When Is It Okay To Talk About PrEP and U=U?
Have you talked to your friends about PrEP and U=U? I currently have a friend that is undetectable, one friend that has started PrEP, and another soon to be on it, depending on how his doctor's appointment goes this week. I'm not on it, but I want to talk about it more with people and friends. I think the conversations around U=U and PrEP come up when someone is on the defensive. I did ask one of my friends directly, "are you on PrEP?" "Why do you ask?" was his response, but it was more of a shock that I would bring it up, did I ask because I was seeing something different about him, or did someone tell me he was on it? It wasn't a defensive response, but it was more of an ... are we talking about this right here right now?
When is a good time to talk about a gay man's health with other gay men?
Gareth Johnson and MainlyMale.com shared a story by Jason Domino called Two Sides Of The Same Bed: a conversation between Jason Domino and Hans Berlin as they talked about PrEP and U=U.
A conversation between Jason Domino and Hans Berlin.
Hans – Thankfully you don’t hear “Are you clean?” often anymore. It was awful, because that would make anyone living with HIV ‘dirty!’ And the question if I am STD-free? Jesus, did anybody seriously ever answer that question with “No, I have gonorrhea, but can we still have sex?”
In the past I felt more stigmatised by straight people “You’re gay, you must have the virus!” Some still saw us as sex-craved monsters. Thankfully that has changed now.
Jason – It is uncomfortable hearing HIV stigma; because I know from experience it is useful that I state I am negative before I then educate the fool saying the ignorant things. Sadly telling them my status makes it look like I would be ashamed to be mistaken as HIV+… But it is important for them to relate to me and trust in what I say next. I then explain U=U and PrEP (U=U means Undetectable equals Untransmittable, that someone with HIV on medication can get such a low measure of the virus in their body that it cannot be detected and cannot be passed on. A person with HIV can also live a full, long life. PrEP is a preventative drug for HIV- people, it’s designed to prevent the user from catching HIV if exposed to the virus).
Explaining these to someone shouldn’t be impacted by them knowing my status, but if they are ignorant they may already discriminate against things told to them by an HIV+ person. I prioritise getting results in de-stigmatising people, so I do it that way. An HIV- person not accepting what an HIV+ person is telling them, is upsetting to even watch as a third party. All informed people should get involved when they hear HIV stigma, regardless of their status.
Hans – In Germany, people didn’t ask about your status when you hooked up with someone. You just assumed they had ‘everything’ so you protected yourself with a condom and stayed away from bodily fluids. Of course, once I knew I was positive, I made extra-sure that everything was ‘safe’.
When I moved to the States, things were different. I felt like people asked for your status so they could have condomless sex with you if you said you were negative. In my opinion, that’s a very weird way of trusting someone with your health. Certainly, there were times, when I did get rejected after telling them my positive status.
Sex for the first decade of my positive life included rejection, shame, and a feeling of ‘guilt,’ which very often comes along with a new HIV diagnoses. When I started having sex in the 90’s, they constantly warned us about HIV, and I still got it. So I felt like it was my own fault because I ‘failed’ at protecting myself. It took me some time to lose these feelings. My concerns also came from how I felt my HIV would be viewed from society. Mainstream culture does little to counter those worries.
That’s why it was also hard to form a relationship with someone. Maybe deep down inside, I felt like I wasn’t loveable anymore because of my virus. I started seeing a therapist, Michael, around 2010. Michael helped me to see things differently. Also, the new findings of U=U, which is celebrating its 10th anniversary this year, helped immensely and gave me newfound self-esteem.
Jason – When we get chewing gum on our shoe, we just sort it. It’s less about blame and shame, more about communal litter picking: sometimes gum happens. Being this casual with HIV doesn’t mean forgetting to avoid contracting it. It simply means even in prevention campaigns, explain that people living with HIV live normal lives. We now have lots of pills for HIV infection, but there is only one treatment for HIV stigma, normalising people living with it.
HIV occasionally gets used for a cheap laugh in media. Jokes commonly reinforce outdated ideas, however challenging them can be seen as being petty or no fun.
The most frustrating thing is seeing people acting piously after donating to HIV charities… It is frustrating as many of these same people are unable to talk about HIV on a personal level. The support is great, but treating HIV+ people with pity or ignoring them doesn’t respect how many people with HIV live. You do not need to have experienced living with HIV to know this needs to change. It doesn’t even need to come from empathy, but even outrage at common ignorance and the behaviour shown towards other humans should be enough.
