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WHEN FIRST DIAGNOSED: UNDERSTANDING AND COMMUNICATING ABOUT
HIV-TELLING PEOPLE ABOUT THE DIAGNOSIS: HOMOSEXUALITY
HIV
Anti-Infectives Probably the best 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, who is his caregiver, knew Steven was gay: “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, June and her son, like many others, discuss their differences, and if they do not understand each other, 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. Other times, the couple has an unspoken agreement to ignore the husband’s sexuality; it remains his own private business, and no one asks questions. Sometimes, even after a diagnosis of AIDS, 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.
*17/191/2*

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WHEN FIRST DIAGNOSED: UNDERSTANDING AND COMMUNICATING ABOUT
HIV-TELLING PEOPLE ABOUT THE DIAGNOSIS: WHO TO TELL AND WHY
First, decide who 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, and, only if you are filing claims for HIV-related conditions, your insurance company.
Next, decide who you would like to tell. Some people feel that they have a responsibility to tell those they love. They worry that not telling might be seen as lying. Steven Charles and Dean Lombard both feel close to their families and do not want to be seen as secret-keepers. 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 Pratt, whose husband was then in the final stages of AIDS. “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 also 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. They find that going public with their problems helps other, more isolated people. These people write articles about AIDS, 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.
To decide who you would like to tell, ask some of the following questions. Who do you feel ought to know? Who 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 is practical and sensible and reliable? Who can help you plan your affairs? Who can respond to requests for help? 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 babysits 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.” June told her sister about her son’s diagnosis: “She feels as badly as I do. We share the misery.” In general, Steven likes sharing his life with everyone he knows. Alan is more comfortable maintaining a sense of his own privacy.
HIV In general, like June, most people believe they can trust their own inner senses of who they can tell: “You play it by ear,” June says. “You know who’s right to discuss it with.”
If you would like to talk about your diagnosis and are uncomfortable telling the people you would usually talk to, you might try joining a support group for people with HIV infection.
Deciding who 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 about your sexual habits or drug use they might find difficult to accept.
*16/191/2*

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WHEN FIRST DIAGNOSED: UNDERSTANDING AND COMMUNICATING ABOUT
HIVDrug users face the same possibility of rejection that gays face. Helen Parks is a divorced,
thirty-five-year-old woman with two sons who live with their father. Helen, who now has ARC, became infected with HIV after using drugs intravenously. 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.
*18/191/2*

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WHEN FIRST DIAGNOSED: UNDERSTANDING AND COMMUNICATING ABOUT
HIV
Anti-InfectivesOne of the first practical, concrete problems most people face after their diagnosis is deciding who to tell. This decision is difficult. 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 Charles. “I learned early in life I put nothing over on them. Everybody around me knows. I tell lots of people.” Alan Madison, 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 Pratt 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.”
June Monroe is a fifty-five-year-old mother and housewife who lives in a close-knit neighborhood within a large city. “My son has AIDS,” she said. “I told my sister. The neighborhood we live in, the people are nice but I don’t think they could be helpful. I don’t think we’ll tell them.” Dean Lombard is a forty-year-old gay man who has AIDS. 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, and sister, my son, and my pastor,” Dean said. “I stopped there. It’s hard to explainЂ”I’m extremely close to other people and all my relatives. But I don’t want to tell them.”
In any case, the decision is complicated. With each person, you balance the reasons for telling against the reasons for keeping silent.
*15/191/2*

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WHEN FIRST DIAGNOSED: UNDERSTANDING AND COMMUNICATING ABOUT
HIV-REACTING TO THE DIAGNOSIS: THE TURNING POINT
One way or another, people’s strategies usually work, and their acute distress fades. They come to understand they can live with the virus. This understanding often comes as a sudden turning point. Alan Madison, after a few days of isolating himself, talked to his mother, who told him to get over it. “That didn’t help,” he said. “Then the next day in the shower I said to myself, ‘This stinks, but I’m stuck with this virus and would rather have my life happy than sad.’”
Steven Charles had a similar turning point: “After I was diagnosed with the virus, I read up on it, and decided my life expectancy was eight years. So I took my bank account and divided it into eight piles. Then I thought, what if I live nine years? That sort of settled me. I decided to let tomorrow take care of itself.”
Lisa Pratt’s turning point was more religious: “At first, I let the house go. I let junk pile up. After a while, the facts started sinking in. I said to God, ‘You’ve got your .work cut out for you. I’m going to turn a lot of this over to you until I can handle it.’ Then I went out and bought one hundred narcissus bulbs because I knew we’d need a reminder of the renewal of life. And it worked. My husband said, ‘They make me feel so good.’”
Occasionally, however, nothing works. Even after a few months, people remain extremely depressed: they are still preoccupied, or think seriously about not wanting to live, or persist in having problems eating and sleeping. This more serious type of depression happens to about 5 percent to 15 percent of people with HIV infection (the same percentages of people who become severely depressed after being told that they have cancer or some other serious illness). Some people deny they are infected and persist in behavior that puts the health of both other people and themselves at risk. Some people consider suicide, though less than one percent of those with HIV infection actually commit suicide. People who experience severe depression, denial, or thoughts of suicide need to get help from a psychiatrist, psychologist, or other mental health professional. Persistent depression may be best treated with medication, which a psychiatrist can prescribe.
Most people gradually understand and believe that they are not going to die tomorrow. They have time to get used to the infection, to find answers to their questions. They restabilize, and they continue living. “Life changes, then comes back to normal,” said Steven. “I’m no longer sitting around waiting to get sick.”
HIV Some people, at their own pace, begin thinking how they might change their lives. Alan’s hobby had always been writing, and now he thought he would like to write a really good book. Steven, who worked as a technician for a scientific laboratory, had always wanted to teach, and volunteered as a teacher in a community adult education course.
Some people begin tidying up relationships: Lisa’s husband called his brother more often, and they began going to ball games together. Steven eventually asked his cousin to come stay with him: “We’ll spend more time enjoying the things that give us pleasure.”
This is not to say that under normal circumstances, fear or depression or isolation go away and stay away. The feelings almost seem to cycle, to come back in waves over and over again. But with each cycle, the feelings become easier to deal with, and the strategies people use to deal with them become almost automatic. “I was fearful and depressed for a whole summer,” Alan said. “But now, when it starts washing over me again, I know what to do. I get busy, and then I’m not afraid.” Steven said, “At first, my diagnosis was the only thing on my mind. That was a year ago, and I still get pretty depressed, but now it’s not the only thing on my mind.”
*14/191/2*

