Barbara, age 55 / Florida, USA


I thought I might want to have a baby and I was 43, and I knew I would have to get tested before I would do that. I am unmarried and I’ve never been married, so I was sexually active. I lived in Africa for some years, where we know that the epidemic has higher prevalence. So I was just very scared about it. And like most people back in the 80s/early 90s, I didn’t want to know. And because there was minimal risk but still some risk, I just kinda kept putting it off. I knew that there were medicines available and that there were programs, because I was a student at the time and not able to afford the medicine. So when I was assured of those things I thought, well, let’s go for it. So that was, I think, March of 2001.

I’ve had no real illnesses as a result of the HIV even though, when I was diagnosed, my CD4 count was low so I got an AIDS diagnosis immediately. But I’ve never been sick, I’ve never had any opportunistic infections. Even my viral load was never high from the time I was diagnosed, so that’s made it easy. I haven’t felt anything, really, as a result of the HIV. I had access to healthcare and the medicines through the Ryan White program because I had student health insurance and it didn’t cover the medicines and all that. Now I actually have benefits through my job.

I was a PhD student. It took me 14 years to get my PhD, but I got it. I did medical anthropology. Part of the reason it took so long was I got the diagnosis and kind of couldn’t do anything for a while and then kind of lost my motivation. I was gonna do my fieldwork in Africa, and then once I got on medications we all kind of thought that it would be easier if I just did something in the States. In the end, because I work on an HIV program, we decided it would be easy for me, and probably beneficial for our program, if I did something that was related to the program.

I remember when I got my diagnosis and started this job doing data entry for this AIDS program. Even though it was an AIDS program I didn’t disclose for at least a year, maybe even more. To my close colleagues. And I do remember sitting in meetings and people talking about different aspects of living with HIV or what clients do, you know, in our program, and wanting to say something as a person with HIV, and not doing that. So, I think there was a tension for me.

When I think back on it, I don’t know why, because I knew that my colleagues would be fine with it… but I think that there’s that internal stigma. When I first was diagnosed, it was just so new. And it was just, I don’t know, it was frightening to have this new identity, I guess, this part of me that I just couldn’t bring myself to share right away. I mean, I was very nervous.

I have not been a victim of stigma, and I have a wonderful group of friends, and even my elderly parents, who still worry about me but love me even now, always. It makes a big difference. Plus I just realized how many people’s advocacy, research, and all those things before I became positive have allowed me to be healthy today, and so I am forever thinking how grateful I am. Many, many people with HIV are not in this space, basically because they were born in a different country where they don’t have the resources.

It was horrible to tell my parents, I will say that. They were in their 70’s, and I was gonna go home to visit them, and I decided that on this visit I was going to tell them. I told my mother first. When you say, “Oh, Mom, I have to tell you something,” I think she knew immediately that something’s wrong. I don’t remember exact words, but I do remember my mother saying, “Is it life threatening?” And I said, “Well, yes. And no. Yes, it’s life-threatening, but, um, I’m, you know, doing fine.” And then I told her.

She was actually really good about it. I think maybe she was in shock, I don’t know. And then we went into the other room and told my father. My father is very quiet so he kind of didn’t say very much. I said, you know, I am doing really well, the medicines are wonderful, and I’m pretty sure I’m gonna outlive you, which is, I think, as it should be. And my mother said, “Well, you know, Magic Johnson, he’s doing really well with that!” And here’s these two white elderly people in Chicopee, Massachusetts, and someone like Magic Johnson doesn’t even know what an influence he has on complete strangers because he showed the face of AIDS and disclosed, publicly. You never know who you’re gonna help.

I haven’t had a relationship. But I never was really good at having relationships before, so it’s not like it’s really a big difference. And I wonder sometimes, you know, what would I do? You know, if I met someone. Especially someone who wasn’t positive. I know that I would tell them immediately, but I just wonder how that would go.

I’ve never been married, I don’t have children. Sometimes I regret that. Most of the time I don’t. I do hear of women who married for the first time in their 50’s and I think, “It still could happen…” Would I like that? Yes. I would love to meet a man who would be my life partner. And because I don’t have children, that’s the other thing, sometimes growing old and thinking about being alone… But do I really, really want it? I guess if I did I’d be out there looking and I’m not, so I just kinda take it as it comes.

I’m content. I don’t know that there’s much that’s been difficult. I think maybe a little bit of apprehension about the future because, number one, I don’t know if, at some point, the medicines won’t work or I will have the effects of the medicine or the virus as I age, so there’s a little bit of that apprehension.

I’m content and grateful. And I know a lot of people say that, but I never used to say I was grateful, even when I was. And I don’t know exactly how this happened, because I’ve moved around in my life a lot, and every time I’m in one place I think, “Oh, if I could only get to this place then maybe things would come together.” And now, I’m not necessarily in the place where I want to be, but I’ve somehow just learned to appreciate where I am.