Plain Talk About...Mutual Help Groups

(posted by Hopkins Technology)

National Institute of Mental Health Office of Scientific Information

"I believe in self-help as an effective way of dealing with problems, stress, hardship, and pain...Mending people, curing them, is no longer enough; it is only part of the total health care that most people require."*

C. Everett Koop, M.D., Sc.D. Surgeon General U.S. Public Health Service

For many human problems there are no easy answers or easy cures. Even after the best professional help has been obtained, a person may be left with difficulties too great to handle alone. In this situation, millions of people have found much-needed personal support in mutual-help groups. It is within these groups, whose members share common concerns, that they are offered an important aid to recovery, the understanding and help of others who have gone through similar experiences. This brochure lists some of the groups that offer solace and assistance to those who must deal with mental illnesses, addictive behaviors, and other emotional problems. People like those in the examples cited in the vignettes in the brochure can find help by contacting groups such as the ones listed.

*Health Resources and Services Administration, DHHS, THE SURGEON GENERAL'S WORKSHOP ON SELF-HELP AND PUBLIC HEALTH, Sept 20-22, 1987, Rockville, MD: the Administration, 1988.

Rosa knew it was "the chance of a lifetime" when her boss began talking about sending her to New York for a month of high-powered executive training. But, instead of being elated, she grew tense and anxious. Then one day while having a meal at a new and fashionable restaurant, she was suddenly over- whelmed by fear so intense that she was sure she would faint right there in front of everyone. Since then, the panic has struck her without warning on numerous occasions - in an elevator, in an executive meeting, in line for the movies. Rosa now fears not only the fear itself, but losing control in front of others and, most frightening of all, losing her mind. Consequently, she limits her activities to working alone and watching TV in the evenings with her parents. Her dreams of an exciting and vibrant career are beginning to seem just that- dreams.

WHAT IS MUTUAL HELP?

Mutual help has been a mainstay of life for as long as families have existed. As social beings, all of us need to be accepted, cared for, and emotionally supported. We also find it satisfying to care for and support those around us. Within the most natural "mutual-help networks" - made up of our families and friends - we establish the one-to-one contact so important to our happiness and well-being. We often take this informal support for granted, but it clearly influences our ability to handle distressing events in our lives. Many of our daily conversations are actually mutual counseling sessions in which we exchange the reassurance and advice that help us deal with routine stresses. In fact, scientists have found that this sort of emotional support can help prevent ill health and that it promotes recovery when an illness or accident does occur.

The supportive relationships we establish with family and friends, however, constitute only some of the interpersonal networks that help sustain us through life. As we develop socially and intellectually, we tend to associate with others who have similar interests and beliefs. These associations include religious congregations, civic and fraternal organizations, and social clubs: in them, members benefit from a shared identity and a sense of common purpose. Some groups are aimed primarily at social enjoyment. Others come together to bring about social change. Through combined efforts, the group can often promote or accomplish what the individual cannot. Yet each member's presence and participation adds to the strength of the group.

Even as a youngster, Steve was very reserved, a personality that puzzled his outgoing parents. But they admired his interest in music and his facility with complicated fantasy games and considered him quite bright. Steve's high school grades, however, were only average. After he was at college for a few months, he claimed that his professors conspired against him by making his exams more difficult than those of other students. His parents were concerned enough to have him evaluated by a psychiatrist. He was diagnosed as having schizophrenia and placed on medications that seemed to help with many of his symptoms, but other problems like lack of motivation to study or to find a job remained. Now in his early thirties, Steve sits about the house disheveled, communicating little with his family and rarely going out of the house. Steve is one of the unfortunate schizophrenics for whom medications and psychosocial therapies provide only partial relief. His parents are exhausted by their efforts to help him and need to find others who understand the fears and frustrations they are experiencing.

WHY THE NEED FOR MUTUAL-HELP GROUPS?

The twentieth century has produced social changes which affect our traditional patterns of support. Living in a highly mobile society, we may not enjoy the benefits of a permanent community and longstanding stable relationships. People today are apt to live in more than one home before adulthood. As adults, they may hold a series of jobs requiring them to form new friendships in new locations. Their families, once close, are now separated by distance. The emotional and practical support they gave is no longer available and may not be forthcoming from new neighbors and friends. And, perhaps most significantly, divorce is separating millions of families each year. Despite these changing social patterns, our needs for stability and support remain constant. We are likely to feel a sense of isolation, questioning "What role do I play in such a vast, impersonal world? Where can I find other people like me?" To overcome this sense of isolation, to exercise more control over the quality of their lives, and to get help with serious mental disorders, millions are turning to mutual-help groups.

