“The main challenge I face is people’s ignorance – and their choice to remain ignorant after learning what a HIV diagnosis actually means.”

Becky is 33. Alongside the usual shtick of juggling work, family and the minefield otherwise known as internet dating, she also has HIV. Over 100,000 people in the UK have the virus, a third of whom are women. But despite it being 2019, public knowledge around HIV remains dire, and women like Becky are dealing with the consequences.

“Dating is challenging because I want to tell this person about my HIV. But when’s the right time? Online, before we meet? During the first date? Before sex? Never? It’s complicated because as much as I know that my HIV will have zero impact on their health, they still believe it will.”

So what are the facts? Quite simply, HIV treatment is one of the biggest success stories in the history of modern medicine. A far cry from the ‘death sentence’ of the 80s, people on effective medication can be healthy and have a normal life expectancy. Daily tablets suppress the HIV virus to such low levels (known as ‘undetectable’) that it cannot be passed on through unprotected sex – a scientifically proven fact known as ‘Undetectable equals Untransmittable’ or ‘U equals U’. Consequently, people with HIV on effective treatment have no legal obligation to tell partners. Treatment also means HIV positive women can expect not to pass the virus on to their children.

“U equals U has been life changing for the HIV community, as it’s removed the worry of passing the virus on to your partner,” says Jo, who works in communications and has HIV. “But if you’re trying to find someone through a dating site and you tell them your status before they’ve even met you, they’ll choose someone without the virus. Despite the science and not knowing you, they’ll probably think ‘I bet she’s a bit screwed up’.” 

Becky has experienced such responses first hand. “As a single working mum I mostly date online and the main response I get is a block or gentle ghosting,” she says. “Men say they’re OK with it but then suddenly become very busy.”

Sometimes the response can be more blatant. “One guy said I took his choice away from him because we’d already had sex before I shared [my status]. At the end of the day, HIV positive people on effective treatment do not have to tell you their status, even if you do have sex.

“If I share my status with you it’s a privilege. Others still believe that if you have HIV then you must’ve done something ‘wrong’ and treat you like you’re ‘dirty’. And all the evidence in the world is not changing that stigma.” 

HIV stigma – the negative attitudes and beliefs directed towards people with the virus – is a huge problem in the UK, destined only to disappear with widespread, up to date education. The 2018 Invisible No Longer survey performed by Terrence Higgins Trust showed that two thirds of UK women with HIV are not satisfied with their sex lives. Many also reported issues with intimacy, fear of having sex and low libido. More than half have experienced violence because of their status and as a group, HIV positive women remain underrepresented in both medical research and the media.

“It’s great that we have ambassadors like Gareth Thomas and Prince Harry, but there are no HIV positive female role models in the media,” says Becky. “There will be someone out there in the public eye who is positive and I would love her to stand forward because our community needs it.”

Jo agrees. “The media portrays us as victims. It really pisses me off and just perpetuates stigma. I’m not a soap opera sob story. I’m an ordinary, happy person who happens to have HIV.” 

Nobody is immune to HIV but certain groups are more affected by others, namely men who have sex with men (MSM) and the Black African community. Black African women bear a disproportionate burden and many are diagnosed with HIV at a late stage, when health complications may have occurred and infection already passed onto others.

Mercy is a 21-year-old black African woman who uses her own experience to encourage others to test and support other young people with the virus.

“It’s always been bizarre to me that something that affects so many people in our community is spoken about so rarely,” she says. “People won’t test because they’d rather pretend HIV doesn’t exist. If you do test positive, familial and societal reactions can make relationships very difficult. I also think the science behind ‘U equals U’ is largely unknown but also dismissed by many.”

Becky agrees. “Even if men do trust the ‘U equals U’ science they may not trust you. If you have HIV then you’ve done ‘something to deserve it’, so how could they trust you to tell the truth about being undetectable?”

So what’s the best reaction to sharing your status? “When they have no reaction at all,” says Becky. “When someone just says ‘OK’ and we move on. I’m not going to thank people for accepting my HIV –why should I? It should just be like that. I’m always happy to answer questions but I don’t dwell on people who don’t accept it. If they have an issue they are out of my life.

“Ultimately I feel pity for those who choose not to accept me, and anger towards a system and society that chooses to judge me again and again. To not accept scientific fact and rest on outdated stigmas.”

Jo’s message is about stigma, too. “Everybody reading this will think the worst thing you can do to someone with HIV is insult me or slag me off. What they don’t realise is that the worst thing to do is to see me as a victim. Because I am not. At the end of the day, HIV is just a virus looking for somewhere to live and it found a home in my body. I’m just a regular person.”

Images: Getty, Unsplash