According to the most up-to-date research, over 100,000 people are estimated to be living with HIV in the United Kingdom. Over 2 million people globally became HIV+ in 2015, and while 17 million people are now receiving treatment, 20 million people are still waiting.
These numbers are huge, and when stories are told on such a scale it’s often hard to identify, to understand what this all means. The reality is there’s still an alarming amount of stigma attached to HIV, and not enough being done by those in power to combat it. Drugs are expensive, education is close to non-existent, and at every level there’s an unwillingness to talk.
But this week five young HIV+ Brits are heading out on a tour of the United Kingdom, determined to share their experiences and start conversations. They hope by sharing their stories they’ll get us talking, force change on a local, national and international level, and ensure better education, better funding, get political leaders take a stand.
Before they set off on their month long journey, we caught up with each of the inspirational speakers. These are their stories.
Alex Causton-Ronaldson, 27
I’ve done quite a few interviews in the past about living with HIV. I was on Channel 4’s First Dates TV show, and I’d recently broken up with my boyfriend of a year and a half, and so as you do I started going out again.
It took a bit of getting used to, and to be honest the apps and the clubs just didn’t feel right anymore. I wanted to do something different, so I applied for the show.
Being HIV+ was still pretty new for me when I was accepted onto the programme, I’d only been diagnosed a year previously. My boyfriend and I had navigated it together at first, he’d accepted me. Then suddenly I had to work it all out again.
You have to tell people, which even on your own terms can be difficult. So when the production company on the show tried to force me to to disclose my status as HIV+ to my date before filming, I wasn’t happy. I was in an interview with the show’s psychotherapist and I told them I was on anti-retrovirals. Suddenly Channel 4’s lawyers were running round yelling I was a high risk unless I disclosed. It completely dehumanised a very personal and raw situation.
They said they’d prefer that I told him on TV, which I refused. It was horrible, so I pushed back. When you go out on a date, being HIV+ is always going to be playing on your mind. I’m open about my status, but I’m lucky to be able to do that, there are a lot of people who can’t be.
I never thought I’d be doing something like this speaking tour though. I was at a peer support group when I was first diagnosed, and a support worker turned to me and said: “There will come a day when you don’t think about HIV everyday.”
I replied saying how that would be impossible, I take pills everyday that remind me. It was the most amazing feeling to suddenly realise one day I just hadn’t thought about it for a while. Now I talk about it nearly everyday, but out of choice.
We need to end the stigma, people just don’t talk about HIV. I think that’s the biggest harm still.
At the end of the day I can live a long and healthy life, I can’t pass the virus on, I could live longer than any of you. Because I contracted HIV through having unprotected sex, automatically people judge me, make decision about me, think they know who I am.
If I could speak to myself back then, when I was diagnosed, I’d say take it one step at a time, don’t do too much too quickly. Take time to process it. It’ll be okay.
Horcelie Sinda Wa Mbongo, 22
My mother started giving me medication at 10-years-old. I didn’t really ask what it was for – she said “just take it, it’s good for you.” The doctor explained it to me, what it was and what it does to the body. She said some people are born with it, and other people aren’t. I am a straightforward person so I kept thinking, where’s she going with this? And then she paused, and I asked: “Does this mean I have it?”
This was in Britain – I was born in Congo but grew up in the UK. As a parent, you have a choice: you can tell your child or get a doctor to. I think it was better that it was the doctor, she was very calming. I have never ever discussed this with my mother. Later on, she just told me to make sure I was taking medication every day. She never sat me down.
Growing up into adulthood or teenage life, the hardest thing about living with HIV is you see all your friends living life, you know you could have boyfriends and try things… and you’re just sitting around going: “okay, can’t do that.”
The hardest part was accepting it and getting over the shame, accepting what you were given through someone else’s actions, not your own. As you mature in life, you learn to accept certain things that you cannot change. And those that you can, you try to. None of my siblings were born with it, I was the only one. The biggest thing I did was forgive my parents.
When I enrolled in the Miss Congo UK pageant, I did it for its political side. As part of it, you have to do a speech, and I chose for that to be the first time I would disclose my status. I’m not the kind of person who goes with the flow, but I decided I would take what I was given and use it to help others, especially in Africa. I’m hoping that through telling other young people how I came to accept my status and used it to be stronger, I can help them do the same.