WHAT IS THE PURPOSE OF MUTUAL-HELP GROUPS?

The estimated half-million mutual-help groups in existence deal with almost every human problem. There are three types of formal groups: (1) the self-care groups for those suffering physical and mental illness (there is at least one group for nearly every major disease); (2) the reform groups for addiction behaviors (particularly the "anonymous" groups such as Alcoholics Anonymous); and (3) advocacy groups for certain minorities (handicapped, elderly, mentally ill, etc.). Names and addresses of support groups in any of these categories can be obtained from self-help clearinghouses such as those listed in this brochure.

In spite of the enormous diversity of the problems they address, all mutual-help groups have the same underlying purpose: to provide emotional support and practical help in dealing with a problem common to all members. There is a special bond among people who share the same troubling experience; it begins when one person says to another, "I know just how you feel," Knowing that someone else truly understands one's feelings by virtue of having "been there" brings a sense of relief; one's pain is no longer a burden borne alone. Stepping into the security of such a group can be like coming home for those who have been too long isolated by their private and painful concerns. Each mutual-help group provides an atmosphere of acceptance that encourages members to share their sorrows, fears, and frustrations. They can then begin to communicate more openly, view their problems more objectively, and find more effective coping strategies.

HOW DO MUTUAL-HELP GROUPS OPERATE?

The structure of mutual-help groups and the way they serve their members depend primarily on their goals. Each local group determines its own programs and meeting schedules. Typically, groups hold regular meetings in church halls, public buildings, or other no-rent or low-rent facilities. Many small groups meet in a member's home. Programs for those meetings can include group discussions, study groups, visiting speakers, and other activities that inform the members and help to build their confidence. Along with the personal support gained from meeting together, the groups may offer additional services. Newsletters published by both parent organizations and local groups report individual success stories, treatment updates, and other information about the group's concerns. Some groups maintain a "hotline" so that those in need will have constant access to information and an understanding listener. Others, particularly those focusing on addictive behavior or emotional disorder, use a "buddy system" so that members can count on one-to-one encouragement between meetings. Some groups, such as those that deal with a rare disease and have only a few members in each part of the country, have a correspondence referral system to put members in touch with one another. Although some mutual-help groups receive funding from Government health agencies and public contributions, many are entirely self-supporting through members' voluntary contributions or minimal dues (average: $10-$15 yearly). Since the groups are run by members for members, there are seldom any professional salaries or overhead costs (although an office administrator or secretary is sometimes necessary). Some groups will even refuse outside contributions on the grounds that it would compromise their independent status.

Rita is a 30-year-old assistant director of a highly regarded film institute. Crossing the street one winter evening, she slipped on a patch of ice and fractured her leg. The healing process kept her from working for a few weeks. She was then expected to return to the office with the aid of crutches. She maintained, however, that she needed more time to "get herself together" and continued to stay at home. When a good friend went to check on her, he found a thin, unkempt, and thoroughly exhausted young woman on the brink of quitting her job. She confessed to him that she had been awakening each morning around 4 o'clock and ruminating about all the problems she felt she had created at the institute. As a result, she had come to the conclusion that her coworkers would all be better off without her. Her friend protested, telling her that her work was highly respected, but he could not persuade her to return. He also observed that she apparently had not eaten much but tea and toast for days. She, however, insisted she wasn't hungry. The most disturbing thing he noticed was her prized jungle of plants, all dead or dying. Rita is suffering from major depression, a clinical syndrome that overwhelmed her once before when she was younger. Because she felt that no one would understand, she had kept it a secret from her friends and colleagues. She now is desperately denying that the problem has returned. Her friend urged her not only to seek treatment but to attend a meeting with others who share like difficulties.

Peter is tortured by repeated impulses to harm his beloved infant daughter. Marie fears the germs that she believes are lurking in every corner of her office. And George imagines that he will unwittingly cause horrible disasters like forest fires and train wrecks. All three individuals suffer from obsessions they feel powerless to control. All three have contrived ways to keep disaster at bay. Peter avoids being alone with his daughter by involving himself in time-consuming rituals, such as checking and rechecking things. Marie comes to work 2 hours early each day in order to scrub every exposed surface in her office with disinfectant. She stays late to scrub again after all her co-workers have left. George, a salesman, can't stop himself from going back over the miles he has already covered to make certain that the ashes from his cigarette haven't started a forest fire or that the half-eaten sandwich he thoughtlessly threw out the window while crossing a railroad track hasn't caused a train to derail. Peter, Marie, and George have something else in common: all three know that their thoughts and actions are inappropriate, but they can't seem to stop them. They have a mental illness called obsessive-compulsive disorder.

