HIV stigma in sheep's clothing
Guest author Émolas shares his experience of how the contradictory messages that are given by healthcare and social service providers in the field of HIV preventioncan sometimes reinforce HIV stigma by creating anxiety in HIV-negative people.
Most of the time, HIV stigma is pretty easy to spot. It comes across in black and white on dating app profiles when guys write things like “clean and DDF (drug and disease free).” It’s evident in the ever-growing number of people living with HIV who have been prosecuted for not disclosing their HIV status prior to specific sexual encounters, even though the risk of HIV transmission during those encounters was extremely low (if not nonexistent). But I want to talk about a different kind of HIV stigma, one that’s probably more pervasive yet rarely identified.
The kind of HIV stigma I’m referring to is implicit in nature. It’s rooted in fear and manifests as caution and anxiety. Furthermore, this kind of HIV stigma is often perpetuated by the people we would least expect to say or do things that stigmatize people living with HIV: people who work in the field of HIV prevention and care – people like me.
Allow me to illustrate with a story.
Three months ago, I received a message on Grindr from this really gorgeous guy who was just a few years older than me. We chatted briefly and it became clear very quickly that we were both into each other. Just as we were about to make plans to meet he told me that he was poz and undetectable for over five years.
Having dated a poz guy before, I told him that I didn’t have a problem with his HIV status, adding that I use condoms (for anal sex) with all my partners. He said he didn’t use condoms and reminded me of his undetectable status. Using the knowledge I’ve gained from working in the field of HIV prevention and care, I told him that I only forgo condoms in specific circumstances, like when I’ve been seeing someone for awhile and we both get tested.
He shared some links to articles citing studies, like HPTN 052 and The PARTNER Study, which have shown that the risk of HIV being transmitted in serodiscordant couples (where one partner is HIV-negative and the other is HIV-positive) is extremely low (if not negligible) when the HIV-positive partner has an undetectable viral load. I thanked him, noting that I was familiar with the research because of my work in the field of HIV prevention and care. By this time, though, it was clear to me that his position on condoms was unchangeable.
But I still really wanted to see him, so I asked, “Would you be able to share the results of your last viral load test with me?” While I thought I was promoting communication to negotiate informed sexual decision-making, his response indicated that I might’ve actually set off an HIV stigma bomb. He reiterated that he had been undetectable and on HIV meds for over five years and that he shouldn’t have to carry around a medical report to make himself seem more desirable in the eyes of potential partners.
I apologized and validated his frustration. Then I suggested that we try seeing each other for awhile to work towards a point where we don’t use condoms with each other. Although he was still frustrated, he agreed, and we finalized our plans to meet.
On the night I met up with him, things started off well. Our sexual chemistry was great, and it wasn’t long before we started making out and having oral sex. Soon enough, he made it clear that he wanted to fuck me. He began to put his dick inside me. I repositioned myself quickly in order to grab a condom. As I unwrapped the condom, his dick went soft and a look of disappointment appeared on his face. I acknowledged this, and he told me he hadn’t used a condom in years.
I decided it was a good time to continue our conversation. He said that he never missed a dose of his meds and that he’d had condomless anal sex with other HIV-negative guys before. We also talked about the Undetectable = Untransmittable consensus statement that major HIV organizations were beginning to endorse.
"He said that no one had ever asked to see his pills before, and that he couldn’t believe that, of all people, an 'educated guy' like me would make such a request."
We spooned while having this conversation. Soon he was hard again, and he put his dick inside me and began thrusting. It felt great, but my anxiety around HIV made it difficult for me to fully enjoy the moment. I made him stop and asked him to show me his meds before we continued.
This was the last straw. “Are you serious?” he asked. He pulled out with a sigh and then went to the kitchen to grab his pills. As I followed him, I began apologizing, acknowledging that I was just trying to get as much information as possible to ease my anxiety and make an informed decision (after all, that’s what I’ve been trained to tell clients when providing sexual health counselling). He said that no one had ever asked to see his pills before, and that he couldn’t believe that, of all people, an “educated guy” like me would make such a request.
I apologized again and asked if he wanted to continue. “We’re done for today,” he responded. I began to get dressed and continued talking with him some more, trying to help him understand where I was coming from. I told him that I’ve seen the kind of bullshit that many people living with HIV go through and how that’s made me afraid of getting HIV. I also noted that he was still a stranger to me and, if I had a pre-existing intimate relationship with him, I would care less about the risk of getting HIV from him.
At this remark, he said that he needs to be with someone who trusts the research and, even if there is the slightest chance that they could get HIV from him, they’re okay with that possibility.
I left his place shortly after only to return home for what ended up being a very restless night. I kept thinking about what he said. I also thought about the sex we had, wondering if I should access PEP (post-exposure prophylaxis) for a potential HIV exposure. I thought about how my efforts to be cautious and negotiate safer sex were fuelled in many ways by HIV stigma, including my own anxiety and fear of HIV. I realized how I must’ve come across as extremely distrusting.
