Rae Lewis-Thornton was enjoying a career in high-level political organizing when she was diagnosed with HIV. The year was 1987; for the next seven years she barely told a soul about her diagnosis, which eventually progressed to AIDS. "By the time I had to disclose, the secret was killing me quicker than the disease," the nationally renowned speaker, activist and social media maven recalls. In this video, Rae talks about her early years -- not just as a young woman living with HIV at the dawn of the epidemic, but as an adult survivor of a childhood marred by sexual and emotional abuse. Watch the other videos in this series.
How did you come to find out that you were HIV positive?
I donated blood. Actually, I organized a blood drive. And what I thought was a thank you letter was a letter telling me that something was wrong with the blood I donated. I went to the Red Cross, and they told me that I had HIV.
The entire meeting took five minutes. I was 23 years old, and there were no medicines to treat HIV. At that time we really didn't know that much about HIV. We knew that HIV caused AIDS, and we knew that AIDS was a death sentence. But what we didn't really understand was that people with HIV would eventually develop AIDS. So, I actually walked away from the Red Cross building, in what I call quasi-denial, believing that I was never going to make a transition to AIDS.
So I kind of just dealt with it. I dealt with it by not dealing with it. It wasn't an issue for me. I went to the doctor once every six months, and things were fine. But then when I made a transition to AIDS eight years later was when I began to really have an emotional impact on me.
What year were you diagnosed?
I donated blood the winter of '86. And the spring of '87 was when I was told that I had HIV. But I was infected in 1983.
Back then, like you say, it was like a death sentence because there were no medications, really.
So for those eight years as you progressed from HIV to AIDS, what were you doing? Were you going to support groups?
You know, I didn't. Actually, it was eight years from becoming infected; but really more like six years, in between the time I found out I was HIV positive to the time that I made that transition to AIDS. I was in a study at NIH (U.S. National Institutes of Health), and I went to the doctor once every six months. They would do this massive blood workup, and then they would send me on my way. The doctor would send me a letter telling me what my T-cell count was. And that was basically it.
I didn't read any articles on HIV. I kept it a secret. I think my first seven years I told five people that I was infected, other than my partners that I dated during that period. And I just didn't deal with HIV. It was not a part of my life; although it was in my life, I didn't include it in any significant way.
Now, at some point there, the national recommendation came out for people to take AZT (Retrovir, zidovudine). And it was at that point I had to include it somewhat. And so I started this massive amount of AZT. I was sick all the time. I took the medicine because it was what I had to do. But I still didn't read about AZT; I didn't think about AZT; I didn't have conversations with anyone about it. I hid it very well.
Looking back, do you think that that was a mistake?
I think that, yes; it was a mistake to not learn about HIV as much as I could have. It was a mistake not disclosing my HIV. Because by the time I had to disclose, the secret was killing me quicker than the disease. And so I had all of this emotional baggage that I didn't need to have because I had hoarded HIV.
There's an African proverb that says, "He who conceals his disease cannot expect to be cured." And surely the secret was killing me quicker than the disease. But that was hindsight. And you have to understand something: They had kicked little Ryan White out of school. They were burning down people's homes. They had fired lawyers, you know, with purple spots on their face -- the Philadelphia story.
And I worked in politics. I worked very high up in politics, and I just wasn't prepared to allow -- not prepared; I wasn't going to allow -- HIV to interfere with my career. Kept it a secret.
Did you ever think you were at risk?
I didn't. I didn't think I was at risk. The fact of the matter is, when I was infected -- and you look at the timeline, the first cases were 1981; they were primarily white, gay men. By 1983 it had not changed that much, other than people who used blood products, or people who had blood transfusions. And we started to see some IV drug users. And since I've been drug-, cigarette-, alcohol-free my entire life, I never thought that that was me.
Now, there came a period, not those early days, early, early days; there became a period somewhere around '85, '86, '87, when I really started to think about HIV very differently. It went something like this: If men could get HIV from having sex, then why couldn't women get HIV from having sex? It just was an illogical kind of explanation that I was hearing. And so I actually was one person who started very, very early using condoms 100 percent of the time. The problem was I was already infected.
So I didn't buy into the logic. As the disease progressed, I stopped buying into the irrationality of the stereotype of who gets HIV.
But at that point, like you said, you had already been infected.
I was already infected, absolutely.
At what point did you disclose to your family?
Oh, God! You know, I grew up in a very dysfunctional family. All I had was a mama -- a step-grandmother who raised me -- and my biological mother, who I've talked somewhat about, who did not raise me. I told my biological mother that I had HIV when I made a transition to AIDS, and I started to disclose to this larger segment of my life. I told my mama, who raised me, that I had HIV two weeks before the Essence article hit the newsstand.
What year was that?
It was 1994. I made a transition to AIDS in '92, and I started speaking sometime in '93. And '94 was when I was on the cover of Essence.
So from '87 to '94, you hadn't disclosed your status to your family?
I had not. I had not disclosed to my family. And you want to hear something just really shocking? From '86 ... from '87 until about '89, I didn't even tell my physician that I had HIV. Because I went to NIH: That was my stupid rationalization. I'm going to NIH. Those are the best doctors in the world! I didn't need to tell this little Joe Blow doctor that I had HIV. And so it was really a well-, well-, well-kept secret.
I told my mother, who raised me, out of respect. Because I knew that Essence would hit the newsstand and I would become the talk of Black America.
Susan Taylor was editor-in-chief of Essence Magazine at the time. I received a Community Service Award for the work that I'd been doing. I'd only been speaking for about six months, and it was the Chicago Black Women's Expo. Susan Taylor was the keynote speaker. And they honored me.
It was an incredible evening -- it was a black-tie affair. I looked freaking, freaking fabulous. And men had been hitting on me all night; men sitting next to women had been hitting on me all night. And I was frustrated, and when I stood up to receive my award, I said, "You know, Black America, you all are in denial." I said, "Men have been hitting on me all night." I said, "Not only do I have HIV, but I have full-blown AIDS." And you could hear a pin drop. And then I said, "Thank you for the award," and I walked away.
Susan Taylor grabbed my arm and said, "Can I do a story on you?" And I said, "Sure." And two weeks later she called me and she said, "My staff and I have discussed it, and we would like to put you on the cover."
Which has never happened, really.