WHAT HAPPENS AT A MUTUAL-HELP GROUP MEETING?

For the millions currently utilizing and contributing to mutual-help groups, the process began with a tentative exploration, a first meeting. Of course, the prospect of exposing a previously concealed pain may be frightening; thus many approach their first group meeting with their defenses up. All new members wonder what the group can do for them and what it will ask in return. Experienced members, aware of these mixed emotions, encourage new members to feel relaxed and welcome. A veteran member may begin a conversation and offer literature that outlines the group's purposes. In an atmosphere that is friendly, compassionate, and accepting, new members soon realize that their participation is purely voluntary, with no strings attached. There is an unwritten code of confidentiality within the group, and each member's privacy and dignity is respected. Everyone is given the freedom to draw on the strength of the group as needed and to extend support to others when possible. Even in the groups which have a series of steps to recovery (such as the "Anonymous" organizations), members proceed at their own pace, within their own limits. Group disapproval of those who stumble in the march toward recovery is rare because everyone knows how difficult it can be. In fact, mutual-help groups use the knowledge gained from a conflict or crisis as a valuable tool for building better ways to manage such problems in the future.

Lamar had gone off to college as excited and apprehensive as any 18-year-old. In high school, he was a serious student with high marks. Even though he was rather quiet, the student body elected him president of the senior class and "most likely to succeed." Many trophies attested to his prowess at basketball. After 6 weeks of attending college classes an parties, Lamar became aware that he had not been keeping up with his assign- ments: two papers were due and a major exam was impending. A few evenings later, numerous students complained to the manager of the dorm that Lamar was blasting "hard rock" tapes at high volume in the middle of the night, refusing to use earphones. When the ebullient Lamar was confronted with those accusations, he told the manager excitedly that he had been up all night preparing posters to advertise the lecture he intended to give on "Music, Its Effect and Its Affect," and that he needed the loud music for inspiration. The manager's patience finally ran out at 3 a.m. a few nights later when a naked Lamar was seen and heard galloping around the quadrangle, shouting for everyone to come out and dance with him in the moonlight. Unable to calm him down, the school authorities took him to the local hospital for observation. Shortly thereafter, Lamar fell into a deep depression. His diagnosis was manic-depressive (bipolar) disorder, and his symptoms were soon relieved by appropriate medication and a regimen of psychotherapy. He returned to school. However, now that he feels well again, Lamar is considering stopping his medication so that he will "be like everyone else." What Lamar needs to understand is that he is not alone - many others must rely upon some form of help to maintain their equilibrium.

To those new to a mutual-help group, being with others like themselves, who are successfully getting on with life despite their problems, can be the best encouragement of all. Who are the "others" who provide the positive example that keep the group together? If they have passed a crisis or gained confidence in coping with their hardship, what further need do they have for shared support? While there are no levels of distinction among the members in a group, there are always those who are stronger, more experienced, more committed to the group's goals and more able to give of themselves. These people often assume leadership roles, continuing to receive comfort and encouragement while helping others. There is a natural tendency among those who have derived benefit from the group to want to perpetuate the cycle of being helped and helping. For those helpers who lead, organize, reach out to others, and bolster the group's morale by their own example, reward comes in seeing the progress of others. Says one group member, "I've been there and know what it's like. I could have been saved 20 years of misery if there had been a group to help me."

WHAT ABOUT PROFESSIONAL HELP?

Mutual-help groups do not intend to replace physicians, therapists, and other skilled professionals. Rather, the groups function in the belief that many of our physical and mental health needs go beyond the bounds of formal care measures. Some who have received treatment for an illness have taken only the first step toward recovery; adjusting to a long convalescence becomes the greater challenge. Others must deal with a lifelong handicap or chronic illness. For both, the practical problems of everyday life can be overwhelming. In particular, those who have a mental or emotional illness require the continuing support of others to help them along the road to recovery. These ongoing problems do not signify a failure on the part of professional caretakers but indicate that there are limits to their ability to serve our needs.

Some mutual-help groups avoid formal professional guidance or consultation, although many have benefitted from the informal help of professionals. Despite the distance maintained between the groups and their professional counterparts, each acknowledges the role of the other: groups typically encourage their members to seek or continue with the professional help they need, and many physicians and other service providers strongly endorse group programs as an appropriate extension of care.

