WAVLENGTH: Feature Article Summer 1998
WATCH THAT ATTITUDE!
Bruce J. Magee: Editor



Improvements in the way people think about epilepsy have certainly been made. Yet some non-constructive attitudes continue to exist. Who needs the attitude adjustment, anyway? You may be surprised!

If you have epilepsy, read this:

Very few people have jumped up and down for joy when diagnosed with epilepsy. It's not usually cause for a celebration. Frequently, the diagnosis may be cause for relief, as the person subject to "bizarre occurrences" now knows what has been happening. It is a medical situation, and treatment options are available. How to deal with it, however is an individualized issue.

Many people take a deep breath, say to themselves, "So I have epilepsy," and move on with their lives. They resort to reading about epilepsy, talking to a counselor or seeing videos on the subject. Whatever it takes to be more comfortable with the diagnosis and proceed with their careers, marriages, and so forth is a small price to pay.

Yet, some people wear the diagnosis like a shield, identifying every move with the fact that they have epilepsy.

I can't work, because I'm an epileptic.
I can't live alone, because I'm an epileptic.
I'll never get married or have children, because I'm an epileptic.
You can't talk to an epileptic that way.
Epileptics can only understand other epileptics.

Placing one's self in a distinct category is actually a step away from acceptance.

"She uses her diagnosis to try getting out of everything," complained a teacher. "Although her parents agreed she doesn't need special accommodation of any type, (she) complains of having to take tests, participate in physical education, or even completing her homework."

"I had no problem with the fact that he has epilepsy," replied an employer, "But he doesn't do his job, has never requested accommodation, and has a major chip on his shoulder."

"He won't even try to help himself," said one person's wife. "He feels sorry for himself all the time, even after all these years, and thinks he'll fail at whatever he tries."

Sound familiar?

To receive a positive attitude toward epilepsy, it is necessary to project one, as well. Epilepsy is a diagnosis; it is not a personality. It need not be worn like a branding, not should it be expected that everyone else knows exactly what epilepsy is.

"Education is the key," said one woman. "When I was first diagnosed, I read everything about epilepsy that I could, just so I could deal with it on my own level. But I failed to educate everyone else about it in an appropriate manner. I called myself an 'epileptic,' just like we're of our own culture, aside from everyone else." She laughs. "I probably made things worse, in a way, for everyone else with epilepsy. People closest to me probably thought all people with epilepsy are the same way."

"He dared me to say anything," replied a man who interviewed a person with epilepsy for a job. "Less than two minutes in to the interview, he loudly announced he had epilepsy, and the law protects him against discrimination. I felt backed in a corner. Because of his attitude, I wouldn't have hired him even if he hadn't had epilepsy!"

Those with epilepsy--or any other medical condition-cannot and should not expect total acceptance without education, but they also simply should not be contrary or seem to be inviting opposition. If one looks for a fight, he/she will usually find one. The purpose these fights serve, however, usually do nothing to further the aggressor's cause.

Don't expect any easy answers or remedies.

This resistance may stem from myriad variable, such as lack of epilepsy knowledge, lack of support, history of discrimination, inadequate medical care, and so forth. Perceptions that having epilepsy is "unfair", and that something is "owed" to these people can also contribute to this resistance. It can also be secondary, for some people with sour attitudes may just happen to have epilepsy, yet the absence of the disorder may not necessarily mean the person would otherwise be any different. Or nicer.

Important for everyone to remember is that epilepsy is so highly individualized. This point cannot be stressed enough! No two cases of epilepsy are identical-not seizures, life experiences, living situations, perceptions of themselves and the world, and so forth. People with epilepsy cannot be classified in one category, and one category alone, for they and everyone else have identities that are much more important.

Mothers, fathers, sons, daughters, brothers, sisters, aunts, uncles, grandparents, husbands, wives, teachers, students, employees, professionals, in-laws, friends, co-workers... and many, many more.

Notice that "epileptic"isn't a suggested classification. Shouldit be?