What People Feel Guilty About
One of the many peculiarities of HIV is the amount of guilt it seems to inspire. People feel guilty for having become infected. They feel they are somehow to blame for having gotten the virus, that they brought it on themselves. "I feel a little guilt," said Steven. "I should have known to practice safer sex, even though at the time I got infected, no one even knew the virus was around. I know how stupid that sounds, but I feel guilty anyway." They feel guilty about bringing HIV infection into the lives of other people: about putting their partners or spouses at risk, about telling their children they have HIV infection, about distressing their parents, their families, and their friends.
Many people also feel guilty about the behavior that put them at risk in the first place. "I felt guilty over my period of promiscuity when I first came out as gay," said Edward. "I justified it at the time, but I knew it was wrong." The behaviors that exposed most people to the virus -- gay lovemaking and injection drug use -- are behaviors of which society often disapproves. For many people, social disapproval is distressing, and they feel isolated and punished. Sometimes they unconsciously take social disapproval on themselves as guilt. "A lot of us took society's view," said Dean, "and felt guilty about being gay." The same is generally true for injection drug users: "I was real upset with myself," said Helen. "This disease makes me feel like I've been a dirty person, and I'm not. I'm a clean person."
Even those whose exposure to the virus came through conditions society does not disapprove of -- blood transfusions, hemophilia -- still feel guilty. Even people whose infection came through heterosexual sex worry about social disapproval: "I got infected by an old boyfriend," said Rebecca, "but I worry that people will think I had been a slut." They feel they are to blame for involving their families in a disease that is socially isolating, and for putting their spouses at risk. Lisa said her husband had been afraid their daughters would say, "What did you do to our family?" "I felt guilty when I was diagnosed," said Dean. "I thought 'I killed my partner.'" Like Dean's partner, Rebecca's husband remains uninfected, but Rebecca worries about the consequences to him if her infection becomes public: "I cannot let my husband be hurt by this. His career would be jeopardized by them finding out about me. Maybe they'd be understanding, but I can't take that risk."
Even caregivers feel guilty. Steven's mother feels that if she had been a better mother, Steven would not have been gay and come in contact with the virus.
Causes of Guilt
Guilt does not necessarily have a cause. Guilt, like fear, is a feeling that may or may not have anything to do with the facts. Some people knowingly did something they should not have done. Perhaps they knew they ran a risk when they became infected. Others are accepting blame for something over which they had no control. Perhaps they knew nothing about the virus or they thought they were taking appropriate steps to avoid infection or they unknowingly received infected blood.
Guilt, like all other reactions to this infection, is a natural human feeling. Sooner or later in their lives, most people feel guilty about something, sometimes justifiably, sometimes not. Alan, for instance, remembers stealing a plastic toy from a dime store when he was seven years old, and though he does not feel like a criminal, he does feel a vague sense of shame and is not able to forget the incident.
Perhaps guilt comes from a sense that good behavior deserves reward and bad behavior deserves punishment, and since the virus feels like a punishment, they must have behaved badly. Perhaps social disapproval operates the same way: people feel isolated and punished, so they feel they must have done something wrong to deserve it. Both of these possibilities are built on bad logic and are just plain wrong.
What to Do About Guilt
First, separate the virus from a sense of punishment. Lisa states: "What I say is, it's a virus, not a punishment. I didn't get the virus and my husband did. Does that make me good and him bad? That's ridiculous. Everyone got this virus like my husband did: being in the wrong place at the wrong time."
The virus does not set out to "get" anyone. It has no brain, no judgment, no ability to pick out who is worthy and who is not. The virus has nothing whatever to do with punishment. Nor does anyone set out to get infected with the virus. The conditions that put most people at risk for the virus -- homosexuality and drug addiction -- may well be directed by biology and, in any case, are not the result of a conscious intention. No one makes a conscious, informed decision that they will become gay or will use drugs.
Understand that guilt, except when it keeps you from repeating mistakes, is a remarkably useless emotion. Feeling guilty means worrying about something you cannot change. Whether people knowingly ran a risk or not, the past is beyond anyone's power to change. Guilt keeps people captured in the past and prohibits them from doing what they can to improve the present. Guilt uses emotional energy that would be better used on the real problems of life.
Balance guilt by understanding your own worth. Ask yourself, outside my worries, who am I? A pastor who has had experience with people with HIV infection asks people, "What else besides the things you feel guilty about are you? What do your friends like about you? They tell me 'that I helped them move the piano, that I had some good kids, that I was a good friend.'" Steven told himself, "You just have to focus. You're worth something. You're not scum, you can make a difference."
In the process of focusing on your own worth, guilt usually fades away. People come to like themselves for who they are. Some people speed up the process by getting help from a therapist. During therapy, they deal with the attitudes and behavior, often left over from childhood, that make them feel guilty. They learn to feel comfortable with themselves and free themselves of their old, useless burden of guilt.
Sometimes, however, guilt is not particularly personal, that is, people aren't feeling punished or ashamed or responsible or bad. Their worry is more general, more religious or philosophical. They're trying to make sense of their HIV infection, to fit it into their mental worlds, to understand why they got infected.
Helen is an eloquent example. The drugs are less effective with her, her viral load is detectable, and she has trouble not taking it all personally. "So what did I do wrong?" she said. "I can't make it out, to tell you the truth. If it's true that bad things happen to bad people, I'm ruined. People say to me, 'How could this happen? You're such a good person?' I guess maybe I'm not. Or maybe I'm not really a bad person and I'll be spared. For me, usually, reading, getting involved in stories, is a great way to stop worrying. The problem is, in most stories, bad things happen to bad people -- it's just there all the time. I don't know how to get around it, even though I'm convinced in my deepest core it's wrong. You can see I've thought about it."
For Helen and others, guilt actually seems to be the first step in making sense of their new lives. Their reasoning goes like this: Why did I get this virus? Did I do something wrong? If I didn't and the virus isn't a punishment, if it's simply a random biological fact that's affecting my life, then what do I do? How do I make sense of that? The question has been addressed by every theologian and philosopher since the Book of Job. The answer is going to be deeply felt, carefully thought out, unique to everyone, and completely beyond the scope of this book or the expertise of its authors.
This book excerpt has been provided with the permission of The Johns Hopkins University Press.
Copyright © 2006 The Johns Hopkins University Press.