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Facing HIV in Uganda and the United States

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By Josephine Nabukenya and Janice McCall

When you're a kid, a lot of times you feel alone. You don't think there is anyone else like you in the world. That feeling is multiplied when you grow up with HIV. But then you find someone who has been through what you've been through, who understands what you understand, and it makes you feel better.

That's what happened to us recently, and what we want to share with other girls and young women today, on National Women and Girls HIV/AIDS Awareness Day.

Last month, we met in California at an amazing student-run event, the Dance Marathon at UCLA to fight global pediatric AIDS. We were invited to the event to talk about our experiences growing up with HIV, to educate the UCLA community on the issue, and to join them in raising awareness and funding for the Elizabeth Glaser Pediatric AIDS Foundation.

We grew up 7,700 miles apart, in areas that seem like they are in different worlds. But the moment we met, we felt connected. We talked, we listened, and we recognized that it's not the differences that matter most, it's the similarities.

We're both strong, young women. We were both born with HIV, and continue to live healthy lives with the virus -- but it does not define who we are. And as Ambassadors for the Foundation, we are both eager to share our experiences to inspire others to get involved.

Our stories begin in pretty much the same way -- living with HIV for years before we knew the truth:

Josephine: "I first learned when I was around 10 years old. I read a letter that I wasn't supposed to see that disclosed my family's status and made me understand why we were experiencing so many medical problems."

Janice: "I learned when I was 11. My mom told me, but asked me to keep our status a secret. She was scared that if others found out, we would be defined by our status."

Once we learned our status, life for both of us became more complicated:

Josephine: "I felt bad at first because I thought I was going to die. I hated the way the community looked at my family, and for the first time I experienced true discrimination."

Janice: "I didn't want anything to do with it. I thought that if I pushed it aside, it would go away."

Of course, HIV doesn't work that way. Eventually, we all have to understand that we can't run away from the challenges in our lives:

Josephine: "The first time that I disclosed was in secondary school. My teacher found out through the media. I felt relieved that I didn't have to keep my status a secret anymore, but I was still scared of reactions from my peers and community. At first it was hard, but nowadays, because of the peer counseling and education, negative reactions are declining."

Janice: "My first disclosure was the summer after my sophomore year of high school. I was dating someone and I felt I needed to tell him. Later that year, I told my other best friend. It was like a relief. A weight was gone. After that, I decided to be more open about my status. To my surprise, people react positively more than they react negatively."

But we both agree that the key for any young person living with HIV is to make sure you disclose on your terms, when you're ready:

Josephine: "Wait until you feel like doing it, because forcing someone to share their status is awful. Also, only disclose to those you trust."

Janice: "I totally agree. Wait until you are comfortable. You don't want to be forced into disclosure. Wait until you can accept it. You need to be accepting of yourself before you tell other people."

HIV is truly a global issue that affects us all, whether we live in St. Petersburg, Florida, or halfway around the world in Kampala, Uganda. In many ways, things are improving. But in some ways, there are still big challenges:

Josephine: Discrimination and remembering to take care of yourself properly are two big ones. I used to forget to take my medication, and then it was too late. Poverty is also a big challenge.

Janice: Disclosing is a big challenge. It's really hard because you have friends that you care about and you're trying to build relationships and you're not sure if that person is going to accept you. If you're going to tell this person, then they have the right to not be your friend anymore.

When it comes down to it, we want all kids living with HIV to understand that they are not alone. Don't give up. Just because you're living with HIV doesn't mean you should stop living. Take your medication. Follow your dreams. Don't let HIV define who you are.

Growing up, we would have never dreamed that there was someone out there from a different place, who looks different and sounds different, but could still be the same in so many ways. But look at us, hanging out together, and talking to each other face to face.

Today, we hope we can share that experience with all kids and young adults who need it -- in the U.S., in Uganda, and throughout the world.

WHAT YOU CAN DO:

Find a list of National Women's And Girls HIV/AIDS Awareness Day events here.

Find a list of states with the highest AIDS rates and ways to take action here.

Janice McCall, 18, and Josephine Nabukenya, 18 are Foundation Ambassadors for the Elizabeth Glaser Pediatric AIDS Foundation. Janice lives in Miami, Florida, where she is a freshman in college studying public health and international relations. Her goal is to become a global advocate in the fight against HIV/AIDS. Josephine lives in Kampala, Uganda, and is in her final year at secondary school. She is working to become a journalist and educator to help reduce stigma around HIV/AIDS in her community and throughout Africa.