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HIV Disclosure: African Americans Tell How They Told

February 1, 2011

HIV Disclosure: African Americans Tell How They Told

It's been said that the intense focus on privacy in many African-American communities creates a "veil of secrecy" around HIV, making it profoundly difficult for many individuals to be open about their HIV status. Here, African Americans living with HIV share their experiences telling others they're HIV positive -- sometimes with unexpected results.

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Raven Lopez

Raven Lopez, Brooklyn, N.Y., diagnosed in 1991, at age 18 months

All of my friends that I told, they all got emotional and they all started crying.

But all of them, they said, "No matter what, Raven, we will still love you and you will always be our friend."

Read more about Raven >>

Bishop Kwabena Rainey Cheeks

Bishop Kwabena Rainey Cheeks, Washington, D.C., diagnosed in 1985

My relationships are good. I didn't hide anything. I told them when I found out, when I was in the hospital.

It's important to build a support system around you before you get sick. If you got sick right now, you should know you could call one person, and they know everybody to call.

Don't assume family and friends will not love you. Most of the time, you will be quite surprised -- they come around and are there for you. If they're not, it's better to find out while you're healthy than when you're ill. I tell people, "Take the power out of a secret: Tell it."

How do you decide whether to disclose your HIV status to someone?

I think you have to look at each person you tell on an individual basis: How important is that person in your life; how close are they to you? I'm a public person, so I've told it in magazines, newspapers, on TV. But that's not for everybody. Even when I speak to people now, I still sometimes get a little nervous. It's still like having to come out again when I'm standing in front of people saying I'm HIV positive. You have to begin to find those one or two whom you can tell, so it takes some of the anxiety out of it. If it's a really close person, you need to tell it, get it out of the way, and have faith that they can handle it.

What is the best response you have ever gotten from telling someone?

The best responses were times when I was ill. People showed up that I didn't expect to, just to be with me. I've been blessed with that. I've had people drive hundreds of miles to see me. I've been home and a friend came to me and said, "I want a set of keys to your house." And I said, "For what?" He said, "So that I can get in." And he just took over, and I sat back and laughed.

Also, I've had people come to say thank you because they've heard me speak, or watched me go through it.

What is the worst response?

The worst responses were in early days when people got judgmental. I knew they were just venting, and I was able to stand there and let them get it out of their system, which most people have a hard time doing.

I was speaking at one event, and a guy stood up and pointed his finger at me like he had a gun, squeezing the trigger, and waved at me to come outside. After I had finished speaking and greeting people, I went outside and stood across the street. My attitude was, I would die standing, but I wouldn't run and hide.

You still have people with negative responses. I've been blessed not to have it much because I'm very clear: If you want to judge me, then let's open up the doors, let's see what you're doing. I believe in the Scriptures, which say, "Love God with all your heart, soul and mind. And love your neighbor as you love yourself." It didn't say love your neighbor if they're HIV negative, or love your neighbor if they're straight. It just says, "Love your neighbor."

Also, a doctor told me in 1990, the first time I was hospitalized, "You will never walk again. You won't see Christmas."

I said, "Who told you that?"

He said, "That's my professional opinion."

"Then I'm safe," I said, "because you can be wrong."

He said, "I've seen this a hundred times before."

I said, "I'm a hundred and one. I'm the one you haven't seen, and I'm telling you, I will walk."

It wasn't easy. I struggled; I forced myself to get up. I had people hold me up, and let me wiggle, but be there to catch me if I fell.

Where do you think you get that strength?

Two places. One, my mother and grandmother were two very determined black women. Two, I started training in martial arts when I was 14 in a very traditional way with a Korean instructor. The mind-set was: You do not let anything defeat you. I studied meditation and yoga, which gave me inner strength to visualize and accomplish my goal. I would visualize myself standing and walking, just like when I was in a martial arts competition I saw myself going through and winning. Every time I stood up or took a step, I would go, "I win."

Building that kind of attitude gets you through. And having strong faith is of major importance for me.

Read more about Bishop Cheeks >>

Jahlove Serrano

Jahlove Serrano, New York City, N.Y., diagnosed in 2005

That's a funny topic within itself. It's on a need-to-know basis. You can't just disclose right then and there. You have to feel people out. That's what I do. I feel people out. I get to a point where I'll be like, "You know what? It's time to disclose" -- as far as for my sake. Not for them, but for me, so I can know how to handle all situations, because I like to be prepared.

