FACT: The social psychological consequences of epilepsy can be more debilitating for some than the seizures themselves.
Studies have found that people with epilepsy rely heavily on family, neighbours and health-care providers and to a lesser extent draw upon friends, work associates and ministers of religion for support. Therefore, people with epilepsy appear to draw their support from sources that do not require them to go far away from home to use. Thus their social support network is primarily restricted to their own home.
A social support network is extremely important, especially for people with epilepsy. People with epilepsy are more likely to experience low social support, and people with low social support are more likely to experience various psychological and physical ailments. For these reasons, people with epilepsy are encouraged to form solid social relationships.
Self-help/Support Groups
Self-help/support groups consist of people who have come together to share the common experiences and problems unique to their condition. There is an ever increasing number of self-help groups available that deal with a variety of conditions including epilepsy. Group members are empowered to take control of their lives, support others, and develop positive attitudes about themselves and their condition.
Studies have shown that these groups provide a cost-effective complement to professional health care services. They have been shown to decrease the need for hospitalization, increase positive feelings about conditions and illnesses, and enhance skills that enable individuals to enjoy a greater quality of life in their communities.
By connecting with a self-help group, the group member begins to take an active role in his/her own health care, which is often accompanied by a positive change in attitude and behaviour. The new group member may be reassured of the normality of his or her reactions, feel less isolated after hearing how others have coped and are continuing to maintain quality of life. Becoming a member of a self-help group or organization may fill some of the many needs a member might require.
Self-help groups may differ in their structure, model or philosophy, but all share some basic characteristics:
- non-profit with minimal fees or dues
- run by and for group members
- focus on mutual support
- membership is voluntary
- members share a common experience or situation
- equal rights within the group
One of the greatest problems in the area of self-help is maintaining membership. People will attend while they are in crisis, or worried about their epilepsy, but once they have their problem under control, they may not come again.
However, research shows that social support helps healthy people stay well and thus, maintaining membership can help one maintain a positive state of health. In addition to being a place to meet people who share a common bond, self-help/support groups also help members in other ways. Through newsletters and regular contact with other people in similar situations, members receive up-to-date information regarding their disability and treatments that are available. Along with this sharing comes understanding and a sense of belonging. Research confirms that the coming together of people in trouble serves to increase self esteem, decrease anxiety and depression, and raise levels of overall well being.
Self-help groups can also help increase public awareness about epilepsy through community education which may help erase the stigma associated with the disorder.
Social Support for Adolescents
Adolescence is a time of tremendous physical, emotional and social change. The impact of a diagnosis of epilepsy on a teenager during this critical time can present additional stress on the already existing strain of adolescent maturation. The developmental tasks of independence and identity formation become much more complex as adolescent and family attempt to cope with an unpredictable disorder like epilepsy.
Support groups for adolescents are one aspect of the total care which can be given to an adolescent who has epilepsy. A group of peers can assist the teenager in gaining emotional controls, accepting the physical changes of growing up and developing social maturity and intellectual sophistication. Social support systems such as self-help and support networks can buffer the effects of stigma, discrimination, and the sense of lack of control sometimes associated with the condition.
Peer alliance and a subsequent decreased reliance on parents and family begin even before early adolescence. The association with peers allows for increasing autonomy. Because epilepsy may alter “normal” adolescent behaviours such as dating and driving, a support group can offer an opportunity to form relationships. This is where sharing feelings can take place and the adolescent can become comfortable relating to others. The support group also offers a “safe place” to discuss disclosure issues: some adolescents may want to conceal their epilepsy from their classmates or friends. Fellow group members may often offer helpful advice and encouragement to one another about how to handle situations involving disclosure of their epilepsy. The advice and skills developed in the group setting can then be taken outside the group and used in everyday situations.
Support group meetings for adolescents should incorporate fun, fellowship, discussion and education. Adolescents need to socialize and have a good time. For continuity and friendship formation, the group needs to meet on a regular basis.
For more information on how to join a self-help/support group for people with epilepsy, contact your local epilepsy chapter.
