How do you tell friends or family that you have been diagnosed with HIV? It's one of the greatest challenges you'll face -- and it's not something to rush into if you're not ready. Browse through these tips and you'll discover that sharing your diagnosis with others can have unexpected results.
Rafael Abadia, Palm Beach Gardens, Fla., diagnosed in 1993
I couldn't tell my parents over the phone. I knew I had to fly to Puerto Rico and let them know.
So I had to prepare myself mentally for that. So that's what I did.
I flew to Puerto Rico. I had lost a lot of weight, so I made sure to wear a lot of baggy clothes to try to cover my illness. I was really concerned about how they were going to take it. They're extremely religious, Christian fundamentalists, so I knew that was an issue. It was an issue of me being gay. I didn't know what to expect. I prepared myself mentally, just in case I was going get some rejection. Then the day came, and I sat in my parent's living room; my mom was in the kitchen. I looked at my dad, and I said "Dad, I need to speak to both of you. It's very serious." He called my mom, and my mom just kind of ignored him, she didn't want to come.
They knew something was gonna be up [laughs].
My dad raised his voice, and said to my mom to come, that I had to speak to them. OK, so the three of us were sitting in the living room, and I told them that I had AIDS. I told them I was taking some medications.
My dad is what I like to call a true macho Puerto Rican man, who I've never seen cry. He ran into his bedroom, crying -- like, really, really crying. And I ran after him. I grabbed him and he put his head on my shoulder and we both cried. To my amazement, they accepted me immediately. I thought they were going to put away the spoons, the cups, because I've heard horror stories from other people. But no, from day one, they accepted me, and they were there for me. So, I've been very blessed, with having a very supportive family.
What would you advise others to do, when they're disclosing their status to their family or loved ones?
It's really individualized, because I've met so many people in different types of situations. I've known of people with families that completely shunned them and do not speak to them anymore. So I'm very blessed to come from a very loving family. It's easy for me to tell everyone, because I was lucky to have that support.
What I recommend someone do is to really seek some professional help. See a therapist, a counselor, who could sit down and really guide you and prepare you for whatever happens. It's a very individual decision. You need to be ready to expose yourself to telling some people about your status because some people react differently. I've had many, I even lost friends, people who I thought were my friends, but once they knew of my diagnosis they completely stopped talking to me, even within the gay community, which was my biggest shock. But it happens.
Ahmad Salcido, San Francisco, Calif., diagnosed in September 2007
The first person I told I was positive was my best friend Ramsey, who lives in San Francisco and who is the one that extended his hand to me and said, "Look, I live in San Francisco. San Francisco has these great agencies, has this great program for gay and HIV-positive people, so you're more than welcome to come over."
It turned out well. He was the right person. You picked the right person.
Exactly! I've known my friend for five years and I told him, "You're like my little angel, you know?"
In Islam, we believe that if you're a true Muslim, God takes care of your problems before they come to you. It's funny because I've known him for five years, and it's like, "OK, when I met you, I met you for a reason. God knew what was going to happen, so he put you there as my little angel."
I think when you're positive you're like, "I need support. I feel lonely," because that happened to me. When I tested HIV positive I felt lonely and deserted. I felt really bad inside. There was this pain that wouldn't go away. It was this permanent pain in my heart that was making me so sad, making me so depressed. Within the same week of me being diagnosed, I was like, "I need to tell someone. I cannot handle this on my own."
If you have a true friend, I think your mind, your instinct, will tell you, "I strongly believe this is the right person that I can talk to." Once that instinct tells you this is the guy you should talk to, then you analyze them.
I remember I considered: "What are the negative and positive results of me disclosing to my friend Ramsey?" I thought about it, and there really would have been no negative outcome if I were to tell Ramsey, because throughout the five years that I've known him, he's been an excellent, excellent friend.
Automatically, when I thought about telling someone because I needed someone's support, he was the first person who popped into my head. I only had positive outcomes by telling him. When I analyzed the situation, I had more positive outcomes than negative outcomes. That's pretty much how I did it.
Bernadette Berzoza, Denver, Colo., diagnosed in September 1989
When I told a friend I was HIV positive, she got up off the chair and hugged me.
I think at that time, that's all I needed. I needed to see that -- even though I had this dreaded disease that everyone was saying was so terrible, and only bad people got -- I could still get some affection, care or concern from somebody else.
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.
Damaries Cruz, Deerfield Beach, Fla., diagnosed in November 1991
You've got to get to know the person at least a little bit and feel if it's worth it for you to tell them that you are HIV positive. But if you are going to be intimate, then you definitely have to tell them you're positive. It depends on you. If you like this person and you think they're educated enough, you should tell them.
