This article originally appeared in the UK’s FS magazine, a publication of GMFA, here.
For the last three years, FS has asked gay and bisexual men living with HIV for their thoughts on HIV stigma, how it affects them and the challenges they face. Since 2014, we have listened to thousands of these men and they have spoken very honestly with us. In 2016, we surveyed another 750 gay and bisexual men living with HIV to see if anything has changed. Here are the results:
Stigma in 2016
We asked: Do you think there’s still a degree of stigma associated with being HIV-positive?
Yes: 97% No: 3%
If Yes, why:
Nick from Brighton said: “There’s still a fear through lack of understanding. As treatment improves and potential risk decreases there is still an ignorance of up to date information and a resistance to talk about what being positive really means.”
Lee from Cardiff told us: “Although research and treatment have moved on so much over the years, the public still remember the original message that AIDS is a killer, and mainly affects the gays and the junkies. Not much has really actually been done to change those attitudes in the media or in hospitals/GP surgeries. People are told that HIV is still the worst thing you can contract through unprotected sex and that reminds people that it is something to be scared of.”
Fred from Dublin said: “To an extent I feel the gay community itself has the largest stigma about HIV. Outside of a close few friends, it’s difficult to have a conversation about it within community.”
And Ian from Bristol said: “It is not talked about enough and ends up being a ‘dirty secret’ that people are forced to hide, and HIV-phobic people will use as an excuse to bully and discriminate.”
We asked: Where do you receive/see HIV stigma the most? (Tick all that apply)
- Grindr/Scruff/dating apps 84.2%
- Facebook 22.1%
- Clubs 21.5%
- Pubs 19.4%
- Work 17.3%
- Twitter 10.0%
- Saunas 9.4%
- School/college 5.2%
- Parks/toilets/hooking up spots. 5.2%
- YouTube 2.1%
Since our first survey in 2014, we have seen instances of stigma on Facebook jump by 5%. Pubs and clubs have decreased by about 10%, which might be due to people either not disclosing or the falling number of gay men going to gay pubs and clubs frequently, and saunas have seen a decrease of 8%.
What does this tell us? Well, the jump in social media might be related to HIV becoming more visible on the likes of Facebook, Twitter and Instagram. However, the number of gay and bisexual men living with HIV who see stigma in the work place is unacceptable. Discrimination in the workplace is against the law, and this includes HIV stigma.
We asked: Would you say that stigma about HIV is likely to discourage gay men who’ve tested positive from disclosing their status to others?
Likely to discourage gay men from disclosing their status?
Yes: 93% No: 7%
Made you reluctant to disclose your status?
Yes: 83% No: 17%
In 2014, 75% of gay and bisexual men living with HIV said HIV stigma made them reluctant to disclose their status. This has jumped by 8% in 2016.
We asked: Have you a frustrating/funny/angry story to share about HIV stigma? Please tell us about an instance where you faced stigma for being HIV-positive.
Tim, 51 from London said: “I was searched going into a club with a friend who didn’t know I was HIV-positive and the bouncer found my HIV drugs in my bag and I had to explain what they were.”
Stuart from London told us: “I was told that a risk ‘assessment‘ must be carried out for the safety of other staff. My headteacher at the time (yes, I’m a teacher) justified this by saying ‘what if you fall and there’s blood? We will all need to know what to do’. I gently suggested looking at a few websites. It was not mentioned again.”
Alan from Glasgow said: “I told my previous employer and the General Manager took it upon himself to share the information with head office and check if it was still safe for me to continue in my job as a hotel Food & Beverage Manager.”
Rob from Birmingham told us: “A man was keen to meet for fun, not full sex. He asked me if I was ‘disease free’. As an experiment I said I tested 6 months ago and was negative. He said that was fine. Then I said I’m undetectable. He said he never goes with poz guys. When I asked him why, when he’s far less likely to become positive from someone who is undetectable, he said I was missing the point and blocked me.”
Lee from Cardiff said: “A one night stand saw an empty bottle of pills and googled what they were when he left. He was then convinced that he’d contracted HIV even though we done nothing at all risky. He was not reassured by the team at the GUM clinic and was worried for a full three months, and was then told by a twat of a nurse that he wasn’t out of the woods even then and would have to return three months later to be retested. The NHS can be incredible but this clearly is not always the case. The result was a very concerned man that was fearful of his life and future for a full six months.”
And Alex from London told us: “During sex the guy asked constantly to fuck me bareback and I repeatedly said no. To make him stop asking I told him I was undetectable, and then he said that he’d already put his cock in me bare and that I was deceiving people by not telling them. I had to give him a long chat reassuring him that he hadn’t picked up anything from me.”
We asked: Have you ever faced sexual rejection for disclosing your HIV status?
Yes: 74% No: 19% Not sure: 7%
In 2014, ‘Yes’ stood at 69%, ‘No’ at 23% and ‘Not sure’ at 8%. This is an increase of 5%.
We asked: Are you undetectable?
(HIV-undetectable is used to describe the amount of HIV in your body. Normally someone with an undetectable viral load calls themselves HIV-undetectable.)
Yes: 96% No: 3% Not sure: 1%
We asked: Have you ever told someone that you were undetectable?
