Don't let myths and misconceptions rule your life!

A diagnosis of epilepsy raises so many questions: Will I ever be able to drive a car? What about a good job? Can I have children? All these uncertainties may cause you more worry than the seizures themselves. Like cancer and leprosy, epilepsy has been feared and stigmatized throughout history, and you have probably heard many stories about it. The fear and shame associated with epilepsy have faded over the past century, but they have not vanished. They will not disappear entirely until many more people are informed about the facts concerning epilepsy.

A national survey done in the mid 1990s found that most Americans thought that people with epilepsy should always be restricted from driving, operating heavy machinery, drinking alcohol, and participating in sports. But the truth is that 75% of individuals with epilepsy are seizure-free on medication. They basically can do anything as long as they take their seizure medicines religiously and remain free of seizures. At first, you may need to restrict your activities a bit until you and your doctor are sure that the medication is keeping you free of seizures, but when that happens, your restrictions should be lifted!

Nearly every day I hear people with epilepsy and their family members repeating myths and misconceptions about epilepsy. The most common statement I hear is "I have seizures, not epilepsy." In the minds of the people who say this, the word "epilepsy" creates a picture of a person who is mentally retarded or brain-damaged. If that's what "epilepsy" suggests to you, you need to gather more information and support so you can feel more comfortable with your diagnosis. After all, "epilepsy" really means only that a person has had two or more seizures. Most people with epilepsy live perfectly normal lives.

I once met a woman whose son (in his 30s) had had epilepsy since early childhood. She asked me, "Is epilepsy contagious?" She was worried that her newborn grandson could "catch the disease" if he visited their home. It was amazing to me that a woman whose son had epilepsy for over 30 years would ask that question. The answer is definitely "No" and doctors have known that since the early 19th century. But the myth still has not died out.

Just a few years ago a young woman with epilepsy informed me that she had been sterilized as a teenager because her doctor and her parents felt that she should not have children because of her epilepsy. Laws permitting sterilization of people with epilepsy were common in the first half of the 20th century. Other laws prohibited them from marrying or attending regular schools. These laws were repealed decades ago, but the ideas behind them have not died out and unfortunately they may affect your life! It is important for you to seek up-to-date medical care. Be an informed consumer. The fact is that more than 90% of babies born to women with epilepsy are normal, so if you are interested in having a baby, talk to your doctor about how to plan for a successful pregnancy. Educate the family members and friends who question your plans.

You also may face misconceptions about epilepsy in your employment. Many bosses think that people with epilepsy will be problem employees, with high absenteeism and on-the-job accidents. These ideas are not supported by statistics, but these attitudes and the fear and stigma related to epilepsy may affect your employment opportunities. The Americans with Disabilities Act was created to protect you from this type of discrimination. Some people with well-controlled seizures decide not to tell current or potential employers about their epilepsy. Sometimes this is the best approach. But wouldn't it be great to be open about your epilepsy and use it as an opportunity to educate and increase awareness? When your employer sees what a great employee you are, it will be much easier for the next person with epilepsy. Misconceptions will only die off with greater awareness.

Don't let the myths and misconceptions that surround epilepsy cause you concern and anxiety. If you get information from any source—even your doctor—that makes you uncomfortable, get another opinion. Use the information you gather to educate your family and friends. Teach them that most people with epilepsy live normal, happy, and full lives. As more people are informed about the facts on epilepsy, the myths and misconceptions will weaken and die.

Submitted: 09/16/03