Living With Epilepsy

One of the biggest concerns for people with epilepsy and their families is how it affects day to day life. Do they need to restrict their activity and if so, how? Other concerns may arise such as how seizures may affect family life, other relationships, school, work or recreation.

Coping with epilepsy is different for everyone. People with well-controlled seizures may have different issues or concerns than people with poorly controlled seizures. Also, having a lot of seizures and taking seizure medications may affect how people think, feel and their ability to cope with the effects of their epilepsy. Experiences and concerns will also be different if you are a young person, parent, adult with seizures or senior. Gender also plays a role in how we view epilepsy, how we cope, and what issues we may face.

While there is no ‘magic bullet’ on how to live with epilepsy, consider these questions. They’ll help you think about your needs and where to start.

How does epilepsy affect you and your family?

Do you know your rights and responsibilities to manage your health?

Do you know your rights and responsibilities in preventing or coping with possible discrimination?

Do you know how to balance the need to stay safe and live life the way you want?

Do you need information on safety tips and resources?

Do you know how to find supports and resources you may need?

Do you talk about living with epilepsy? If not, would it help to hear others talk about it? How about talking with others, right here on epilepsy.com, at talkaboutit.org, or in person with people at your Epilepsy Foundation affiliate?

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

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

Most people with epilepsy can participate fully in school. At times, seizures or side effects of seizure medicines may interfere with schoolwork. Some children and adults may be at risk for learning difficulties from the way seizures affect the brain or from other neurological problems. Seizure medicines may make students feel tired, have difficulty paying attention, or forget things more frequently. It may be hard to stay focused during the school day or get homework done at night. Or maybe having seizures at night are causing problems for you at school during the day. You may find that you are falling behind.

If problems at school happen, don’t wait.

Talk to the doctor and tell him or her how you (or your child) feel and what trouble you or your child may be having.

Tell the teachers what is going on. Ask for help, such as extra time, tutoring, whatever it takes.

If problems keep up and simple changes don’t help, ask the doctor for a referral to an epilepsy specialist. Improving seizure control or changing medicines to lessen side effects may help the school problems. Detailed testing may find diagnose learning problems so you can get the right kind of help.

Talk to the school counselor and see if other help can be set up.

Know your rights! Every student should get the help they need to get the most out of school.

Involve the school nurse- make sure she or he knows what to do if a seizure occurs in school. They can also help the teachers understand seizures and the way they affect you.

And don’t forget that social life in school is important. If you, or your child, are having problems making friends, getting along with others or feeling bullied, tell someone! Don’t let epilepsy stand in your way!

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.

If you know someone with this condition make sure they know they have friends, ask if they need help, or just to talk, as with all disabilities knowing your not alone or isolated is half the battle.