I am neither a doctor, nor a researcher. I, like many of you, am simply someone diagnosed with epilepsy with something to say. We all have our own embarrassing experiences living with epilepsy, and I am here to say you are NOT alone and hopefully my article, in which I confess several of my embarrassing epilepsy stories, will help you realize that.
Have you ever had an episode in school?
I was diagnosed with epilepsy when I was fifteen years old, just two years after I transferred to a new school. Before I was diagnosed I remember having “space outs,” while speaking with my friends or in class. I later learned these episodes were actually petit-mal seizures. One afternoon while in chemistry class I raised my hand, remember being called on, and then nothing. I came out of my episode and heard myself stating a completely unrelated point about unicorns. During that instance, it took me three attempts to finally get my question out, but by that point I was so humiliated and bright red, I told my professor (who was making jokes about what I was saying) that I was “sorry and felt sick.” We cannot control the timing of our seizures or what happens when they do occur. All we can do is accept what happens and try our best to take care of ourselves in advance.
Have your friends ever looked at you in bewilderment after witnessing one of your episodes?
I remember watching an episode of “That’s So Raven” before leaving for school one morning. I had never seen the show before, but it was nothing special to me. I probably couldn’t even tell you after I left my apartment what happened in the few minutes I saw. But later that afternoon, I vividly remember talking with my friends in the library and then suddenly coming out of an episode and hearing my last few words. I was singing the “That’s So Raven” theme song in a monotone voice. It was so embarrassing. I remember seeing my two friends staring back at me with horror. People fear the unknown. Most people know very little about epilepsy and don’t know how to react when they witness a seizure. Therefore, it is important that we educate others about epilepsy.
Do your parents sometimes seem to have no comprehension about what you’re going through?
My parents figured I was just a spacy teenager; but I knew something was not right. It wasn’t until I began doing odd things during my “space outs,” such as smacking my lips and saying unrelated points of which I was unaware, that we decided to contact a neurologist. You know yourself best. If you sense that something is wrong, you must insist on getting help immediately.
What about your school?
After I was diagnosed with epilepsy my mom informed our school nurse who responded along the lines of “Don’t worry, my records are confidential.” My mom and I were shocked by her reaction. Recently diagnosed, I was already feeling alone and different and her comments only made me feel more ostracized. This nurse also prescribed me Advil after I told her I had a petit-mal seizure, which is not helpful to me after a seizure. But clearly this nurse, like many others, is not familiar with epilepsy so it is imperative that we, as people most familiar with the disorder, educate others.
Have you ever felt depressed, anxious or lonely because of your disability?
I never knew anyone else living with epilepsy and I remember driving to the hospital for my overnight observation thinking, “What did I do to deserve this?” “I feel so alone.” Now, I have come to realize that 1 in 26 will be diagnosed with epilepsy in their lifetime. Meaning, all the feelings you have or may have felt after being diagnosed – feelings of depression, anxiety and loneliness – may be shared with 1 of 26 people across the world. Although there is much research on epilepsy, people’s lack of open dialogue about the disorder has led to a huge deficiency of knowledge and understanding. As a result, people diagnosed with epilepsy continue to often feel alone, separated and incapable of leading normal lives.
It wasn’t until the end of high school that I felt comfortable talking about my Epilepsy. In that time I attended practically every FACES lecture and The Epilepsy Conferences with my mom to learn more about the disorder and found that slowly I became more accepting of my condition. As I began to open up about my episodes with my friends and family, I discovered that they were always genuinely interested in learning more (I just hadn’t given them an opportunity until now) and so I quickly developed deeper relationships with them all.
FACES has helped me realize that just because I take medication daily does not mean I am strange or different and that I am just as capable of living a healthy, “normal” life. In high school I was a tri-athlete, president and founder of a club, had a great group of friends, took five classes a semester and even held a job my senior year. You can do ANYTHING you set your mind to and it’s important that you prove that to yourself, as well as to others.
We can start to combat the stigma attached to our disorder by educating others unfamiliar with the condition and reassuring those who share our condition that they are not alone. Therefore, my final request is that you be loud. Share your story with FACES , your friends and your loved ones. The worst thing we can do is do nothing.
"Action cures fear."