HIV has become a treatable condition, but the taboo surrounding it remains. On the occasion of World AIDS Day, Stéphanie (32) and Hany (24) explain what living with HIV means concretely.
“In my opinion, people with HIV are better off than someone who has cancer or diabetes”
Stéphanie (32) lives in Ostend and is a healthcare professional. After her HIV diagnosis, she started working as a volunteer with self-help group Sensoa Positive and is now almost seven months pregnant with her first child.
“The date of my HIV diagnosis is etched in my memory: November 17, 2017. I got tested because I got stuck on a patient’s insulin needle at work, but that turned out to have nothing to do with it. That left only one possible cause. I had only had one partner in my life and he had already confessed to me during our relationship that he had cheated on me – so I didn’t have to look for long.
Do not panic
At that moment my world came crashing down. Knowing little about it myself, I thought that if I had a few years at the most, I would quickly deteriorate and eventually die a slow, painful death. Fortunately, I was able to visit the AZ Sint-Jan Brugge-Oostende AV the same day, the Aids Reference Center (ARC, ed.) for the province of West Flanders. There, a doctor more or less reassured me: HIV had become a perfectly manageable and non-communicable chronic condition thanks to the available medication, I had a normal life expectancy and could even get pregnant without passing the virus on to my child. There was no need to panic.
Five years later, I can only confirm that HIV has absolutely not dominated my life. I used to take one pill a day and have my blood values checked every six months. Now that I’m pregnant I take three pills a day and there is a blood draw every three months, but that’s it. Furthermore, I go and stand where I want and I have to leave absolutely nothing. In my view, people with HIV are therefore better off than someone who has cancer or diabetes. Annoying side effects, a strict diet, heavy financial consequences: we are spared all those things.”
“In any case, I’m not someone who stays with the suits for long. Two weeks after my diagnosis, I was already attending a brunch for people with HIV and their environment organized by Sensoa (Flemish expertise center for sexual health, ed.), and shortly afterwards at a fellow sufferer weekend organized by Sensoa Positive. That helped me a lot, if only because I was surrounded by people who, although they had HIV, could just as easily be my dad, my sister or my neighbours. That made me realize that the virus has no color or orientation, but that it can literally happen to anyone – including a white, educated straight woman like me.
What also helped to give HIV a place was that I shared my diagnosis with my environment almost immediately. My family knew the day before, and in weeks after that, I told my work and friends too. Psychologically that made a huge difference: I didn’t have to bear my misfortune alone, and at the same time people made it clear to me that I was just Stéphanie to them.
That was very important for my self-confidence. After my HIV diagnosis I feared for a while that I was worth less than before, but luckily I got rid of that quickly. HIV positive or not, everyone is welcome and deserves love and happiness in life.”
“The only negative reactions came from colleagues at my previous workplace. There, some of them no longer wanted to sit at the same table with me or use the same toilet – as if that meant any risk. Today, such reactions still make me angry, but they no longer make me sad. Experience shows that there are many more people who want to learn what HIV really means today than people who turn their backs on you – for one nasty remark there are literally hundreds of positive reactions.
Because I am open about it myself, I am not bothered by the stigma surrounding HIV in our society. Personally, I think it’s a pity that people with HIV are so afraid of rejection and judgment that many keep their condition to themselves. Nothing is compulsory, of course: some people occasionally come to a weekend with fellow sufferers and that is enough. But for many, the secrecy still weighs heavily.
In conversations, I often advise people with HIV not to make it more difficult for themselves than necessary, and not to think in the place of others. Yes, loved ones will sometimes be shocked and ask bizarre questions – you may have done that yourself when you received your diagnosis – but that doesn’t mean they don’t handle it well. Usually they are just not well informed, and you can do something about that.”
“Shortly after my diagnosis, I couldn’t imagine anyone loving me, let alone accepting my HIV. In reality, there are many couples like me and my boyfriend who is seronegative. He had to bite the bullet for the first few months – do you know what you’re getting into, some people asked – but he himself never made it a problem, especially after we went to my doctor in the ARC together. He explained everything in great detail, after which my friend was done with it. Having sex without a condom has never worried us – otherwise I wouldn’t be pregnant now (laughs).