One of the best responses that I got when I disclosed was that "You're not alone." And to hear that coming from somebody that didn't know me was definitely empowering -- because I didn't know what that meant. It meant in so many ways: You're not alone in fighting this; you're not alone in that people care about you; and you're not alone, period -- God is on your side.

That response happened to me when I disclosed to one of my friends. They were positive as well. I felt like I didn't know who to turn to. Something in my spirits told me, "You need to talk to this person." And once I disclosed, we both found out that we pretty much became positive around the same time. And it just feels great to have somebody on your side that you know personally, that they didn't know that you were in it with the same issues -- which brought our friendship much closer.

Robert Mintz

Robert Mintz, Kansas City, Mo., diagnosed in the mid-1980s

My relatives are 100 percent behind me -- they want to be educated.

I want to say something about my parents. Concerning my sexual orientation, when I came home from Vietnam and decided I had to come out to my father, I was scared of how he'd respond. I took him to a park, because then if he was going to do anything he'd have to do it in public, you know? Before I even opened my mouth, he said, "Son, God gave you to me, and nothing's gonna take you away from me." I told him, "Your son's gay," and he said, "Your point is?"

So when they learned about my diagnosis, they did not say, "I don't know you." They said, "What do you want us to do, besides keep loving you?" They spoke out whenever they heard prejudice against HIV-positive people or gay people.

Read more about Robert >>

Fortunata Kasege

Fortunata Kasege, Houston, Texas, diagnosed in 1997

The best one was the first time when I told my story in public. I remember it.

After my father died, it seemed like the end of the world. But I decided to go out and share my story. I decided to talk about awareness and maybe somebody will be touched by this, so it isn't all tragedy.

I got this invitation to go to Kentucky. They had a fundraiser gala for World AIDS Day last year. That was my first time to go up there and tell my story in public. I remember after I finished, everybody stood up and they remained standing there for a few minutes. They were clapping constantly.

I remember looking, and wondering, what is so special about this thing? I was overwhelmed; they had a standing ovation for me -- that was probably the only one that I can remember that was an over-the-top reaction. I thought, "Here I am, telling my business, right in front of people. I don't know how they're going to react." The outcome was remarkable. They were coming after that to talk to me and thank me for sharing my story and encouraging me.

The pastor from the community said, "People here, they're very uptight, and very conservative thinking about this disease. They have their way of thinking about the people who have this disease. You put a new face on it, and thank you. We want you to come back and speak to our church."

Read more about Fortunata >>

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Keith Green

Keith Green, Chicago, Ill., diagnosed in March 1994

My relationships with my family and friends have greatly improved since I was diagnosed.

There is a greater level of honesty and openness. When I was forced to have a dialogue about my HIV status, everything else became, like, nothing. Sexuality, whatever, you know. I have really seen that I do have people in my life who love me unconditionally, and I think that has been the thing that has kept me alive.

When did you disclose to them that you are positive?

I told my mom and six friends right away -- in high school, there were six of us, three guys and three girls who hung together like glue. I told my mom first, and then invited all of them over and passed around the letter I got from Lifesource [saying I was HIV positive]. But the thing was, I was like, "I'm giving you this information about me, but I don't want to talk about it and I don't want it to be brought up again." I didn't talk about it again for years.

How did they respond to you?

My mom really took it hard, really hard. I never felt anything negative, just a lot of concern, and I felt that in some way she felt she was responsible somehow. My friends were all very supportive -- and very scared. One said, "You know, I really thought we would grow old together. I can't believe this is happening to you!" They were supportive, but very afraid, and rightfully so.

I didn't talk with my girlfriend at that time. What I did was just break it off with no excuse or reason. And just recently, she was able to get closure on that -- because we're still close. She has two children now; I see her all the time. Recently I was able to disclose to her and talk about why I had to break it off at the time.

How do you want people to treat you?

I think they treat me exactly the way I want to be treated: I don't want any special attention, but I do want support -- support going through this graduate program, working the hours that I work. I just need support, period, and I get that.

How do you decide whether to disclose your HIV status to someone?

Lately, I don't have a choice. Usually when I meet people, they already know because I'm a pretty public figure and I talk about it wherever I am. But there are moments when it is an issue, when I don't want to talk about it and I don't want to disclose it. It's when I'm meeting someone new, especially if we are meeting to date. It's kind of like "OK, here we go ..." I usually start by asking them if they know their HIV status, and then we go from there.

