Is it Epilepsy or a Seizure Disorder?
The most appropriate answer to this question is typically "both". 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, as they both apply.
When seizures are unprovoked and recurrent, the seizure disorder is generally called epilepsy. Isolated, non-recurrent 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. In many cases, 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 “epilepsy” is innocent in its intent. But, will it be effective in the long run? For one thing, avoiding the term epilepsy seems to concede to the discriminatory perception that it is something that needs 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 and 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 or 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. After all, it is much easier to change a culture's choice of words than its prejudices.
Education is the key to understanding and acceptance. This is an ongoing process and, admittedly, often a 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. People with epilepsy 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.