Telling about the Diagnosis

One of the first practical, concrete problems most people face after their diagnosis is deciding whom to tell. Before telling anyone, however, peo­ple generally settle their own feelings.

Aside from this general rule, however, deciding whom to tell can be tricky. Different people decide differently, depending on the situation, their own personalities, and the personalities of those they might tell. “I told my parents,” said Steven. “I learned early in life I put nothing over on them. Everybody around me knows, I tell lots of people.” Alan, on the other hand, says he is careful whom he tells: “Only my partner. And my mother, my sister, and my young nephew. No one else.” Lisa said, “In the eight months since I’ve known about my husband, I’ve told only my daughters, my father, and my stepmother. I have brothers and sisters I have not told.” Lisa of course had to be tested for HIV; she is not in­fected. Later, Lisa became an activist and went public with her and her husband’s problems.

Dean Lombard is a 40-year-old gay man with HIV infection. Dean has a son by an earlier marriage and now owns a house with a long-term partner. “I told my partner, my parents, brother, sister, my son, and my pastor,” Dean said. “I stopped there. It’s hard to explain—I’m extremely close to other people and all my relatives. But I don’t want to tell them.”

In every case, the decision is a balancing act. Health is a private mat­ter and not generally anyone else’s business.

Whom to Tell and Why

First, decide whom you are obliged to tell. That category includes your doctor and dentist, your sexual partners, needle-sharing partners if you use drugs, the health care institution in which you work (depending on their rules), and, only if you are filing claims for HIV-related conditions, your insurance company.

Otherwise, the decision to “go public” is tough. HIV carries baggage that most illnesses don’t, and other people’s initial reactions aren’t nec­essarily comforting. Some people still have unrealistic fears of contagion, thinking HIV is transmitted as easily as the flu or colds. Some people seem to think HIV infection invariably makes people sickly and pathetic with a really weird disease. And HIV labels people as having a disease acquired by behaviors that society has historically not accepted—gay sex, injec­tion drugs, or numerous heterosexual lovers. Though much of the label­ing is a thing of the past, some of the old biases persist.

So think carefully about whom you would like to tell. Alan’s diag­nosis was years ago, but “telling is still case by case,” he says, “as you get to know people.” In general, most people believe they can trust their own inner sense of whom they can tell: “You play it by ear,” Alan says. “You know who’s right to discuss it with.” If you don’t know anyone “right to discuss it with,” you might try joining a support group for peo­ple with HIV infection.

Some people feel that they have a responsibility to tell those they love. They worry that not telling might be seen as lying. Steven and Dean both feel close to their families and do not want to be seen as secret­keepers. They both think their families would want to know something this important. “I couldn’t not tell my parents,” Dean said, “I owed them at least that.”

Many people want to tell those they trust because they need the sym­pathy and support of these people. “My relatives who knew said, ‘Don’t tell anyone else,’ ” said Lisa. “I said, ‘I’ve got to. I can’t live alone with this.’” People find it hard to be alone with physical illness or emotional distress. They find that talking to someone alleviates that loneliness. Talking to someone else also makes you present your problems in a log­ical and understandable way, so that talking eventually makes problems easier to analyze and to solve. And if the problems have no solutions, talking them over makes them easier to live with.

Some people even want to tell everyone—“I’m excruciatingly open,” says Steven. They find that going public with their problems helps other, more isolated people. These people write articles and have even begun newspapers and newsletters. Lisa eventually talked to a re­porter, she said, “because so many people were hurting. And the article did help people who are alone in this.” Once the newspaper article on Lisa was published, the rest of her relatives and friends found out about her husband’s diagnosis. Steven gives public talks: “Touching other peo­ple in large numbers in one sitting, is why I do it. I’m an expert because I live with it. I have nothing to be ashamed of—I guess it was a way of feeling good about myself.”

To decide whom you would like to tell, ask some of the following questions. Who do you feel ought to know? Whom do you love? Who will not run away? Who can see past the infection, and love and value you? Who can keep a confidence? Who can listen to what you have to say? You might also think about which you are more comfortable with: the sense that you have no secrets, or the sense that you take care of your own business.

Lisa initially told her daughters because she baby-sits regularly for one daughter’s children and the other daughter is a practical nurse whose help she might need. Steven told his parents partly so they could prepare them­selves in case he got sick, and partly because he couldn’t put anything over on them. He told his sister so she could help his parents. Alan told his part­ner, so his partner could get tested and so they could both take precau­tions. He also told his counselor and a friend, because “it helps when someone knows you other than as a patient.” Later, he told a co-worker, who also happened to be infected with HIV, because “he’s a positive, ‘up’ person to talk to. It does good to hear how someone else handles it, some­one who has a good outlook.” Edward Carroll is a 50-year-old gay man with AIDS. He is increasingly resistant to medication. At the time of his diagnosis, he was politically active in AIDS-related causes. “The people I told were already in this business,” he said, “so it wasn’t a matter of fear of rejection. I did not tell my parents. They’re old and they didn’t need that burden, and what could they do? I eventually told them. My father took it with as much aplomb as you can expect, and we had a heart-to-heart talk about how this was my battle, not his.”

