Communicating About Epilepsy

Modern treatment enables many people with epilepsy (seizure disorder) to lead normal lives. But age-old fears and prejudice continue to cause social problems that too often severely limit their participation and personal ful-fillment.

So many misconceptions surround epilepsy that communicators may inadvertently add to the negative image of the disorder merely by choice of language. The following list of concerns is an effort to call attention to in-grained usage of terms that in some manner, even today, communicate a negative image of epilepsy.

Disease

Many people with epilepsy prefer the term "disorder," since the condition is not a "disease" in the usual sense of the term. It is a disorder characterized by a recurring disturbance in the electrical activity of the brain. To the general public, the term "disease" has connotations of being unsightly, progressive and conta-gious. Epilepsy or seizure disorder(s) are equally acceptable terms that may be used interchangeably.

Epileptic

Like all individuals with a disability, persons with epilepsy dislike labels, such as in "He’s an epileptic." These feelings can be summed up by the statement, "epilepsy is what I have, not what I am." The preferred terminology is "person with epilepsy" or "child with epilepsy" rather than "epileptic" (cumbersome for headlines, but rarely necessary -– see Stereotyping below). Use of "epileptic" as an adjective, as in "epileptic seizures" is appropriate.

Fit

Although the term "fit" is in the dictionary and commonly used by the medical profession in the English-speaking world outside of the United States, most individuals with epilepsy in this country are particularly sensitive to the description of seizures as "fits." The feeling is that this word connotes mental derangement or loss of emotional control. Some associate the word with the symptoms of rabies in animals. "Seizures" or, in some cases, "convulsions" is preferred. "Convulsion" is a narrower term that more aptly describes a single type of seizure involving muscle contractions of the entire body. Not all epileptic seizures are convulsions. Some seizures may amount to only a momentary stare.

Control

Seizures are controlled with medication, persons with epilepsy are not. "Controlled epileptic" is particularly to be avoided as it often gives the impression that the person needs to be restrained from willful, ag-gressive behavior. The adjective "violent" as a description of a seizure is also unfortunate because the term implies a threat to others and a force out of control. Actually, there is no danger to anyone from the seizure.

Stereotyping

In the past, stereotyping has created unfounded associations between epilepsy and crime or violence, and between epilepsy and mental incompetence. "Epileptic Charged in Murder" makes as much sense as "Diabetic Charged in Murder," yet this type of headline is not uncommon.

Persistent Myth

Perhaps the most persistent myth is that a person having a seizure can swallow his tongue. It is not physically possible to swallow your tongue. The tongue, if relaxed, could possibly block the breathing passage. The way to avoid this is to turn the person on her side so the tongue falls away to the side of the mouth.

Lifesaving Acts

Sometimes news of dramatic "lifesaving" acts on the part of passers-by merely perpetuate the myths surrounding epilepsy first aid. Stories about people who save a life by keeping the person with epi-lepsy from swallowing his tongue are not only inaccurate, but also damaging. They produce a whole new set of misinformed people. Similarly, mouth-to-mouth resuscitation is hardly ever needed in connection with a seizure. Breathing is naturally depressed until the seizure ends, when it usually begins again without assistance.

Lesser Seizures

All seizures are serious. Absence seizures (formerly 'petit mal') are not "lesser" seizures compared to generalized tonic-clonic seizures (formerly 'grand mal'), although tonic-clonic seizures or convulsions are more dramatic and expose the person to serious injury. A child who has 10 to 15 absence seizures an hour, for example, may have a severe functional disability compared to someone who has two or three convul-sions a year. The parents of such a child will rightfully take exception when the child’s absence seizures are termed a lesser form of epilepsy.

Information Sources -– The local Epilepsy Foundation or the Foundation’s national office can provide information and answers to questions. For the national office call (301) 459-3700, visit www.epilepsyfoundation.org, or write: Office of Public Relations, Epilepsy Foundation, 8301 Professional Place, Landover, MD 20785.