Discovering yourself HIV positive: just thirty years ago, in France, this diagnosis was synonymous with a death sentence. Then curative treatments – which prevent transmission of the virus – and preventatives arrived, improving the living conditions of people living with HIV. And if, today, the fear of the virus has clearly faded, despite the progression of the epidemic over the last three years, preconceived ideas are still very present. According to a survey by the Aides association, which is celebrating its 40th anniversary this fall, more than three-quarters of French people think, for example, that it is possible to be infected by having unprotected sex with an HIV-positive person under treatment. , what is wrong. Illustration of a serophobic attitude, a consequence of bad information: less than half of those questioned would continue to see a person with whom they had sexual relations if they learned that he or she was HIV positive. How, in this context, can you build and experience your sexuality when you are HIV positive and under 35? And how do stubborn prejudices still disrupt the privacy of those first concerned?
Ahmed (1), 29 years old, medical technician in Marseille
“I found out I had HIV when I was 18. However, I still live with my parents, so I have to hide the three pills that I have to take a day even though they are huge boxes. I have zero libido, I feel dirty, even dangerous. I don’t yet know that, when we are under treatment and we are undetectable, we no longer transmit the virus. For four or five months, I had no sexuality. I go from a newly discovered teenager who fucks all the time to a guy who lives with extreme guilt. I became sexually active again a few months later. I am in the mindset of only telling the person with whom I will share my life, but not to passing partners. At 21 for example, I had my first serious relationship, it lasted a bit. I say it and it goes well, as it always did afterwards. Despite everything, today, the fear of rejection is still there. I talk about it to my friends, openly, but still not to my family or work. In the medical world, there is also still a lot of serophobic discourse… Otherwise, I live it well, I went from three pills a day to an injection in the buttocks every two months, that no longer defines me.
Mariama (1), 34 years old, home help in the Paris region
“In September 2023, I have been on French territory for a year to request asylum. I’m used to getting tested, so I do another routine check-up in a laboratory. This is where I discovered my HIV status. At the moment, it’s really difficult, I don’t believe it and I don’t accept this diagnosis. It’s like I’m in a black hole. I can’t find myself anymore, I want to end it. I am in care, but I am having difficulty following my treatments. After a few months, I start to accept my status, let’s say 50%. I am supported by associations like Actions Stratégies, it boosts my morale. But I feel incredibly stressed when I have to spend two days with my family. They have a habit of going through things and I’m afraid they’ll find out I’m living with HIV. So I don’t take the medicine with me, because they could go to the pharmacy to find out. Secrecy is also a way of protecting my child. I tell myself that it’s time that will help me. It’s barely been a year. Today, I’m taking my treatment well, it’s already a big step for me.”
Alex (1), 26 years old, in marketing in Paris
“Five years ago, I contracted HIV while I was on exchange abroad for my studies. I immediately think that this is the end. In morals, AIDS is dirty, dangerous, associated with death, etc. It’s a collapse. I told it straight away to my partner, whom I met there and who is now my husband. At first, things go badly, because he is convinced that he too has the virus. He is devastated, but after a battery of tests, he is indeed HIV negative. He decides to fight with me, follows me to France and we climb back together. I tell my sisters about it, but it takes me at least two years to tell my friends about it. It’s like coming out again. Once I said it, I felt super good and relieved. When the subject comes up in the evening, from now on, I discuss it freely. Above all, I realize that we are not informed enough. Since I’ve been talking about it, people have been asking about it. We see that I live very well and that I am like everyone else.
Sophie, 35 years old, stay-at-home mother in the Geneva region (Switzerland)
“I was contaminated by a syringe in the hospital during my first year of life in Romania. After my adoption, I arrived in Switzerland. My parents talk to me about the virus in childish language. They tell me that we must help the little blood soldiers. In 1998, the International AIDS Conference was held in Geneva. I’m 8 years old. I discover that I am not alone and then I understand what it means to be HIV positive. When I met my partner, eleven years ago, he was also suddenly catapulted into the world of HIV the day a condom broke. At this time, my viral load was still not undetectable. When my viremia became viremic a few years later, we decided to have a child. I can finally have unprotected sex. This is the first time that the virus no longer has control over my life. It makes me feel really good. The pregnancy is going well. I can breastfeed for a while. This is the last symbolic ban that falls. When, two years later, in the middle of a pandemic, we receive the negative results for our baby, we pop the champagne: having a healthy child is a great revenge on life. The moral is that being undetectable offers great freedom and it takes away a burden.”
Tommy, 30 years old, professional dancer between French-speaking Switzerland and Barcelona (Spain)
“When I learned of my HIV status, in the summer of 2022, I had images of the late 1980s in mind, these feverish and frail bodies that we saw a lot in series or films like 120 Beats per minute. I’m starting to be afraid of being the sick one in the family, especially since in Switzerland, health is very expensive. What followed was a summer of total depression, with suicidal thoughts, although I had the support of my close family. I also received this diagnosis in the middle of the mpox epidemic, at a time when we are constantly talking about contamination between men on TV… I don’t know if I should talk about it or to whom. I still choose to tell it to a few friends in Paris who are very open about their sex lives, and it makes me feel good not to feel judged by my actions. I then got back on track thanks to my psychologist, who is also homosexual and HIV positive. I am learning the notion of the private sphere and also how to free myself from guilt. But it takes me time to rediscover myself sexually, to reclaim my desire, to even tell myself that I have the right to have desire. Today, most of my close friends know about it and I take it well, even with irony, while avoiding romanticizing the thing. I’m just asymptomatic of an infection.”
(1) First names have been changed.
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