Your Life With Epilepsy
Living well is a realistic goal for the vast majority of people with epilepsy. But life with epilepsy isn't without some bumps. 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.
Finding a Community
Being diagnosed with epilepsy can be upsetting and make you feel isolated and alone. You're not alone! Chances are there is a community of people in your area going through the same challenges that you are. There may be support groups. Ask your doctor or other health care professionals. Look for a local affiliate of the Epilepsy Foundation. Check with the nearest epilepsy center. Talk to other people with epilepsy. Go on the Internet. People can help you and you can help others, too!
Epilepsy can put a strain on families. Everyone is in it together. So 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. Talk to the doctor, and explain the situation to the teacher to see if adjustments can be made so that every student gets the most out of school.
Having seizures may make it more difficult to find a job or to work at certain occupations. Sometimes transportation problems make it challenging to get to work. Others may need vocational counseling or training.
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 specializes in this area. In many large cities, this legal help may be quite affordable.
Before applying for a job, it might be helpful for a person with epilepsy to speak with a representative of the local affiliate of the Epilepsy Foundation (EF) about the relevant laws and restrictions preventing employers from asking questions about a job applicant's health. It may also be helpful for an applicant to consult with 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 the surroundings safer to prevent injury if a seizure occurs. Teach others what to do if they see a person having a seizure.
Guidelines for Preventing Injuries
|For All Patients||For Patients at Higher Risk|
|Treat epileps aggresively||Avoid unsupervised bathing|
|Minimize medication side effects||Minimize burn risks|
|Never swim alone||Wear helmets (for selected patients)|
|Exercise regularly to maintain bone mass||Avoid high places|