People notice here that I'm positive because of the kind of work I do, because I've done campaigns. They even have an intervention tool and I'm a participant on it. It's really cool. But if you were in a regular place and it's not necessary for you to disclose, why would you disclose?
What's your experience been?
I worked in the corporate world before I was with the [Miami-Dade County] Health Department and it was nothing related to HIV. I never told them because it has nothing to do [with my job] -- if I'm a receptionist, why am I going to tell them that I'm HIV positive? It's not like they're going to get it from the phone. You've got to educate yourself and know what type of risk you're putting people in. If you think you're putting people at risk, you should disclose it if that's what you want to do.
Ed Viera, New York City, diagnosed in 1987
One of my female friends was just so accepting and supportive.
She hugged me and then we cried together and then at the end of all this drama she told me, "I've been HIV positive for ten years. I just never told you.
I just didn't know how to feel. I really didn't know. She said, "Finally I meet somebody who's as comfortable with it as I am!" I'm like, "If you were that comfortable with it, why didn't you tell me years ago about this whole thing?" Her answer was that she was afraid to scare me off.
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.
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."
Roger Solar, San Antonio, Texas, diagnosed in 1999
I think you have to be honest with yourself first. You have to look around as to who you're surrounding yourself with.
If you surround yourself with real friends, your family who really loves you -- or you hope loves you -- you can be yourself and be honest.
You are going to have to build that little wall up because you know you're going to have one or two people who come out and turn their back on you. That hurts more than them making fun of you; the fact that they drop you and don't talk to you hurts more than anything.
If you can be honest with yourself and you're comfortable, I think everybody should just be able to say, "Yes, I am positive," if asked the question. I wouldn't just go up to somebody and tell them, "Yes, I'm HIV positive."
You do it with care and with people you trust.
People you trust. Yes, you have to be careful who you tell. Even nowadays -- I don't care what anybody says -- you see MTV putting out ads and the Logo channel putting out ads about HIV/AIDS. They look normal and they're over here saying "Yes, I have it. Yes, I've had it for this many years and I'm a normal person and everything."
But in the real world, it doesn't work that way. If it didn't work that way in the medical field when I was working at the hospital -- where I had to be careful and not tell anybody -- how can the outside world that doesn't have any medical background be able to be compassionate or empathetic toward somebody who is sick?
Shelley Singer, Los Angeles, Calif., diagnosed in 1997
I called my parents in North Carolina. I didn't really know what to expect. I was in a panic.
I have always been independent. I have always been on my own, done whatever I needed to do. I'm not the kind of person that calls home every day. All of a sudden, I was faced with something, for the first time in my life, that I felt kind of afraid and unequipped. I was thrown into a tailspin. So I reverted back to, "Mom-my!"
My birthday is the 31st of August. This was late September. I had just turned 38. Up until this diagnosis, my biggest panic was, oh, I'm approaching 40. Now, all of a sudden, I'm like, well, wait a minute. Will I even reach 40? All of a sudden now it was a goal and not something to be feared. I was like, wait a minute. I want to reach 40 now. Now I need to!
I called my mom and dad and I just cried to them. I said, "I don't know what to do. I don't know if I'm dying. I don't know what to do." They reassured me. My mom asked me if I had told my sisters, who all live in different states and countries. I said no, that they were the first people I called.
My mom said, "Can I call them? First, because it will help you. You won't have to keep saying all of this over and over and over again. But also because it will help me, because I need to say it over and over again. I need to process this. I need to get it into my head."
Your mother sounds amazing. Is she a therapist?
No, no. Just a really cool lady. So she said, "Can I call your sisters? Can I tell them? I need to ..." I think she needed to do what I was doing. I needed to call my family. I needed to get that reassurance. She needed that. She suddenly felt alone where she was, and she needed that reassurance. So she was like, "Can I call your sisters? Can I tell them? I need that bond. I need my daughters. I need my family. This is too much for me alone."
I said, "Yeah. Would you do that?" So one by one, she called my three sisters. Then, one by one, they called me. Since now they had been told, I didn't have to go through all that beginning, that, "Um, um, I have something to tell you."
They called, saying, "Mom just called. What can I do? What's going on? How are you?" Then I could just jump right into the emotional support.
Did you find that you got a lot of emotional support from them?
I did, and I still do. I get a lot of emotional support from my family. It took me quite a few years to tell cousins. My grandparents, I never told. They died not knowing. I couldn't do that.
