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In 2014, I was invited to participate in a panel discussion for the Presidential Advisory Council on HIV/AIDS (PACHA) in Washington D.C. I excitedly accepted the invitation, and spoke about the benefits of Medicaid expansion for people living with HIV.
Soon afterward, my name made the rounds on social media when I was identified in an online article as an activist and inspiring trans woman living with HIV. As my friends and acquaintances started to reach out and get in touch to congratulate me, I quickly realized it was time to confront the HIV stigma publicly that I had learned to quietly deal within my personal life.
Up until that point, I wasn’t at a point where I was ready to share my HIV status outside of the community. Up until that point, I had been able to control who and how many people knew about my status. Up until that point, I felt safe being able to reveal or not reveal my status to people I trusted or didn’t trust.
But I had just stepped into advocacy, and didn’t realize what might happen after I spoke on the PACHA panel. I remember trying to delete the article off of my social media pages, but then finally got to the point where I realized that it was time to fully live my truth.
Being open about my HIV status has led to much more support from people in my life than rejection or negative attention, although there have been a few examples of times when I’ve had to make tough choices about the people in my life.
I revealed to a family member—who was going to stay with me—that I was living with HIV. They wanted to bring their own eating utensils, plates and cups with them so they wouldn’t have to use mine. I explained to them that there was zero chance that they could contract HIV from me, but this didn’t change their mind.
I eventually had to tell them that it wouldn’t be necessary for them to worry about it—because they were no longer welcome in my home.
When I was diagnosed with HIV, in 2012, I made a vow to spread as much awareness as I could about HIV. But I found that I had a lot to learn—about myself, and HIV—first.
After my diagnosis, I felt completely alone in a time of intense need. I didn’t know where to get help, and was scared to even share my status with people who might be able to help me access services. I took a few months to read as much as I could about HIV, and with the assistance of a local AIDS service organization, I got into HIV care and on medications.
My diagnosis also inadvertently led me to the transgender community. When I was first diagnosed, I didn’t have the term “transgender” in my vocabulary. I simply wasn’t identifying that way. I had the hair, the clothes, and everything—but I didn’t know about this huge community of which I was a part.
It wasn’t until I traveled to Washington D.C. to speak at PACHA when I met other trans activists and connected to a new community of people who were excited to hear my voice as a trans woman living with HIV from the South.
Now, I maintain an undetectable viral load and share the message of undetectable equals untransmittable to others. It’s an exciting message and inspires a lot of hope for many people in the community.
Tiommi Luckett (Photo: Kelly A. Burkhardt)
It’s wonderful to know that because I’m taking the medicines and I’m healthy that I will not transmit HIV to any sexual partner. I only wish more people knew how HIV is transmitted and that you can prevent HIV from being transmitted. Everyone should get tested, and know their status. Unfortunately, I think for many people it’s “out of sight, out of mind.” That’s how I lived my life for a while.
Although the world can be a violent and scary place for trans women of color living with HIV, I really don’t want the narrative to be one of despair. I’m tired of the narrative that the average life expectancy of a Black trans woman is 35. Look at me—I’m 41. I look to my elders, and hope others will too.
I hope my story can be one of hope. Living with HIV does not mean your life is over. You can have pleasurable sex—whatever way that looks like to you. You are still a fully capable and functional human being.