November is National Epilepsy Awareness Month

          Lupus. Cancer. Multiple Sclerosis. Heart disease. Hyperglycemia. Hypoglycemia. Diabetes. Migraine Headaches. We talk openly about these conditions (and many others) and their symptoms and we should. And yet when it comes to epilepsy, this is different. How easy is it to use the words "epilepsy" and seizures"? But this condition affects millions of people and many families. And yet there is a definite stigma attached to it, so that many people with epilepsy will not disclose their condition when applying for higher education or jobs or when entering relationships especially with the opposite sex. The stigma actually goes back to the days of the Bible when the concept of neurological conditions like epilepsy did not exist; seizures were considered demon possession (yes, I do believe in actual demon possession with signs that mimick seizures but that is a separate topic). Though we know better now, the stigma still exists; institututionalized and social stigma continue. This is because when people experience seizures, especially the grand mal kind, their bodies are out of control, their minds in states of altered consciousness.
          Yes, many seizures are not due to epilepsy. Take febrile seizures, for example, where children especially, experience these because their immature systems can't handle the infections that their bodies use fevers to fight. My daughter experienced these until the age of six which is said to be the normal age for outgrowing these sort of seizures.
           Epilepsy exists on a spectrum, from those whose seizures occur daily to those whose seizures occur a few times a month or a year to those with full control. And seizures also are on a spectrum, from minor seizures to complex-partial or temporal lobe seizure to grand mal seizures. Epilepsy can be acquired at any age and can happen to anyone, especially if experiencing traumatic brain injury or an automobile accident or another such misfortune. There are a number of treatments to manage epilepsy especially medications.
           As a child, I was diagnosed with epilepsy. The seizures I experienced, over the years, have been sporadic for the most part. They are the grand mal kind. Thank God, I have been seizure-free for about 15 or 16 years. However, I have paid a high price to remain seizure-free. And I know many others with seizues have testified to suffering side effects. In my case, it was my long-term use of anti-convulsants that, in my opinion, caused me to deal with losses of both long term and especially short-term memory. I also have experienced slowed mental processing and reaction time. Because of these things I was strongly discouraged from getting a Driver's License. These kind of side effects have been more disabling to me than the seizure themselves, traumatic as they have been at the time. In the case of others, many also testify to experiencing side effects from cognitive losses to hair falling out to swollen gums. There are other side effects which I won't go into for the sake of space and length.
          As for social stigma, this like the side effects of medication, has affected me more than than seizures themselves. Once, I applied for a volunteer position for a local pregnancy resource center for those dealing with crisis pregnancies. Sometime after my interview with the Director, I disclosed to her "And there is another thing; I have epilepsy." "I'm glad you told me that," she said. What? All I know was that a month or so later, I was dismissed as a volunteer. I noticed that when I was told about this, a small tape recorder was used without my consent. "We do not feel you are a good fit for working here and because of your living circumstances," was all I was told. Yet I wonder if my self-disclosure of epilepsy had anything to do with it.
           Another example of stigma is when I returned to college as an adult; in the course of time I took a class in German. One day, in that class, I experienced a seizure, one of three I experienced that day. Afterward, I was encourages to drop this class. And, for the remainder of the class, I noticed that the manner of my classmates changes toward me (I never felt liked by that class instructor in the first place but this is beside the point) changes and they would ignore me forever thereafter. My neurologist, whom I like very much, has told me once, "I tell all my patients who have seizures not to have children."
          Chances are, if you don't know anyone with epilepsy, it may be that, because of its stigma, they have not disclosed it to you.  This month, therefore, has been designated National Epilepsy Awareness Month with the focus to undo its stigma through education and awareness. There are some excellent links below where you can learn much more, because epilepsy, like cancer or heart disease, can happen to any of us or a loved one.

http://epilepsyfoundation.org/ This is the National Epilepsy Foundation website.

http://talkaboutit.org.ning.com/ This is the blogspot for The Talk About It Foundation, for epilepsy awareness.

https://www.facebook.com/#!/pages/talkaboutitfoundation/  This is the Facebook page for the Talk About It Foundation, for epilepsy awareness.