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Anger and Energy

An Excerpt From: The Guide to Living With HIV Infection


Lisa Pratt: My husband had a lot of anger, which he first directed at me. He criticized, lashed out, once threatened to kill me. At first he refused to use a condom. He said, "Why did some jerk donate blood and now I have to use a condom?" He'd beat his fist on the table.

Alan Madison: I am not particularly angry.

Lisa Pratt's husband received an infected blood transfusion in the late 1980s, and like a lot of people could easily admit and express anger. Other people feel anger but do not acknowledge it. Alan Madison was infected by a lover, is doing well on the drugs, and isn't angry at all. Whatever the case, anger is a perfectly reasonable response to HIV infection.

Reasons for Anger

One reason for anger is the unfairness of the situation. In the first place, being singled out by the virus at all is unfair. No one, regardless of how he or she became infected, asked for or deserved this infection. Steven Charles, who became infected through sexual intercourse, said: "Why me? I didn't do anything wrong, I never hurt anyone, I was doing what seemed right to me. I know people who are more promiscuous and they seem to be getting out without a scar." Helen Parks had found a good job in the post office of the small town in which she lives; she had stopped using drugs by injection before she found out she was infected: "I hadn't been getting high any more. I was earning good money," she said. "Why bother to work hard and do good now? I had a rage of fire that wouldn't go out."

In the second place, being sick when you are young is unfair. "I feel gypped," said Rebecca Wolfe, who had been infected by a former boyfriend. "I don't like to dwell on the unlikelihood. I don't like to think about that." Alan Madison became infected with HIV just as he was beginning to reach success and stability in the banking business, and now he wonders whether he should change his long-range goals.

And finally, the social stigma, rejection, and even abandonment this particular virus seems to provoke are unfair. People's anger is particularly intense when they feel they are badly treated by those they thought they could count on most, their ministers and doctors. When Lisa Pratt's priest could not respond to her request for help, she said she was hurt and angry. People are angry that hospital clinics make them wait for hours, that the clinic doctor they felt rapport with last time has been replaced by someone else and the clinic clerks are rude. Edward Carroll's doctor wouldn't believe Edward had pneumonia and couldn't breathe; he told Edward he was hysterical and sent him home. Edward had to go to the emergency room to get treated. "Because of this disease," Edward said, "I've met some great people and some people I wish I'd never met."

Besides unfairness, another reason for anger is frustration at occasionally losing the sense that you're in control of your life. People get angry about having to live with medications that are complicated to take and can have unpleasant side effects. Dean Lombard was taking a drug whose side effect was diarrhea: "Once I messed the bed like a baby. I got so frustrated and angry at not being able to do what I wanted to do, I cried."

And anger at the social service agencies is perennial and universal. People complain that government medical assistance requires that they first become impoverished before they can get help, that they must fill out an amount of paperwork equaled only by the IRS, that even then the outcome is uncertain, and that the clerks are unhelpful and rude. "The workers just mess things up," said Helen. "The people who take your applications are horrible and hateful. They act like they want to keep people from applying for help. It's demeaning and dehumanizing."

Expressing the Anger

Some people express anger directly and openly, usually in private, though Dean has cried in church. "Tremendous anger wells up in me," Dean says. "I cry during hymns, reading those words. At home alone, I lose my temper, bang doors, throw things, yell. It's important to me to release my anger, but I try to be careful not to hurt anything." Rebecca uses almost identical words: "I feel anger building up on a weekly basis. I want to run up and down the road and cry. When I'm really angry, I beat on the bed with a book, which is noisy and very satisfying. Or I go in the bedroom and jump up and down and yell."

Other people express anger more obliquely. "I'd cry every morning and night in the car on the way to and from work," said Helen. "Sometimes I'd have to pull over to the side. And I went through a period where I snapped at my customers in the post office. When they asked why, I'd say, 'Oh, the stupid Xerox machine won't work.'" In fact, people often express anger not at the true causes, at unfairness or at loss of control. Instead, like Helen and the Xerox machine, they get angriest at little things: "My husband expressed a lot of anger about things so small, they were all out of proportion to what he was angry about," said Lisa. "I'd fix him oatmeal, and it was not what he'd wanted, or it wasn't hot enough."