“I sometimes lied about my status when a hook-up asked, because I feared rejection. I told them that I was ‘negative’ but wanted to use a condom.”
When I found out that I had HIV in 2001, I only told a handful of people. I sometimes lied about my status when a hook-up asked because I feared rejection. I told them that I was ‘negative’ but wanted to use a condom. There were times when they found out the truth or I told them at some point, and that led to a lot of drama. Thanks to my mentor Michael, I learned to be more open about my HIV status. Now I even put my ‘positive’ status on my dating apps, I don’t get rejected anymore. Either people are really more educated, or they just don’t want to hook up with me because of it. At least, I don’t have to have those painful conversations anymore.
I don’t know if it was the grey weather, or the fact that from now on I would have to take medication until the day I die, or the potential side effects, but I felt depressed when I started my pills. That disappeared when spring came along, or maybe it was by then, my body had gotten used to the medication. As we move along, more and more HIV treatment options have become available. So if you face side effects from one medication, you have many others to switch to that might work better for you.
It took me 13 years to tell my parents because I didn’t want them to worry, or be ‘scared’ of me. They took it very well. They were even educated enough to know that I don’t pose a risk to them and that modern medicine keeps me alive and well. Never being sick was additional proof that my medication works. Since I told them, nothing has changed. They treat me exactly the same way they treated me before they knew. But it’s the greatest feeling to not have to keep this secret from them anymore. I guess, sometimes we underestimate our parents. In the long run, everybody needs to find out for themselves who they wanna tell their status to, family, friends…
“Once negative people are on PrEP they may not think about their partner’s status at all. After I started daily PrEP in 2015 I saw no need to talk about HIV with partners, unless they wanted to.”
People are different depending on what they are used to. Some HIV+ folk think if nothing is said about status before sex, then both are confident and likely positive already. While some negative people think the exact opposite if nothing’s been said. Once negative people are on PrEP they may not think about their partner’s status at all. After I started daily PrEP in 2015 I saw no need to talk about HIV with partners, unless they wanted to. As PrEP doesn’t protect you from other STIs, I still check they’ve had an STI test recently. Condoms can prevent against a range of infections. I’ve had no side effects from PrEP and feel optimistic when I go for my regular sexual health test. Along with testing, I got my HPV, Hepatitis B, and Hepatitis A vaccinations, and I learned about minimising Hepatitis C transmission.
I find that many HIV- people expect HIV+ people would tell them their status before sex. They are surprised to learn an Undetectable partner is zero risk to them, so they don’t have some ‘right’ to be told. When an HIV- person relies on HIV+ partners to disclose before they’d have sex, the HIV- person can get lazy with responsibilities. Responsibilities like having regular HIV tests and learning about Undetectable, PrEP, PEP (emergency HIV treatment within 72 hours of exposure) and condoms. It is almost as if they think someone else is taking care of HIV for them. Many places have legislation that anyone above a transmittable threshold should tell a partner before condomless sex with an HIV- person. This legislation doesn’t cover those who are Undetectable, and the legislation is no excuse for a HIV- person to care less about their own sexual health.
PrEP is another wonderful addition to the palette of safer sex options we have now. Back when I started having sex, the only safer-sex tools we had were condoms and abstinence. A lot of progress has happened quickly so of course people will need time to catch up, and come to terms with what they have learned.
People just learning about PrEP can make some odd assumptions around promiscuity or condoms but with time it will be common for people to see PrEP similar to being on the contraceptive pill. Just another sexual health tool some people choose.
When an HIV+ person explains HIV to others they become a role model for progress. In my opinion, it would be great if more people living with HIV would come out about their status and not just to the ones they wanna have sex with. It would show the world that it’s something completely normal. Your neighbor, your teacher, your soccer star might have HIV. If HIV+ people knew more people who are in the same ‘boat,’ they could support and help each other.
When an HIV- person explains modern HIV knowledge to others, they become a role model to the ill-informed. They show a relatable perspective that opposes outdated HIV stigma. When an HIV- person shows unity with people with HIV, beyond charity, they cross the status divide. Normalising the exchange in either direction means good friendships and romantic relationships are not missed over ignorance or fear. Openly serodiscordant relationships (relationships between HIV positive and negative people) look set to play a huge part in the future of HIV activism.
Content republished with permission from Gareth Johnson
Originally from Australia, Gareth now lives in London. A non-smoker who loves to laugh, Gareth writes about all aspects of the LGBTQ experiences, with a particular passion for travel, sport, and films.