Reacting to the Diagnosis

Most people react to learning of their diagnosis of HIV infection with confusion, shock, and disbelief. Steven Charles is 25 years old and in­fected by HIV but asymptomatic. He is a gay man who lives alone in an apartment.

Lisa Pratt’s husband, Glen, a 60-year-old man who had received an infected blood transfusion, would not believe the test results. Like Steven Charles, Lisa’s husband reacted to the diagnosis of HIV infection with shock and disbelief: “He kept saying, ‘Those idiots don’t know what they’re doing.’ He made them test him again and again,” Lisa said later. Some people, because they are gay or use drugs by injection, have an­ticipated the diagnosis. Others have not. In either case, the diagnosis confronts people, usually for the first time, with all the possibilities of a serious disease.

Serious sickness has no normal place in our lives. We know it might happen, we know other people to whom it has happened, but we live in hope it won’t happen to us. No one is ever ready to hear this news, or to assimilate it all at once: “What do you do with that kind of informa­tion,” said Steven, “that you have this kind of disease?” People continue their lives almost unthinkingly: “For a few days after my diagnosis,” Steven said, “if it wasn’t automatic, it wasn’t getting done.” Others say they “freeze up” or “go on hold”: Lisa said that for a while, “Glen sim­ply quit getting out of bed, quit eating.”

Shock and disbelief are the normal reactions to this diagnosis. So are problems with eating and sleeping. Alan Madison is 35 years old, also infected with HIV, is gay, and lives in a condominium with a long-time partner.

With shock and trouble eating and sleeping comes an assortment of related reactions. People blame themselves and lose their good opinion of themselves. They are frightened because they don’t know what’s com­ing next. They are agitated and anxious and entirely preoccupied with the diagnosis. They are depressed, sad, unable to enjoy or take pleasure in things. They are afraid no one will like them any more, and at the same time they isolate themselves: “At first,” said Alan, “I unplugged the phone and said no visitors. I put up roadblocks on purpose.” People first hearing the diagnosis are also furious: “My husband stood in our living room, swearing,” said Lisa. “He yelled, ‘Damn it, damn it, how did I hit odds that small?’”

Though these feelings are terrible, and though they will recur, their acuteness is short-lived. They last from a few weeks to a few months— typically around six weeks. People deal with these feelings the way they have dealt with all other crises in their lives. They use the same skills, the same strategies they always have. “My husband cried when he told me about it,” said Lisa. “I told my husband, ‘Don’t be sorry. I love you. We’ll handle this the way we handle everything else.’”

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 different and, in fact, are 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,” said Steven, “I called my cousin and she flew in.

Other people want to handle it alone. Lisa used to sit 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. “I went that day to the bookstore, bought a couple of books, found out what I was up against,” said Alan. “Then I wrote to organizations. I became very well­read.” Being well informed gives people 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.

Some abolish bad feelings: “For a long while now,” said Steven, “I’ve squelched anxiety. I put it out of my mind. I can’t worry about craziness.” They find that feeling and acting normally helps them accept the diagnosis gradually and stay in control of their feelings. In fact— since human emotions are highly variable—some people seem to have no bad feelings at all. One gay man, in a sustained relationship with his partner who had had HIV for eight years and was currently untreated, became infected with HIV. The partner was so upset he required pro­fessional counseling, but the recently infected gay man was unfazed: “It’s treatable, right? That’s what my partner’s doctor tells him, and my part­ner still looks great.

Others express the bad feelings—to friends, in a private journal, or alone. They have crying spells. Rebecca Wolfe is 33 and found she had been infected with HIV years before through a former boyfriend; her husband is not infected. “I bawled every day,” said Rebecca. Expressing these feelings often seems to dilute them, and they hurt less. Many peo­ple alternate between expressing and avoiding their feelings.

Some people, like Steven, talk to other people with HIV infection: “I talked to someone who had HIV infection and asked him a lot of ques­tions,” Steven said. “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 (see section on support groups in chapter 11). In support groups and with friends also affected by HIV in­fection, they lose their sense of isolation. They no longer feel as alone. 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 professionals — psychiatrists, psycholo­gists, social workers, counselors, and therapists of all kinds — 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 can tolerate periods of severe stress much better if they briefly take a tranquilizer. Tranquilizers can be prescribed by any physician; this in­cludes psychiatrists but not psychologists.

Some people turn to their religions: Lisa 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.”

The Turning Point

One way or another, people’s strategies usually work, and their acute dis­tress fades.

Of course, not everyone has a turning point; for a lot of people, life just gradually becomes more reasonable. “My first thoughts after diag­nosis were, ‘I’m damaged goods, no one will want to touch me,’” said Rebecca. “What got me away from those feelings was nothing special, just time.”

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 some 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 1 percent of those with HIV infection actually commit suicide. People who experience se­vere depression, denial, or persistent thoughts of suicide need to get help from a psychiatrist, psychologist, or other mental health professional (see chapter 4).

Most people gradually understand and believe that they will get used to the infection and will 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.”

People also understand that living with the virus means taking pre­cautions against infecting other people, and guarding their own health. “I had the universal reactions,” said Alan, “but I grew out of it. Now I just try to take care of myself and act responsibly.”

This is not to say that under normal circumstances, anxiety 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. Steven said, “At first, my diagnosis was the only thing on my mind. After a year or so, I still got depressed, but it wasn’t the only thing on my mind.” Chapters 4 and 11 go into more detail about recurring feelings and about people’s strategies for dealing with them.