Living with epilepsy: stigma, school, work and driving rules

Epilepsy is a brain condition. It cannot spread from person to person like a cold or flu.

Nobody can swallow their tongue during a seizure. Forcing something into someone’s mouth can chip teeth, cut gums or even break a jaw.

Seizures often look different from what people see on TV. A person may seem confused, stare into space, wander or be unable to answer questions.

People with epilepsy can handle careers with responsibility and stress. They work in business, government, the arts and many other fields.

Seizures start for the first time in people over 65 almost as often as in children, often after another health problem like a stroke.

• Asking for changes at work or school
• Feeling closer to people you trust
• Having someone nearby who knows seizure first aid
• Not having to hide or make excuses

• A new job or relationship that feels uncertain
• Past bad reactions
• Seizures that are well controlled or only happen at night
• Simply wanting privacy

At work, you generally do not have to tell your employer. You may need to share some information if you ask for an accommodation.

• “I can’t drive right now because of my seizures, so I might need a lift now and then.”
• “I have epilepsy. It’s well managed, but if I ever have a seizure, here’s what to do.”
• “Sometimes I zone out for a few seconds. If that happens, just stay with me.”

A seizure action plan gives school staff first aid steps, contacts for parents and health care providers, and other key details. It helps families and schools work together.

Some students need extra time for schoolwork or need instructions repeated. Some need a special education plan.

CDC asks schools to teach staff and students about epilepsy stigma, to watch for bullying of students with epilepsy, and to train staff in seizure first aid.

Colleges usually have a disability or accessibility office. Contacting them early lets you set up support before exams and deadlines pile up.

Before a job offer, employers generally cannot ask whether you have epilepsy or about your treatment. They can ask about job requirements, like whether you have a driver’s license.

• A consistent start time or other schedule changes
• A private place to rest after a seizure
• Breaks or leave for treatment
• Checklists to help with memory
• Matting to reduce injury from falls
• Working from home

Employers must provide accommodations unless they would cause significant difficulty or expense.

An employer can exclude someone for safety reasons only if there is a significant risk of substantial harm that accommodations can’t reduce. This must be based on objective evidence about you, not guesses.

A few jobs have their own federal rules. For example, U.S. rules limit people with epilepsy from driving trucks across state lines, with a narrow exemption program.

Employers generally must keep medical information confidential. Supervisors may be told about accommodations, and first aid staff may be told what to do if you have a seizure.

JAN gives free, confidential advice about job accommodations and the ADA. Call (800) 526-7234 or visit askjan.org.

You can file a charge with the Equal Employment Opportunity Commission (EEOC), usually within 180 days, or 300 days in some places. Call 1-800-669-4000. Mediation is free and voluntary.

The most common requirements are a seizure-free period and a doctor’s evaluation of your ability to drive safely. Some states also ask for regular medical reports.

In unclear cases, a state medical advisory board may review the decision and hear appeals.

Some states allow exceptions, for example if seizures only happen during sleep. Others offer restricted licenses, such as daytime-only driving.

California, Delaware, Nevada, New Jersey, Oregon and Pennsylvania have laws that require doctors to report certain conditions that may make driving unsafe to the motor vehicles department.

Rules for commercial driver’s licenses are much stricter. Check with your state and the Federal Motor Carrier Safety Administration.

Not being able to drive can feel like losing freedom, privacy and part of being an adult. Those feelings are normal and worth talking about.

Depending on funding, the Epilepsy Foundation offers a ride-share voucher program for people who can’t drive, and help with travel costs for specialist care far from home. Ask the helpline at 1-800-332-1000.

Many transit systems offer reduced fares or door-to-door services for people with disabilities. Ask your local transit agency what you qualify for.

Working from home and transport to work events are among the accommodations the EEOC lists for people with epilepsy.

List a few people you can ask for lifts and what each can help with. Asking several people a little feels easier than asking one person a lot.

Take extra care around water, including swimming and bathing. Swim with someone who knows seizure first aid.

Regular exercise may improve seizure control for some people, and the benefits of sport may outweigh the risks. Talk with your doctor first, and avoid getting dehydrated, overexerted or low on blood sugar.

Flashing lights or moving patterns can trigger seizures in some people. Knowing your own triggers helps you plan.

Sudden unexpected death in epilepsy (SUDEP) is rare but real. Each year it affects about 1 in 1,000 people with epilepsy, and the risk is highest with uncontrolled tonic-clonic seizures.

The best way to lower the risk is the best possible seizure control. It’s okay to ask your clinical provider about it. Knowing helps you plan, not panic.

Run by the Epilepsy Foundation, for anyone affected by epilepsy. Information, emotional support, and local resources. Check epilepsy.com/helpline for current hours.

Free, confidential advice about work accommodations and the ADA.

For questions about job discrimination. TTY 1-800-669-6820. ASL video phone 1-844-234-5122.

Free, confidential support any time you are struggling emotionally.

Driving and work rules are set by each country. Your national epilepsy association and licensing agency are good places to check. findahelpline.com lists free emotional support lines worldwide.