The Stigma of Epilepsy

Epilepsy is one of the most misunderstood disabilities.  There is a stigma that still exists today due to lack of understanding and ignorance.  There over 3 million people, known to be living with epilepsy in America.  I say known, because many people will not disclose, due to the stigma that is attached to living with epilepsy. Tony and Joyce

Stigma is defined as a mark of disgrace.  For a long, time, all the way back to the ancient history, there has been a stigma attached to epilepsy.  Women have been sterilized, people have been burned at the stake, and many were placed in institutions for the criminally insane.

People with epilepsy have been viewed as mentally insane, degenerate, demonic, or intellectually diminished.  Most of this has changed, other than in third world countries, because the stigma has evolved.  Today, the stigma for people with epilepsy is that you are strange, dangerous, weird, and someone to avoid.  Some think people living with epilepsy are contagious and that we all have a psychiatric disability. 

For this reason, many people with epilepsy do not disclose; they would rather that no one knows.  One of the fears is that someone will see you having a seizure. The seizure is most often, a fear maker.  People freak out when they see someone having a seizure, especially a tonic-clonic seizure, better known as a grand-mal seizure.  Actually, the person who witnesses a seizure can make it worse for the person recovering from the seizure.   

I am living with epilepsy, and I am well aware of the stigma people face.  I served for two years as the chair of the board of the national Epilepsy Foundation, and I saw the stigma many people have tried to escape.

It is absolutely horrible to be shunned or excluded because you are living with epilepsy; many people are every day.  Young people living with epilepsy face bulling.  This bullying is so intense that some of those young people have committed bullycide; suicide as a result of bullying.

I have a great mentor who has really changed my life in many ways.  Tony Coelho, former Congressman and author of the Americans with Disabilities Act is a powerful and successful civil rights leader, politician and businessman living with epilepsy.  I met Tony in 1998, and we have remained friends since that day.  Tony made me realize that epilepsy is part of who I am, and that I should not be ashamed.

It is my dream to help people of all ages eradicate the stigma associated with epilepsy.  We need a new badge of pride.  We should not be ashamed of who we are.  One way to stop this torment that many live with is to talk about it and not keep it a secret.  When you keep epilepsy a secret, it is because you feel ashamed and believe it is the mark of disgrace.  It is not.  

Get involved with the Epilepsy Foundation chapter in your area.  Visit for more information.  When you get involved with other people with epilepsy, it makes such a profound difference.

A seizure is too many neurons firing off in your brain.  I always tell people this fits me, as I have fire-power.  You do not have to live with this stigma-eradicate it.

I am a woman living with epilepsy and I am not ashamed—you should not be ashamed either!

« Back to the Bender Consulting BlogTony Coelho and Joyce BenderTony Coelho and Joyce Bender