Sources of Support

Over and over, people affected by HIV infection say they could not manage to preserve their emotional health without a sister or a certain friend or support group or aunt or doctor or counselor.

This is not an absolute. Some people are more private than others, or would rather rely on their own resources. All people have times when they would rather be alone. Nor are other people always a treat; they can be boring or irritating or demanding or cause outright pain. Even the best of friends can get tiresome. But in general, the people who do best with this or any other disease are those who have the support of their family and friends.

The principal sources of support for people with HIV infection are their partners, parents, husbands and wives, brothers and sisters, aunts and uncles, cousins, grandparents, friends, neighbors. Other sources of support are other relatives, volunteer buddies from advocacy agencies, co-workers, church members, and members of any other groups to which they belong. Still other sources are the professionals who tend the mental health of those affected by HIV infection: psychiatrists, psychol­ogists, social workers, counselors, religious leaders—therapists of all kinds.

Helen says of a team at her clinic who treat her like family: “The strong-willed person they thought I was, I wasn’t. I wanted to die. They just don’t know how important their friendship is. They kept me alive.”

In general, supporters find ways to get people out of themselves. Supporters touch them and let them know they’re valued. Supporters talk about themselves and by doing that, give tacit permission to the per­son affected by HIV infection to talk as well. Supporters listen—with- out criticism, without advice, without too many suggestions for improve­ment, and with kindness.

What follows are examples of the ways family, friends, religious leaders, AIDS-advocacy organizations, and mental health professionals have provided support. The examples can give caregivers some ideas of what support to offer and how vital that support is. The examples can also give people with the virus some notions of what support might be possible and where to get it, and perhaps a recognition of the support they already have. This is not a representative sample of all the kinds of support. People are endlessly inventive, and the ways to provide support must be nearly infinite.

Family

Families can provide a unique kind of support and some of the closest relationships people ever have. For some people, this closeness seems to make them feel as though they and their families are arms and legs of the same body. The exact kind of support families provide is not always concrete, and sometimes it is a little mysterious. Steven’s face shines when he talks about his family: “Sometimes when I feel pretty much alone and discouraged, my family overpowers me. They just overpower me.” And Rebecca says, “I feel all the more ‘me’ around my family.”

One of the most important things that members of the family do is bring with them a sense of a shared past. Families reminisce, talk about good times, retell old stories. Steven’s family remind him of the time he fell out of the tree onto the picnic table and got his mother’s potato salad all over him. With such stories about the past comes a sense of being part of both the past and the future, a sense of who you are and what your roots are, a sense of continuity. Feeling a part of something larger is a deep comfort to people affected by HIV infection. Perhaps that is what Steven means when he says his family just “overpowers” him.

Families also make people feel cared about. “My husband has been really, really great,” said Rebecca Wolfe. “My whole family has all been great. This disease can become so overwhelming—you feel like you’ll never be like anyone else.

People affected by HIV infection seem to feel most free with their brothers and sisters. They often find it easier to tell their brothers and sis­ters about the diagnosis in the first place. They feel their brothers and sis­ters understand them and accept them as they are. “I’ve been able to talk and let loose my feelings with my sister,” Dean said. Helen’s stepmother did the same thing: “My stepmother brought her little kids to visit me when I was in the hospital. I told her not to, there are germs here. But she just said, ‘You’re sick. We’re coming.’”

Not everyone whom people consider family is a blood relative. Peo­ple who are distant from their families make substitute families out of their friends. They celebrate holidays and birthdays together, give each other presents, stay in touch, travel together, help each other out. Steven has an old teacher who took him into her family, introduced him to her friends, and takes him on trips and out to dinner: “She’s extended fam­ily to me,” he said. A friend of Alan’s has a mother who, Alan said, “is like another mother to me.” Family also needn’t be exclusively human; many people find comfort in their pets. “My cat meets me at the door every night,” said Alan. “One night, he didn’t, and I missed him. I real­ized how much I appreciated that he usually did.”

In some families, the same closeness makes them expect more of each other than they would of other people: they feel that members of their family should not be gay or use drugs, should not be depressed or even sick. Such expectations are difficult and often impossible to meet, and both sides feel disappointed and frustrated. For some people, then, the family is unable to provide much help. “My husband’s family couldn’t deal with his being sick,” Lisa said. “For a long time, they wouldn’t call, wouldn’t come to visit. When they finally did come, they talked only about routine things.” Notice, however, that Lisa’s in-laws did come to visit, and did provide what small comfort they could by talk­ing about routine things.

