When It Comes To Stigma, How Do Black People Living With HIV Thrive?

By Kellee Terrell

As we celebrate Black History Month and enter the 41st year of the HIV/AIDS pandemic, as a community, it's essential to take note of how far we've come and… how long we have to go. Yes, HIV/AIDS doesn't have to be the death sentence it once was—thanks in part to grassroots activism that helped develop life-saving medications—but we still know there's much more work to do. 

The numbers alone prove that point. Despite us making up only 13 percent of the U.S population, according to the Centers for Disease Control and Prevention, Black Americans account for more than 40 percent of newly diagnosed HIV cases each year. Most of us know that these statistics go way beyond condom use. These numbers reflect a combination of many factors: Poverty and economic instability, institutionalized racism, gender inequality, homophobia, transphobia, poor access to health care in general, and mistrust in the medical system, to name a few. 

We also can't forget stigma. 

Whether it stems from plain misinformation, cultural shame, or religion, stigma is a powerful force. It can stand in the way of someone getting testing and seeking help and even treatment. Stigma internalizes the negative messages society has taught us about people living with HIV/AIDS, sexuality, and gender identity. It distorts the way one looks at themselves, encouraging those to hide from the world and people who love them because of their HIV status. But the good news is that it doesn't have to be that way. 

Every day Black people living with HIV/AIDS are doing their best to overcome these obstacles to be visible, proud, and build community. Every day, they refuse to stay silent by speaking out to make change, educate those at-risk, and help validate other people living with HIV. Most importantly, they do more than survive in the face of stigma; they thrive. Here's how: 

Octavia Y. Lewis, MPA

Age: 40

Year of Diagnosis: 2006

Pronouns: she/her/hers

As a Black woman of transgender experience living with HIV, I've learned to thrive in the face of stigma through honing my life survival skills. Those skills are intertwined personally and professionally, and managing them takes work. I must constantly remind myself that I'm more than enough and that I'm worthy of taking up space that some may take for granted. I know that I must show up and enunciate every word and have rehearsed every point in my head a thousand times before I allow it to part my lips.

I no longer allow my diagnosis to lead the conversation but make room for it in my narrative as it is a part of my being. Every opportunity I'm allotted to speak truth to power regarding the disparities that people living with HIV/AIDS face,  I do so because our lives matter. We deserve to lead the conversation and create solutions to end the stigma that we face. I no longer accept the narrative of needing to be saved; we have the blueprints to save ourselves now. We just need the resources to do so.

Ciarra "Ci Ci" Covin

Age: 33

Year of Diagnosis: 2008

Pronouns: she/her/hers

First, I know my community helps me thrive in the face of stigma. For so long, I was the only person I knew living with HIV. I would believe the stories of those around me and even the ones I would tell myself because I didn't have anyone around to tell me otherwise. But today, I have a community of others living with HIV, allies, and other supporters who don't make HIV feel like the end of the world. Through that communal support, I am empowered and truly thrive in the world from the inside out. 

Achim Jeremiah Howard

Age: 51

Year of Diagnosis: 2010

Pronouns: he/him/his 

I thrive in the face of stigma through education, advocacy, and activism. Most importantly, I make sure to live my daily life authentically and unapologetically by participating in anything I can to raise awareness—documentaries on discussion panels, Zoom meetings, and posting on my different social media platforms. My motto is, "to wake up is to be woke,” which encourages others to open their mind and elevate their thought process and understand that HIV is no longer a death sentence; with treatment, you can live a normal life. 

Juan Michael Porter II

Age: 39

Year of Diagnosis: 2015

Pronouns: he/him/his

The worst HIV stigma I've faced was self-inflicted. Initially, I told myself that my diagnosis was not a big deal. But the truth is, I felt disappointed because I believed that I'd done "everything right" to test positive. Thankfully, I overcame those feelings by acknowledging the ridiculous judgment embedded within that notion of "righteousness." What also helped was recognizing that even though HIV sucks, nothing could prevent me from fulfilling my dreams.

Looking at external factors, including the low opinions many people have of people living with HIV/AIDS, I don't take them personally. Instead of wasting my time, I dismiss them from my life and get back to enjoying myself. It's similar to how I deal with racists: instead of minding their business, I concentrate on doing me and advocating for my beautiful community. Not to mention, living well, building supportive relationships, and loving myself are my recipe for thriving in the face of stigma.

Joyce Turner Keller

Age: 72

Year of Diagnosis: 2001

Pronouns: she/her/hers

As a minister and professional Black woman, I thrive in the face of stigma by being visible, unashamed, vocal, relevant, assertive, transparent, and confident. I make sure to speak my truth and live my best life, lifting others as I rise and empowering others to find their voice. 

Most importantly, I thrive by teaching, educating, and mobilizing others to join the fight to end ignorance and stigma, and shame. I also thrive by knowing I am a valuable asset to my community and country and worthy of my love for myself and others. And by having uncomfortable conversations in churches and quiet spaces where the fear and misinformation about HIV is still real, in the same places that many are afraid to hug, love, and embrace positive people because they are told this virus is a "sin."