Now did you and your mom talk about it at all around that time? You both got this diagnosis basically around the same time.
We really didn't talk about it. She told me not to tell anyone, so for three years we just lived like that, just me and her and the doctors. So I went to school researching information about HIV on the computer. I'd print out everything I read and bring it home to her and she would read it. If someone would come, she would hide it under the mattress. And that's how we lived for a long time. She went with me to my doctor's appointments for just a month and then I decided I could go by myself. We just lived like that for a while.
So I started educating the people about it because some of the statistics that I found out, like one of the main age groups is 13-24. That was everyone in my circle, so I was like, OK, this is unacceptable. We need to know about this. We never talked about this before. So that's what made me want to get more involved, educate more people about it.
So at the time that you started to educate people about it, were you still not open about your own HIV status? You knew you had this knowledge because you yourself had HIV, but you didn't tell anybody else?
How was that? How were people responding now that you were starting to talk about HIV with your friends?
I just came out of the blue and just started to talk about it. And people were like, "OK," and they would listen, but halfway listen, I guess. Like, "OK, when are we going to the mall?" Like they would listen, and I could only push it so far down their throat. But no one really asked me, "Why are you talking about this all of a sudden?" I would get a random person, like, "What? You got it? You keep talking about it." And I would just say, "Oh no, my aunt died from it last year." I would just always use that as my escape to get out of the other question part. But my aunt did die from it, but I didn't care when she died from it.
Was she not somebody --
I was close to my aunt, but when we knew she was sick, we knew she was going to die. I knew she had HIV, but I didn't know what HIV was. So at the time, I just didn't care. I had other things I was worried about besides HIV. I felt bad for her. But at the same, I remember my mom was like, "Well she did things that she shouldn't have done and now she's paying for it." But that was just my ignorance and being selfish.
I hear you. So now you're talking to your friends about HIV. You're getting into the end of the first couple of years, what were the first things that you did to actually come to terms with the fact that you had HIV?
One of the first things that I did was I told my social worker that I wanted to get more involved, because I thought I was the only one in the world with it. And when I read on the internet that I wasn't, then I just wanted to meet more people that I could talk to, that could relate to what I was going through. Because, my mom, I could only talk to her for so much. So they introduced me to other girls that came to the clinic that were born with it, that have been going there since birth. So I was 17.
Most of these girls were like 14, 15. They were younger than me, but they had been there forever, so they kind of knew what was going on but they didn't really understand. They were still young. So no one sat down, just like no one sat down with me and explained it, no one sat down with them and explained it. So I was the one to sit down with them and tell them, "Well, this is what this means. This is why you have to take your blood. This is why you have to take the medicine," and stuff like that. After a while, the girls just started taking their medicine. The doctors were praising me, like, "What did you say to them? We've been with these kids since they were 2. They never took their medicine. Now they're taking it, undetectable."
So after I realized I could reach them, I just wanted to reach more people. I started volunteering at different AIDS services organizations in Delaware. I still wasn't telling that many people I had it, just like a handful of people probably knew, people I worked with mostly.
So just folks who also worked in the HIV field?
Yeah, so still no one in my family knew.
Well, sounds like you were a natural peer educator. That's amazing.
I always wanted to be a social worker. So I just tweaked it a little bit, I guess.
Exactly. You're basically like a volunteer social worker. But when did you start to tell people that were outside of the HIV circle that you were positive?
This was 2007, World AIDS Day. One of the girls that I met at the clinic, she was like 15, but she went to a special school in Delaware where they have a special school for kids who go through K-12, kids that have different illnesses, so they can't be in regular school. Some of them had cancer. Some of them had HIV. They all had different things, but she wanted to talk for World AIDS Day about HIV. She wanted me to talk with her, but I was like, "No, I can't do that. I have to ask my mom." But I was like 19 at the time and I had my own apartment and everything.
She was like, "You say you're grown. You still have to ask your mom." At this time, I was working at an AIDS service organization fulltime, doing HIV testing, needle exchange, everything, but I still had to ask my mom if I could do that. I asked my mom. She said no. But I realized it was something that I did want to do and I couldn't be telling this little girl no. Because she was small. I'm small, but she was way smaller than me, but her voice was so big and so loud.
I was like, "OK, I got to do it." So I did it and that was the first time I ever told anybody outside of the HIV community that I was positive. Actually, a social worker and a nurse from our clinic came to watch us. But it was really good. The kids, they were a lot younger than me, but they all listened. Their parents were there too, so they listened. They asked questions. And it was great. After I did that, I was happy. I was like, "OK, I could do this."