Support groups are an important part of the healing process for people who must cope with serious medical conditions, loss, or abuse. They exist for virtually every type of affliction, from Alzheimer's disease to alcoholism, from compulsive gambling to grief. There are thousands of these groups across the United States, and the number is rising, as people meet not only in person but also through the telephone and the Internet. Whether through face-to-face communication at a local hospital or anonymous discussion over the Internet, members are comforted and encouraged by people who face similar situations to their own. Sharing insights and experiences in a safe environment, participants socialize and grow stronger.
Support groups give people with epilepsy a chance to meet each other and discuss personal and social issues that doctors and family members may find it hard to understand. Separate groups serve the needs of adults, parents, women, and children. In recent years support groups that cater specifically to teens with epilepsy have emerged, started by hospitals, religious groups, and affiliates of the Epilepsy Foundation. The number of support groups for teens with epilepsy is growing, but it is still small when compared to the many for adults with epilepsy and parents of children with epilepsy.
Support groups for teens with epilepsy vary greatly in the people they attract, the activities they sponsor, and the goals they create. Most groups contain between 3 and 12 members—not a big, intimidating crowd, but enough that members can form friendships and have lively discussions. Often, some of the members constitute the "core group" who joined when they were quite young and have matured and learned together with their friends in the group. New members, many of whom are newly diagnosed with epilepsy, are always welcome, however, and are quickly accepted.
Usually members are between 13 and 18 years old, but each group is unique in the ages of its participants. Dr. Thomas Burns, a neuropsychologist who runs a teen support group in Atlanta, Georgia, explains that "the developmental age, not the chronological age, determines the make-up of the group." Nearly all teen support groups operate on this principle and include members of different ages (both chronologically and developmentally).
Group leaders, often known as facilitators, are usually social workers or health care professionals with training in psychology. Because of their training, they are very knowledgeable about epilepsy. They also have vast experience with issues that are most important to teens, such as dating, driving, friends, school, and parental involvement, so they are excellent at helping discussions along.
The programs in teen groups often consist of both recreational activities and educational programs. Through activities, group members "practice socialization skills and improve interpersonal relations," says Scott Bauer, who for the last 4 years has run a support group in Miami, Florida, for boys who have epilepsy. Members forge friendships with people who have experienced the same problems that they have. Bauer emphasizes the importance of social skills by leading activities in public places. At movie theaters and restaurants, for instance, boys in this group practice manners. In the group led by Janice Huckaby in Dallas, Texas, members practice interpersonal social skills through role-playing activities.
There's also a support group in Miami for girls with epilepsy. Members sail, ice-skate, and see movies together. Donna West, who has run this group for the past 10 years, uses these activities as a means for members to socialize. Occasionally, her group meets with Bauer's to form new friendships with members of the opposite sex. For the members of these groups (and for all teens, for that matter) these activities are fun. For teens with epilepsy, however, each of these activities also serves a higher purpose: to create lasting friendships, improve interpersonal relationships, and practice life skills. Activities such as bowling, go-carting, golfing, and playing pool also help members to improve motor skills.
Recreation in these groups is supplemented with discussion and information. Epilepsy and its indirect effects devastate many, and virtually all group facilitators acknowledge the importance of learning and communicating about the disorder. Although epilepsy affects every member, facilitators say that few teens understand the physical causes of epilepsy and its many treatments. To educate members about these topics, leaders often lecture or bring speakers to discuss topics.
Burns' colleagues teach members of his group about surgical procedures, EEGs, and seizure medicines. For many, it is a great relief to be able to explain seizures and epilepsy to friends and classmates. And when members begin to understand why they have epilepsy and how it can be controlled, they are better able to accept it.
Important social issues often spark lively conversations. Sexuality, getting along with other kids, and employment are topics that often preoccupy teens who are limited by epilepsy. Parental over-involvement also is a popular subject. Says Huckaby, "The protectiveness of parents often harms more than it helps." Members of her group often discuss dating, driving, employment, and schoolmates. "Initiating, developing, and maintaining friendships," Burns points out, "are important issues facing teens with epilepsy today." Although these topics are sometimes hard to approach, the comfortable environment of a support group helps many teens with epilepsy to confide for the first time in people who understand and have experienced the same problems.
Independence and freedom are important to all people, but teens with epilepsy often feel a special yearning. Feeling limited by seizures and medicines, it is understandable that they would seek relationships and jobs that are unaffected by epilepsy. The friendships, open discussions, knowledge, self-awareness, and confidence that come with membership in a support group are often the first step toward this sense of independence.
Topic Editor: Gregory L. Holmes, M.D.
Last Reviewed: 2/23/04
This content is user-generated. Content is not monitored nor consistently reviewed by the epilepsy.com Editorial Board. Epilepsy.com therefore cannot guarantee the accuracy of any content edited with the Wiki sections. While epilepsy.com, the Epilepsy Therapy Project, and its partners encourage visitor interaction and publishing within these sections, users should use caution when exploring content, especially as it pertains to health concerns. No content on epilepsy.com is intended to replace the care of a doctor. We encourage you to contact your own health care provider for individual medical advice. We cannot provide second opinions or make specific recommendations regarding therapy, nor does this Wiki content constitute a recommendation for any diagnosis or treatment options.
Many kids with epilepsy worry that their partner will want to break up with them because of their epilepsy; but if you have a positive attitude when you explain it to the other person, they may be less likely to be frightened off.