Now, if someone tells me that they don't know their status, I'm very unlikely to be intimate with him, because in this day and age if you don't know your status, you're not the person for me: You're not cognizant of the fact that you are a man who has sex with men, and we're the highest-risk population, so if you don't understand that, then our worlds are not going to gel at all: You don't understand re-infection, resistant virus, any of that. So we will be friends, and I will educate you and help you get tested. But as far as intimacy, we're not even going there.

What is the best response you have ever gotten when telling someone?

There was a girl in a class at the Chicago Vocational Career Academy when I was doing a presentation, and she was just overjoyed at the fact that I had the courage to stand in front of this class and say that. And there was so much love and so much appreciation in her words, and she wished me so much strength and well-being that I was almost overtaken. I hardly ever break down in presentations, but I almost did because of her reaction.

What is the worst response?

The worst was from someone who said that I deserved what I got for engaging in intimate relations with other men. I was giving a presentation, so I couldn't give him the Keith Green that the 'hood might know. But there was this all-eyes-on-him kinda thing, and there were a couple of folks in that room who got him together for me. I didn't even have to do it.

Read more about Keith >>

Connect with Keith >>

Brian Datcher

Brian Datcher, Stratford, Conn., diagnosed in 1996

It's a tricky thing. When it comes to me professionally disclosing, I don't have any problem with that at all.

When it comes to being intimate with someone and intimate issues, that tends to be a little sticky. Sometimes there are people that you meet that you may have feelings for or emotions. They may not be HIV positive, but they're not asking the right questions, so I like to be honest with myself. I like to let people know what they're getting into.

I've seen HIV-positive people while I was doing outreach blatantly be with somebody and have unprotected sex with them. That really bothers me, and I don't want to fall into that category. I know it's easy to do when you're still in denial. I'm far beyond that. I believe in telling the truth. Honesty means a lot to me. Even if I may lose somebody I may want to have feelings for, if they can't deal with my status maybe it wasn't worth it at all. They couldn't deal with HIV and that shows me something about them. I would say, "Their loss and my gain."

How did you disclose to your most recent partner?

Well, I've known him for a long time, back and forth, back and forth. Matter of fact, he had heard from somebody and he called me and asked me. I said this is what is going on. He said, "I still I care about you and love you, and I'm here to support you."

I asked him, "Have you been tested?"

He said, "I haven't been tested."

That's his bridge to cross, but I always encourage him to make sure that he knows what's going on, and to get tested.

So he knew before you got together, and it wasn't a problem for him?

No, it wasn't a problem. It wasn't a problem.

That's great. What would you say are the best and worst responses you've ever gotten from telling someone?

The worst response was that somebody just dropped the phone and picked it up and hung up on me. [Laughs.] Or I'm talking to someone, and all of sudden they say, "Oh!" and they start backing up and backing up and then they say, "Oh, I'll be right back," and then they are gone. When they came back they had washed their hands. I just started laughing. I was like, "You can't catch it from shaking hands. You can't catch it from being in my presence."

They were like, "Oh, no, no, no!" and I could see them turning red. I was like, "Wow!"

The best response was from my mother. She said, "No matter what, you'll always be my son and I'll love you." Her being a nurse, she said, "I kind of figured that was what it was. I prayed that that wasn't what it was, but no matter what, I'll always love you; no matter what."

Read more about Brian >>

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Michelle Lopez

Michelle Lopez, Brooklyn, N.Y., diagnosed in May 1991

People have said that by telling them, I have given them a chance to save their lives.

I will continue to save lives.

Read more about Michelle >>

Connect with Michelle >>

Larry Bryant

Larry Bryant, Washington, D.C., diagnosed in 1986

It took me five years before I mentioned it to anyone, and the first person I mentioned it to was my mom.

My family has been supportive, my parents and brothers and sisters. They were the first people who were excited when I started doing this work, and they have followed me -- especially my dad, almost as closely with this as when I played football, and kept my articles and ... I've been very fortunate to have that support from my family.

With friends and, in particular, sexual relationships, it's been tough. I've always been a little shy and to myself, despite the fact that I played sports and everything. So finding out my status at that age, in college, already a little withdrawn -- it shut me down a lot. A lot of the normal social development that I would have had through my whole 20s never happened.

I find myself now where I still feel like a little 18-year-old kid, shy and reluctant to talk with people, uncomfortable with meeting new people -- and then to put the whole, you know, "Is this someone I disclose to, do I even want to bother?" thing on it! So over time I've gone through a lot of scenarios where it just scared the hell out of me, and sometimes I just feel safer not dealing with anyone.

