Telling Others You Are HIV Positive (Your Employer, Your Child's School)

This is an excerpt from There is Hope: Learning to Live with HIV, 2nd Edition, written by Janice Ferri, with Richard R. Roose and Jill Schwendeman, a publication of The HIV Coalition.

• How to Tell Others You Are HIV Positive
• Telling Your Employer You Are HIV Positive
• Telling Your Child's School That Your Child is HIV Positive
• Personal Perspectives

How to Tell Others You Are HIV Positive

There's really no easy way to tell someone close to you that you have a life-threatening illness. Test Positive Aware Network suggests the following approach for breaking the news to the "significant others" in your life (especially your parents):

1) Assess the reasons you want to tell your friends or family. What do you expect from them? What do you hope their reaction will be? What do you expect it to be? What's the worst possible reaction they could have?

2) Prepare yourself. Gather clear, simple, educational brochures, hotline numbers, pamphlets and articles on the disease. Take these with you to leave after your discussion.

3) Set the stage. Call or write and explain clearly that you have to meet with them to discuss something extremely important. This is a once-in-a-lifetime experience for all of you--don't treat it in an offhand or rushed manner.

4) Enlist help. Ask a close friend or family member who knows the situation to come along or write a letter to your folks asking them to try to understand and reminding them that their acceptance and support are vital. Ask your physician or therapist to write a letter to your folks as well. This can be most effective--many parents will believe or listen to a stranger before listening to their own child.

5) Be optimistic. Accept the possibility that your parents are caring and rational adults. Likewise, you need to be as caring and rational; having a chip on your shoulder or selling your parents short is not going to help win the support you need.

6) Let the emotion come through. You are not asking to borrow the family car. The prospects to be considered are as frightening for them as they are for you. Now is not the time to assume false fronts or joke away the more serious implications.

7) Let them know you are in good hands. Explain how you are taking care of yourself, that your physician knows what to do, that a support network exists for you. The single thing you are asking of them is love.

8) Let them accept or deny it in their own fashion. Do not try to change their position right there. Leave them the material and put an end to the discussion if things go very badly. Try not to revisit past discussions about lifestyle.

9) Give them some time to digest the information and adjust to the news. After a reasonable period of time, call them back to assess their reaction.

10) ACCEPT their reaction and move on from there.

Attempt to keep the lines of communication open. Approach the process of telling with the best expectations. Still, with all the preparation possible, there may be surprises. Be willing to pull out, pull back and give them some room. If you're prepared for the worst, the best will be a blessing. adapted from Positively Aware (formerly TPA News), July, 1990. Based on an article by Chris Clason. reprinted with permission.

Telling Your Employer You Are HIV Positive

Deciding if and when to tell your employer about your HIV status is an extremely important decision. Timing is everything. If you haven't had any HIV-related symptoms or illnesses and are not on medication that is affecting your job performance, there's probably no need to open up that particular can of worms.

If, on the other hand, your illness is interfering with your work such that your job might be in jeopardy, it's time to sit down privately with your boss and reveal your situation. Bring a letter from your doctor explaining the current state of your condition and how it might affect your ability to perform your job. (Keep a copy for yourself.) Let your boss know you want to continue to do your job to the best of your ability, but that because of the effects of your illness or medication, there are times when your schedule or workload may have to be adjusted. Because the law regards a person with HIV or AIDS as a disabled person, your employer is required to reasonably accommodate your needs if you are otherwise qualified to perform the essential duties of the job.

Ask your boss to keep your condition confidential, only notifying those people in the company who absolutely have to know. Illinois law requires this of anyone you tell, but many people (employers included) are not aware of their legal obligation. For your own protection, you may want to decide on a non-combative way to make the people you tell aware of this. Again, it's always a good idea to have a few pamphlets or hotline numbers available to help your employer understand your illness and locate resources.

Once you present the facts of your condition to your employer in this manner, you may be protected from job discrimination under the Americans with Disabilities Act (ADA), the Illinois Human Rights Act, and local ordinances. As long as you are able to do the essential functions of your job, your employer cannot legally fire you, demote you, refuse to promote you, or force you to work separately from others on account of your condition. Depending on the state in which you live, your employer may not be able to limit your medical benefits or life insurance coverage. (Remember, it's important to carefully document any communication with your employer or questionable incidents on the job for future reference.)

If you're applying for a job, be aware that under the ADA, prospective employers do not have the right to make inquiries about your health or the existence of a disability prior to a conditional job offer. However, they may inquire if you are aware of any physical limitation that would interfere with your ability to perform the essential job functions.

If you are asked on an employment application or in an interview whether you have HIV, any symptoms of AIDS, or even whether you are associated with anyone else who does, it's best to tell the truth or decline to answer. Although the employer has violated the ADA, you do not want to raise the matter at this time. An employer may not legally refuse to hire you based on your perceived or actual HIV status. If you do not get the job, you may have an easier time proving discrimination if the employer had knowledge of your status. You would also be better protected from on-the-job discrimination if hired.

Employers can request a medical examination only after a conditional offer of employment has been made, and when two other conditions apply: the request can be shown to be job-related, and the same examination is required of all other entering employees of the same classification. All medical information obtained by the employer must be kept confidential.

Keep in mind that you cannot be forced to take an HIV test as a condition for getting or keeping a job. However, many HIV-positive people are also active users of illegal drugs. While the ADA protects you from discrimination based on your HIV status, it does not protect you from discrimination based on drug use. Pre-employment screening for illegal drugs is permitted, and an employer or prospective employer may terminate or refuse to hire you based on drug test results.

After July 26, 1994, all employers with 15 or more employees are subject to the provisions of the ADA. If you feel you have been discriminated against in any employment situation, consult an attorney to determine whether the ADA or any of several anti-discrimination laws apply to your situation.

Telling Your Child's School That Your Child is HIV Positive

You have probably heard horror stories about children who were kicked out of school, taunted or worse when their HIV status became known. Telling others about your child's HIV infection is nothing to rush into. However, it may be in your child's best interest to work with certain professionals from his or her school.

You'll want to schedule a meeting with the school's principal to ensure that the school has a good HIV policy in place, identify those who should be informed, and establish a working relationship between yourself and the school. Then, set up a second meeting with the principal, school nurse, and your child's classroom teacher.

Remind those you meet with that your child's HIV infection is confidential information by law and that improper disclosure could be answered with a lawsuit, which no one wants to see. Ask for an explanation of the school's policy on HIV and obtain a written copy. Find out what education has taken place or is planned to reduce the chances of negative responses in case word gets out there's an HIV-positive student in the school. Ask what steps will be taken to assure your child's confidentiality.

The school nurse should discreetly follow your child's progress, monitor side effects of medications needed during school days, and inform you when there is an outbreak of infectious disease. An informed teacher can reinforce developmental goals established for your child, keep an eye out for medication-related side effects, and observe and report possible physical or emotional problems.

Both you and the school need to be prepared for the possibility that others will learn about your child's HIV. In-service training for school staff and parents, along with age-appropriate education for students will help create a supportive environment. In the Chicago Public School system, the only criteria for exclusion from school are large open sores that can't be covered or aggressive behaviors that have the potential to spread HIV, such as biting. (However, to date, not a single person has been reported to have gotten HIV as a result of biting or having been bitten.) Your child also may be advised to remain out of school temporarily for his or her own protection if there are outbreaks of measles, chicken pox, mumps, or other dangerous infectious diseases. Children excluded from school or unable to attend because of health conditions are entitled to have a teacher assigned in the home.

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 a while. 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 a while, 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

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"