National Black HIV Awareness Day

Ashton "AJ" Totten-Reynolds is a minister, nonprofit leader, and community advocate in the metro Atlanta area. He serves as a Board Member of THRIVE SS, Inc., a nonprofit organization committed to providing support services to Black gay men living with HIV.

This is My Story:

How I Overcame Stigma and Shared my HIV Testimony

By AJ Totten-Reynolds

In 2006, I received news that would change my life forever. I learned that I was living with HIV. At the time, I was 20 years old with no job and no real sense of stability.

I had just moved to Atlanta 2 years prior and to say that I was struggling is a severe understatement. I was sent to the city from Houston so that I could make my family proud. I had goals of excelling at a prestigious college, pursuing a reputable career and being the model of what a successful Black gay man could be. As I sat in the hospital room digesting the news that I contracted HIV, all I could think about was the idea that I let my family down. In that moment I vowed never to disclose my status to anyone in my family or on any public platform. On World AIDS Day 2021, I decided to change that.

In the first few years of my diagnosis, the challenges of accessing and staying in quality healthcare made it nearly impossible to find any solace with my status. I was overwhelmed with appointments, paperwork, and hours upon hours of sitting in waiting rooms. When I tried to advocate for myself, I would hear things like, “Either you’re going to pay with money or with time,” and, “If you had made better choices, you wouldn’t be in this situation.” At one point, I gave up completely on seeking care. I thought it was better to suffer in silence than to endure the perceived shame of confronting my HIV status head on. Thankfully I had a few folks in my tribe who pushed me back into care and eventually I was able to find a consistent routine. I’m

happy to say that for the last 10 years I have been consistently in proper HIV care, and I have remained undetectable.

While I had been fortunate to enjoy quality medical care and viral suppression, I still struggled with disclosing my status. Of course, my close friends, previous sexual partners and my spouse all knew about my status. But I just couldn’t bring myself to make a public declaration. Even though I spent years supporting others living with HIV as a minister, community advocate and nonprofit leader, a small part of me felt a tinge of shame about my own diagnosis. I would always speak about HIV in general terms, being careful to not implicate myself as a person living with HIV. Ironically, one of my main fights has been the elimination of the stigma that is associated with HIV all while denying my own status in public spaces. That goes to show just how strong HIV stigma really is.

The early years of the HIV epidemic sent shockwaves through our communities. Lack of research and access to proper treatment meant that many who contracted the virus would succumb to it in very short periods of time. So many people were lost to the virus that it became normalized to associate HIV with death. This birthed a negative stigma around those living with HIV. This stigma has persisted over the last 40 years, despite the overwhelming advances in treatment options which have led to longer and healthier lives for people living with HIV.

When World AIDS Day 2021 came around, I was incredibly moved by the testimonies of my peers, colleagues and friends who were bold enough to share their HIV statuses. Every post I saw on social media was like a gentle tug on my heart. I knew deep down that it was time for me to share my story. I spent the whole day debating it with myself. What would happen if I did disclose? How will my family react? What if my employer found out? I would find a reason to talk

myself out of it, then I would see another post of a brave soul sharing their story of triumph. Then I began to ask myself, what if I don’t share my story? What life can be saved by my testimony? Who is silently struggling that might find comfort in knowing they’re not alone? I reasoned with myself that the risk of shame was not worth the missed opportunity to change someone else’s life.

Without giving it another thought, I did it. I publicly declared that I am a person who is not just living with HIV but THRIVING with HIV. I used my post to speak against stigma and to encourage others to get educated and seek out resources. For the first minute

or two after I made the post, I was a little anxious. But as the comments began to pour in, all the anxiety I had been holding on to for 15 years quickly dissipated. I was completely blown away by the positive feedback I received. I had friends, family, and coworkers sending me private messages thanking me for sharing my story. Folks who I had known for years began to share their own stories with me. The outpouring of love and affirmation was confirmation that I

made the right decision. It is a moment I will cherish for the rest of my life. The idea of sharing my HIV status was once a daunting thing. I thought that sharing my status would be the admission of some sort of failure. On the contrary, I discovered that it was a declaration of personal triumph. I went from being a 20-year-old young man with no sense of direction and limited resources to a person who has been blessed to build a better community for our future. I have been privileged to use my story and my platform to make a positive change in the world. I have accomplished more than I could have ever imagined, and my family couldn’t be prouder of me. No longer do I see my HIV diagnosis as a marker of shame. Instead, I embrace it as a badge of honor.

To those living with HIV who are still struggling with stigma, know that you are beautiful, brilliant, and blessed. Continue to affirm yourself and do what is necessary to live a full and vibrant life. Know that you are not alone, and that you are loved beyond measure. I encourage all of us to do our part to end HIV stigma. Continue to seek out education. Embrace and affirm those around

you who are living with and impacted by HIV. Take care of yourselves by making wellinformed decisions about treatment and prevention options. Whether you are living with HIV or without HIV, we all have a part to play in ending the HIV epidemic. Let’s roll up our sleeves and get to work together.