HIV has become a treatable condition, but the taboo surrounding it remains. On World AIDS Day, Stéphanie (32) and Hany (24) explain what it actually means to live with HIV.
“In my opinion, people with HIV are better off than people with cancer or diabetes”
Stéphanie (32) lives in Ostend and is a healthcare worker. After being diagnosed with HIV, she started volunteering with the self-help group Sensoa Positive and is now nearly seven months pregnant with her first child.
“The date of my HIV diagnosis is engraved in my memory – November 17, 2017. I took the test because I got stuck on a patient’s insulin needle at work, but it turned out that it had nothing to do with it. Only one possible cause remained. I had only had one partner in my life and he had already confessed to me during our relationship that he cheated on me so I didn’t have to search long.
Don’t panic
In that moment my world collapsed. Knowing little about it myself, I thought that if I had a few years at most, I would rapidly deteriorate and eventually die a slow, painful death. Fortunately, on the same day I was able to visit the AZ Sint-Jan Brugge-Oostende AV, 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 drugs, 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 took one pill a day and had my blood values checked every six months. Now that I’m pregnant I take three pills a day and every three months there’s a blood draw, but that’s it. Also, I go and stay where I want and I don’t have to leave anything at all. In my opinion, people with HIV are therefore better off than those with cancer or diabetes. Annoying side effects, strict diet, heavy financial consequences – we are spared all of this.”
Only Stephanie
“In any case, I’m not one to stay in suits for long. Two weeks after my diagnosis, I was already at a brunch for people with HIV and their environment organized by Sensoa (Flemish competence center for sexual health, ed), and a little later at a weekend of fellow sufferers of Sensoa Positive. This helped me a lot, if only because I was surrounded by people who, despite having HIV, could very well have been my father, my sister or my neighbors. This made me realize that the virus has no color or orientation, but that it can literally happen to anyone, including an educated, white straight female like myself.
What also helped give HIV a place was that I shared my diagnosis with my environment almost immediately. My family knew about it the day before, and over the next few weeks, I told my work and friends as well. Psychologically this made a huge difference: I didn’t have to bear my misfortune alone, and at the same time people made me realize that to them I was just Stéphanie.
This has been very important for my self-esteem. After my HIV diagnosis I feared for a while that I was worth less than before, but luckily I got rid of it quickly. HIV positive or not, everyone is welcome and deserves love and happiness in life.”
Weird questions
“The only negative reactions have come 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 some risk. Today such reactions still anger me, but they no longer sadden me. Experience shows that there are far more people who want to know what HIV really means today than people who turn away from you – for one nasty remark there are literally hundreds of positive reactions.
Since I’m open about it myself, I’m not bothered by the stigma surrounding HIV in our society. Personally, I think it’s a shame 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 come to a weekend with fellow sufferers every once in a while and that’s enough. But for many, secrecy still weighs heavily.
In conversations, I often advise people with HIV not to overcomplicate themselves and not to think for others. Yes, loved ones will sometimes be shocked and ask bizarre questions — you may have asked yourself when you received your diagnosis — but that doesn’t mean they don’t handle it well. They are usually not well informed and you can do something about it.
Carefree
“Shortly after my diagnosis, I could not imagine anyone loving me, let alone accepting my HIV. There are actually many seronegative couples like me and my boyfriend. He had to grit his teeth for the first few months – do you know what you’re getting yourself into, some people have asked me – but he himself never made a problem of it, especially after we went to see my doctor at ARC together. He explained everything in great detail, after which my friend finished. 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’s that it shouldn’t be so problematic and difficult. After Philadelphia and Dallas Buyers Club, hardly any movies 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 the age of 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 within a few years. Many remember the gruesome 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 repeated to myself hundreds of times how lucky I am: I contracted the virus at a time when science was dealing with it, and moreover in Belgium, one of the best countries in the world in terms of health care”.
Too much security
“Mentally, my diagnosis was a huge 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 that my fault? We also talked very openly about sex at home and my mother gave me a lot of condoms. I also knew people with HIV. This made me feel completely stupid. A friend’s indignant reaction fueled him: hadn’t she repeated enough that I had to be careful? She seemed to me to have let everyone down.
Others told me that no 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 it. Meanwhile I can see better the context of my behavior then. That I liked taking risks, for example, and that I thought in all my naivety that HIV barely affected young people. At the time, I was also getting tested every three months, which made me feel almost invincible. I’d never contracted anything, I thought, so the chance of infection shouldn’t have been that great.
Today I understand that I was just young and overconfident. But I also know that for many people it matters how you got 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.”
No problem
“The biggest challenge was how I had to deal with my condition towards others. I’ve always been very open about everything, but in the beginning I was much more attentive to my HIV. Especially since one of the first people I told, my best friend, panicked because she had been drinking from my glass a week earlier: could she have contracted it too? She hit me hard. That would be my whole life: constantly having to justify, educate, and reassure others about sex?
Luckily, I was able to start medication quickly—first one pill a day, now one injection every two months—which made me invisible for four years. I’m healthy and can’t infect others in any way, so I have no reason to make a problem of it. Keeping quiet about HIV would have made the issue bigger than necessary for me, while also being able to explain to those around me that it is just that.”
Capturing fear
“However, I don’t always take it for granted. For example, I understand that people are a bit shocked when they hear you have HIV, but sometimes I just don’t feel like telling it all over again while also absorbing their emotions and fears. Put yourself out there while HIV has long been a problem for yourself fact of life without further ado – sometimes it’s hard.
Even with bedfellows I don’t always know what the best approach is, especially if there could be more to it. In itself, there’s no reason to say it right away: the other is in no danger, so why discuss HIV if you don’t 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 haven’t played your card wide open.”
Ignorance
“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 there is still. For example, I once had shards of glass in my hand while working in a restaurant. The colleague who took care of me knew I was undetectable, but he still reacted very nervous and scared. She wore gloves when tending to the wound and I was eventually allowed to apply the plasters myself.
Also, peers are not always updated, 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 this it is less apparent.
At the same time, change will also need to come from people with HIV themselves. I understand that in some circles it can have major ramifications to go public with your story, but more openness would go a long way towards HIV awareness and normalization. The biggest problem is rarely the lack of goodwill, but the lack of knowledge.”
“Not the transmission of the virus, but the stigma surrounding it is the biggest obstacle for people living with HIV,” writes Sensoa spokesman Boris Cruyssaert in this opinion piece on the occasion of world AIDS day. “The time has come to leave that stigma behind once and for all.”