Yes: 85% No: 12% Don’t remember: 3%
If ‘Yes’, what was their reaction? Did you have to explain to them what it was? What was the end result?
Lee told us: “I always have to explain what it means and how it affects risk. It doesn’t always seem to mean much to people until they have done their own research. They tend to think that you’re only saying it to lessen the blow. They just know of HIV and immediately get scared.”
Angel from Caguas said: “I had to explain what it was. They did not fully believe me.”
Alex said: “I’ve had to explain more than once what it means and what the risks are. Once it was a long and deep conversation which I felt helped someone understand a bit more. We still didn’t hook up though.”
Ichabod from London told us: “I had to tell him as he sat on my cock without putting on a condom. Then I came and he said ‘you are negative aren’t you?’. When I said no he panicked. He really should have asked before sitting on my cock if he was that worried. And for sure if he had asked, I would not have had sex, as I always answer honestly.”
And Peter from London said: “The first person was someone I’d just spent an amazing date weekend with and was the first person I’d ever had feelings for who I enjoyed being sexual with. He didn’t reply for 15 minutes via text but was then great about it. Except for asking ‘do you ever miss your dose?’. I get the concern for their own health (good sign) but why wouldn’t I take my meds that keep me alive? The second time was with my current partner and he acted like I’d just told him I was allergic to nuts. Like ‘oh OK, that’s fine’. No issue at all.”
We asked: What do you think needs to be done to decrease stigma around sex with HIV-undetectable men?
Anonymous from London said: “There needs to be more coverage in the media about what it means to be positive, undetectable and with good drug adherence. The British soaps are just starting to cover gay relationships, so who knows how long it will be before they portray a positive/undetectable person who is healthy and happy in a storyline. The news channels don’t seem to have any discussion on the matter, which is strange:”
Rob from Birmingham told us: “More publicity and education. Even many highly intelligent, educated friends, gay and straight, have not heard the term.”
Lee said: “The PARTNER study should actually be talked about and recognised throughout the medical world. I often find that doctors, nurses and other healthcare professionals, who don’t work in sexual health, can be the most fearful groups of people because they think it’s always better to be safe than sorry and relay that type of information to their patients. Transmission risk with an undetectable load is as low as transmission through oral sex or penetrative sex with a condom! Everything carries some form of risk and this needs to be recognised in the same way.”
And Carl from London told us: “We need a major education campaign, not just gay media, but to the general public. We pose no risk!”
We asked: Has anything in your life improved since you became HIV-positive?
Yes: 60% No: 27% Not sure: 13%
In 2014, Yes stood at 56%, which suggests that although HIV stigma is on the rise, gay and bisexual men living with HIV are seeing a slight increase in life satisfaction.
What has improved?
Anonymous from London said: “I’m more focused and driven. I feel like, if I can overcome my initial fear and anxiety around HIV and function normally, then I can do a lot with my life.”
Anonymous from Dublin said: “I think I’m more stable now. I had hard times after becoming aware of it where it was challenging but now I think I’m better able to understand the value of things and life.”
Rob from Birmingham told us: “It’s given me a better sense of perspective. I’m less stressed by other things. If I can cope with this, I can cope with most things. I’m also more aware that my health is generally good and I’m appreciative of the time I live in with such good meds and that I have the support of the NHS.”
And Joe from Worthing said: “I’m so much healthier! I used to go from weekend to weekend without eating and abusing my body in many different ways. I now have a healthier diet, I’m not taking drugs every weekend (or at all) and I’ve come to respect myself and what I have.”
We asked: Do you feel living with HIV makes it difficult to be in a relationship?
Yes: 62% No: 14% Not sure: 24%
In 2014: ‘Yes’ stood at 64%, ‘No’ at 19% and ‘Not Sure’ at 17%. This suggests that gay and bisexual men living with HIV are seeing a decrease in relationship issues in relation to their HIV status. Although, saying that the fact that 64% believe that living with HIV makes it difficult to be in a relationship is still very high.
Finally, we asked: What would be your message to HIV-negative men about stigma?
Ben, 39 from Oldham told us: “Living with HIV isn’t a death sentence any more and you should be educated about it. Ignorance harms and kills!”
Johnny, 51 from Birr said: “Gay men should educate themselves about what HIV actually is and understand undetectable! And also to know the difference between HIV and AIDS.”
Stuart from London told us: “I would say ‘don’t we face enough trauma and prejudice as gay men?’. I would also be very clear to anyone that the statistics show many people who are infected don’t even know. Those who are infected and know about it are far less likely to pass it on.”
Rob said: “Don’t judge positive guys as it could be you one day. Don’t be a hypocrite. Get tested regularly unless you are totally abstinent. My early diagnosis means it probably won’t affect my health.”
And finally, Mark from Brighton told us: “Get a grip and don’t just make sweeping assumptions based on hearsay, ignorance or what you think. Find out, learn and become a better person.”
This article originally appeared in the UK’s FS magazine, a publication of GMFA, here.
Ian Howley | @IanHowley
INFORMATION: For more about how you can help fight HIV stigma, visit www.gmfa.org.uk/stophivstigma