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 to 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 already gets it, 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 getting tested, knowing your status, knowing 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.
Do you know what happens when a flyer to promote National Gay Men’s HIV/AIDS Awareness Day is possibly taken down in a high school because it is promoting an event that relates to sex? Misinformation, stigma, fear, and ignorance continues to run rampant. HIV continues to spread because of silence and ignorance. Young people need to know that HIV is still an issue. Young people living with HIV need to know the many ways to protect themselves. Young people are still being infected and diagnosed with HIV at alarming rates. So to take down the flyer, would be oppressive to everyone living with HIV. Young people need more opportunities to learn about HIV and how to protect themselves. If taking down the flyers because talking about sex to teenagers in a high school is still taboo or considered wrong or inappropriate, then taking down the flyers will continue to feed the fires of stigma and ignorance, and HIV will continue to spread. If the efforts of people living with HIV are stifled, or silenced, HIV will continue to spread.
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, because 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 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 further, and help spread the good news about TasP, U=U, and PrEP. When someone does not believe in the truth, science, validity and effectiveness of U=U, they continue to perpetuate stigma and ignorance. When someone questions and does not believe in the truth, science, validity, and effectiveness of PrEP, they continue to perpetuate stigma and ignorance. Perpetuating this type of stigma and ignorance is oppressive to all people living with HIV. People who are ignorant to PrEP and U=U will keep continuing 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.
Did you know that HIV is most transmittable after 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 far too often the time period before someone decides to get tested. This is the time even before a person finds out 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 believe 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. Not enough people know about 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. This is definitely one form of action, and one too often overlooked approach to ending stigma and win 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