There are so many misconceptions surrounding epilepsy that it’s easy to accidentally add to the negative image of the disorder merely by making the wrong word choice. We’re here to help with that! When talking about epilepsy, here’s a list of words we try to avoid using:
Like all individuals living with disabilities, people with epilepsy often prefer not to be labeled or defined by their diagnosis, such as “S/He’s an epileptic.” The reasoning can be summed up by the statement, “epilepsy is what I have, not what I am.” The preferred terminology is “person living with epilepsy” or “child living with epilepsy.” Use of epileptic as an adjective in other situations, such as “an epileptic seizures,” is appropriate.
Although the term “fit” is commonly used by medical professionals outside of the U.S., most individuals with epilepsy in the U.S. 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 more specific term that more aptly describes a single type of seizure involving muscle contractions throughout the entire body. Not all epileptic seizures are convulsions.
We use the word “controlled” a lot in our community, but as it relates to whether or not an individual’s seizures are controlled or not. Seizures are controlled with medication and treatment, persons with epilepsy are not. “Controlled epileptic” in particular should always be avoided as it gives the impression that the person needs to be restrained from willful, aggressive behavior.