I've been in situations where someone, to prove that they still accept you, want to have sex right away. Like "Let's have sex!" just to prove that they're OK with it. No! That's not necessary -- just be you! I'm gonna be me, and just let things happen naturally.

How do you decide whether to disclose your HIV status to someone?

Ideally, I want to be able to disclose, and to have the person on the other end accept me. But in reality -- and this might be my own rationalizing -- there's always something that we're not really comfortable about. It could be our eating habits or what our favorite TV show is or something that happened in our past that we feel less than comfortable revealing, so it's the same way on the surface.

It's interesting now that, because of my job, in a lot of cases people already know I'm HIV positive before I get there. It's completely different, though, when I meet somebody one-on-one and they have no idea who I am -- and it scares me to death. It just goes to a point of "Do I feel comfortable with this person?" Of course, there's a certain level of comfort and timing that has to happen where you just say, "OK, now! This is it!"

What is the best response you have ever gotten from telling someone?

The best response is when it's not a big deal. I don't want to say, "I'm HIV positive", and then all of a sudden it's like, "Ohhhhh!" and all this caring -- I just want it to be that I'm still Larry. I know there are probably things that go on in the other person's mind, questions that arise, but it's best when they treat me just the same.

What is the worst response?

There was a time when there was someone I really liked, more or less from a distance. But people, when they find out -- and sometimes it's a passive disclosure, where we might get in a roundabout conversation or they might see an article about me -- I purposely just wait to see what their reaction is gonna be. You have people who, literally, leave skid marks -- you never hear from them again. They don't want to have anything to do with you. I don't care how confident I am with myself; I never get used to that.

How do you deal when that happens?

I would be lying if I said I'm not disappointed or my feelings are not hurt at the very least, but you carry it and you move on and you wait for it to wear off. No matter how bad it feels, I know it will pass. I think that's one reason why I stay active and work and do so many things, because then things tend to rotate out of my head a lot faster.

Read more about Larry >>

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David Garner

David Garner, Houston, Texas, diagnosed in 1993

My rule once I became HIV positive was that I said, "Before we get naked, I'm going to tell you."

That was just my rule of thumb. I chose to bring it up in conversation some kind of way along the way. I kind of let them decide to do whatever they felt like they needed to do. I got turned down sometimes. A lot of times I got rejected. But at no time, thankfully, did I experience any violence.

What were the best and worst responses you have ever gotten when you disclosed?

The best response when I told someone I was HIV positive came from my daughter, who looked up at me with those little brown eyes she has and said, "Well Daddy, no matter what happens to you, I will always love you." After that, it's like, you know, who cares? Everybody else can take a number, because I'm all right now.

The worst response, probably, was from someone I thought was my friend. This was kind of early on when I was still in the Navy, and I ran across someone -- we were close while I was on the ship -- and I told him what was going on with me.

He kind of looked at me. He was younger than me. We never had a physical relationship, but we were close friends because we worked in close quarters, and we talked a lot. He looked at me and said, "How could you do that to yourself?" He proceeded to just berate me: "You should have known better. There is no reason why you should have it."

He was absolutely right. But of course, it doesn't help. It hurts more than it helps. Of course, in hindsight he was completely right. But he got so upset he just walked off, and I never heard from him again. I would hear about him through other friends, and I would send my regards on, but I never saw him after that.

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George Burgess

George Burgess, Atlanta, Ga., diagnosed in April 1995

I think my dad had the best response when I told him I was HIV positive:

"Son, I love you. We'll get through this." A soldier, true to his heart. You know, a soldier with compassion: "We'll get through this, son. What do we need to do?"

I have disclosed to people and have gotten the big hug and big kiss. If I were to say something, it's that when someone does make a disclosure, we can tell if it's a sincere, compassionate hug, or if it's ... Sometimes, the response, when you tell somebody and disclose to somebody: "I'm so sorry."

I don't want you to be sorry. It actually wasn't your fault, to be sorry. I don't know if people say that because of lack of words, and stuff like that. Just be supportive.

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Greg Braxton

Greg Braxton, Chicago, Ill., diagnosed in 1994

Since I've been diagnosed, I have become much closer with my mom.

When I was diagnosed, I didn't hold back. Within 10 minutes of me knowing, I told my mom, and my family.

What did they say initially? Were they cool about it?

They were cool in front of me, but I'm sure it hit them like a ton of bricks. They tried not to show fear in front of me, because they didn't want me to worry. They were kind of walking a tight line. But when I would get sick -- and I did get sick back then -- my mom would come out to see me, almost on a daily basis. I was so sick; I would go weeks without eating food. She was always there.

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