Getting Out in the World
Overcome the Stigma
As if epilepsy itself were not enough to deal with, there are also the social and psychological challenges that come with it. In some social situations, including school and the workplace, a lack of information and understanding can make for some awkward moments, which can affect how you feel about yourself.
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Join Now »Even concealing the condition doesn’t make a person with epilepsy immune from awkward social moments: co-workers may be reluctant to have a drink after work or join in a group event the wrong way; fellow students can be quick to judge and slow to understand.
Educate others when you can. For the most part, any remaining negative feeling surrounding epilepsy comes from lack of knowledge, confusion about what epilepsy is, and outdated ideas. The good news is epilepsy is going the way of many other conditions that had biases attached to them a generation or two ago.
Educating yourself about your condition is one key to managing it. Educating others—as gently as possible, where and when appropriate—can also help. Think of it as another way of taking control.
Navigate the Workplace
Do you notify your boss of your condition? Your immediate supervisor? Anyone? And what about privacy? For that matter, when is your medical condition ever anyone’s business?
No single answer fits every situation except for those where safety—your own and that of others—is concerned. If you’re unsure about whether your condition or your treatment regimen will interfere with your being able to meet job requirements, ask your healthcare professional’s advice. Where safety is an issue, disclosure is a must.
Turn your colleagues into allies. If you choose to tell a supervisor, a co-worker, or a human resources representative about your condition, consider using the opportunity to educate her or him with a fact sheet describing how to give first aid in case of seizures. Having some idea of what a seizure is and how to treat it may make the person more comfortable with the situation—and make your life easier.
Know your rights. The Americans with Disabilities Act forbids prospective employers from asking if you have a disability during a job interview. You may decide to offer such information only on a "need-to-know" basis—unless it has a direct bearing on the job.
After a job offer has been made, an employer can ask questions about your medical history—especially where relevant to the position’s core requirements.
Ask your employer to make adjustments if you need them. If you find you need accommodation from your employer because of your condition, you may want to look into your legal rights before you ask. "Reasonable accommodation" may range from scheduling flexible hours to bringing a seizure-detection guide dog with you to work.
Report harassment. Employees with epilepsy sometimes face discrimination in the workplace. If you encounter harassment or discrimination, report it immediately, in writing; if it persists, look at your legal options without delay.
Deal With School and Your Peers
Don’t expect the worst from your peers. Young people with epilepsy deserve respect. And that may be, in fact, just what you get.
Your peers can be a great source of support and, given the opportunity, can help you stay involved with school, sports, activities, friendships, and all the other important things in your life. You may see a few negative reactions at first, or feel excluded, but most people usually come around.
Some may tell jokes as a way of covering their own embarrassment and uneasiness. (That’s an explanation, not an excuse. If you feel someone is out of line, tell the person—and tell her or him why.)
Epilepsy doesn’t rule your life—you do. As life goes on, having epilepsy doesn’t let you off the hook for all the other challenges involved in growing up. It also shouldn’t keep you away from the fun or from getting the education you need.
If you’re having problems concentrating in school because of your condition or your treatment, let your teachers know. If the problems are minor, your teachers can probably help you work around them once they understand what you need and why. If you’re really struggling, look into whether an Individual Education Plan (IEP) may be right for you.
Know why to stay away from street drugs. Everyone tells young people to avoid using street drugs; this is especially important for young people with epilepsy. Not only are street drugs dangerous in their own right, but, because they can interact with antiseizure medications in unpredictable ways, they can cause harm or interfere with your treatment.
Stay in touch with people who know. As always, your peers who have been through what you’re going through have a lot to say. The Epilepsy Foundation has a community Web site for young people.
Make Driving With Epilepsy Safer
Know the rules of the road. Safety—your own and that of others—is your most important consideration. If you’re confident that your condition will not affect your driving, and you can meet the legal requirements in your state, you may be ready to get behind the wheel. If you’re not sure about how well your treatment is working, or have any doubts about the effects of your treatment or whether your seizures are likely to recur, ask your physician.
If it’s legal for you to drive, and you’d like to drive, but you’re not entirely comfortable being on the road—take your time. Try driving with a friend, family member, or co-worker who understands your condition and can take the wheel if you feel uneasy.
State laws vary, but most insist on a seizure-free period of a certain length, a healthcare professional’s evaluation, or medical reports, often in some combination. Differing conditions are treated differently in some states. You can learn about your state’s driving laws and their impact on you at the Epilepsy Foundation’s Web site.