Sometimes people guess the facts and ask. Perhaps they knew of a person’s homosexuality or drug use and had been worrying about the possibility of infection. Alan’s partner’s father asked Alan’s partner, “Alan’s been sick a lot. Does he have this AIDS?”

Deciding whom to tell has a complication: telling people about your diagnosis also means telling them how you got the virus. Sometimes that means telling them about a history of blood transfusions or hemophilia, or your spouse’s transfusions or hemophilia. Other times, it means telling them things they might find difficult to accept, about sexual habits—“I was worried people would think I’d slept around a lot,” said Rebecca Wolfe—or about drug use.

Homosexuality. Information about sexual habits is hard to talk about and hard to hear. Along with learning the diagnosis, some people hear for the first time that their son or brother or husband or lover is gay. As a result, relationships often become unhappy or difficult. One mother, named June Monroe, had found out by accident that her son was gay: “I felt like someone hit me with a claw hammer. It broke my heart. He said, ‘I want to explain.’ But I didn’t want to know. I was bitter. I cried for a month.”

One way to resolve the estrangement is to talk about it. One Sun­day, June began crying in church and had to leave: “My son followed me outside the church and said, ‘Don’t you still love me? Am I any dif­ferent?’ I told him I wasn’t raised to understand gays. I said I didn’t un­derstand it, and he said, ‘Mom, I didn’t choose my sexuality. And I don’t understand you and Dad either.’ What bothered me was that I’d miss his marriage and children, but that was just selfish. I had to take the parts of me that were my old beliefs and upbringing and set them aside. I had to come to terms with my son’s gayness.” Like many people, though, June continued to hope her son would change.

Steven’s cousin knew Steven was gay without his telling her: “She said she knew all along,” Steven said. “She’d change me if she could. But when I get tired of her arguing about it, I tell her.” Steven and his cousin, and June and her son, like many others, discuss their differences, and if they do not understand each other, they agree to let it be. No one in these relationships thinks their differences are as important as their bonds. “Loving is loving,” June said. “I’ve always loved my son. I would have a harder time not loving him than loving him.”

Discussion does not always lead to resolution, especially for gay or bisexual men and their wives. Sometimes a couple can discuss the hus­band’s sexuality openly. This sometimes results in divorce, sometimes in friendship, sometimes in an agreement that the man and woman will still help each other out.

to ignore the husband’s sexuality; it remains his own private business, and no one asks questions. Sometimes, even after a diagnosis of HIV infection, the husband denies that he is gay and the wife agrees to believe the denial.

All these alternatives work; each couple decides what works best for them. The only resolution that is unhealthy is one in which one person is infected with HIV and the couple does not practice safer sex.

Drug use. Drug users face the same possibility of rejection that gays face. Helen Parks is a divorced, 35-year-old woman with two sons who live with their father. Helen became infected with HIV after using drugs by injection. She said that once she told her father, from then on she had to face his suspicions. “My dad means no harm,” said Helen, “but he accuses me of being high when I’m not, like when I’m crying or being easy to get along with. He goes through my things. It plays on my nerves, but I don’t resent his suspicions. I’ve put him through a lot this year.”

Drug users are also likely to have to face charges, such as, “So that’s where you’ve been,” or “So that’s where my money went,” or “So that’s why you got fired.” But in fact, drug users do not usually have to tell their parents or their partners about drug use. Unless drug use is recre­ational, that is, unless it has not changed the person’s life and habits, par­ents and partners always know before they are told.

Reasons for Keeping Silent

Some people who have made their diagnosis public have compromised their jobs, their ability to get mortgages, and their ability to keep their insurance. All this is much less likely now than it was years ago, but these problems can still pop up unpredictably. For this reason, many advise people with HIV infection to tell as few others as possible: tell those they are obliged to tell, tell those they love and whose support they need, and then tell no others. You are certainly under no obligation to tell your neighbors, your employer, your landlord, or, unless you are filing HIV- related claims, your insurance agent. “I’m not sick, I’m healthy,” said Dean. “Nobody has any reason to suspect anything, and I just don’t need to talk about this stuff.”

The reason most people have for keeping silent is other people’s re­actions. “I don’t make a point of the truth about my son,” said June, “but I would answer if asked. So far, no one has. I’m not ashamed of the truth, but it bothers other people.” The particular truth of HIV infection does indeed bother people. When Dean first told his mother, she stayed out of church for a long time because she was afraid the other members would not talk to her. Alan worried that his mother would feel guilty, overreact, and make his life more difficult by “asking me questions and giving me orders.” Dean worried about how much pain he would cause his relatives.