If I want to emphasize one thing about living with HIV, it is that it should not be so problematic and difficult. After Philadelphia and Dallas Buyers Club, hardly any films or series have been made that show how little impact HIV has today, but believe me: I have a very normal and happy life, and I am no exception.”
“The first question they ask you when you tell them you have HIV is rarely “how are you?”, but “how did you get it?”
Hany (24) studies moral sciences in Antwerp and has been HIV positive since he was nineteen. Today he testifies for the first time about his life with HIV.
“I never worried about my health after my diagnosis. HIV today is very different from the early 1980s, when people developed AIDS and died after a few years. Many remember the horrifying images of those days and the fear they aroused, but in the meantime we are talking about a completely different condition. Getting sick, dying prematurely: I shouldn’t be afraid of any of that. I have therefore told myself hundreds of times how lucky I am: I contracted the virus at a time when science had a handle on it, and moreover in Belgium, one of the best countries in the world in terms of healthcare.”
“Mentally, my diagnosis was a heavy blow. For example, during the first few months I felt extremely guilty about my infection. I hadn’t always used a condom during sex—wasn’t it my fault? Besides, we talked very openly about sex at home and my mother gave me loads of condoms. I even knew people with HIV. That made me feel completely stupid. A friend’s indignant reaction fueled that: hadn’t she repeated enough that I should be careful? It felt like I let everyone down.
Others told me that it doesn’t matter how often you have sex, that sometimes having unprotected sex once is enough and I was just unlucky, but I really didn’t believe that. In the meantime I can better see the context of my behavior back then. That I got a kick out of taking risks, for example, and that I thought in all my naivety that HIV barely affected young people. At the time, I also had myself tested every three months, which made me feel almost invincible. I had never contracted anything, I thought, so the chance of infection must not be that great.
Today I understand that I was just young and overconfident. But I also know that for many people it does matter how you contracted the virus. The first question they ask you when you tell them you have HIV is rarely “how are you?”, but “how did you get it?” – as if some deserve more understanding and warmth than others.”
“The biggest challenge was how I had to deal with my condition towards others. I had always been very open about everything, but I was a lot more careful about my HIV in the beginning. Especially since one of the first people I told, my best friend, panicked because she had drunk from my glass a week earlier: could she have contracted it too? That hit me hard. Would that be my whole life: constantly having to justify yourself, educate and reassure others about sex?
Fortunately, I was able to start medication quickly – first a pill a day, now an injection every two months – which has made me undetectable for four years now. I am healthy and cannot infect others in any way – then I have no reason to make an issue of it. Keeping silent about HIV would have made the problem bigger than necessary for me, while I could also explain to those around me that it is just that.”
“However, I don’t always take that for granted. For example, I understand that people are a bit shocked when they hear that you have HIV, but sometimes I just don’t feel like telling everything all over again and in the meantime also absorbing their emotions and fears. Put yourself in it while HIV has long been a problem for yourself fact of life without further ado – that is sometimes difficult.
Even with bed partners I don’t always know what the best approach is, especially if there might be more to it. In itself there is no reason to say it right away: the other person is not in any danger, so why should we discuss HIV if we do not do the same with other non-infectious diseases? On the other hand, you don’t want to wait until you have a good relationship with each other – then the other person may judge that you didn’t play your card completely open.”
“I come from a family and a field of study where everything is negotiable and I live in a big city – HIV is not a taboo in my life. Yet I also see how much ignorance and fear is still there. For example, I once had shards of glass in my hand at a job in a restaurant. The colleague who cared for me then knew that I was undetectable, but still reacted very nervous and scared. She put on gloves when caring for the wound, and eventually I was allowed to apply the plasters myself.
In addition, peers are not always up to date, and as a bisexual I find it slightly more difficult to talk to women about HIV. In my experience, men who have sex with men often know that someone on HIV medication does not transmit the virus and has a normal life expectancy, outside of that this is less self-evident.
At the same time, change will also have to come from people with HIV themselves. I understand that in some circles it can have major consequences to go public with your story, but more openness would contribute enormously to awareness of HIV and its normalization. The biggest problem is rarely a lack of goodwill, but a lack of knowledge.”
‘Not the transmission of the virus, but the stigma surrounding it is the biggest stumbling block for people living with HIV’, writes Sensoa spokesperson Boris Cruyssaert in this opinion piece on the occasion of World AIDS Day. “It’s high time to put that stigma behind us once and for all.”