The following day, I decided to tell my doctor about the encounter during an appointment I had previously scheduled to address a different health issue. I was very specific about what happened and let him know that I didn’t think I needed to go on PEP because penetration only lasted so long, there was no ejaculation, and the guy was undetectable.
However, my doctor responded that there was “still some risk” because the research doesn’t explicitly state that having an undetectable viral load is 100% effective at preventing HIV transmission. He added that I had time to think about PEP since it can be started up to 72 hours following an exposure to HIV.
After the appointment, I decided to consult some other sources of knowledge. I texted a friend of mine who’s an HIV/infectious diseases specialist and asked him about the HIV transmission risk of having condomless anal sex with a guy who’s undetectable. He said that the risk was very low, noting how the research essentially shows that Undetectable = Untransmittable. But he added that I should still be on PrEP.
I also looked at the St. Michael’s Hospital Pocket PEP guide, which states under Step 4c that “having an undetectable viral load dramatically reduces but does not totally eliminate HIV transmission. PEP should be considered.”
If the conversation I had during my sexual encounter the day before had not happened, I would have felt like my anxiety about the encounter was validated and that I should access PEP. But the conversation stuck with me and I felt like I should trust in him and the research. So I decided not to access PEP. (It’s been three months, and I got tested for HIV recently: I’m still negative.)
I wanted to share this experience because I think it highlights some of the contradictory messages that are given by healthcare and social service providers in the field of HIV prevention and care, and how these messages can sometimes reinforce HIV stigma by creating anxiety in HIV-negative people and encouraging them to be overcautious with HIV-positive partners. If the research shows that Undetectable = Untransmittable, then why can’t we as healthcare and social service providers just tell people to trust their HIV-positive partners?
Trust seems to be rarely discussed in the resources and tools that are created to help people navigate HIV risk. This is probably because there’s some research that shows that trust is not a very effective HIV prevention strategy (read about one example here). I remember coming across this kind of research in university, where I read papers that talked about how some people in exclusive or monogamous relationships will cheat on their partners, potentially exposing them to HIV. I also have friends who have been in this situation and acquired HIV as a result. While it’s important for us to acknowledge these realities, I think we also need to consider how emphasizing them (when providing sexual health counselling, for example) may fuel our anxiety about HIV and encourage us to be distrustful. In turn, this sense of distrust can perpetuate HIV stigma, like in the encounter I described earlier. This particular form of HIV stigma goes unrecognized, though, because it’s perceived and encouraged by many, including healthcare and social service providers, as a healthy, cautious approach to navigating HIV risk.
I can’t help but wonder if this kind of HIV stigma is as bad as the others. The distrust that it encourages seems to challenge many existing HIV prevention efforts. What do we need to see in the research in order to trust it? What do we need to hear from our partners so that we can trust them? How many more scientific and medical authorities need to say “Undetectable = Untransmittable” before we can believe it? Do we need to see a partner’s pills and viral load test results to trust that they are undetectable? How can we confidently rely on the research about undetectability to navigate HIV risk when we’re constantly pressured to use PEP and PrEP even when the risk of HIV transmission is negligible?
To address the implicit HIV stigma that’s perpetuated by the cautious approach to navigating HIV risk, we need to find ways to build trust into HIV prevention and care work. I’m not sure what this would look like, but maybe it would include researchers and healthcare and social service providers showing their full support for the research by asserting that having an undetectable viral load is an effective enough HIV prevention strategy to be used on its own (i.e., without condoms or PrEP). Perhaps it would also include creating awareness that HIV-positive people generally don’t want to transmit HIV to their partners and we should therefore be able to trust them without having access to viral load test results or other evidence of their undetectability. Among populations that are largely affected by HIV, like gay and bisexual men, such awareness might be fostered by capitalizing on the notion of community and referencing the love and support that members of a community receive from each other.
It’s 2017. We have more knowledge about HIV today than ever; the research on HIV is endless. And if so much of this research shows that people with undetectable viral loads don’t transmit HIV, then we need to stop being so cautious and encourage people to trust their HIV-positive partners. This could go a long way in reducing HIV stigma, which is one of the biggest reasons why many people, including myself, are still so afraid of HIV.
About the author: Émolas is a Canadian HIV prevention worker who chooses to remain anonymous.
- Tags: AIDS, Bloggers, criminalization of HIV non diclosure, Émolas, gay, Grindr, HIV, HIV stigma, HIV+ HIV-positive, HPTN 052, impact of undetectable viral load, LGBT, personal stories of people living with HIV, PositiveLite_com, post-exposure prophylaxis (PEP), serodiscordant couples, St_ Michael’s Hospital Pocket PEP guide, The PARTNER Study, Undetectable = Untransmittable (U=U)