Other people have related reasons for keeping silent. Helen Parks worried that people would find out without her telling them: she bought the drugs to control her infection in a nearby city so she wouldn’t be seen in her local pharmacy. Her sons, she thought, could not keep confi­dences. She was afraid that those she told would gossip, and she would lose control over who knew and who did not. She worried about hav­ing to tell her insurance company. June did not want to tell her mother­in-law, her son’s grandmother; the old woman was in failing health, and June did not want to add to her troubles. Dean worried at first that his co-workers would no longer want to work with him; years later, he still has not told them: “If they know, nobody’s saying so. As long as I’m do­ing my job, I don’t care and apparently they don’t either.”

How Others React

Often, these worries are without foundation, and people, when told, re­act much differently from how we expect them to react. Alan’s mother says she feels guilty for not having somehow protected him against the virus, but she is able to talk freely to him. Helen’s father, who had always been reserved with her, “dropped his mask,” she said, “and changed. He became warm and loving.” Steven says not to underesti­mate your family and friends.

Unfortunately, worries about others’ reactions are sometimes justi­fied. Just as sympathy and sensitivity are part of human nature, so are fear, discrimination, and avoidance of illness. Sometimes these unpleas­ant reactions come from those you most count on. “My best friend I lost,” Rebecca said, “because she didn’t know what to do or say and so just went into the periphery. When I needed her, she just couldn’t be there.” During office visits, said Alan, his family doctor “stayed across the room.” Dean said, “My dentist told me to go somewhere else. My pastor didn’t want me touching anything he had to touch.” Helen’s step­mother didn’t want to visit Helen: “She acted like my house had a plague in it,” Helen said, “like it had devils in it.”

In some people, these reactions are only temporary: Helen’s step­mother stopped worrying about visiting. Steven, who met a man he wanted to date, told about his HIV infection: “He was surprised, shocked,” Steven said. “I tried to listen to him, to not react. He was an­gry. He was afraid he’d get infected. While we were talking about it, he stayed with me, I stayed with him, we didn’t shut each other out, we didn’t run away from it. And it worked out beautifully.”

For other people, these reactions, in spite of being unpleasant, are probably not going to change. Inevitably, you will tell someone who can­not handle the news. This starts a series of reactions in you. You may feel rejected, angry, isolated. Sometimes these feelings are reinforced by other worries: that people are right to reject you, that you brought the virus on yourself, that you are to blame for your diagnosis. This series of reactions is understandable; people are especially vulnerable when the diagnosis is still new.

But these reactions confuse issues that are really separate and un­related. People who cannot handle your diagnosis are probably not re­jecting you personally. In any case, their actions toward you have no bearing on your worth or your good opinion of yourself. Instead, peo­ple who reject you are rejecting what they fear. HIV infection reminds them of fears they have—about contagion, illness, sexuality, social iso­lation—which they cannot face. Rejecting you because you remind them of their fears helps them keep their fears at a distance. They are not thinking about you at all; they are concerned only with their own prob­lems, they are only protecting themselves. “I’ll have to do something about telling more people sooner or later, but I’m not ready yet,” said Dean. “I don’t want to deal with their hysteria. When you first tell peo­ple, it’s when you most need them and it’s when they’re least likely to help. Though I suppose everybody’s trying to do their best.”

Perhaps, while you are still vulnerable to people’s reactions, it is best to keep silent. Wait until your feelings stabilize and you feel more sure of yourself. Then decide whom to tell. If you tell someone who disap­points you, the best policy might be to accept them as they are and, if necessary, avoid them.

Alternatives to Outright Telling

Some people ask someone they trust. Rebecca got sick before she went on the new medications and wanted a certain friend to know but didn’t have the energy to tell her: “I got another friend to tell her,” she said. “And this other friend came back and said, ‘You know, it’s really hard to say that to people.’”

Sometimes people choose to avoid the problem of whom to tell by finding ways around making the decision. Some people do not tell, but instead let their friends and families ask. These people leave clues: they talk about friends who have HIV infection, leave pamphlets and books on HIV infection where others can find them, say someone at work told them a story about a person with HIV infection, and talk about TV pro­grams on HIV infection and recommend their families watch them. The families and friends sense the truth. Then, if they can handle the infor­mation, they will ask; if they can’t, they won’t.

Some people do trial runs of telling, testing for rejection before telling. One woman was so afraid her children would reject her that she thought she could not tell them without breaking down. So she re­hearsed by telling a cousin whose rejection she feared less, and when she finally told her children, she could keep the composure she wanted. Some people, like those who let their friends and families ask, leave clues. Then they judge by reactions to the clues whether telling will be safe or will result in rejection.

Other people find alternatives to the outright facts. If they become sick, they say they have pneumonia or a lung disease, herpes, leukemia, ulcers, meningitis, or hepatitis, or a cancer, or an infection of the ner­vous system. They choose whatever disease is most appropriate to their symptoms. Helen said, “I read in a medical book about a blood disease that can be either acute or fatal. I’m alive, so I say it’s acute.”