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Perhaps the appropriate answer to this question is "yes". It is not uncommon to hear someone say, "No, I don't have epilepsy, I have been diagnosed with a seizure disorder". It is true that not all seizure disorders are epilepsy. However, most of the time, these two terms could be used interchangeably. They both apply.When the seizures are unprovoked and recurrent, the seizure disorder is generally called epilepsy. Isolated, nonrecurrent seizures provoked by a specific stimulus such as a high fever, a head injury, alcohol withdrawal, or low blood sugar are not epilepsy. In each case, however, the seizures are the result of a spontaneous and excessive discharge of electro-chemical activity in the brain. Some seizure events are not associated with this abnormal firing of neurons. These are called pseudoseizures.
Epilepsy is a word that is still associated with stigma, misinformation, and fear. The social consequences of epilepsy can cause even more suffering than the seizures themselves. Misunderstanding and fear can and does lead to discrimination. Therefore, a diagnosis of seizure disorder may seem to be less threatening than that of epilepsy. The strategy of avoiding the negatively laden term of epilepsy is innocent in its intent. But, will it in the long run be effective? For one thing, avoiding the term epilepsy seems to concede to the discriminatory perception that it is something to be hidden, that it is shameful. Secondly, it will only be a matter of time before the negative connotations become attached to the new terminology. After all, it's not the word itself that people fear but the meaning they attach to it. Seizures are sudden, this can startle people. The abnormal behaviours in seizures may not be recognized as being part of a seizure. Many people do not understand what a seizure is nor what to do if one occurs. Consequently, a seizure can provoke anxiety and fear. When another person uses either term, epilepsy or seizure disorder, or a word like "epileptic" it is not the word that hurts, but rather the prejudiced or malicious intention behind it. It is much easier to change a culture's choice of words than its prejudices. Consider racism. The fact that we've replaced racial slurs with terms such as "coloured person" or "black person' or "African-Canadian" has not eliminated racism, but merely made it harder to locate and identify. Thus, it would seem that it is of greater importance to bring epilepsy out into the light, not to hide it, but to address it directly by whatever name we choose to call it.
Education is the key to understanding and acceptance. This is an ongoing process and, admittedly, an often difficult struggle. But, unless myths and misinformation are challenged they cannot be changed. The clear message needs to be, "It's okay to have epilepsy". Epilepsy is an invisible condition. Seizures are episodic and many people with epilepsy achieve reliable seizure control with drug therapy. They are successfully pursuing their careers and life goals. These people can also play an important role in normalizing epilepsy. They can be key advocates for others for whom seizure control may be unattainable. This is beginning to happen. Some well-known people have come forward to speak about their own experiences with epilepsy. For example, Danny Glover, the actor, is a spokesman for the Epilepsy Foundation of America and in our own community, Derek Morris, a hockey player in the NHL, has spoken of his past experiences with epilepsy and provided support to the Epilepsy Association of Calgary. The participation of such well-known and successful people will not only help change the public image of "person with epilepsy" but also provide encouragement for others with the condition.
Another consequence in solely using the term seizure disorder may be that some people may not recognize that they, or their child, have epilepsy. This may impact their ability to get information and support, when, and if they need it.
Epilepsy has been called by many different names throughout history. A change of name to the possibly more neutral terminology of seizure disorder is well-intentioned in its hope to discard negative stigma. However, there is a danger as well, that the subtle message in this euphemistic approach is that the condition itself should be hidden. It is acceptance of the person with epilepsy that is the real issue, not acceptance or comfort with a specific term.