By Afrekete*
Recently, when my trusted doctor retired, it stirred emotions that I was not prepared for. As a Black woman aging with HIV, losing a provider who had become part of my healing journey felt like a gut punch, because I did not always have compassionate care.
After I was first diagnosed, I was under the care of a highly regarded White male doctor. His reputation was stellar, but for more than three years, I never reached undetectable. Every month, my labs T-cell count hovered between 365–400, and it felt like a countdown I could not control. I lived in fear of falling below 200—the number that marks an AIDS diagnosis. I feared dying.
However, it was not just the medical part. I was also battling something deeper: stigma.
I was known in my community. Every time I pressed the elevator button for the infectious disease floor, my heart raced. I felt exposed and ashamed, as if my diagnosis had already entered the room before I did. Stepping off the elevator and walking down the hallway felt like a mile of judgment.
I struggled with adherence at times—like so many of us do, but instead of compassion, I was met with cold dismissal. Once I was told, “Lady! Take the medicine or you’re going to die.” Just being addressed by “lady” and not my name was a problem. I felt like a case study, not a person or someone worth slowing down to help.
Eventually, I changed hospitals. It was a decision I believe saved my life.
I met a Latina nurse practitioner—a woman of color with two decades of experience and a heart full of humanity. She listened. She adjusted my treatment plan, and after just three weeks on a new regimen, she looked me in the eye and said: “Are you sitting down? You are undetectable.”
That moment rewrote my story. I had new medicine, new provider and new possibilities.
Years later, as I prepare to start over again with a new provider, I want to offer encouragement and practical wisdom for any sister walking this same path. If you are transitioning to a new HIV care provider, here are a few things to remember:
Transitions are never easy, but it’s likely you have survived worse. We are more than worthy of a provider who sees our full humanity. So, like me, keep searching for the best care and be guided by your strength and their respect.
*The author requested to write this blog under this pseudonym.
Wow! That was emotional and inspiring. The tips you provide are not just for HIV but for humanity and human dignity! Thank you for your courage to be soft and tender with us and deliver this necessary message through your own personal story.