Just because someone is diagnosed as HIV-positive, it doesn’t mean they stop taking care of their sexual health.

16% of respondents in our survey of 203 people told us that they are living with HIV. We asked them how they look after their sexual health, what they think of modern HIV prevention methods and how far attitudes toward HIV has come.

WE ASKED: Tell us your preferred methods of looking after the sexual health of you and others?

  • Talking to others about U=U/undetectable – 63%
  • Testing for STIs every six months – 43%
  • Testing for STIs every three months – 37%
  • Looking after my mental health – 37%
  • Informing people about PrEP – 33%
  • Condoms – 23%
  • Monogamy – 17%
  • Abstinence – 7%

Has PrEP helped HIV stigma?

WE ASKED: Do you think that PrEP has changed people’s attitudes to HIV?

  • Yes, for the better – 73%
  • It’s about the same – 15%
  • Yes, for the worse – 8%
  • No – 4%

Mark, 43, tells us, “I’ve lived with HIV for ten years, so over the period in which PrEP use became normalised, at least in communities where men have sex with men. The shift in stigma has had a profound effect on my mental health - I feel less like I have to hide my status and am more willing to outright dismiss any negative reactions I do get as the bigoted, ignorant views they’ve always been.”

“I think that there’s an informed cohort about PrEP and that’s incredibly positive. I think that some of the communications and targeting may be missing some groups,” thinks Darren, 40.

David, 26, has more of a negative experience since the introduction of PrEP, “People were thinking I was too thick having not taken it to prevent HIV.”

And just because someone takes PrEP, it doesn’t necessarily mean that their attitudes to HIV evolve or change either. Simon, who continues to talk about his experiences openly with others, has some very clear advice: “I’m not blaming anybody for not knowing what to say, but I have a problem with silencing somebody who clearly wants to talk about it. If somebody wants to talk about it, and you’re their friend then you need to just shut up and listen.”

WE ASKED: Have you ever experienced HIV stigma from someone taking PrEP?

  • Yes – 31%
  • No – 65%
  • I’m not sure – 4%

“It’s happened several times,” Jeff, 45 explains, “the guy says he’s on PrEP but doesn’t seem to understand how it works and doesn’t know about U=U. Some have blocked me straight away on Grindr/Scruff, and others say we can fuck if I agree to using a condom.”

Ethan, 42, says, “Some guys on PrEP still don’t fully understand the effectiveness of treatment. In other words, they’ll be convinced of the effectiveness of PrEP but still won’t trust a positive guy to be truly undetectable – and therefore untransmissable – when he says he is.”

Using condoms

How prevalent is condom use for people living with HIV?

WE ASKED: How often do you use condoms?

  • I never use them – 44%
  • Hardly ever – 22%
  • The majority of the time when I have sex – 15%
  • Occasionally when I have sex – 11%
  • Every time I have sex – 7%

Did becoming HIV-positive change your relationship with condoms?

  • Yes – 55%
  • No – 41%
  • I’m not sure – 4%

For many years I only had sex with condoms after testing positive. Then about 15 years ago I started seeking other HIV+ men for bareback sex. I only started having condomless sex with HIV- men after the PARTNER study and U=U was more known,” Jeff, 45, tells us.

Mark, 43, had a similar experience: “It’s complicated because things changed over time. At first, I was highly vigilant around condom use, as I wasn’t immediately on anti-retroviral medication. Over time, and as I achieved undetectable status, I became more relaxed. That was even more possible as knowledge around U=U became more common.”

“Your baseline adjusts,” Eddie, 33, explains, “after HIV almost everything else, except hep C, is relatively easily treatable so what is “risky” becomes different.”

“I’m happy to use condoms with partners that prefer them but happy to not use them after discussion about status, meds, PrEP etc,” says David, 51.

Testing for STIs

Does living with HIV make someone more vigilant about testing for STIs? The results from our survey seem to suggest so:

WE ASKED: How often do you test for STIs?

