Epilepsy and “Real” Awareness

Every November, we celebrate Epilepsy Awareness Month on a national basis. The key to this month is embracing real awareness; not just a poster. Many people in the U.S. do not understand epilepsy and there are many myths people with epilepsy and advocates are working to dispel.

This month is very personal to me, because I am a person living with epilepsy. In 1985, I experienced an almost fatal accident as a result of a misdiagnosis of my epilepsy by my family doctor. I had experienced occasional fainting in my life as a child, but in my 20s it became more frequent. I would faint and become very nauseous and I always knew when it was going to happen – a strange sick feeling in my stomach would precede each episode. My family doctor told me not to worry and said it was some type of hormonal problem and advised me to stop drinking so much coffee. I know this sounds unrealistic to you, but to me, it did not. After all, he was a doctor and he would know – but I was wrong.

One Sunday evening in 1985, I went to see the film, Amadeus, and at the intermission of the movie, the only movie I have ever seen with an intermission, I went to get a soda at the concession stand. What happened next would change the rest of my life, in a good way.  I experienced a hard fall as a result of a seizure.  I hit my head so hard that I fractured my skull and that caused an intracranial brain hemorrhage that resulted in life saving brain surgery. When I awakened in intensive care, I was on anti-epilepsy medication and guess what; the fainting spells stopped. Like others who have been misdiagnosed, I was already living with epilepsy, I just didn’t know it. This happens too frequently. For someone who thinks he or she may have epilepsy, always remember, go to a neurologist or better yet, an epileptologist. An epileptologist is a neurologist who specializes in epilepsy.

Epilepsy Awareness Month is so important to those of us living with epilepsy. It is important for many reasons. As I stated, one is an enormous lack of understanding. When I have spoken at conferences, businesses, colleges and universities, and even on my radio show, Disability Matters with Joyce Bender, I am always surprised and dismayed at the number of people that ask me, “What actually is epilepsy?”

Epilepsy is diagnosed when you have two or more seizures.  Most people think of the “Grand mal” seizure as the only type of seizure, but that is not true.  More people have absence and complex partial seizures than have tonic-clonic seizures. Clonic seizures, known to most people as a grand mal seizure results in a convulsion. Most people have no idea what to do when someone has a seizure. They only know one thing; call 911 or run. What is terrible is the number of people that still believe you should put a stick in a person’s mouth when they are having a seizure and that is the worst thing you can do. Putting something in the person’s mouth can cause injury to the person’s teeth or jaw. If someone is having a seizure, the most important thing is to help them to stay safe by putting a pillow or folded jacket under the person’s head, easing them to the floor so they don’t become injured during a fall, and loosening anything around the neck that may make it hard to breathe. Most people who have epilepsy do not want someone to call for emergency medical attention every time they have a seizure. If you are unsure what to do, time the seizure and call 911 if the seizure lasts longer than 5 minutes.

Sadly, there are still many prevalent myths about people with epilepsy from those who think epilepsy is a psychiatric condition to those who think it is contagious. Globally, the stigma people with epilepsy face is horrific. It ranges from incredible shame to thinking you are cursed or a blight on your family’s name. Absolutely, no one can get a job, and many are in institutions. It is horrible stigma. Over the past several years I have traveled on government sponsored international trips to Panama, South Korea, Indonesia, Japan and Kazakhstan at the request of the country’s Embassy. When the Embassy requests a speaker with expertise in the employment of people with disabilities, I am always so honored to be asked to represent the United States. For each of these trips, I have requested to meet people with epilepsy when visiting these countries and speaking at a venue with them.

Although we do not have stigma at the same level that some of these people face; we still have stigma right here in the U.S. People with epilepsy have one of the highest unemployment rates of all people with disabilities. Most employees at corporations in the U.S. do not disclose they have epilepsy, because they are afraid they may lose their job or be passed over for promotions. The stigma some people deal with is hard. I believe education and training to bring awareness is absolutely necessary.

I hope you will take time to learn more about epilepsy and reach out to epilepsy groups in your area or national groups like the American Association of People with Disabilities. Education and training is the only way to overcome stigma for people living with epilepsy. At Bender Consulting Services, we have a software product, iDisability, that is an e-learning software product that includes modules on how to communicate to and work with people with disabilities and that includes epilepsy.

Posters are not enough.

If you are living with epilepsy, my advice to you is to remember my words, “I am living with epilepsy and I am not ashamed. Epilepsy does not define me; it is just a part of who I am.”

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