When the White Coat Changes: Lessons from a Transition in HIV Care

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:

• Grieve, and then gather your strength.
  It’s okay to feel sad about losing a trusted provider. Your connection was real. Feel it, but do not let it freeze your forward motion.
• Carry your wisdom into the next room.
  You know your body. Bring a summary of your past medications, side effects, what worked and what didn’t work. Share it with your new provider.
• Set expectations from the start.
  Say what respect looks like for you. Ask questions about their experience, especially with Black women and older adults living with HIV.
• Demand cultural competence.
  You are not asking for too much. You’re asking for basic dignity. If they can’t give it, they’re not the one to provide care for you.
• Use your voice without apology.
  Speak up, if something doesn’t sit right. Don’t shrink to make others comfortable. Your life is on the line.
• Find support and community.
  You don’t have to do this alone. Connect with patient navigators, peer mentors, or a sister circle that gets it.

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.