Why didn't you tell them?
I guess I didn't want to disappoint them. I didn't want them to change what they -- not what they thought of me ... but I didn't want them to be afraid. I didn't want them to be afraid that I was going to die. I didn't want to disappoint them and change how they felt, and the relationship we had. I just couldn't deal with that.
After you told your family and your sisters found out, did you tell friends?
Yes. I told my closest childhood friends. I called them up, because they are in New York and in Florida -- the places I've lived, and where I grew up (in New York). So I called my childhood friends and I told them one by one. They were all very supportive. Then my friends out here ... I did a rather crazy thing.
First, my most intimate, closest friends: I, one by one, invited them to dinner. I would have them over for dinner at my house and I would cook a nice dinner, and we would sit down and talk. Then I would say, "I have something to tell you." And I told them. "I know you know that I have been very, very ill. Well, this is why. This is what it is."
Ironically, a dear couple that I invited over one night to disclose my AIDS diagnosis looked at me -- and I had known them, now, for five years -- looked at me and said, "Well, Shelley, then I guess it's time we disclose."
I said, "What are you talking about?"
They said, "We both have AIDS, also."
I did not know that. So, here we were. We had known each other. We were very close friends. Saw each other every week for five years. By my telling them that I had AIDS, they admitted that they both did, too.
It was weird. It was very weird. Because, now, they knew it for years and years. I had only found out for maybe a couple months.
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."
Heidi Nass, Madison, Wis., diagnosed in 1996
I don't know what the best response is. I will tell you that a common experience I would have is people wouldn't mention it again.
They wouldn't freak out or run away or anything, or say anything really hard for me or inappropriate or offensive. They just would never bring it up again - like I had never said it.
I would even sometimes come back and say, "I'm sorry if I overwhelmed you. I know it can be a lot. It's a scary thing and I'm really sorry if it was too much."
"No, no, no, I'm very glad you told me."
That was often the reaction and then it would never come up again. It's just kind of a weird feeling. It didn't feel authentically like there's so much exposure to HIV that you realize, "Yeah, I'll add you to the list." It wasn't that, it was just more, "I don't know what to say. I can't approach this."
My husband -- the man who eventually became my husband -- he stood out to me because he started asking me all these thoughtful questions: "How much of your life do you think is HIV? If you were to make a pie chart of your life, how much is HIV? Do you think that it prevents you from trusting people? Do you think it affects your desire to be in a relationship?" Things like this, and I remembered thinking, "Who is this person?"
What was the worst reaction you got when you were disclosing?
I haven't had any terrible reactions. I was talking to a person recently who's a correctional officer. He was guarding a patient we had in the hospital. He and I were talking, and he started to say something that made my guard go up about, "Oh God, what's he going to say next about people with HIV?" I blurted out, which is not characteristic for me, "I have HIV, just so you know."
It was really my way of saying, "Before you say the next thing you're going to say, I want you to at least know that you're talking to someone who has this." I think there have been a few times like that, where I've end-run a potentially bad situation. I haven't had terrible situations.
For me this feels bad: I'm not saying it's terrible, but it doesn't feel good for me personally when I will tell someone -- which is, by the way, a very personal and difficult thing to say no matter how used to it you are in terms of saying it -- and that person will then very quickly say, "Oh, how'd you get it?"
Wow, that's their first question? Not "How are you?" or "How's your health?" or "How are you doing with it?" or "How long has it been?" but "How'd you get it?"
Very quickly you go from being this person who's just sharing. You've chosen this person to tell this to and what comes back to you is, "You're an object. I get to start finding out all these pieces of you."
Asking somebody, "How'd you get it?" -- especially in a casual way -- to me is hard, because no matter what the answer is, it's personal. Breast milk is personal. Needles are personal. Sex is personal. It's no small thing to tell someone how you got HIV.
It was hard for me for a long time to not assume I was being judged. Oh, you want to know if I do something you don't do. You want to make sure I'm doing something that you don't do. You want to put me in a box. You want to say, "Oh, she's promiscuous. She was a drug addict. I see, OK."
It took me a while to understand and it was actually only through the help of loving friends who would listen to me very patiently who would say to me, "You know, that's not always true. People don't always know anybody with HIV. For them, they're shocked. They're sad. In that moment, they may not be doing their best. All they can think of is, 'How did this happen to you, this person I know and like?' You have to give them some room there to have their reaction."