Probably, even if your family cannot provide as much support and comfort as you would like, they nevertheless wish they could. They prob­ably feel they should be able to make all your problems go away, and they feel guilty and helpless when they cannot. Perhaps the best thing to do is what Lisa finally did: accept what they are able to offer, and find the comfort in it.

Families are also prime sources of well-meant and unasked-for ad­vice. Such advice can be hard to listen to, especially because the adviser rarely has experience with the kinds of problems HIV infection presents. As a result, the advice can sound annoying or distrustful or conde­scending or just wrong. The same principle that applies to disappointed expectations also applies to unwanted advice: ignore it, or explain that you’ll have to agree to disagree, and find comfort in the adviser’s good intentions and concern. Dean said his rule with his family is, “No criti­cisms, no advice.”

Friends

Another vital source of support is friends—anyone from a partner, lover, or confidant to a person to have fun with, a neighbor, a co-worker, an­other person affected by HIV infection, or anyone who shares interests. Sometimes, because some of these people feel less intimately connected to you than family, they actually find it easier to be good companions and sources of support.

Sometimes friends are also less intimidating to talk to than family. You choose your friends in the first place for what you have in common, and because they will not judge what you say. People commonly say of a friend, “I can say anything to her.” Alan is quiet and not especially talkative, but he gets together with other people who have HIV infec­tion and listens to them talk. “It helps to hear other people talk,” Alan said. “They say your feelings for you.

Even co-workers can be a support: some people feel the people they work with are a kind of family. When Edward was hospitalized, a co­worker called his hospital social worker and asked what she and other colleagues could do. The social worker’s answer was a good one to give anyone who asks such a question: “Don’t leave him alone. Give him openings to talk but don’t push. And stick around and don’t head for the hills.”

Religion

People’s religions offer them two sources of support, one human, one spiritual. Priests, rabbis, ministers, nuns, pastors of all religions give the same sort of help as social workers and psychologists, but they talk par­ticularly to people who want to talk about God. They offer advice, com­pany, and comfort. A hospital chaplain who deals largely with people with HIV infection says, “I start by asking, ‘What do you want me to pray for?’ They tell me, and we talk about that. I think my presence as a representative of the church brings a sense of hope and warmth and comfort.”

A pastor in a large city church, when she celebrates the Eucharist at church, consecrates extra wafers and takes them along for celebration of the Eucharist at the hospital. “That’s become important,” she said. “The people in the hospital are getting the wafers that were consecrated when everybody has gathered together to celebrate the Eucharist. That connection becomes very important to sick people.”

The spiritual comfort of religion can be separate from the human comfort. Dean’s faith brings him strength: “My greatest source of sup­port is my church,” said Dean. “It’s spiritual support, having God who is greater and could intervene. I don’t believe God creates these things; I don’t believe any of that stuff about plagues. I do a lot of communicat­ing with God. I say, ‘Okay, I’ll work it out with you.’ It has a healing ef­fect. God gives us the strength to meet each day and live it to the fullest.”

Helen’s faith brings her reassurance: “God loves me so much.

AIDS-Advocacy Organizations

What this book calls AIDS-advocacy organizations are organizations in the community, sometimes only local, sometimes affiliated with a na­tional organization, that offer a huge variety of services to people with HIV infection and to their caregivers. The services these organizations offer include buddies, counselors, information on treatments, education about HIV infection, help with financial problems, home health care, help with housing problems, help with legal problems, legal services, re­ports on the latest medical research, support groups, political action, and transportation—to name a few.

Many of these organizations also run hotlines, which are toll-free phone numbers to call for information on HIV infection and for refer­rals to the organizations and services available in your local community.

To find out what’s available in your community, check the phone book’s yellow pages under AIDS or HIV, or the phone book’s govern­ment blue pages under Health or AIDS or HIV. Or call the hotlines of national AIDS-advocacy organizations. Your physician or hospital so­cial worker is also a good source for the resources in your own com­munity.

For more information, and for addresses and phone numbers of na­tional organizations and hotlines, see Appendix A, “Resources.”

Support and Therapy Groups

Some of the best support for people affected by HIV infection comes through organized support and therapy groups. People often resist join­ing such groups because, they say, their families and friends and religion are sufficient, or they are embarrassed to turn to strangers, or they just don’t like joining groups. Once they join a group, however, they find that talking to people who share the same experiences allows them to open up and say things they could not otherwise say. For people whose fam­ily and friends are unable to be much help, support and therapy groups are lifesavers.

