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.
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?
"If men could get HIV from having sex, then why couldn't women get HIV from having sex? ... I actually was one person who started very, very early \[in the epidemic\] using condoms 100 percent of the time. The problem was I was already infected."
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.
Really, for a no-name black woman? This is a cover that's reserved for entertainers, for actors, for famous people, you know. And she said, "We would like to put you on the cover of the magazine."
And I said, "Miss Taylor, you know nothing about me. You heard me speak for three minutes; and why would you want to put me on the cover of your magazine?"
She said, "Because I believe you have a story to tell; and I want to tell it."
And you have to understand something. Susan Taylor received a lot of criticism for putting me on the cover of the magazine at the time. Here it is, this little bitty black girl from a working class family, with AIDS, nonetheless, on a cover -- for the holiday issue -- that's reserved for people of importance. It was brave. I say it all the time. It was incredibly brave of Susan. And it was incredibly brave of me.
"I'd stand in the grocery stores, and listen to people have conversations about me. They'd say, 'She's not the woman with AIDS; the woman with AIDS is on the inside. This is the model. She can't have AIDS!' But I did."
They sold the most December issues that month, from what I understand, in the history of the company at the time. Because people didn't know.
And it was really interesting because I cut my hair off, right after the photo shoot. You know, it was a six-month lag between the photo shoot and the issue hitting newsstands. I'd stand in the grocery stores, and listen to people have conversations about me. They'd say, "She's not the woman with AIDS; the woman with AIDS is on the inside. This is the model. She can't have AIDS!"
But I did. And what we did for black women was we told a different story of AIDS. We told the story of heterosexual monogamous relationships: looking for Mr. Right! You meet a man; you think he's wonderful. The relationship is great. Then the bread molds, and you move on to the next Mr. Right. And the cycle keeps going until you get married.
And we told that story through my life. And women still bring their copies of the magazine to me, in mint condition. I mean, the one copy I have, the eyeball is scratched out. And women bring it to me and they say, "You changed my life." And I am, honest-to-God, I'm so honored for that place in history. It's an awesome place in history to be.
What was your family's reaction?
My mom who raised me, Mama, who is really the one that I talk about the most; Mama didn't understand it. Because, for Mama, I was a whore. For Mama, I was this nobody. My mother had rationalized my life through her own life.
When I told my mother that her husband was grabbing my breasts, she told me to go sit down somewhere; she wasn't going to let me mess up her stuff. And when a woman decides to stay in a relationship with a man who's abusing her child, she has to explain it. And her explanation is, if I wasn't fast, he wouldn't want me.
And so my mother could never quite reconcile what she made herself believe about me to the person that I really was -- a person that had really spent a good portion of my life, and even somewhat today, as an overachiever trying to meet Mama's approval. And here I am, at this one level, I've done this incredible thing for black women ... but my mother could never see beyond me being that little whore. And she died that way. By the time my mother died, I had an Emmy award. I had been featured on Nightline three times, on Oprah; I mean, Jesus, I couldn't have been more famous. She never could get there.
My childhood's interesting. My parents were heroin addicts. And my paternal grandfather took me, to raise me. He died when I was 6 years old. His wife kept me, and raised me. That's the woman that I call Mama.
Prior to my mother's marriage, my uncle raped me when I was 7, repeatedly, for about a school semester. Because he picked me up every day from school in kindergarten, and he taught me my ABC's. And when he finished teaching me my ABC's, he took me in the room.
Then my mom met a man; they lived together in a common law marriage, and he had seven kids. And the oldest son in this family raped me for a school year. I was 10, 10 to 11; and he was 19.
And then my mother met and married a man when I was 12, 13. They were together at 12; she married him when I was 13. He never penetrated, but he hemmed me in corners. It was sexual intimidation. He grabbed my breasts. He grabbed me between my legs. That went on until I left my mother's home, which was October of my senior year of high school. The intimidation never stopped.
I was afraid. My mom had took a job once, working a midnight shift; and I would sleep in my clothes. I would always get in the back seat of the car when he drove me somewhere. One day he said to me, "Your mama said that you're scared of me. If I wanted you little ass, I'd get you in the back seat or the front seat."
I lived with this, and it was torture. But it became even more torture when there was no protection whatsoever in my home, when my mother didn't protect me.
And even with your uncle? Even with the stepbrother?
They didn't know.
Oh, you didn't say anything.
"I was 29, in a therapist's office; and I said, 'I've been having sex all my life. I'm a sexual being. I've been having sex since I was 10 years old.' And the therapist looked at me and said, 'How does a 10-year-old have sex with a 19-year-old?' And I cried for two weeks."
