When I was diagnosed with HIV while using pre-exposure prophylaxis (PrEP), I was one of only a handful in the world -- and the first while using "on demand" dosing. That means that, rather than taking PrEP daily, I took two pills before I planned to have sex, then one the day after, and another the day after that, as recommended by doctors.
I want to start this piece by showing my appreciation for all people living with HIV. Thank you to everyone who paved the way for me and for anyone else that contracts the virus. I want to thank those of you that have supported me, and I want to thank you for accepting me.
I went public with my status in March of this year. Everything that came after, I had totally expected and prepared for, but no amount of preparation can truly inoculate oneself when faced with such huge global scrutiny.
The immediate feeling was actually one of relief -- the months between my diagnosis and my public disclosure were stressful. It wasn't a matter of "if" it was going to go public that I was the Sydney case of a seroconversion on PrEP, but rather it was a matter of "when." Being diagnosed with HIV while on PrEP was incredibly violating. I felt utterly let down. Trying to pinpoint who or what I feel let down by -- the drug, doctors, activists, all of them, none of them -- is hard. But it is how I feel. Furthermore, I feel like I have let down others, despite doing nothing wrong, and that hurts more than anything.
While the emotions involved in an HIV diagnosis are very raw and can be overwhelming, dealing with the logistics of my diagnosis was a way to feel in control; immediately going onto treatment, immediately seeking therapy, telling my closest friends, and getting on with contact tracing. I knew my health would be fine, and I knew that the people closest to me supported me.
Another way to gain control over this situation after having lost the sense of protection I had built over many years of PrEP use was to control how people found out about my diagnosis. My body of work as an activist and even my sense of self had been built around PrEP and being HIV negative, so I knew I not only had to manage my reaction to my own diagnosis, but I had to manage how the rest of the world would react, even though, to some degree, it was futile. This is no overstatement.
The news of my diagnosis reverberated around the globe -- it was daunting. Various HIV organizations and very generous individuals helped me prepare for this huge media story. They trained me in how to respond to questions and form narrative. They trained me in mindfulness to help me overcome the feelings I would experience. I was told to go kill myself daily by complete strangers and even by people I knew -- each time was a punch in the guts, it hurt, and everything else said about me, or to me, hurt. However, after many punches in the many months since, I have discovered a resilience and a thick skin that I never knew I had, but which every person living with HIV inevitably forms.
So, a year later, I am undetectable, I am still drinking more port than a 27 year old should, I continue to have an unhealthy relationship with ramen, and I have learned a lot about people, especially myself.
The duality of experiences of being a person living with HIV (PLWH) after having been a PrEP user is pretty bizarre. I still sometimes accidentally say "we" when referring to PrEP users, but I now firmly and confidently walk the world as an unashamedly bisexual poz guy. I am blessed to have a beautiful and supportive boyfriend. We are in a serodiscordant relationship. He is my biggest cheerleader. I have a family who love and support me, and I have indispensable, unwavering friendships. I am healthy, and most importantly, I am happy, but there is still a lot to be done.
There are similarities to my life before I was positive. I took lots of pills before, and I take lots of pills now. People stigmatized me for my decision to take PrEP. And people discriminate against me now for my HIV status. But I now understand HIV stigma in new ways -- both external and internal.
After my diagnosis, I'd get upset when friends on PrEP told me, "Oh it's no different, you'll live a full healthy life, you'll be taking the same pills, it's not a big deal." I could not really understand why I was getting upset. What they were saying was not incorrect. I should just get over it -- right? That's hard, because being on PrEP and being on treatment are not the same and won't even be close to being similar until we end HIV stigma.
I could not help but wonder where I went wrong as a PrEP educator. My own friends could not really understand that HIV-positive people face a different existence purely by virtue of our HIV status and how society treats us because of it. To some degree I feel personally responsible, having spent years as a PrEP advocate.