This infection has a lot to be angry about. Some people turn their anger toward the medical system. They say the drugs have unpleasant side effects; tests are painful and invasive, and so are the procedures. Hospitals do not allow a sense of control and privacy. Doctors seem impersonal and inattentive, nurses too slow. The rooms are too hot or too cold. Rebecca got furious at a friend who volunteered with her doing HIV/AIDS education and who got pregnant: "She was single," Rebecca said, "and got pregnant. You know she was having unsafe sex. It's like she thought what happened to me was for nothing."

Some people say they are not particularly angry, and they truly are not. Other people truly are angry but say they are not because they are uncomfortable expressing an emotion that is, after all, overwhelming. They worry that giving in to anger means losing face or losing selfcontrol. Their anger at unfairness and loss of control, however, often has not disappeared. Instead of getting angry at co-workers or the medical system, these people turn their anger on themselves. They feel depressed or guilty or they dislike themselves. Some eat too much: Lisa gained twenty pounds after her husband's diagnosis. Others rely too heavily on alcohol or drugs. Some continue the behavior that put them at risk for the infection in the first place: for a while, though she denied doing it, Helen went back to injecting drugs. In general, when people are depressed, they quit taking care of themselves.

Dealing With Anger

Anger is a justifiable response to this infection. People need to be allowed to be angry. Sometimes directing anger at the wrong target -- like Helen at the Xerox machine -- just helps you blow off. But sometimes it's ineffectual and at worst harmful. Obviously, it can deprive you of needed friendship and support. "Some people express their anger at everybody and everything else in their lives," said Edward, "and people stay away from them."

Anger turned on yourself is recognized as a form of depression. Those who feel hopeless or isolate themselves or eat or drink too much or continue the behavior that put them at risk for the infection are hurting themselves. Usually people realize they are treating themselves badly; before too long, they stop of their own accord. Sometimes a friend or relative notices that the person is drinking a lot or seems unhappy and recommends getting help. If you do not seem to be stopping on your own, get help from a psychiatrist, psychologist, or social worker. These mental health professionals will help you identify and understand the anger and will help the anger find its proper target. If necessary, they can also recommend alcohol- or drug-treatment programs.

Even anger turned outward can be overwhelming. Certain actions and attitudes help people deal with anger. First, separate the anger from its target. Lisa's husband, after talking to a psychiatrist, understood he was angry at the circumstances, not at Lisa for serving him oatmeal. Steven, who had been furious at the doctors he saw in the clinic, was able to say, "The doctors aren't the people I'm mad at. I can identify the feeling now and separate it out."

Second, find mechanisms that discharge anger. These will be different for different people. Helen screams; she also takes long walks through the fields around her small town. Steven jogs and works out in a gym. Edward writes out his anger in a journal, and talks to his partner, parents, and relatives.

Directing Anger

Much of people's anger about HIV infection is entirely appropriate. After you've figured out what you're truly angry at, after you've separated your anger from its target, you still have to figure out what to do with it. People find ways to direct their anger at its most appropriate targets, and in doing so, sometimes change their whole lives.

Lisa was angry at the social stigma her husband's illness had brought her. She began a newsletter for people in her city with HIV infection, so that others would feel less isolation than she had felt. Steven, who was angry at the medical profession, volunteered for a research study to test drugs. Alan Madison, upset about his career in the banking business, formed an organization that raised money to help local people with HIV infection pay for their rent, medicines, and food. Edward also helped found a money-raising organization for which he single-handedly puts out a newsletter on AIDS research, taught himself immunology, and took over editorship of a local newspaper for which he wrote a regular column on AIDS. "I want to leave behind anger and despair," he said, "and want to keep my desire to spread the word. You teach yourself things and -- oh, God -- I have so much to learn."

Lisa, Steven, Alan, and Edward are not exceptions. Anger holds an immense amount of energy. All over the country, people affected by HIV have used the energy from their anger to found buddy systems, political action groups, telephone hotlines, newsletters, fund-raising groups, and newspapers. They have successfully influenced medical guidelines and treatments, not to mention the workings of the Food and Drug Administration. Directing anger puts that frightening energy where it will do the most good; it returns to you a sense of control over your own life; it also returns a sense of hope. Sometimes it accomplishes near-miracles.

This book excerpt has been provided with the permission of The Johns Hopkins University Press.
Copyright © 2006 The Johns Hopkins University Press.

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This article was provided by Johns Hopkins University Press. It is a part of the publication The Guide to Living With HIV Infection.