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Depression and Hope

An Excerpt From: The Guide to Living With HIV Infection


Helen Parks: Sometimes I'm in my room, in my chair, and I think about the people in all the stages of this disease and the people who have left the world with this disease. And I wonder what I'm going to do if I get sicker. I get confused. I get drastic thoughts. I sit in my chair and cry. I get real depressed.

Steven Charles: It feels like I'm caught in a muddy ditch and the walls are mud, there's nothing to grab on to and I can't climb out.

What Depression Feels Like

Depression is one of the most painful feelings a person can have. People say they feel alone and helpless in an indifferent world. They say they lose interest in things, have no energy, feel generally tired. They feel empty and uninterested in things they are normally interested in. They feel lonely and alienated from their friends, relatives, neighbors, coworkers. They doubt themselves or blame themselves or feel they have failed. They quit taking care of themselves. Like Helen, they have "drastic thoughts": they think about dying, sometimes about killing themselves. "When I'm home and completely alone and start dwelling, that's when I'm in trouble," said Edward. "It paralyzes me, I can't do anything. I just lie in bed."

Sometimes depression affects not only the mind, but also the body. Some people report that they cannot think as clearly or quickly as they used to. Some stop eating; others eat too much. Some cannot sleep, especially in the early morning; others sleep too often. In general, people dealing with depression say they are mostly sad and lonely, and they often cry a lot: "For a while, I cried all the time," said Rebecca Wolfe. "I didn't want to cry in front of my husband. I cried when I was alone -- in the car, in the shower."

At bottom, depression seems to be the absence of hope. Hope is the sense that life is good, that it holds comforts and delights, that what you do makes a difference, that one way or another things will be all right. Sometimes, for a while, this sense of hope fails you. Faced with hopelessness, people feel helpless. They feel they have no alternative but to continue feeling depressed. They feel they no longer have the power to change how they act or how they feel. They feel that nothing they do matters or ever will matter. Some people, especially early in the course of the infection, consider suicide.

Depression varies in intensity and duration. Sometimes it is a mild feeling of being "down," or devoid of pleasure, or demoralized. Sometimes it is severe, and feels like despair, deep apathy, or true hopelessness. For most people, depression comes and goes: "I get bouts of these depressions," says Steven. The bouts can last a few hours, a few weeks, a few months. Edward, even though he says he has had trouble with depression for much of his life, also says, "I spend a few hours or maybe a day depressed, but that's all."

Causes of Depression

One cause of depression is a sense of being stuck in a frustrating, disheartening situation. Such situations are everywhere in life. Most people at one time or another must face something that they cannot fix, to which they can only adjust. HIV infection is certainly reason for depression: Edward said, "It's in my dreams. It can just percolate -- you have this hopelessness. This is not the best thing that ever happened to me." For people facing HIV infection, depression, like anger, is a reasonable response.

Other causes of depression are the inevitable accompaniments of any disease. People get depressed when they go to the clinic for treatment and see other people with HIV infection worse off than they are. "We withdraw when we're sick," said Edward. "We're ashamed when we're sick. And the stigma of HIV isn't gone. It's difficult to stay strong. For a while, friends would call and say 'Let's do something,' and I'd say, 'Why?' If I'd gone to see a therapist, I'd have been diagnosed clinically depressed."

Still other causes of depression are all of life's ordinarily depressing vicissitudes. Steven had a job out of state when, by coincidence and on the same day, two close friends died, one by accident, the other by suicide. "Talk about grief and despair," he said. "I couldn't work, and worked anyway and made mistakes. I was goo, I was slime on the ground. Finally I packed up my dog and drove home and we've been here since. I didn't understand how two people who were young and who I loved could die on the same day. I just worked and took care of the dog, that was my whole life."

Another cause of depression is predisposition: people who have been depressed before their diagnosis might be more likely to be depressed afterward. Another cause is medications: many of the medications used to treat HIV infection and its complications can have depression as a side effect. For example, a small risk of depression is attributed to the longterm use of efavirenz; talk it over with your doctor. Alcohol, which is a depressant, is a particularly treacherous cause of depression because it can start a cycle. To feel better about their depression, people drink, which makes them feel depressed and out of control. So to feel better, they drink some more, get more depressed, and so on and on.

Occasionally, depression may be caused by the virus itself. That is, depression can be a symptom of dementia, a condition that results when the virus enters the brain (see chapter 6).

Finally, depression can be caused by unexpressed anger. Anger is hard to express, especially if it is directed at something as vague as fate, or something as personal as your own body or your behavior. People who do not express such anger either consciously restrain it or unconsciously ignore it. In either case, they unknowingly turn their anger inward on themselves and become depressed.

What to Do About Mild Depression

Depression that is unexpressed anger will disappear if the anger is recognized and dealt with. Depression that is a reasonable response to HIV infection almost always runs its course within days or weeks, and then goes away. For some people, this happens without their intervention. Others need to be more active in dispelling depression. One way to lessen or end depression is with physical activity: get outside, go for walks, cook a wonderful meal, go boating or driving or fishing or bowling, go shopping and buy yourself a little treat. "When I get depressed," said Steven, "I eat Ben and Jerry's coffee Heath Bar crunch ice cream."

Try to accomplish something you want done. A sense of accomplishment can come from doing something small, like cleaning out a closet, writing a letter, or polishing your shoes. No matter how small, a sense of accomplishment is a great weapon against depression. One small accomplishment can give you the hopefulness to embark on the next small accomplishment, and so on until you recover your normal habits of life.

