The Unseen Side of Epilepsy
Sept. 6, 2000 -- Call it the hidden side of epilepsy -- the complications beyond seizures, such as getting a driver's license or a job, forming relationships, and participating in sports. A recent Italian study detailed how adult epileptics were faring in society and found that, in general, they face more than their fair share of hurdles.
Epilepsy affects the brain, causing either parts of the body, or the entire body, to move abnormally. Many people may only have one seizure in their lifetime. There are many different types of seizures; in some cases, there is no noticeable abnormal movement at all. Although there are many medications available for epilepsy, it can sometimes be difficult to control, and that can impact epileptics' lives to varying degrees.
Eric Siegel, LCSW, EACF, is a counselor, and an epilepsy patient himself. For periods of 10 to 30 seconds, usually several times each day, normal lines of communication seem to go down in his brain. "All I can hear is gibberish, including my own thoughts," he says.
Still, Siegel considers himself lucky -- having gained perspective after attending a group support meeting following his diagnosis. "One thing that helped me come to terms with it ... there was a woman who wore a helmet all the time," he says, because she never knew when a seizure might happen. "That gave me some perspective."
In the Italian study, published in the August issue of the journal Epilepsia, researchers compared a group of nonepileptics to epileptics from seven countries -- Italy, Germany, Spain, the Netherlands, England, Portugal, and Russia. Country-to-country variations notwithstanding, they found epileptics more likely to be single and unemployed, and to not have a driver's license or participate in sports. Having the seizures under control generally meant a better chance of having a better job -- as well as a driver's license.
That is no surprise to Chuck Carmen, executive director of the Epilepsy Association of Central Florida. "Every state is different, but in Florida you have to go one year seizure-free under a doctor's care [before you can get a license]." Carmen says the rule sometimes creates a dilemma for epileptics: Because they need to get around, they may debate whether or not to tell their doctor about a recent seizure.
Martha Morrell, MD, chair of the Epilepsy Foundation, says her group recently conducted a survey in which it asked people: "What's the hardest thing about having epilepsy?" The first response was having seizures. The second was difficulty with driving.
Carmen says the driver's license issue is a huge one for epileptics, because it can affect their livelihood: "Epileptics walk on a tightrope. They very definitely do."
Morrell, who is also a professor of neurology at Columbia University in New York and chief of the Columbia Comprehensive Epilepsy Center, agrees, saying that the Epilepsy Foundation survey found a quarter of epileptics unemployed, even though the economy is booming -- and for the vast majority, it had nothing to do with their ability to work. "In most cases, we believe it's because of what the employer is afraid might happen -- not what [actually] has happened," she says.