Telling Others You Are HIV Positive

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Some Personal Perspectives on Telling Others You Are HIV Positive

It may also be helpful to know how HIV professionals and men and women who are living with the HIV/AIDS disease have dealt with telling others. Here are some of their perspectives.

As far as telling people goes, that's an individual decision. I personally think your doctor needs to know. If she or he can't handle the diagnosis, then go to a doctor who can.

You should only tell people whom you really know, who'll be on your side and be supportive, not judgmental. But realize there's only so much they can handle. They may be wonderful and loving and caring and open--but they're still going to be flipped out. This isn't movieland, it's the real thing. So you have to respect their need to be flipped out for awhile. If you know the news is going to give someone a heart attack, don't tell them.

In terms of how to tell, just be direct. People know when you have something bad to tell them. The minute you say, "Let's talk"--they'll hear it in your voice. It can be a double coming out for a lot of people. I also think it's important to let the person you're telling know how you're handling it. That will give them some clue of how to deal with it.

There's no easy way to tell someone, and there's no such thing as breaking the news gently--because once the point comes across, it hits them like a hammer anyway. If you have to tell someone, just tell them you're HIV-positive, then ask if they have any questions. Then you can just answer yes or no, open up a discussion. That can make it a little easier on you because you don't have to reveal everything all at once. You can just answer questions a little bit at a time.

In the hospital, you can call in a professional, like the immunologist, to talk with the family and give them the straight story. Reassure them that even though you're sick, you are getting good care and will follow doctor's orders. A lot of people tell their families they have cancer, but the families always figure it out after awhile. Lying about this won't help anyone learn to face it any faster.
-- Dr. Harvey Wolf, Clinical Health Psychologist

If someone brings up telling their parents, I always say you'd better plan on supporting them first. They know less about this than you do. It violates the law of nature--kids don't die before their parents. That's what they'll be thinking, and you've just turned their world upside-down. You'd better be able to help them deal with it before you can expect to get any support back.

You'd also better be prepared to answer a lot of questions. I suddenly was faced with the fact that I was going to have to tell my family about my gayness. Now, it's out of your hands--you're "outed." The only control you've got left is when to tell, and how.

People at work have noticed the weight loss and they ask what's going on. I work among a relatively sophisticated, progressive group of people. I'm not afraid for the most part that they would go, "Eww! I can't work with this guy." But there are some people in the company who could react that way. I guess what I'm more concerned about is people treating me weird or talking about me, because as soon as people find out you're positive, they start to speculate: "Is he a junkie or is he gay? He certainly ain't Haitian! Transfusion? Hemophiliac?" I don't want all that hassle and mess. Most people won't pry, but some don't know when to stop.

If someone is being really nosy or prying, the temptation is to just lie and say no. But in most cases, my strategy has been to sidestep. I learned early on, the instant you start lying about things, it gets really complicated and awful. Now you've got to remember your lies, and back them up and embellish them. It's easier just to say, "It's none of your business."

With certain people you can be a little more subtle, because they have a better understanding of things like privacy. If someone were to ask me point blank, "What's the matter, Charlie--do you have AIDS?" I guess at this stage I'd have to say yes. Four years ago, I probably would've said, "What a question!" trying to deflect and make them feel ashamed for asking. Now, depending on who it is, if it's somebody I work with closely, I might say, "Well, sometime we'll talk about that, but it's really not appropriate right now." That's basically a "yes," but it's a "yes" that discourages further discussion then and there. Let them seek me out privately later.
-- Charlie

After my "stoic" period, there was a period of feeling very isolated. It made me want to be around my friends and talk about this a whole lot. At times, I wanted to tell everyone I was HIV-positive--just go to the top of the building and scream it.

Finding out any news like this that is health-related and mortality-related accentuates a lot of what you don't like or what irritates you about your partner. It also accentuates and brings to light a lot of what you don't like about yourself. All the old behaviors, fears, anxieties--attitudes you've been able to keep under control or channel in a slightly different way--that all comes gushing out and there's a lot of garbage that gets dumped on the dinner table. Sometimes, you almost feel like you're starting from scratch. Issues in the relationship you thought were resolved are triggered all over again in a slightly different configuration.
-- "Ralph"

I feel obligated to tell anyone who's interested in me that I'm HIV- positive before they get too interested. If they're going to get real interested in me, it's almost like betting on a three-legged horse. They're not gonna win in the way they might like. They can't have children with me; I'm not going to keep them company in their "golden years." I'm gonna be checkin' out long before then. I just feel like I have to let them know what they're getting into.
-- "Marie"

There are certain people in my life who I'm terrified to tell. I've had some real bad experiences. People who found out I had AIDS wouldn't let their kids play with mine or even come in the house. People have a very poor understanding of how the virus is spread. I figure, the fewer people I have to tell, the less I have to deal with.

Before I decide whether to tell somebody, I try to figure out why am I telling them. What is my reason. Once in awhile, it's to get someone to feel sorry for me. Mostly it's to share it with them, or because they're close to me and kind of have a right to know.

People do treat me different once they know. Sometimes they're nicer to me. Not always. It kind of goes from one extreme to the other. Some people will totally stay away from you. They're out of your life for good. Others will try to be very supportive. There aren't too many people in the middle--it's one or the other. I haven't really had anyone come out and try to hurt me or be mean because I have it.

