Epilepsy Talk

The Stigma of Epilepsy…  | October 15, 2024

Look at the tradition of epilepsy. It’s the history of stigma. Discrimination. Hostility.

You’re “damaged goods”.

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 degenerate, demonic, or intellectually diminished.

They’ve even be treated as if it’s their fault morally that they have seizures!

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 it. (You might say, they’re in the closet.) They would rather that no one knows their “secret curse”.

One of the fears is that someone will see you having a seizure. The seizure is most often, frightening.

And the social consequences of epilepsy are often the cause of more suffering than the seizures themselves.

Contemporary western culture has glorified the image of the controlled and independent adult.

The unpredictability of having a seizure, as well as the obvious loss of control during seizures, doesn’t exactly fit this image.

By “failing” to meet these standards, a person’s sense of self-worth is affected.

If you’re disabled, you may as well be toxic. Everyone wants to keep a distance.

And then comes the dreaded moment — a Grand Mal or Tonic-Clonic seizure strikes.

All hell breaks loose. People don’t know what to do. Or they don’t do anything, because they’re scared.

Indifferent. Or excited in some perverse way. “Hey, look at him” — like you’re some sort of side-show freak.

The damage is done. In all ways. Actually, the person who witnesses a seizure can make it worse for the person recovering from the seizure itself.  

“There is an ongoing, significant embarrassment level about it,” said Dr. Orrin Devinsky, director of the Epilepsy Center at New York University.

“The feeling, for a lot of people, is that it does carry a lot worse stigma than a cancer, or an H.I.V. even.

At some level, it’s society that needs to wake up and realize it’s just another neurologic disorder.”

“It’s better today,” he said about public perceptions of the disorder. “But even among well-educated people, people don’t like to talk about epilepsy.”

Patricia Gibson, MSSW, ACSW, Associate Professor, Wake Forest University School of Medicine, Winston-Salem, North Carolina, who has been the Director of the Epilepsy Information Service since 1979, looks at it like this:

“Stigma basically just reflects ignorance of the disorder. Stigma continues to be alive and well, I am sorry to report, and it is my opinion that as long as we have human beings, there will probably be stigma.

“I have to say that from my observations, stigma is much reduced in comparison to when I first started working in the field of epilepsy in 1976. I seldom hear stories that can begin to compare with those of years ago.

“However, recently I got a call from an upset mother whose son was not allowed to go to the school prom because ‘he might have a seizure there,’ and from the distraught mother of a 4-year-old who had been expelled from her church-sponsored daycare because ‘we are not equipped to handle epilepsy,’ even though the girl had yet to have a seizure in class!

“These are the kinds of situations we try and correct by providing information and training programs with educational materials.

“My program doesn’t just teach about seizures, or first-aid, but also the importance of emotionally supporting and caring for others.”

The alarming nature of epilepsy and its symptoms urgently calls for attention.

As Pulitzer prize-winning author Jon Meacham states, “Most people with epilepsy are not in a constant state of seizure — they are, rather, in perpetual but quiet danger.”

The battle will truly be won not only when societies all over the world acknowledge and understand the challenges posed by epilepsy, it’s when those with epilepsy no longer need to bear the social stigma of their condition.

Epilepsy needs to be widely acknowledged and epilepsy research needs to be funded, for this condition is too dangerous and too widespread to be ignored any longer.

People with epilepsy need to be supported and understood, just as much as patients of any other neurological disorder.

For in the end, we are all human.

“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.” — Joyce Bender, President’s Award Winner

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Resources:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3200035/

https://onlinelibrary.wiley.com/doi/pdf/10.1046/j.1528-1157.44.s.6.2.x

https://benderconsult.com/stigma-epilepsy/

https://health.usnews.com/health-care/for-better/articles/relieving-the-stigma-of-epilepsy

https://pubmed.ncbi.nlm.nih.gov/12609301/

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