I am grateful for community. For me, I find the most healing when I find community with others living with HIV. When I can share and hold space with another survivor (anyone still living with the virus is a survivor). It means the world to meet another person, who is a survivor of all the shame, guilt, and trauma that comes with being HIV positive. Healing happens when you find another person who is willing to trust you, and share that they are HIV positive. I find healing when I can share, hold space, and facilitate a discussion with 3 other young people living with HIV. I find healing when we can talk about our shared struggles, and support one another without any filters, without any judgement, or without any shame or stigma in the room. When I am in this kind of space, I don’t need to explain to anyone what it’s like to be living with HIV. Everyone in the room just gets it already, no explanations necessary. A space that is affirming, and truly free from the feeling of: “sometimes it feels like HIV negative people will never get it.” That is a very rare space to find.
Instead of the tired broken record messages of: “get tested, know your status, & know your partner(s)’ status,” here is another effective intervention: Luv Til It Hurts. Listen, and engage, with this artist-led project on HIV & stigma, that centers the stories and struggles of people living with HIV.
I have met young people who are HIV positive, who were diagnosed as early as 16 years old. I was diagnosed when I was 20. I was not informed or educated about PEP as a way to protect myself, when my sexual partner decided to take the condom off; without my consent, and without me knowing. PrEP was approved by the FDA the same summer that I was diagnosed with HIV. But even after PrEP was FDA approved, there were many healthcare professionals who still did not believe the science behind PrEP. “How do we end stigma?” You might ask? No, it is not just to get tested regularly, and to always know your status (but those are definitely important too). Continue the efforts, and help spread the good news about TasP (Treatment as Prevention), U=U (Undetectable = Untransmittable), and PrEP. When someone questions and does not believe in the truth, science, validity, and effectiveness of PrEP, they continue to perpetuate stigma and ignorance. The perpetuation of this type of stigma and ignorance, is oppressive to people living with HIV. People who are ignorant to PrEP and U=U, will continue to stigmatize and oppress people living with HIV. (If you are reading this article and have never heard of U=U or PrEP, please take the time to educate yourself about them. Google is free.)
Speaking of undetectable: Did you know that HIV is most transmittable when someone recently seroconverts (when someone becomes newly infected with HIV)? This is when someone’s viral load (amount of virus in their bloodstream) is at the highest levels (sometimes in millions). The goal of treatment is to get the viral load to undetectable, or to a minimal amount in the bloodstream to the point that someone is unable to transmit the virus on to another person. However, when someone recently seroconverts, this is (most often) the period of time, before someone decides to get tested. This is the time, before a person learns their diagnosis, that they are HIV positive. Guess what happens when this person accidentally forgets to use a condom? Guess what happens when this person chooses to have unprotected sex with someone because they think they are HIV negative (but they’re actually unknowingly, HIV positive)? Yup, that’s right. That’s how HIV continues to spread silently, without anyone knowing. When people are not getting tested and not knowing their status because of stigma, fear, shame, and guilt, that is what continues the spread of the virus. HIV does not continue to spread from people who are undetectable & untransmittable. Not enough people know this, because the conversations that are happening about HIV, are not being pushed or driven by the stories, voices, and experiences of people living with HIV.
Luv Til It Hurts, for me, means to love and care for people living with HIV, even if they may never achieve viral suppression. People living with HIV deserve to be loved and cared for even after they become virally suppressed, because our journeys do not end at undetectable or at viral suppression. People living with HIV need more than support getting to undetectable (I’m looking at you, public health care model without the examination and consideration of the many challenges and barriers of mental health for people living with HIV, from a trauma-informed lens). Mental health is a public health issue, most especially for people living with HIV. People living with HIV need people to know that they are not alone in this battle. People living with HIV need to live in community with others like them, where they can find healing through shared and collective struggle. Young people living with HIV need to be able to find community with other young people living with HIV. These young people need to share their stories and experiences, and their stories need to be heard by the world. The voices and experiences of people living with HIV need to be centered, and at the forefront of discussions about HIV & STI prevention. This is one of the many approaches to ending stigma, and winning the fight against HIV & AIDS. This is how we Luv Til It Hurts.
When people living with HIV are under attack, what do we do? ACT UP! FIGHT BACK! FIGHT AIDS! And Luv Til It Hurts.
Malaya Mañacop, LMSW
September 27, 2018