Every time a woman discloses her HIV status, she plays a big part in furthering the truth: that women also become HIV positive, and live, struggle and thrive with HIV. But disclosure is a big decision, not to be taken lightly.
Many women in TheBody.com's community have shared their disclosure stories, so that other women might find inspiration as they decide whether to disclose to people in their lives.
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.
Lynda Arnold, Los Angeles, Calif., diagnosed in 1993
For me the disclosure to my sexual partner was far from easy but it was necessary. I was only with one guy at the time. I remember calling him on the phone ... It was an extremely difficult phone call to make but somehow I got through it. He insisted on driving up to see me, he lived about two hours away ... To this day 19 years later he is still HIV negative and he remembers the day I delivered the news to him as one of the most emotional days in his life.
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.
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."
Cecilia Chung, San Francisco, Calif., diagnosed in 1993
I actually went with another friend to get tested and he was my support system at the time. ... But the first person I talked to after that was my mom. It was very difficult for me, for many reasons. One was because I'm Chinese. There are a lot of values that, as a Chinese son, I was taught: that, when I grew up, I was supposed to take care of my parents and make sure that they live comfortably. I'm supposed to make sure that I provide for them. The thought that I might die before they do was something that I was never prepared for.
Second: Catholic guilt. I was raised Catholic. And somehow that whole idea, or that internal chatter, all started to talk to me, and say, "This is what happens. This is God's way of punishing you. You transitioned [from male to female]. You're an abomination. This is God's way of telling you He doesn't approve." It was very hard to bear. So I decided to pick up the phone and call my mom. I told her that I might die before she does, and I told her that I tested HIV positive. Even though, at that time, we didn't really have a good relationship, I thought I owed her at least that. ...
I felt really alone for a long time, because my family and I didn't reconcile until later on in my journey. My mom and I truly reconciled in the middle of 1995.
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.
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.
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.