That was a good lesson for me, that I can't presume what's in people's hearts based on one question. All I do know is that it doesn't feel that great to me. My deal is, when someone asks me, "How'd you get it?" I say, "Why do you want to know?" I want them to claim it. Sometimes, people will say, "I'm just curious." Wow, OK, you're just curious. My answer is really, really intimate. For me, it's this intimate part of my life that wasn't without pain and difficulty.
That was a bit of an imbalance for me. I think it's incredibly important to share these things, because it helps us understand where risk is, and that it's often in places we don't expect it. Many of our stories are exactly that. I also think there is a necessity for a great deal of respect around the issue.
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.
James Nicacio, Selma, Calif., diagnosed in October 2001
I know my biggest fear was telling my mother. My mother and my sisters are the ones who have been so close to me.
They're my support system. They always want the best for me, so it was really difficult for me to tell them. But when I did, it felt like a big relief. I felt like, in some way, I was letting them down. Here I am trying to tell my mother -- the person who gave me life -- that, because of some of the bad choices and bad mistakes that I made in the past, my life might be taken. In a way, taking life for granted.
They were the only people that I really cared about telling. I didn't mind if anyone else knew, but I really cared that my family knew. But once I did tell them, and they said that they loved me no matter what, and that they were going to support me and give me every opportunity to take care of myself. Once I knew I had their support, then I could move forward.
Do you remember how you started that conversation with your sister and your mother?
I don't remember that conversation too well, but I think I do remember my sisters crying. I'm sure that they were very afraid for me. We didn't know anything about HIV, I guess you could say, other than what is said in the media: that once people get HIV, they get AIDS and they die. I remember them being really sad and really afraid, but the particular conversation I don't remember exactly what was said. I just know that at that time, they were my support system.
How are your relationships with your mother and your sisters now?
They're excellent. It's kind of weird to say, but since I've been diagnosed with HIV, my life has become so much better. It's better than it ever was before. Today, I'm able to live a clean, sober life. I have direction and I have the love and support of my family. They're very accepting and very encouraging. They give me every opportunity they can to do as much volunteering and outreach and education that I can. They're very supportive. My relationship is wonderful with them.
Gracia Violeta Ross Quiroga, La Paz, Bolivia, diagnosed in 2000
I talked to my sisters, especially the one who had the idea of doing the test.
I blamed her. I said, "This is your fault, because I'd rather not know." But actually, it was really good that she suggested it, because I also was to discover that I [tested] HIV positive maybe three or four years after being infected. This gave me the chance to change my habits and to start treatment early enough; I never got sick, like being in bed. I think I have been HIV positive for nine years now. I never got so ill as to be in the hospital.
Many of my friends in Bolivia discovered they were HIV positive only in the hospital, and only when they were about to die. So my relatively early diagnosis was, at the end, an advantage. But at that moment, I couldn't rationalize; I didn't yet have an understanding of that.
I was very angry, because the information we had been given was that people who had HIV could die in three months. That's really what I thought was going to happen to me. I was so depressed. Even though my older sisters tried to help me and explain it, for three months I was isolated and really ... I didn't know what was going to happen until I decided to talk to my family. I decided that their response was going to determine what I was going to do. If my family ever rejected me, I was going to kill myself. After they responded with a lot of love, I decided to live.
I told them after three months. My father is a pastor in an evangelical church in Bolivia. He's very well known. I knew this was not what the pastor expects to happen to his daughters. We are three sisters. I am sure no father expects this to happen with his children. So I knew this was going to be a very difficult situation for them to understand, but I had to tell them, because I thought I was going to die. I wanted to explain.
Then my parents told me that they didn't care about what happened in the past, and how I got HIV -- they didn't ask me any questions. My parents told me, "You are our daughter, and we love you and we will love you, three months, six years, ten days ... however long you will live, we will be with you." That really changed my mind. Since that moment I decided that it was worth living, even with HIV.
Did you expect them to say anything different?
I thought they were going to be a little disappointed. I thought they were going to exclude me from the house, because, being in the context of an evangelical community, this could be really shameful for a pastor. I thought they were going to at least ask me difficult questions: How did you get HIV? What did you ever do to get HIV? They were so wise; they didn't ask me these questions. At the end, I told them the story, but in that moment, they just showed me love. I was really expecting that they would reject me, or at least confront me with my mistakes. I felt that I may bring shame to the leadership of my father, because he was the pastor. He is currently still the pastor. That was a really difficult time for me, but they were full of love, and that really changed the response. There was no judgment from them, actually.
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.
Brian Datcher, New Haven, 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."
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.
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.
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.
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.