Mary Ellen's friends thought she was the perfect mother, wife, friend, and hostess. Her husband George, a prolific author, counted on her to edit his works and manage his schedule. He was the first to notice that she was no longer able to remember her good friends' names, her children's birthdays, or the details of her busy life. Lately during social occasions, she can be seen flitting from group to group smiling, nodding, and murmuring politely but never engaged in meaningful conversation. She is no longer able to go shopping or pay the household bills as she did for the past 30 years. Mary Ellen as Alzheimer's disease, and George is as desperate to hide her affliction as he is to find help for her and himself.

FINDING THE MUTUAL-HELP GROUP THAT YOU NEED

You may already have heard about a mutual-help group that deals with your concerns. There are a number of ways to get more information about groups that may interest you. Some of the larger groups are listed by subject in the phone directory, and the names and phone numbers of many more are available from hospitals and local health and social-service agencies. If you're interested in an organization that does not have a group in your area, the central office will provide information on organizing one. Directories of mutual-help groups can usually be found in public libraries, and more comprehensive information and assistance, including how to organize a group, can be found through the organizations and reference books listed.

The important thing to realize is that mutual-help groups are there for you. They're economical and effective. And they can reassure you that you are not alone: there are others who understand your problem and are eager to share their experience and support with you.

MESSAGE

This booklet was produced by the National Institute of Mental Health (NIMH), the U.S. Government agency that supports and conducts research to improve the diagnosis, treatment, and prevention of mental illness. NIMH-supported studies alleviate suffering and bring hope to people who have a mental disorder, to those who are at risk of developing one, and to their families, friends, and coworkers. Thus mental health research benefits millions of Americans and reduces the burden that mental disorders impose on society as a whole. NIMH is part of the Alcohol, Drug Abuse, and Mental Health Administration, a component of the U.S. Department of Health and Human Services.

Lewis L. Judd, M.D. Director, NIMH

The following organizations offer support to people with mental or behavioral problems.

AIDS REFERRAL The U.S. Conference of Mayors publishes a brochure, "Local AIDS-Related Services National Directory", a listing of over 2,000 AIDS groups. 1620 Eye St. NW Washington, DC 20006 (202) 293-7330

AL-ANON FAMILY GROUP HEADQUARTERS For relatives and friends of persons with alcohol problems. Includes ALATEEN 1372 Broadway New York, NY 10018 (212) 302-7240

ALCOHOLICS ANONYMOUS For men and women who share the common problems of alcoholism P.O. Box 459 Grand Central Station New York, NY 10163 (212) 686-1100

ALZHEIMER'S DISEASE AND RELATED DISORDERS ASSOCIATION Offers assistance and information to Alzheimer's families through its 188 chapters nationwide P.O. Box 5675 Department PX1 Chicago, IL 60680 Illinois: 1-800-572-6037 Nationwide: 1-800-621-0379

AMERICAN ASSOCIATION OF SUICIDOLOGY For those who have experienced the suicide of someone close. 2459 South Ash Denver, CO 80222

ASSOCIATION FOR CHILDREN AND ADULTS WITH LEARNING DISABILITIES For individuals-children and adults-who suffer from a learning disability. 4156 Library Rd. Pittsburgh, PA 15234

AMERICAN NARCOLEPSY ASSOCIATION Provides information and referrals to people with sleep disorders. P.O. Box 1187 San Carlos, CA (415) 591-7979

AUTISM SOCIETY OF AMERICA For adults and children who have autism 1234 Massachusetts Ave., NW Washington, DC 20005 (202) 783-0125

THE COMPASSIONATE FRIENDS For bereaved parents: peer support P.O. Box 3696 Oak Brook, IL 60522-3696 (312) 990-0010

DEPRESSION AFTER DELIVERY For women experiencing Post Partum Depression P.O. Box 1282 Morrisville, PA 19067 (215) 295-3994

EMOTIONS ANONYMOUS For persons with emotional problems: A Twelve-Step Program adapted from the Alcoholics Anonymous Program. P.O. Box 4245 St. Paul, MN 55104 (612) 647-9712

FAMILIES ANONYMOUS For concerned relatives and friends of youth with drug abuse or related behavior problems. P.O. Box 528 Van Nuys, CA 91408 (818) 989-7841

NARCOTICS ANONYMOUS For narcotics addicts: peer support for recovered addicts. P.O. Box 9999 Van Nuys, CA 91409 (818) 780-3951