Jimmy Isaacs, 28
The thing is we just don’t talk about this virus enough; the only reason stigma exists is because of a lack of education. Schools aren’t educating their kids on sexual and relationship education, the last national campaign around HIV was 27 years ago, those falling tombstones. There’s been no followup education to the public.
I decided to go public, disclosing through social media, although it took me a while to find the words. I’d actually gone out for a few drinks with some old bandmates, and I’d told them about my diagnosis. I dropped them each a text on my way home, and I realised then that these were the words I wanted to use. I posted it on Facebook.
“I’ve had a pretty shitty year, but if you can’t look back at it and say that you’ve learnt from it then what good is there saying you’ve both lived life, and enjoyed it. Trust me it’s not nearly as bad as you think, far from a death nail I’m planning to use this experience to teach others and dispel the social stigma that surrounds it. Yep, I’m HIV+, but I’m still Jimmy, and I’m planning on outliving you both gracefully and disgracefully. Learn to live learn to love, and don’t look back with regrets, ever.”
The response was phenomenal. People I know, people I didn’t know, people who I’d known for years and who’d also been living with the virus were now wanting to talk about it.
We need to learn, to educate, to protect ourselves. Whether positive or negative we need to help break down barriers. For me disclosing was a liberation: either I could live in fear of this or I can own it. I’m doing the latter.
Krishen Samuel, 30
In 2009, I went for a standard battery of tests. I had been tested for HIV many times in the past and all of the tests were negative, and this one time I discovered that it came back positive, which was quite a shock . This was back in South Africa, and I was 22 at the time. It was probably the most significant thing that’s ever happened to me.
When it actually happens you wonder how it’s actually going to affect your life. Firstly, you have all the health and mortality questions: Am I going to die? Am i going to have a normal life expectancy? And then there’s also the stigma and the shame of: how could I have let this happen?
When I received my diagnosis, it came as a shock to me, because despite all the prevention messaging, with all of the campaigns, knowing about safer sex and how to protect myself, I still became HIV positive. So you do a lot of self-reflection and questioning, but ultimately it’s about deciding how to actually use that to re-define yourself.
HIV is stigmatised globally – in certain countries especially. In the western world, the epidemic has been talked about for a lot longer, since the 80s. So here there’s a bit more of a desensitisation, it’s almost seen like it’s not a problem anymore.
The type of stigma that I tend to deal with is in terms of dating, romantic relationships. It’s a constant challenge in terms of disclosure: When do you tell somebody? How do you tell them? What’s their response going to be? Are you going to be rejected? You have to be educating people all the time. It’s a constant negotiation process.
I guess I’ve become an activist, now. I haven’t been this public about my status at this level before. This is new to me, but I’m excited about the opportunity, and to spread the message that HIV is still there, people are still dying from AIDS. Through our personal stories we can change this.
Becky Kroger, 22
I was 14 when I moved to the UK. Growing up in South Africa was nice, most of my childhood was spent living in a children’s home, which at that time was for children in emergency care and children with HIV. It was a good experience; in the home we talked openly about HIV.
As it was openly talked about, and we were quite young, they referred to HIV as the “bug in your blood”. That’s how we learnt about it, but as we developed more we’d be taught in more detail about what was happening, why we were there. The home was open with us, there was no shame attached.
Primary school was a hurdle we had to get over, kids there didn’t know we had HIV, but there was a sense of something, as we were all living in a home.
In my primary school there was a specific lesson about HIV and AIDS. Kids were taught the facts. Any bullying was only because people didn’t understand, it was their way of processing the information. Kids would ask us how we feel about living with HIV, about not having parents. We educated each other back then, just in a childish way.
I’m doing this tour because it’s an important opportunity to speak out and break that hush-hush attitude. If people ask me questions I don’t want to feel judged, I want to be confident within myself, so people go away with knowledge and understanding.
I want people to know that being HIV+ is nothing to be ashamed of, to be confident in yourself is key, to trust and be honest and open with those who love you. There’s nothing better than that weight being lifted off your shoulders. We are humans, and pretty great humans if I say so myself.