What is life with epilepsy going to be like?

Living well is a realistic goal for the vast majority of people with epilepsy. But life with epilepsy isn't without some bumps. Actually, it’s like going on a journey with a lot of peaks and valleys. There are times things will be going well. You’re feeling good and whatever you are doing seems to be working. Life is going along smoothly. Then something happens. Maybe seizures have gotten worse or you’ve come across different problems in your life. The way you dealt with problems in the past might not be working as well now. It may be time to reach out and learn something new. You may need a new way of looking at life with epilepsy, a new way of coping, or a new way of getting help.

This section gives an overview of some problems that can come up for people living with epilepsy and what you need to know to face these challenges.

What kind of community support can help me?

Being diagnosed with epilepsy can be upsetting and make you feel isolated and alone. Or you’re a parent or spouse of a person with epilepsy and you are just hearing about seizures for the first time. You feel like you’re the only one. The good news is - you're not alone! Chances are there is a community of people in your area going through the same challenges that you are.

• Look for a support groups.
• Ask your doctor or other health care professionals for help.
• Look for a local affiliate of the Epilepsy Foundation.
• Check with the nearest epilepsy center. Maybe they have a support group, educational sessions, or can connect you with other families.
• Yet maybe you’re shy or not yet ready to talk in person. You found your way here and now you can talk to people online!

Wherever you are, one of the most important things to help you live with epilepsy is to find a support network - a community of people you can talk to, share the good times and the bad. Get help when you need it and give help when you can do that too.

Talking about it can help in other ways too. Each time someone with epilepsy or a family member shares their story, they are teaching others about epilepsy. One person or one fact at a time.

How does epilepsy affect family life?

Epilepsy can put a strain on families in many ways. Everyone is in it together. Yet they experience it differently. The person who has the seizures will feel one way, but a parent or spouse may feel quite different. Maybe a family member feels helpless as they watch the seizures because they can’t make them stop. Maybe they are angry that this is happening to their loved one and that their lives have changed. They may be scared and try to protect their family member who has the seizures. But the person with the seizures may feel quite different. They may feel overprotected and want some space and independence. They may be afraid that they are a burden to their family and pull away.

• The first step is to realize that people will react differently. When reactions aren’t addressed or talked about, relationships between family members can get strained.
• Each member of the family needs to understand what epilepsy is, how it's treated, and what to expect. (The level of understanding will depend on each person's age and abilities, of course.)
• Families can be a great source of support for someone with epilepsy-but it might take some work. Encourage all members of your family to learn as much as they can. Then you can share with each other your feelings, fears, and hopes.

Epilepsy can put a strain on families in many ways. Everyone is in it together. Yet they experience it differently. The person who has the seizures will feel one way, but a parent or spouse may feel quite different. Maybe a family member feels helpless as they watch the seizures because they can’t make them stop. Maybe they are angry that this is happening to their loved one and that their lives have changed. They may be scared and try to protect their family member who has the seizures. But the person with the seizures may feel quite different. They may feel overprotected and want some space and independence. They may be afraid that they are a burden to their family and pull away.

• The first step is to realize that people will react differently. When reactions aren’t addressed or talked about, relationships between family members can get strained.
• Each member of the family needs to understand what epilepsy is, how it's treated, and what to expect. (The level of understanding will depend on each person's age and abilities, of course.)
• Families can be a great source of support for someone with epilepsy-but it might take some work. Encourage all members of your family to learn as much as they can. Then you can share with each other your feelings, fears, and hopes.

Having seizures may make it more difficult to find a job or do certain types of work. If you can’t drive due to seizures, then getting to work can be a challenge. This is one of the biggest problems for so many people! If your job depends on being able to drive, then suddenly you may not be able to keep that job. Others may need vocational counseling or training to learn new job skills or find a job where the seizures won’t be a problem.

In the United States, the Americans with Disabilities Act makes it illegal to deny someone a job because of a medical condition if they can perform the essential duties of that job. People who feel they are being discriminated against because they have epilepsy should consider seeing a lawyer who understands disability law.

Some Good Advice

• Learn about epilepsy and jobs before you apply for a job or if you start having problems at work.
• Talk to your doctor or nurse if seizures happen at work or are causing problems. You may need your treatment plan revised to get better seizure control. Or look at possible seizure triggers in the workplace or other parts of your life.
• Talk to someone at your local Epilepsy Foundation affiliate (link to find an affiliate) for one-to-one help and to find a vocational counselor. Learn about the laws protecting you in the workplace.
• Find out what and when you should tell your employer about seizures. In some situations you may not need to disclose anything. Yet people with uncontrolled seizures will want someone to know.
• Develop a plan on what people should do if you have a seizure at work.
• Find out if simple accommodations at work may are needed.
• If you are having problems with an employer or others in the work place, talk to the protection and advocacy staff of the state human rights commission, the Equal Opportunities Commission (EEOC), or a social worker who specializes in employment issues.

Being safe is important. Learn how to make your surroundings safer to prevent injury if a seizure occurs. Teach others what to do if they see a person having a seizure.

Strategies for Preventing Injuries