'HIV is happening to young people - we need to stamp out the stigma'

Model, art student, beauty queen – and carrier of a potentially killer infection. As National HIV Testing Week kicks off, 24-year-old Horcelie Sinda shares her story and appeals to all ages about the importance of testing

For the first 11 years of my life I had no idea I was HIV-positive. I had moved to London from Congo when I was nine, and three years later my mother discovered she had the infection. Then concerned about my health, she took me to see a doctor - even though I didn’t have any symptoms. I later learned the virus worked slower in me, which meant I could live for years without any symptoms or medication.

My mother wasn’t present when the doctor told me I was born with HIV. The memory is quite blurry, but I remember feeling overwhelmed about the unknown, and thinking I was going to die. I didn't discuss the diagnosis with my mum afterwards (in African culture you don't tend to talk about illness), and I had to keep these feelings to myself. And here starts the problem. Carrying HIV is such a taboo subject; no one has a conversation about it. Today, that is what I’m trying to change. But it's important for me to say that I don't blame my parents, it's life. It happens.

For the next ten years I didn’t tell anyone I was a carrier except my best friend, who I told a year later when I was 12. Her reaction wasn't positive or negative because like so many people, she didn't know what HIV was. We were only children after all - but she was supportive and it never changed our relationship. She never viewed me any differently and she's still my closest friend today. When I was 21 I decided to be honest with the world and with myself. I began telling people and not pretending my medication was for something else, and I immediately felt like a weight was lifted. Now I’m 24 and although I’m not living a lie, I'll admit, telling people doesn’t get any easier.

However, I’ve never received abuse for being HIV positive. When I was crowned Miss Congo UK 2017 my story went viral I received a few nasty comments ('why are we talking about this girl when she's HIV-positive?') on Instagram, but I know that because I’ve been open other carriers are able to live a less lonely life, so a few negative comments here mean nothing for the bigger picture.

As soon as I was diagnosed I was prescribed medication to treat the infection and help me live longer. Fortunately, I’ve had no side effects from taking my prescription every day, and it means my three tablet dosage has now been reduced to one daily (quantities vary for each person).

My diagnosis has definitely affected my views on having a boyfriend. Some guys see it as a disease, which it isn’t, and they don’t know how to behave. But mostly it hasn’t changed men’s attraction towards me, and vice versa. I’m currently single and going on dates, but as a Christian I don’t believe in sex before marriage, so we don’t ever need to have the conversation surrounding protection. I tell every person I date about having HIV because I want to avoid getting hurt in the long run, and I don't want them to feel stressed about the situation. I also don't want anyone to feel sorry for me.

I went on a date with one guy recently who was also HIV-positive. After, he didn't call me and follow up our date, which sucked - but my point is, just because someone shares a life experience with you doesn't mean they are the right person for you. HIV doesn't define you and you don't need to categorise yourself to only date other positive people.

AIDS is still the second biggest killer of young people worldwide (behind road accidents), because many don’t have access to treatment or don’t even know they have HIV. This year, National HIV Testing Week is calling on people to ‘Give HIV the finger’ by taking a simple, painless and quick finger prick HIV test.

Raising awareness of sexual health is so important, because reducing the number of people diagnosed at a late stage of HIV infection means you can be medicated sooner and reduce the risk of getting seriously ill – plus it reduces the risk of the virus being passed on to others. Testing is nothing to be feared or embarrassed about. There is nothing embarrassing about making sure your sexual health is a priority.

I always try to remind myself that people are dealing with so many worse health challenges than me. I feel grateful that I am well enough to be fulfilling life goals, like graduating with a Fine Arts degree from Chelsea College of Arts, but there is still a huge stigma around HIV and AIDS and it will take years to move forward. For example, while being positive doesn't bother any of my friends, people ask them why they speak to me when I'm HIV-positive, and that they should stay away. I also get asked about dating a lot: whether I can, is it safe and can I pass on the virus (disclaimer, no, you can't if you take your medication).

I’m determined to help people on a global scale by campaigning and holding talks and workshops in the UK and Africa. In the UK we have so much access to free healthcare and support so please - take care of yourself and then you’re not just saving your own life, you’re saving somebody else’s, too.

Keep up with the campaign on social media by following @startswith_me and using #HIVTestWeek. For more information about National HIV Testing Week, go to startswithme.org.uk/