THE NATIONAL ALLIANCE FOR THE MENTALLY ILL For families and friends of seriously mentally ill individuals; provides information, emotional support, and advocacy through local and State affiliates. 2101 Wilson Blvd. Suite 302 Arlington, VA 22201 (703) 524-7600

NATIONAL ASSOCIATION OF ANOREXIA NERVOSA AND ASSOCIATED DISORDERS Offers assistance to anorexics/bulimics and their families Box 7 Highland Park, IL 60035 (312) 831-3438

NATIONAL COALITION AGAINST DOMESTIC VIOLENCE National organization of shelters and support services for battered women and their children. P.O. Box 15127 Washington, DC 20003-0127 1-800-333-SAFE

NATIONAL DEPRESSIVE AND MANIC DEPRESSION ASSOCIATION For depressed persons and their families. Merchandise Mart P.O. Box 3395 Chicago, IL 60654 (312) 939-2442

NATIONAL FOUNDATION FOR DEPRESSIVE ILLNESS, INC. Provides referrals to support groups. P.O. Box 2257 New York, NY 10116 (212) 620-0098 1-800-248-4344

NATIONAL MENTAL HEALTH ASSOCIATION Citizens advocacy group concerned with all aspects of mental health and mental illnesses. 1021 Prince St. Alexandria, VA 22314-2971 (703) 643-7722

OCD FOUNDATION, INC. For sufferers of obsessive-compulsive disorder and their families and friends. P.O. Box 9573 New Haven, CT 06535 (203) 772-0565, 772-0575

ORTON DYSLEXIA SOCIETY For persons interested in the study, treatment, and prevention of the problems of specific language disability. 724 York Rd. Baltimore, MD 21204 (301) 296-0232 1-800-ABC-D123

PARENTS ANONYMOUS For parents who have abused their children. 6733 South Sepulveda Blvd. Suite 270 Los Angeles, CA 90045 (213) 410-9732

PARENTS UNITED For abused children and for adults who were abused as children P.O. Box 952 San Jose, CA 95108 (408) 280-5055

PHOBIA SOCIETY OF AMERICA For people who suffer from phobia and panic attacks. 133 Rollins Ave. Suite 4B Rockville, MD 20852 (301) 231-9350

RECOVERY, INC. For former mental patients; peer support 802 North Dearborn St. Chicago, IL 60610 (312) 337-5661

TARDIVE DYSKINESIA/TARDIVE DYSTONIA NATIONAL ASSOCIATION For tardive dyskinesia or tardive dystonia sufferers. 600 East Pine St. Seattle, WA 98122 (206) 522-3166

Information about self-help groups can be obtained from self-help centers and clearinghouses. Some of these are listed below.

CALIFORNIA SELF-HELP CENTER 2349 Franz Hall, UCLA 405 Hilgard Ave. Los Angeles, CA 90024-1563 (213) 825-1799 California residents: 1-800-222-5465 Publishes "Self-Help Group Resources Catalog: A Guide to Print, Audio, and Visual Materials and Services for Starting and Maintaining Self-Help Groups."

THE NATIONAL MENTAL HEALTH CONSUMERS' SELF-HELP CLEARINGHOUSE 311 South Juniper St., Room 902 Philadelphia, PA 19107 (215) 735-6367 Provides technical assistance and information and referral services to further the development of consumer-run mental health self-help groups.

NATIONAL SELF-HELP CLEARINGHOUSE GRADUATE SCHOOL AND UNIVERSITY CENTER City University of New York 33 West 42nd St. New York, NY 10036 (212) 840-1259 Newsletter, free brochure.

SELF-HELP CLEARINGHOUSE St. Clares - Riverside Medical Center Denville, NJ 07834 (201) 625-7101 Publishes "The Self-Help Source Book," listing 500 national organizations.

SELF-HELP CLEARINGHOUSE OF THE GREATER WASHINGTON AREA 100 North Washington St. Suite 232 Falls Church, VA 22046 (703) 536-4100 Provides information, referral, and support services to self-help groups in the Greater Washington Area.

SELF-HELP CENTER 1600 Dodge Ave. Suite S-122 Evanston, IL 60201 (312) 328-0470 Publishes in conjunction with the American Hospital Association "Directory of National Self-Help/Mutual Aid Resources".

DHHS Publication No. (ADM)89-1138 Printed 1981, Reprinted 1983, Revised 1989

This material was produced by the National Institute of Mental Health. It may be reprinted without further permission.

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