Chapter 35
Support Groups
I desperately needed to talk to someone who had gone through this dark and lonely forest before me—someone who knew what to expect next and how long the pain would last.
—Helena V.
Stepping into the security of such a group of people can be like coming home for those who have been too long isolated by their private, painful concerns.
—Peter C.
Because of the importance support groups can play in emotional and physical health, they have their own chapter.
Section 1. What Is a Support Group?
A support group, also known as a mutual-help or self-help group, provides emotional support and practical help in dealing with problems common to all members.
Support groups complement professional treatment. Such groups are generally free with the exception of those run independently by a psychiatrist or psychologist.
Section 2. Why Join a Support Group?
Studies show that participants in a support group benefit by sharing information and feelings, particularly regarding
• the practical aspects of living with a particular condition.
• treatments, health care, and medicines.
• the various specialists in the area.
• decreasing costs.
• accessing moneys and other services that may be available locally.
• a participant’s emotional life and coping.
• family life and friendships.
• loneliness and isolation.
A published study on longevity indicates that support groups can also help keep participants healthier and extend their life. The study by Dr. David Spiegel at Stanford University found that, on average, women with breast cancer who participated in a support group lived twice as long as those women in a control group who did not.
Likewise, in a study involving people with AIDS, networks composed predominantly of peers were associated with greater psychological well-being than networks containing high percentages of relatives. It was also found that the degree to which the person felt he gave support to his network members was significantly correlated with psychological well-being. These findings are consistent with previous research on social support and life crises.
Section 3. How a Support Group Works
Usually facilitated by a professional social worker or therapist trained in the area, but generally effective even without a professional facilitator, support groups are made up of people with a similar diagnosis who meet regularly. If there are enough people, support groups can be divided into subgroups according to interests or stages of the condition’s progression. There are even support groups for family members or caregivers.
Each group determines its own programs and meeting schedules. Some groups are limited to regular members and some are “drop-in,” permitting people to attend when it works for them. Some bring in outside speakers periodically.
Either the group or the facilitator or both choose a topic or topics for discussion. All members are encouraged to participate in every session, but participation in every discussion is not necessary.
Support groups have no set duration. Many are close-ended, such as for a twelve-week period, while others go on for years and years at the discretion of the members.
Usually, everyone who participates in a support group agrees to keep all matters discussed there, as well as the identity of the other members of the group, confidential.
Section 4. Different Types of Support Groups
Support groups come in three basic varieties: line, telephone, and on-line.
Live groups, as the name states, meet face-to-face.
Telephone groups meet on the telephone. Members do not have to leave their homes or even dress. This can be a great benefit for someone who is too ill to travel or, at the other extreme, for a person who is traveling. For many people it is easier to share their emotions while on the telephone rather than face-to-face.
If you don’t want to talk, but only want to get information, you can just “listen in” on the chat sessions. Last but not least, telephone support groups can be developed and customized individually and for every ailment, no matter how uncommon.
On-line support groups work like a regular support group except that, for the most part, rather than having a live discussion, it is usually set up in a “bulletin board” format. Each time a group member logs on to the group, the member communicates by leaving a message to which other members respond. At any time a group member can reread past messages and take part in the conversation posting a message himself.
It is also possible to have real-time computer conferencing where group members log on at the same time and type messages back and forth to each other. The messages show up as they are typed. Unlike in the bulletin board message system, these conversations aren’t saved for later unless you choose to print them out for yourself from your own computer.
On-line support groups have all the advantages of a telephone group, plus anonymity. You can log on with any name you choose, from any account. A friend of mine who is a celebrity in her field and is usually treated differently because of it is treated the same as all other members of the group because she logs on under a code name.
Another advantage to an on-line group is access twenty-fours hour a day, seven days a week.
Tip. If you are really concerned about your anonymity, in addition to using a code name, consider accessing an on-line support group from a friend’s computer or through one of the anonymous mail-forward servers such as www.anonymizer.com. If you want a particular person to have your contact information, set up an appointment and telephone number with that person to exchange the information.
Section 5. How to Locate a Support Group
Support groups are usually sponsored by GuardianOrgs or by private therapists. Ask people with conditions similar to yours, your physician, therapist, and/or GuardianOrg. If those sources don’t work, contact National Self-Help Clearinghouse, 33 W. Forty-second Street, Room 1227, New York, NY 10036 (212-840-7606). If you are looking for a group on-line, in addition to the sites for the GuardianOrgs, look at www.liszt.com.