“NIH was the first place that I could actually say out loud ‘I’m HIV-positive”

NIH nurse Shannon Kruk and social worker and behavioral scientist Dr. Lori Wiener talk to Jamie Gentille about her experience as a pediatric HIV patient in the early days of the HIV/AIDS epidemic. Jamie, describes having to hide her diagnosis from her friends and how NIH was her safe space. We hear first from Jamie, then Shannon, and then Lori.

Transcript

Jamie Gentille: I know now as an adult that there is a great sense of urgency, but at that time, coming in as a 10-year-old kid, not really knowing what to expect, I was so pleasantly surprised when we walked in and the nurse on my first day there was Batman; it was around Halloween time.  And it ended up being this really cool place.

Shannon Kruk: It was such a privilege to be your nurse for so many years.  I love your sense of humor.  I love your approach on life.  You are very special to me and to Gloria as well.

Lori Wiener: It was a time when people didn’t say the words ‘AIDS’ or ‘HIV’ out loud.  That’s something that most people had not even shared with some of their own family members, never mind friends or neighbors or community.  And so we started support groups, and at that time we had support groups three days a week and they were packed.  People were so glad to be able to know they could be able to talk to somebody else with the same disease and to know that they weren’t going to share it with anybody else at home.

Jamie Gentille: NIH was the first place that I could actually say out loud, “I’m HIV positive.”  It was a double life.  When I would leave NIH as a kid, we would switch gears and go back to secret life.  When I would come to the clinic and be away for several days at a time for appointments, when I went back to school and the kids asked me where I was, I said I was at the doctor’s because I have a heart condition. 

So, I kind of reverted back to I can’t really tell anyone about this, so it was sort of like passing the threshold into NIH becomes this place where you can talk about it and the people aren’t going to judge you for it or ostracize you or shun you from the community, ‘cause that’s really what we were worried about at that point.  It was like Dorothy walking through the doors to the Technicolor Munchkin land.  It was a whole other world.

Every time we were there, Shannon, you were present, Lori, you were present to take care of me, and I know you had hundreds of other things to do and hundreds of other kids to see that day, but I felt that you were fully invested in me and that made all the difference in me learning how to cope with this and start to learn how to talk about it with other people.

Lori Wiener: We know that people have really done well is when they could have that identity and have that support in the HIV world because they’re more comfortable and ignore the rest of the world.  But that’s hard to live just in that world.

Jamie Gentille: It was hard.  I got really tired of it by the time I was 17 or 18 and decided to heck with it, I would just tell people about it.  And I was getting ready to graduate and I just decided I have such close friends at this point, I want to be able to tell them all about my life, and I don’t want to have to be a secret from them.  And I also knew that we were all going off to college and there was a real fear in my head that they would go and do something stupid, not knowing that they are at risk as anyone else. 

So I decided to tell my graduating class in an assembly, and I, like, sneak out of the crowd and backstage and all of a sudden I’m the assembly.  And it was amazing; they were incredibly supportive and came up and hugged me, almost the whole class, and it was one of the best moments of my life because it was jumping off of a cliff not knowing if my parachute was going to open – and it opened.  And it was amazing.  And I couldn’t have gotten to that point without you guys and without having the support leading up to that.  It would have been impossible.