They didn't know. I kept those early ones a secret. And in fact, let's be honest, I didn't even understand that I was being raped. I was 29, in a therapist's office; and I said, "I've been having sex all my life. I'm a sexual being. I've been having sex since I was 10 years old."
And the therapist looked at me and said, "How does a 10-year-old have sex with a 19-year-old?" And I cried for two weeks.
Because you had no idea.
I had no idea. There was still a disconnect. I accepted that I had been abused. I could name off the abuse. But I didn't work through it and cry, and hurt for the little girl, until I was in my late 30s, early 40s.
Yeah. And I have another abuse in there that I didn't talk about. I was raped by my mom's stepsister for a summer.
Did you ever tell your mom about that?
I didn't, because I thought I'd get in trouble for being fast. Because by then my brother had raped me for a year, and I understood what "playing house" meant. And I understood what it was like to receive attention ... You see, the abuser locks you into the secret. They spend time with you, and it becomes your special relationship. My brother used to pop popcorn; we used to watch TV. And then he would get the covers, you know? And we would watch the scary movies. And the covers would protect us from the scary man. And, you know, it starts with a hand on the thigh; and it goes from the thigh to the vagina, over the panties. And then when he's comfortable with that, it's the vagina, bare.
And the fact of the matter is, it's that your body betrays you. It doesn't matter who's touching the clit; it feels good. And so your body betrays you, as even a little girl.
So you don't even think it's abuse.
You don't. But once they penetrate and it does hurt you, you're locked into the secret. Because you know, then, this is being fast. And you've been taught in your family that being fast would get you in trouble.
And then the reality is, you don't want your brother to take his attention away from you. And so you take the good with the bad. And they lock you into the secret. But the time my aunt raped me, I had already experienced my brother. And so I knew what this meant.
I was 11. And I thought I'd get in trouble. I was on vacation in New Jersey. And being at my mother's father's house was wonderful. And I thought I'd never get sent away to a vacation again, that Granddaddy wouldn't love me anymore, and that I would be a bad girl, and that I'd be in trouble.
You get locked into it. I mean, it is a torturous world. That's why a lot of times children who have been abused don't understand the abuse. They think that they're participating, rather than being raped.
How has this abuse played out in your relationships as an adult?
Well, the fact of the matter is that I was taught very young that sex was love. This is what you do when people love you. And so by the time I was dating by my own will, it was a natural thing for me to have sex with my boyfriends because this is what you do.
"When you grow up in an unhealthy, abnormal life, it becomes your normality. It becomes the way of life. And so you first have to learn what normal is, and then you have to work to get to a place where you can practice what this normality is."
And you exchange sex for love. You do. And when the relationship doesn't work out, you go to the next Mr. Right, and you exchange sex for love. And you may pick your partners very well. It really has very little to do with promiscuity. It has to do with the normal course of the cycle of meeting a guy, thinking he's wonderful ... and you move to the next Mr. Right.
But understanding that sex is not love becomes something that you have to get to. You see, when you grow up in an unhealthy, abnormal life, it becomes your normality. It becomes the way of life. And so you first have to learn what normal is, and then you have to work to get to a place where you can practice what this normality is. Because what was normal for me was abnormal.
At what point did you decide that you needed to go into therapy and work out some of these issues?
I started therapy for the first round in my early 20s, when my biological mother tried to commit suicide. I was in for about six months. And this therapist identified some other issues. Obviously, I was an adult survivor of childhood sexual abuse. I had grown up in a house with an alcoholic. I mean, there were some clear characteristics of an adult child of an alcoholic. And we kind of put those in a corner, and we left them there. And I just left them there.
When I made a transition to AIDS, I became clinically depressed -- and I knew it. I knew that I was not good. And so -- I will never forget this -- I was in graduate school, working on my master's in political science. My boyfriend dropped me off to school. And I left his car and went straight to the nearest school campus phone, and picked it up and said, "Do we have a Counseling Department here?" And they made me one of those emergency appointments. Instead of going to class, I went to therapy.
They told me that there was a waiting list for eight months. And I sat with this woman for an hour. And the next day, they called me and gave me a permanent person. And that was in my late 20s. And then I stopped for a while. And then somewhere in my 30s I knew that I needed help. I wanted to be healthy.
And it took a lot of work to get here. My last four years in therapy was about learning what, understanding what, healthy was; and applying that to my life. I'm there now.
Kellee Terrell is the former news editor for TheBody.com and TheBodyPRO.com.