaphors associated with AIDS stigmatised those who were affected and often prevented them from seeking proper medical treatment.

Thirty or so years passed, and things have changed since then. Nowadays, HIV treatment as prevention along with the uptake of PrEP have led to declines in HIV infection. People living with HIV (PLHIV) can also live normal and healthy lives, and a HIV diagnosis is no longer considered a death sentence. Having said that, have people’s attitude towards HIV or PLHIV changed with the times?

While the time and treatment may have changed, unfortunately HIV stigma remains as misinformation and false beliefs around HIV/AIDS are still prevalent today. We can’t point out the problem and deal with it without mentioning “the elephant in that room.” It often enters our mind that the stigma and discrimination surrounding HIV/AIDS are just the violent and aggressive language to PLHIV or derogatory references in the media. We need to think far beyond these.

In the LGBTQ community, those with HIV often find it difficult to develop a further relationship with people from dating apps or bars after they disclose their status. More often they are given a cold shoulder or blocked on dating apps. HIV stigma and discrimination are internalised. Those who specify “negative only” in their profile on apps claim they are protecting themselves and don’t think they are discriminating. For me, I would feel marginalised and doubt myself if I have experienced stigma and discrimination like that.

I believe most people have experienced loneliness and social isolation since the COVID-19 pandemic hit last year. Many people infected with HIV have been no stranger to similar rejection, loneliness, and lack of support from others. Self-doubt can occur after constant rejection, and they shut themselves away and struggle in intimate relationships with their partners. In some countries, employment continues to present challenges for those living with HIV. Pre-employment medical tests requested by some companies forces HIV-positive individuals to give up their job offer. Furthermore, will they be embraced and supported if their family finds out they are HIV-positive?

As a part of the LGBTQ community, I am happy but not complacent about being HIV negative and won’t see myself superior to those with HIV. Rather than become an accomplice to discrimination and stigma without being aware of it, I am more willing to be their ally.

What can we do to be their ally? First of all, we should make sure that the correct information about HIV is accessible to everyone. Misinformation and unwillingness to understand results in stigma and discrimination. Take “U=U” for instance. It is now clear that “Undetectable” means “Untransmittable”.  People with HIV who have an undetectable viral load cannot transmit the virus and needn’t feel worried that their partners might get infected. Similarly, it is unnecessary for those without HIV to worry that they will have HIV through sex. Avoiding infection is not an excuse you can use to discriminate against people living with HIV. In Australia, PrEP is readily accessible now and recommended by clinicians to patients who are at risk. Thus, the concerns about being infected easily should be dismissed from a medical point of view.

What’s more, we can also be a listener. Even though we can’t totally put ourselves in the shoes of people with HIV, we can still listen with empathy. Showing empathy means being a sympathetic listener and companion. I will feel very honoured if a person discloses their HIV status to me. One of my friends once confided to me in despair that he was diagnosed HIV positive and expressed his feelings on the phone.  Looking back on it, I didn’t try my best to support and listen to him. He left Australia afterwards and I lost contact with him. I still feel guilty and hope everything is ok with him.

Chinese homosexuals often refer to themselves as a part of “Tongzhi Quan” (LGBTQ community) as though they were joining a club—and can join or quit at any time. I prefer to think the community is open and not exclusive.  Everyone can get involved and contribute to the community.  Instead of confining ourselves to any group, we should come together and show our solidarity.

Everyone can make a big difference no matter who you are—family, partners, or friends of PLHIV. No one should be left behind and on their own. We are here for each other. And if you ask me if I feel positive or optimistic about the future, well, I always believe tomorrow will be brighter.

Andy Xie lives and works as a corporate employee in Melbourne. He hosts a Mandarin podcast for the queer community as his B-side. He enjoys collecting stories through conversations and voicing his unique opinions within the Chinese queer community. Andy’s non-binary cat keeps a social distance from him most of the time, but still speaks with him when they are hungry or lonely.