Another way to lessen or end depression is with mental activity: read novels or biographies or philosophy or poetry. Go to the movies or the theater or the opera. Go to an art gallery and really look at the pictures. Talk to your neighbors or friends or family. Play a musical instrument or draw a picture or take some photographs or write a poem. Plan your garden or a trip or a fancy meal. Learn archaeology or medicine or Civil War history or art history. Write your memoirs; write essays about your political opinions or your philosophy of life. The possibilities of emotionally satisfying activities are endless. "I'm not one of those people who immerse themselves in the sickness," said Steven, who is a technician in a scientific laboratory. He takes in stray dogs, operates a ham radio, and reads up on scientific discoveries in astronomy. "I keep my regular life going," he says, "keep on working."

When Helen gets depressed, she has a list of things she does: "I usually notice depression when I hit the house after work. Then I find things to do, to keep my mind relaxed. I dig in the dirt. I walk, anything physical. Clean the closet, walk through the mall and window shop. I take a bubble bath. Read the Bible, help someone else." Lisa's husband did the same: "For months," said Lisa, "my husband sat in a chair and stared. Nothing interested him. Then he got into his workshop and started making crafts, carving wooden ducks." Dean gardens; he says it gives him a great sense of peace and beauty. Edward asks his friends to come visit -- "I have a circle of wonderful friends," he said; "they buoy my spirits" -- and writes his newspaper column. "I really battle," he said. "I really try to engage myself in something, try to do some work. Work is the answer, it just is."

What such activities do is redirect your attention away from yourself and your very real problems, to other things in life and their very real pleasures. "I do get depressed," said Rebecca. "But I don't set my mind into that. If I sit at home and think, I get depressed. So every day I tell myself, 'Good morning. Have a good day,' and keep myself busy. I go to the museum, go shopping, volunteer at the Aquarium." Alan, who found the clinic depressing, decided to do something about it: "I talk to people at clinic -- they feel isolated, too. I've become more of an outgoing individual and I really want people to feel not alone. It's so great to see eyes light up, that they're not the only ones."

These and other activities will not make your life wonderful again, but they do seem to dissolve depression, at least temporarily. Sometimes, during a walk, the balance between hope and hopelessness seems to shift back toward hope, and you feel more yourself again. Don't be too impressed by your depression; you have felt it before and you will feel it again. And when the next bout of depression moves in, you, like Helen, will have your list of accomplishments and activities and distractions and small pleasures handy. "The only thing is to keep busy and find things I want to do," said Edward. "I haven't been put out of commission by worry or anxiety. I have on occasion, I have taken to bed for a day. But next morning I'm right up and at 'em. I think 'Ok, I'm going to take care of this.'"

A lot of people, maybe almost all people, get tired of handling depression on their own. Seeing a mental health worker, like a psychologist, and just talking through thoughts and feelings can be a relief, can reassure you that your problems are more or less normal and you're not going crazy after all.

What to Do About Severe Depression

Sometimes, for some people, depression is too severe or it lasts too long. They feel alienated from everyone, deeply apathetic, profoundly hopeless. Severe, persistent depression is often best treated with medication. Talk to a doctor. If medication taken for another condition is causing depression, the doctor can change the drug or lower the dose. If the depression is part of dementia, the doctor will prescribe medications that ease the symptoms. Most of the persistent depression in people with HIV infection, however, is simply the natural reaction to knowledge of a frightening disease. Depression can be successfully treated with appropriate support and medications. In this case, the doctor will recommend a psychiatrist, who can prescribe medication that restores sleep, appetite, and mood. The drugs currently used for severe depression can be nearly miraculous. They do for depression what penicillin does for pneumonia: about 80 percent of severely depressed people with HIV infection get better, and about 50 percent are cured. For most people, treatment of depression is critical but temporary.

In addition to or instead of medication, you might want professional help. Either the doctor or the psychiatrist might recommend professional psychological help (see the section on mental health professionals in chapter 11). Psychiatrists, psychologists, and social workers can help you talk through whatever is blocking the healing process, though only psychiatrists are trained medically and can prescribe medications. Psychotherapy may concentrate on the overwhelming problems people must face and feel they cannot solve: How can I face rejection? How can I deal with anger? How can I feel less guilty? How can I have sex without hurting myself or anyone else? Why me? Am I a good person? Why now? By helping you confront problems you feel are unsolvable and find new perspectives on those problems, a psychotherapist will help you take control of your life. He or she will help you deny, not the fact of your infection, but your own helplessness and hopelessness in the face of it.

Thoughts of suicide are usually only temporary. When Lisa's husband said he was considering suicide, Lisa asked him to first talk to a psychologist. She also told him she thought he owed it to her not to act without talking to her. He agreed and made those promises. Eventually, he decided against suicide. Like Lisa's husband, many people find their interest in life is stronger than their desire to die. In fact, the suicide rate among people with HIV infection is low. Researchers say that people seem to consider suicide mostly as a means of regaining a feeling of control over their lives. And that makes sense -- it is as though people were saying, "This disease does not control whether I live or die, I do." If that choice seems to be in your hands, you feel less helpless, more in control.

Nevertheless, if thoughts about suicide persist, and if thoughts of taking pills become plans to collect specific pills, and if these persistent, concrete thoughts are coupled with an increase in guilt and a sense of punishment, then get help. Call your doctor or psychotherapist.

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.