It Happened to Me: I Grew Up HIV Positive

XOJane.com | December 19, 2012

Foundation Ambassador Jamie Gentille writes for XOJane.com about learning her status and living with the challenges of HIV.

“Your daughter has two years to live.”

That’s what the doctor told my parents when I was eight years old. Twenty-five years later, I’m happy to say that sometimes, I just don’t play by the rules.

It all started in 1979, when I came into the world as big, fat, 10-pound baby. Shortly after birth, during a routine check-up, doctors detected a strange heart sound. Months later, I began to have terrifying spells, during which I would pass out cold. After several more months of testing, I was finally diagnosed with Tetrology of Fallot, a very serious heart condition. The severity of my condition was so bad that doctors were amazed that I was still alive.

I underwent two major surgeries to correct the defects in my heart –- one when I was just over a year old, and the second when I was three years old.  By all accounts, the surgeries were a success. I recovered quickly and was finally able to be a normal kid, doing normal kid things. Years passed and everyone thought I was out of the woods.
Then my parents got a phone call.

“We need to tell you that we recently discovered that several patients received blood transfusions during a time when some of the blood supply was infected with HIV. No one knew that this was happening at the time. Jamie received a blood transfusion during her heart surgery –- right when this was all happening.”

Stunned, my parents were advised to bring me in for a blood test -- just to be on the safe side. There was very a small chance I had been exposed to the virus. A blood test would confirm that I was OK.

But instead of the reassurance my parents thought the test would bring, they learned that I was one of the unfortunate few who had been infected with HIV through a blood transfusion. It was their worst nightmare realized.

The test came back positive. I was eight years old and HIV positive. There weren’t any medicines for me to take. There was no hope. I was going to die.

My parents told my older sisters that I was living with HIV, that I would eventually get sick, and that one day, I would die. Hard words for any siblings to hear. Even harder at a time when little was understood about HIV, and that lack of information perpetuated stigma and fear of the virus.

Too young to fully understand what being HIV positive would me for me, I was told I had a bug in my blood. It sounded like no big deal -- I was just glad that there was nothing wrong with my heart.

From that moment on, my family worked hard to create as many memories as they could with me, before I got sick. We travelled. We spent all of our time together. My parents wanted us to be able to experience adventures as a whole family and our life was like a ticking clock.

A couple years after learning my status, my parents finally received some good news. New medications were being approved for children living with HIV. For the first time ever, there was hope on the horizon. I finally had a fighting chance. Beginning this medication meant starting a rigorous protocol of testing at a new hospital. Before I started my treatment, my parents knew that I needed to better understand my situation.

“Jamie, the bug in your blood is called HIV. HIV is the virus that causes AIDS.”

I knew the word “AIDS,” and I knew that people died from it.

I was scared and upset, but I was also hopeful. I knew that this new medicine was supposed to help me. I knew that I had a fighting chance, and I knew no one was going to give up on me.
I also knew that my life would never be the same. At 10 years old, I came to terms with the fact that I might not live long enough to go to college, get married, or have a family. I also understood that I had to keep my status a secret.

I responded amazingly well to the medications, and against the odds, grew to become a healthy teenager. I was fast-approaching a milestone that I wasn’t sure I would ever reach –- high school graduation. By this time, I had made great friends in high school, and I was tired of living a lie. I decided that it was time to share my story and I began to open up about my status.
College brought new challenges. Faced with a new level of independence, I had to figure out how to balance the need to take care of myself with my desire to let loose and have fun. These “wild and free” days of college were punctuated with strictly timed medications and frequent doctor visits.

I also knew that I had the added responsibility of not only keeping myself healthy, but protecting others. Wild, one-night stands were not an option for me. I never felt comfortable sleeping with someone if they didn’t know my status.  

Dating was as nerve-wracking as it was exciting. There was never a good time to tell someone that I was HIV positive. Never.

But I did -– I had to. And amazingly, most guys took the news well. I only remember one person saying that he just couldn’t deal with it. I was devastated, of course, but I didn’t fault him for it.
While I got pretty good at the “there’s something I need to tell you” talk, it was never easy. That kind of vulnerability was terrifying. Each time I told someone, I hoped that maybe it would be the last time. That day finally came when I met my husband Paul.

Paul and I were introduced at a happy hour one day after work. On our third date, I decided it was time to tell him my story. I was terrified. Paul and I had connected so much in such a short period of time. I already knew he was the one I wanted to spend my life with. If he couldn’t deal with my reality, what would I do? How would I pick up the pieces from that?

Paul was shocked and devastated. He took a day or so to digest the news I gave –- the longest days of my life -– and finally came to a decision.

“This is something that we can deal with,” he told me. “This is going to be okay.”

I had never been more thrilled and relieved in my entire life. I was falling in love with someone who loved and accepted everything about me. From that moment on, we were full speed ahead. We got engaged two months later, and married just seven months after that. Six years later, Paul is still my best friend, advocate, and love of my life.

Thirty years ago, no one thought that I would be here to tell my story. No one thought that I would be looking forward to a full and healthy life with my husband. I count my blessings every day. I have lost many friends along the way who weren’t as lucky as me. I’ve felt the pain of too many medical tests to count. I know the feelings of secrecy and stigma all too well.

Most importantly though, I’ve seen hope in the most unlikely of places. I’ve seen challenges give way to strength. I’ve seen love and support become my saving grace. I’ve seen a life that despite all of its challenges, I’m so lucky to be living.