I've always had HIV-positive lovers, friends, and colleagues. Yet I still did not comprehend stigma until I experienced it. How do I teach others about it when I could not be taught myself?
Astonishingly, HIV is still a big deal. Despite all the privileges I have as a white queer man in Australia, I was still pushed close to the edge after my diagnosis. I am appalled at how poorly we are treating women, people of color, migrants, and heterosexual men who get HIV. Since my diagnosis, I have been lucky enough to attend regional HIV conferences and connect with people outside of the cisgender queer community. I've looked out of my own bubble, and what I saw was awe-inspiring, yet also incredibly upsetting. The HIV-positive women I met who told me how they were beaten by their partners when they disclosed, the Papua New Guinean people living with HIV I met who were forced to leave their towns and cities and can never feel safe, the positive heterosexual men I workshopped with who struggle to find acceptance in a country where the perception is that to be HIV positive is to be gay.
Yet, these individuals connect with the body positive, and they still stand up in front of crowds of strangers to speak truth to power. I got to spend time with them and see that they still see the beauty in humanity and are hopeful despite everything they have been through. Their resilience is incredible, but it's inexcusable that these crimes against PLWH are all happening on our watch. To be sure, I learned about these issues before I was diagnosed with HIV, but I was never empowered to really act on them -- why does the HIV sector struggle to get these stories out from behind conference-center doors? Or alternatively, why are HIV-negative people not engaging with the experiences of PLWH? I wish more people cared.
Having been on both sides of the modern serodivide, I have come to see the many glimpses of hope that exist in the barbed-wire-laden fence. I realize that for many PrEP users and HIV-negative people, HIV stigma remains a mere concept.
The undetectable equals untransmittable (U=U) message is getting out there, but it's not sticking in many places. The "PrEP 4 PrEP" phenomenon within hook-up culture needs to be examined and booted out. Serosorting has long been an important HIV preventative tool, but this was before we understood that effective HIV treatment removes the risk of HIV transmission. These days, if you are not taking PrEP in order to have sex with HIV-positive people, why are you taking it? It easily steps into the realm of persistent HIV stigma, that no matter the preventative you are subjecting yourself to, nothing will allow you to have sex with HIV-positive people.
This growing phenomenon is upsetting, not only as someone who has tried to advocate against this type of stigma and help people overcome their anxieties -- anxieties that are admittedly extraordinarily difficult to remove. But this is upsetting because it makes HIV-positive people like me still feel less worthy of someone's time, less deserving of sex, that we shouldn't be allowed to experience pleasure, but if we do, we should quarantine ourselves within our own PLWH community.
Even if you are having sex with HIV-positive people now that you are on PrEP, are you behaving as an ally or treating it as a simple transaction? Now is not the time to treat sex and relationships on these revolutionary medications as transactions, nor is it the time for complacency or self-preservation. Now is the time to step up in unyielding support of both PrEP and U=U, no matter your status.
My main goal now is to empower everybody to be a better ally to PLWH. This is the next big task as we steam ahead to critical mass of PrEP uptake in some communities. Poz voices have a valuable contribution to make and a much-needed place in the PrEP conversation -- where are the MIPA(Meaningful Involvement of People with HIV/AIDS) principles being applied here?
I was originally going to write up a piece detailing the trolling and bullying, the mistreatment by doctors, the stalking and false accusations, the death threats against me, but I highlighted all of that with my mouse and pressed delete. What I have learned from getting into a pretty dark space after my public exposure is that what other people say about you says far more about them. You have got to rise above it. The poison does get through and it stings, but I have got through this with my head held high.
What people don't realize is that after experiencing the seemingly impossible, you do not become more afraid of life, you live it more richly. I am not going to walk this world paranoid that anything is possible because of what I have experienced -- I am going to walk this world knowing that everything is actually going to be alright, because it turns out that everything is alright. I'm lucky, not unlucky; I'm a success, not a failure. Life is great.