  • Every three months – 42%
  • Every six months – 38%
  • I don’t test for STIs – 11%
  • When I have symptoms – 4%
  • As and when I feel I need to – 4%

“I test to prevent the spread of STIs and prevent antibiotic resistance. I want to protect the health of myself and my sexual partners,” says Tom, 28.

“I want to be a responsible sexual partner,” Mark, 43, tells us.

Dan, 47, says, “I test to get diagnosed and treated, so I don’t pass them on.”

Experiencing HIV stigma

Despite the progression of HIV treatment and multitude of ways we can now prevent HIV, do people living with HIV still experience stigma?

WE ASKED: Do you still experience HIV stigma?

  • Yes – 58%
  • No – 23%
  • I don’t know – 19%

Where have you experienced HIV stigma?

  • On hook-up apps – 74%
  • On dating apps – 56%
  • On social media – 35%
  • Family – 22%
  • Friends – 22%
  • Partner(s) – 22%
  • In public – 17%
  • I’ve never experienced HIV stigma – 17%
  • In bars or clubs – 13%
  • In saunas or sex venues – 13%
  • On dating websites – 9%

Tom, 28, explains, “I’ve been called dirty and have had a relationship end when I informed a guy I was dating of my status.”

“Some guys say that, even though they are on PrEP, they won’t have unprotected sex with a positive guy,” Paolo, 48 tells us.
Al says, “Someone said they would not meet me because I’m positive. I tried to tell them I won’t pass anything on, I didn’t continue the conversation. I don’t have the time or energy to argue with people that don’t want to listen.”

Does 58% of respondents experiencing HIV stigma mean that the U=U/HIV-undetectable message isn’t getting through?

WE ASKED: Do you think the HIV-undetectable/U=U message is getting through to HIV-negative people?

  • Yes – 54%
  • No – 19%
  • I’m not sure – 27%

“At least in gay male communities,” thinks Mark, 43. “Most sexually active men who have sex with men seem to be aware of it, at least in major cities. When I talk to straight friends, they’re much less aware.”

Tom, 28, says, “I have been able to date HIV-negative people without it causing any concern. More men on apps are open to having protected and unprotected sex with undetectable HIV-positive men.”

Tom, 35, tell us, “ More and more people, at least in the gay space, are comfortable meeting HIV positive people for sex or relationships. The knowledge that I can’t pass it on really helps.”

Although not everyone agrees, including Ethan, 42: “Unfortunately I feel the U=U message still isn’t getting through to many gay men I meet. It can often feel like the poor bedfellow (excuse the deliberate pun) to PrEP. PrEP gets all the media excitement and seemingly all the health promotion funding, and yet it’s ultimately the same thing as U=U – both PrEP and U=U are about using antiretroviral medication to prevent HIV transmission.”

WE ASKED: How does HIV stigma impact you?

  • It makes me feel less sexy – 36%
  • It makes me lose confidence – 28%
  • It makes me feel unloved – 28%
  • It makes me angry/frustrated – 28%
  • It impacts my mental health poorly – 24%
  • It makes me feel ‘dirty’ – 24%
  • It makes me depressed – 24
  • I don’t let it bother me – 20%
  • I don’t experience HIV stigma – 20%
  • It makes me anxious – 12%
  • It makes me want to isolate – 12%
  • It makes me want to lash out verbally – 8%
  • I’m numb to it – 8%

Ian Howley of LGBT HERO said; “It’s clear that the stigma directed at gay and bi men living with HIV has a negative impact. Nobody should have to feel like this because of their status. HIV is a manageable condition and those who are HIV undetectable can’t pass on the virus. In this day and age, there is no reason for anyone to treat someone else poorly because of their status. We must do more to educate our community on these facts, make people realise that stigma has real life ramifications on someone’s mental health, so people can see what it does but also support those living with HIV. They shouldn’t feel like this and there are support systems in place for us to help them overcome this.”