Let’s Talk About It

The cover of EGPAF Ambassador Jamie Gentille's new book, "Surviving HIV: Growing Up a Secret and Being Positive."


When I was a kid, my life was a secret. I couldn’t tell my friends that I contracted HIV from a blood transfusion during open-heart surgery when I was three. I couldn’t tell my teachers why I missed so much school for medical appointments. That information stayed within the four walls of my house, because we were afraid of what would happen if people knew. Would I get kicked out of school? Would my friends not want to hang out with me? Would our community ostracize us? I didn’t want to find out, so I kept my secret to myself.

As a child, I didn’t know if I would even live to see my thirties, much less thrive and be completely open about my status. But now I’m happy and healthy. This didn’t just happen by chance. This happened because thousands of people advocated for HIV research and education. Organizations like the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) have shed light on the issue and worked tirelessly to destigmatize AIDS and eliminate the disease worldwide. I am proud to be an EGPAF Ambassador. I’m proud to celebrate groundbreaking news of patients being functionally cured of HIV. And I’m proud to share my story with the world.

It was a leap of faith for me to tell the world that I am HIV-positive. Once it was out, I knew I couldn’t “un-tell” people. No amount of “just kidding!” would put the news back in the box. But I realized that I wasn’t doing myself or the HIV community any favors by keeping it a secret.

So let’s keep talking. Let’s figure out how we can reach those in need of life-saving services. Let’s support the research we need to make the next medical milestone a reality. Let’s demystify HIV/AIDS so that people feel comfortable talking about how to protect themselves. Let’s share stories.

I have published a memoir on living with HIV called Surviving HIV: Growing Up a Secret and Being Positive. The book describes growing up in a world of hospitals, tests, and doctors; and coming to terms with my own mortality at age ten, when I learned that I was HIV positive. It follows me through adolescence and young adulthood, as I navigated the wonderful world of dating, and attempted to find a balance between being HIV positive and trying to live a “normal life”. Finally, the book describes entering the working world as a healthy adult, and falling in love with my husband, my greatest supporter.

The past couple of weeks have been exhilarating for me—publishing my book and hearing the amazing news of functional cures are causes for applause. I see a bright future ahead of us, and I can’t wait to see what we will be celebrating next.

Jamie Gentille is an Ambassador for the Foundation. She lives with her husband in Reston, Virginia.

Surviving HIV: Growing Up a Secret and Being Positive is available in print and on Kindle here