Talking to people who share your situation can reduce your sense of isolation and give you a feeling of community. Listening to them talk can also give you a different perspective on your own problems. Seeing what works for other people, and what does not, helps you decide what might work for you. Hearing your problems described by someone else as their problems is somehow reassuring, calming—you don’t feel alone with your problems; you’re in good company. People say that groups give them a sense of relief from their own problems, and a sense of hope. People like the thought that they might be helping others in their group.

Support and therapy groups are found everywhere (see Appendix A, “Resources”): hospitals, clinics, churches, AIDS-advocacy organizations, to name a few. Groups are composed of people with common situations. Some groups are for people who have the virus but no symptoms; some are for people with HIV infection, some for people with AIDS; some are for caregivers; some are for the people with HIV infection or AIDS and their caregivers; some are for women with HIV infection; some are for black men with HIV infection; some are for gay men; some are for in­jection drug users.

Though the difference between support and therapy groups is not always clear-cut, support groups tend to be for company and comfort, therapy groups for solving specific problems. The goals of support groups often include learning to reduce isolation, to share experiences, to see what works for others, to express things you might not express elsewhere, to feel accepted. Those who choose a support group are prin­cipally looking for a safe place in which to be themselves and to be less isolated. The goals of therapy groups are the same, but also include learning to confront patterns in people’s lives with which they are un­happy: they feel they are always lonely, for instance, or that they pick the wrong sorts of partners. These are not necessarily problems specific to HIV infection, though everyone else in the group should also be deal­ing with HIV infection. Both types of groups should be small, usually from five to eight people. Both groups are usually led, more or less loosely, by a qualified, experienced mental health professional.

Alan began going to a support group when his counselor recom­mended it: “The group has had a big effect on me. One of the worst things about the virus is not talking about it. When I talk to the group, my feeling of isolation is gone. The group also helps me release stress and anger. Plus you get a perspective on HIV, that it’s no big thing, though I’m logical enough to know it is a big thing. But the perspective helps me not paralyze myself and not get into self-fulfilling prophecies. The group has been such a support.”

Steven found that his group helped him feel hope and courage: “It’s uplifting at the meetings. You get encouraged to keep trying to find help, to pursue all avenues. You learn that someone is out there no matter how bad it is. You learn you’re entitled to help.”

Support groups help people understand themselves better and find connections with other people. “Sometimes, when you finally verbalize the things that are pretty far down,” Alan said, “they become a perma­nent part of you. I have always felt pretty isolated, and I was able to say that. One time the group leader said that we will realize the people we love, love us. I found some people who love me that I hadn’t even real­ized did love me. That opens me up to a nonsexual loving relationship.”

Mental Health Professionals

Some mental health professionals—psychiatrists, psychologists, social workers, psychiatric nurses, counselors—deal primarily with people af­fected by HIV infection. Psychiatrists are physicians who have special­ized in psychiatry—that is, in disorders of mood and thinking; psychia­trists can prescribe medication. Psychologists have doctoral degrees, either a Ph.D. or an Ed.D., in psychology; psychologists can test and di­agnose. Social workers have master’s degrees plus supervised training. Psychiatric nurses have master’s degrees plus supervised training. And counselors can be pastors or others who counsel people. All these pro­fessionals should be certified by the certifying boards of their respective professions. The certifying boards for counselors are variable, some good, some not so good, and as a result, counselors are not as tightly monitored as the other mental health professionals.

To overgeneralize, these professionals offer two kinds of therapy— talk therapy and medical therapy. All of them offer talk therapy. They can help you express and understand and resolve painful feelings, ana­lyze and solve problems with other people, gain a sense of who you are as a whole person. They will work with problems that range from the specific and practical to the fundamental and philosophical. You can say anything to them. Psychiatrists alone can also offer medical therapy, drugs that restore sleep, appetite, and mood. Probably the best advice is to begin with talk therapy, but you will want to ask the professional to refer you for medical therapy if necessary. The professional who is un­willing to do this is best avoided.

If you do not know who the mental health professionals are, begin by asking medical professionals—doctors, nurses, physician’s assis- tants—whom you do know. If they cannot help, they will surely refer you to someone who can. Local AIDS-advocacy groups, the gay com­munity, local mental health associations, and state mental health agen­cies all have lists of qualified, experienced mental health professionals.