Not every group does the same things. Even groups with similar activities may have different results because of the individuals involved. But in nearly every group, members seem to find PEACE:

Practice in skills and relationships
Encouragement from meeting others who have overcome challenges like your own
Acceptance by a group of people who share your feelings and experiences
Comfort from knowing that you are not alone
Empowerment through increased knowledge and confidence

If you're a person with epilepsy, you may be nervous about socializing. Maybe kids on the playground teased you about having seizures. Maybe you weren't allowed to participate in the same activities as other kids, so you didn't have many chances to make friends or learn to do the things that others do for fun. In an epilepsy support group, you can practice making friends and participate in activities without worrying that you'll be rejected because you have epilepsy.

Parents of children with epilepsy also can practice skills in a support group. They can get comfortable talking about the issues they need to discuss with teachers and doctors. They can even role-play those situations, or practice parenting skills.

It's nice to read stories (like some on this website) about people with epilepsy who have done well—people with good educations, good jobs, happy families. It's even nicer to meet these people in person. But it's also nice to meet people who are still struggling. When they have a success to report, you can cheer them on and know that they will be there to cheer your successes.

It's easy to get the idea from TV and movies that the way to be accepted is to be good-looking, wear the right clothes, do the right things—and not have epilepsy. Meeting other people with epilepsy and finding that you like being around them (most of them, at least) teaches that you too are a person that people want to be with. No matter how many seizures you have, there are plenty of times when you're just you, a person who knows things and can do things—a person who's good to know.

If you're a parent of a child with epilepsy, you also need to feel acceptance. You may feel guilty because you're not patient enough or you don't spend enough time with your child. When you meet other parents with the same challenges, you can learn that it's impossible to be a perfect parent. It's not wrong to have angry feelings or to wish for more time for yourself. It's just human. Parents in a support group can help each other to do better without feeling like a failure because they can't do it all.

Epilepsy can be lonely. If you have epilepsy, you know that even the most loving family members and friends can't really understand your feelings about being injured or embarrassed after a seizure. They can't know how restricted you feel. They don't wonder why they're the only ones who have to take pills every day to keep the world from turning upside down.

If you're the parent of a child with epilepsy, you're probably dealing with problems that your parents never faced. The other parents in the neighborhood aren't facing them either.

A support group heals this kind of loneliness.

In a support group, you might gain knowledge that could help you control your seizures, buy your seizure medicine cheaper, find a job, get more help for your child in school—almost anything, depending on how the group operates and who the other members are. Even if you just learn more about what epilepsy is, that will help you explain it to others. Then they won't be so worried when you're around.

OK, I'm sold. Where can I find a support group?

Unless you're in a remote area, there's probably a support group nearby. In the United States, a good place to start looking is your local Epilepsy Foundation affiliate. Support groups also may be organized by hospitals or epilepsy centers. Your neurologist or epileptologist may have information. Sometimes groups are listed in the newspaper too.

If you're a parent and can't find an epilepsy group in your area, you may get some benefit from joining a group for parents of children with other chronic disorders. Some of the problems that you're facing, such as dealing with schools and the health care system or disciplining your child, are the same. The day-to-day problems of parents whose children have another disorder are different, but you do have much in common:

• You all share a concern for your child's future.
• You all want to keep your child safe but need to watch out for overprotectiveness.
• You all need to work on emphasizing your child's abilities instead of weaknesses.

If you've explored all the possibilities and haven't found a suitable group, maybe you should start one! Talk to your doctor or someone at the Epilepsy Foundation. You may be able to get the name of a professional, perhaps a social worker or psychologist, who has experience in running groups. It's usually a good idea to have a person like this as the facilitator, to keep things running smoothly. Make sure that this person is willing to make a commitment to the group. A facilitator is especially important if the group is for teens or children. Adults with epilepsy or parents may be able to carry on without a professional facilitator, but someone will need to take the lead.

Not every new group is a success, of course, especially right away. You can't control how much support you get from others. But even if your group has to struggle, you can feel good about making the effort!

If it's impossible for you to find or start a suitable support group, participating in online discussions (like the Community Forum at epilepsy.com) will provide some (but not all) of the benefits of a face-to-face support group. And it's a way to keep the community feeling going between group meetings!

Topic Editor: Steven C. Schachter, M.D.
Last Reviewed:12/15/06

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