I know it's impossible, but I wish people could kind of disconnect me from my illness. Look at me, and if they want to judge me, fine--but don't keep bringing AIDS into it. Since most people can't separate the two, I really don't volunteer it much. I don't feel it's necessary for everyone to know about my illness.
-- George

You may think that telling would be too stressful, but in truth, the fear of people finding out will haunt you and the secrecy will cause you stress--stress that right now you don't need in your life. For me, to tell was to be set free.

Telling your children, though, that's hard. When I first came out with this, people asked what my sons knew and how they were dealing with it. I told them my sons knew nothing because this is what I thought, or at least what I wanted to believe.

Then one day, my little boy Shane looked up at me, pressed the ambulance button on his play telephone and said, "This is 911. I'll call 911 when you die." My heart broke a thousand times as I realized that he understood my illness all too well.

But now I knew that I could not protect my son from the fearful reality of possibly losing his mother. I was determined to keep Shane, and Tyler, when he gets older, from ever having to deal with the thought that AIDS is something bad people get and something you can't talk about. Shane now goes with me sometimes when I speak to groups about AIDS, and tells everyone there that AIDS is everyone's problem and no one's fault. And in his own way he knows that he is helping, and my heart smiles with love that tells me everything will be okay.
-- Shari

For those who are incarcerated, I would say tell your doctor so that in jail you can receive medical care and have your condition monitored. If you became infected because you've been abused, don't tell anybody other than the doctor. I would tell the doctor an abuse situation happened and identify the abuser. I wouldn't give permission to reveal my name, out of fear that in retaliation I'd lose my life. If telling would mean your life, don't tell. HIV can spread like wildfire in jails. We need to have access to condoms in jails, because there is sex happening. We need bleach, too, because there also are drugs in jail.
-- Annie Martin, Clinical Nurse Specialist, Cook County Women and Children's HIV Program

I was at a TPA meeting a few years back about who, when, and how to tell. The speaker and some other people were advocating that you should tell your parents, and some parents were there advocating that they had a right to know. As far as I'm concerned, nobody has a right to know anything about me that I don't want to tell them. I couldn't understand why everybody was so tied up in saying they had to tell their parents they were gay, or HIV-positive, or anything else. That is up to you. You don't have to tell anybody anything!
-- Steven

At first I thought a lot about, "What are my friends going to say? What is my family going to say?" Now, I just don't care. I know my family and they are with me. If others are my friends, they will stay. If not, they will go.
-- Gail

I still have a lot of fears and resentment about how people would feel about me, how they'd look at me if they knew. I work, and every day I go to work I am fearful: "What if somebody says or finds out something, and they all shun me?" When my daughter found out quite by accident that my partner was positive, she told her boyfriend. He said to her, "Don't you ever take the kids over to your mother's again!" That was even before they knew about me. So the rejection is the biggest fear. But truthfully, most of the close friends I've told have accepted me.
-- "Elizabeth"

In deciding who to tell, consider whether the person is able to keep your confidentiality, is mature, cares about you, is knowledgeable, honest, and open. Helping people learn more is important to me. I feel I was meant to have this disease, to educate people. My husband and I are interracial, and I think we were meant to be that way, too. God has given me this to tackle. We're all here for a purpose, to help each other.
-- Evie

I haven't told the neighbors in my apartment complex yet, because you never know how they'd take it, or how management would take it. It could be like their swimming pool, a big sign: "THIS DAY FOR ADAM ONLY." You never know, so you don't especially want to tell them.

If a stranger came up to me and asked if I had AIDS, I'd say it's none of their business. I'm not going to run around town waving a sign, "I've got AIDS!" It's a private, medical thing. You don't tell just anyone, but you tell the people you're close to.

Telling potential girlfriends is a big ordeal. The third date is about the right time to do it. You start out with the term "hemophilia," then work your way from that to "HIV." You have to start there because the word "AIDS" will send people diving out of third-story windows. You explain that it's a virus that may or may not kill you. You have to say "may or may not," because if you say it's definitely going to kill you, she won't stick around.

It's like the Paris Peace Talks; it's horrible. I dread that whole conversation. How do you say it in a nice way--in a way that will make her not run away? It makes dating a nightmare, because who wants to date if it's never going to lead anywhere? It's a shitty set of circumstances.
-- Adam

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Some people have this image that the people they tell will get really hysterical and freak out and stuff, but what is more common is denial. All of a sudden, nobody talks about it. You can't get them to ask how you are. I go two months with no problems and my lover will go, "Are you sure you're sick? Do you think about it often?" And I'll say, "Every five hours, when I take a pill."
-- Jim

I wish I'd had something to help me decide whether to start telling people right away. That was my biggest thing. Right away you feel alone, scared, and then you wonder, "Should I tell my mother and father, should I tell my friends--and what friends shouldn't I tell?" You're afraid to tell your neighbors because they might burn your house down or something. I was very worried about my kids and how they might be teased at school, so I didn't tell them. I didn't tell my neighbors, either, but I figured maybe I should tell my immediate family.

I asked my doctor what she thought I should do. Should I just lie and say I have lung cancer, or should I come right out and tell everybody it's AIDS? She said I had to be the one to make that decision.

I still to this day don't think it's a great idea to run out and tell everyone. You want to share it with people, but then later, some of the aftereffects may not be worth it. I had an incident where my sister told a friend of hers who lives in Wisconsin, and the friend has a brother who lives in Las Vegas, and within a day or so they both knew. The brother just happened to be in town at a garage sale and he blurts out real loud to someone who knew me, "What's this I hear about Sam having AIDS?" It was supposed to be confidential. I had asked my sister to keep it within the family. Taught me a good lesson, I guess.
-- "Sam"

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Last reviewed: 10/05

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