Is it easier to live with HIV than with the stigma that surrounds it?

Laurence Hendrickx en Melissa Ceuterick
30 November 2023 |

HIV, the virus that causes AIDS, surfaced in the eighties. Long gone are the times when the virus was a sure death sentence. Still, even after all these years the stubborn stigma that surrounds HIV persists. Why is that and what can be done about it?

Ghent University employee Laurence Hendrickx was told on her birthday in 2007 that she was pregnant. But at the same time her world came crashing down. It wasn’t just the pregnancy test that was positive. As it turned out, she was HIV-positive as well. After the initial shock, the fear hit: ‘What if I die?’. But her main concern was for her children: ‘Can I transmit the virus to my baby?’ or ‘Will my children be bullied if people know I have HIV?’.

So Laurence decided to keep it a secret, for fifteen long years. Until now, because together with Christophe Ramont she made the VRT podcast Positief about living with HIV. Laurence: “Until recently, even my colleagues with whom I worked around HIV and reproductive health had no idea!”

One in seven tell no one

Melissa Ceuterick, health sociologist at Ghent University, recognises this tactic from surveys. A recent survey by Sensoa showed that the majority of HIV-positive people are extremely careful when it comes to outing themselves for fear of discrimination and rejection. “One in seven tell no one about it”, quotes Melissa.

“And that is very tough mentally”, Laurence knows. “Bea Van der Gucht is a doctor who works at the HIV reference centre of Ghent University Hospital and states that the stigma surrounding HIV is more lethal than the virus itself. I think she couldn’t have said it any clearer.”

The image of HIV hasn’t evolved along with the treatment

Melissa thinks the persisting taboo surrounding HIV is partly caused by fear. “In 1987, the first HIV campaign in Flanders was mainly meant to frighten people. The dramatic message ‘Open your eyes before AIDS closes them’ leaves little to the imagination. Moreover, the tone of voice was very moralising: the advice of one steady partner perpetuated the idea that HIV was the result of a promiscuous lifestyle."

Meanwhile the treatment of HIV has made tremendous strides. Laurence: “With the right medication, people with HIV have a normal life expectancy and HIV is no longer detectable in the blood. No longer detectable means you can no longer transmit the virus, not even through unprotected sex. So there is no more reason to be afraid.”

Meilssa Ceuterick

Health sociologist Melissa Ceuterick: "In 1987, the first HIV campaign in Flanders was mainly meant to frighten people. Moreover, the tone of voice was very moralising."

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“But the perception of HIV hasn’t evolved along with the treatment, in particular among people of my generation”, Laurence continues. “Young people look at HIV very differently. They never experienced the witch hunt of the 1980s. As a result they give less thought to HIV and STDs and how they are transmitted. This means raising awareness is not just important to remove the stigma but also to counter ignorance regarding the virus. Because even today an average of two people per day are told they have contracted HIV.” 

“It’s a chronic disease, so what?”

People who receive an HIV diagnosis sometimes suffer from self-stigma. They judge themselves precisely because of the prejudice of others. How you think others will judge you reinforces this self-stigma and stands in the way of acceptance.

Laurence: “For a long time I thought about the right moment to tell my children because I wanted them to be resilient enough to handle the news.” But their reaction was: “It’s a chronic disease, so what?. It made me realise that stigmatising HIV was less of a problem in their lives than I had expected. “The chronic stress I had carried around for sixteen years was alleviated, became less, every time I told someone. A weight has been lifted off my shoulders.”

The Magic Johnson effect

Melissa feels that public campaigns and sharing accurate information in the education system and healthcare training programmes is crucial. But recognisable, popular (media) figures can also help to break the us-versus-them pattern resulting from the negative labelling of those with HIV.

“This brings to mind the Magic Johnson effect”, says Melissa. “Magic Johnson is a legendary heterosexual NBA player who contracted HIV during his marriage. His announcement that he was HIV-positive had a major impact. Suddenly people could identify with someone who had HIV. This resulted in many more heterosexual men getting tested, with an estimated 800 individuals increasing their life expectancy by ten years thanks to adapted medication.”

Laurence: “Sharing your HIV status is a personal choice but it can contribute towards making HIV a topic of conversation. That is why I was so eager to make the podcast with Christophe. Our paths are totally different. He is gay and was only recently diagnosed. That difference enriches the perspective on HIV and considerably enhances its recognisability. Perhaps the popular Flemish soap opera Thuis should also introduce a character with HIV to help break down the taboo even further”, Laurence suggests.   

Laurence Hendrickx

Podcastmaker and Ghent University staff member Laurence Hendrickx: “It may seem trivial but language is not non-committal. I’m not ill, I am not a victim of AIDS. I lead a normal life. My HIV status is just one aspect of who I am."

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Don’t trivialise or dramatise, but normalise

Correct language is also a useful crutch to help remove the stigma surrounding HIV. Melissa emphasises: “If you want to discuss HIV, don’t speak in metaphors. Like Susan Sontag explains in her essay on disease as a metaphor, people with HIV are unconsciously reduced to a passive patient position.”

Laurence concurs: “It may seem trivial but language is not non-committal. I’m not ill, I am not a victim of AIDS. I lead a normal life. My HIV status is just one aspect of who I am.” On the other hand some reactions are overly patronising. Laurence: “In our podcast we deliberately search for that balance between the right information and a humorous touch without turning it into a joke. Don’t trivialise or dramatise, but normalise.”

PODCAST 'POSITIEF'

What comes next after your diagnosis? In the VRT podcast Positief (in Dutch), Laurence and Christophe go in search of answers. The five episodes alternate personal experiences with the sharing of knowledge. The podcast is available on VRT Max.

Laurence Hendrickx is a Societal Outreach policy maker with the faculty Public Health and Primary Healthcare at Ghent University and maker of the VRT podcast Positief about living with HIV.

Melissa Ceuterick is a health sociologist affiliated with the research group Hedera (faculty Sociology, Ghent University) and Ghent Health Psychology Lab. She conducts research on the stigma surrounding the use of medication and mental well-being among young people.

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