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WHEN FIRST DIAGNOSED: UNDERSTANDING AND COMMUNICATING ABOUT
HIV-REACTING TO THE DIAGNOSIS: STRATEGIES FOR HANDLING THE FEELINGS
Different strategies for handling the feelings work for different people. In general, people try to fit the infection into their lives, to see what the infection does mean and what it does not mean.
Because people are so different, their strategies for coping are differentЂ”in fact, sometimes completely opposite. Any strategy that allows you to accept the diagnosis and stay emotionally intact is a good one. Use whatever strategies have worked on other problems. Use whatever strategies your needs and personality seem to dictate.
Some people talk about it: “When I got the diagnosis of AIDS,” said Steven, “I called my cousin and she flew in. Then I talked to my parents. My father was hysterical, my mother was in shock. For a while, we were all moderately hysterical together.” By sharing news of the diagnosis, people surround themselves with the warmth and comfort of those who care about them. In these surroundings, they find it easier to let the fact of the diagnosis sink in, and easier also then to put that fact into perspective. Other people want to handle it alone. Lisa used to sit for hours with her head between her knees, giving herself time, she said, to “just feel what I felt” before she had to put a public face on her feelings. The “roadblocks” Alan said he put up between himself and other people gave him time to deal with his own reactions to the diagnosis before taking on anyone else’s. If you want the sense of companionship that talking will bring you, talk. If you want time to sort out your feelings alone, don’t talk. If you want both, have both.
Some people read books on HIV infection and talk to doctors, to educate themselves about every aspect of the infection. This gives them a sense of knowing what they are up against, a sense of control over what affects them. Others accept information about the infection bit by bit, as they are ready for it. They want to keep their defenses intact and not feel overwhelmed by the diagnosis.
HIV Some people, like Steven, talk individually to people with HIV infection: “I talked to someone who had AIDS and asked him a lot of questions,” Steven said. “It was hard to do, but it seemed necessary.” Some look up those affected by HIV infection, not to talk about the infection, but simply to socialize: go to the theater, to sports events, out to eat. Many join support groups for people with HIV infection. In support groups, they lose their sense of isolation. They see others handling what seems overwhelming. They hear of new strategies for dealing with the diagnosis and decide what would work for them and what wouldn’t.
Many talk to mental health professionalsЂ”psychiatrists, psychologists, social workers, counselors, and therapists of all kindsЂ”who help people with HIV infection. Mental health professionals help people understand that their reactions are normal. The professionals often offer advice and alternate strategies, and they can be told anything.
Some people turn to their religions: Lisa Pratt said her husband became more spiritual, and that she herself was learning “to trust, not my feelings, but God’s promise that I’ll find peace in the midst of this.” Religion gives people a context in which the diagnosis seems less threatening.
*13/191/2*

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GETTING FIT: RIGHT AMOUNT OF EXERCISES
One way to help choose the right amount of exercise is to take your pulse at intervals. The heart rate increases during exercise. At rest it beats 50 to 100 times a minute (70 to 80 in most adults). Any exercise increases the rate, and really violent exercise can produce rates as high as 200 beats per minute or more in young people, less with advancing age. With increasing fitness, your resting heart rate will become slower (athletes often have very slow rates). More important, the rate will increase less, for a particular exercise level, as you become fit.
A reasonable aim is to exercise at about two thirds of maximum capacity. It follows that a young adult’s heart rate will be about 130 per minute during and just after exercise.
When you exercise keep your pulse below these limits (beats per min.)
The rates shown are quite modest, and as fitness develops you will need to exercise longer or harder to reach these figures. After you have been exercising three to five times weekly for two to three weeks, and provided that you do not become more than slightly breathless, you can choose a new set of target heart rates, as shown in the second column of the table.
The pulse rate is a useful guide if you have been without exercise and want to get fit. If you have been physically active throughout your life, there is little point in checking your pulse during exercise.
Counting the pulse. Counting the pulse is quite easy. Have a watch with a clear second hand on the back of your left wrist. Turn your right hand so that your palm is uppermost. With the middle three fingers of your left hand, feel for the pulse on your right wrist. You will feel its beat in the hollow of the wrist, below the ball of thumb muscles. Press just firmly enough to feel the beat easily. Now count the number of beats in 15 seconds, and calculate your rate by multiplying by 4; if you prefer, count for 6 seconds and add a naught to your count. For example 25 beats in 15 seconds, or 10 beats in 6 seconds, both mean a heart rate of 100 beats per minute.
Try to exercise not less than three to four times a week for twenty minutes each time (initially ten minutes if you are over fifty years). And try to become more vigorous in your everyday activities too. Do whatever activity you find most congenial. Aim at pleasant tiredness; never seek to become more than slightly breathless. As you come to find each activity easy, increase it by a small amount.
*7/202/5*