Ending the Stigma

Epilepsy is categorized by an individual having 2 or more unprovoked seizures. About 1 in every 26 people will develop epilepsy at some point in their life (Source). It’s one of the most common neurological conditions affecting the brain today.

Epilepsy is controllable, for most individuals. About 50-60% of people suffering from it will be seizure free after the first seizure medication tried. Adding a second medication will help another 10% become seizure free. 5% will have relative control over their epilepsy, with occasional seizures and side effects. (Source)

Yet it’s still a condition that’s followed around by a daunting stigma. With epilepsy being so prevalent and controllable in today’s world, why is it that epilepsy expert Dr. Sallie Baxendale has said that stigma surrounding the condition can actually be worse than the seizures themselves? (Source)

Living with the stigma of having epilepsy means living with the fear, misunderstanding, and discrimination that surrounds it. Being looked at as dangerous and unreliable. Being cast into the shadows by society, catalyzing depression, anxiety, and stress.

The first step to examining this stigma is by exploring its history and origin. 

Historical Stigma

Living with epilepsy has never been easy. The earliest mention of epilepsy begins with the Babylonians. They saw it as a symptom of demonic possession and thought that the different types of seizures were influenced by the specific demon that had infected the individual. The Romans also shared this belief. They thought that if a person with epilepsy either breathed on or touched another person, that individual would then also become infectected by the demon, unless they spit immediately. The Greeks called epilepsy the Sacred Disease, believing that it was a curse from the Gods for offending the goddess Selene. Throughout the middle ages, epilepsy was believed to have been a curse upon someone by a witch. (Source)

People living in these societies were shunned and isolated. As science progressed and society realized that it was a natural disease, you would expect for the treatment of epileptics to improve. And it did. But to what extent? People were no longer put through terrible treatment methods and were no longer killed for their condition. But they still faced severe discrimination up until the 1900’s.

Until 1956, people with epilepsy in many states of the USA were eugenically sterilized, not allowing them to reproduce. The same law was enacted in Sweden and lasted until 1975 (Source). It wasn’t until 1970 that people with epilepsy were allowed to marry in the UK, and it wasn’t until 1980 that all states in the USA allowed people with epilepsy to marry (Source). Until 1990, when the American’s with Disabilities Acts covered epileptics, many employers refused to hire individuals with the condition (Source).

Today’s Stigma

There’s been a strong history of discrimination against epilepsy patients in past, and although it has been improved, how much have times really changed?

In 2012, an article was published with the following title: “Epileptic man stabbed his noisy neighbour to death with a fish knife in row over eviction”.  What did the man’s epilepsy have to do with the stabbing? Nothing.

A study conducted in Dalhousie University in Canada on epilepsy stigmatization in social media found that out of 10,662 tweets containing the word “seizure”, tweeted out in a single week in 2011, 41% of them were derogatory in nature.

According to this survey, conducted in 2016, 26% of workers in Great Britain would not be comfortable working with someone that has epilepsy.

Reddit user Araneth commented the following in a Reddit thread:

I am apparently incapable of doing the same work other staff can do in my workplace.

Just started a new job. I require 3 weeks shadowing, dispite having done care for 6 years.

I am not allowed to work 1:1 or 2:2 out in the community, dispite being allowed to drive a car.

I am to phone and check in with the seniors when I am on shift, dispite wearing an alert button I am to use if I feel I’m going to have a seizure.

I require more meetings with management to see how I am coping, dispite having worked 40 hour weeks or longer throughout my diagnosis (4 years)

There are discussions taking place to see if it is safe for me to work 1:1 in the building itself, down to can I even assist someone to take their pants down to use the toilet.

I am a condition. I am not a person.

Although the treatment of people with epilepsy has greatly improved both medically and psychosocially, it’s apparent that there is still a dangerous stigma following them around, impacting their everyday life.

Ending the Stigma

People with epilepsy are not outliers of society who can’t function properly. They’re people, just like anyone else. They have families, responsibilities, jobs, and friends. They too worry about what to wear in the morning and whether they’ll have time to catch the game after work. They understand their conditions, and if any, they understand their limitations. They know what they can and can’t do. As mentioned earlier, 70% of people with epilepsy have full control over their seizures.

The question then becomes, why is this stigma still around, when science has taken our understanding so far?


Diane Patternak, a social worker at the Comprehensive Epilepsy Center at Hofstra Medical School, has said, “This is the most important way to change the stigma associated with epilepsy. Schools, organizations, medical professionals, police, and the general public need to be better educated on epilepsy.”

Although our understanding of the disease has increased many fold in the past 50 years, the ones benefitting from this knowledge are scientists, doctors, patients, and family/friends of said patient. In other words, unless epilepsy directly affects you, you likely don’t know too much about it.

The survey mentioned earlier goes on to show the lack of education the general public has when it comes to epilepsy. 63% of workers stated that they would have no idea what to do if someone were to have a seizure in front of them. 76% of people questioned had not been offered any training at all, when it came to seizures at work. 1 in 5 people were unaware that epilepsy can be fatal, and only 17% of people claimed that they would definitely know what to do if someone were having a seizure.

This stigma could very likely be perpetuated by fear of the unknown. Most people simply don’t understand what epilepsy is and how it affects an individual. People fear what they don’t understand.

Having epilepsy isn’t something that makes you weird, a bad employee, or undateable. It’s part of what makes you human.

Educate, educate, educate. If you have epilepsy, let people know you have it, but don’t leave it at that. Explain it to them. Make sure they know that it’s just part of who you are, and not what you are. It doesn’t define you. You’re a person with epilepsy. Not an epileptic. Stigmas often start due to a lack of education. People fear the unknown. Make the unknown, known.

Dr. Baxendale has also said that people who try to hide their epilepsy often experience increased anxiety and depression. When the same people started to feel comfortable with sharing their epilepsy, those negative feels decreased.

This means that we need to ensure that people are comfortable to talk about epilepsy. But for people to become comfortable talking about it, they have to know that they won’t be judged, and it won’t impact their relationship with the person that they are talking to.

This isn’t a short, nor easy process. Change take generations. But what we can do is keep pushing positive change.

With the combined effort of us as individuals to educate the general public, the days of people not seeking treatment, or hiding a diagnosis, due to the way that epilepsy stigma could harm their job prospects, or relationships with friends, family, and loved ones, will soon be behind us.


How one mom is beating epilepsy after 26 years

This article is completely written by Amy Sayers, sharing her experience with epilepsy. This is the first part of a multi part series sharing hope and experiences of those individuals and families overcoming epilepsy. Amy Sayers is a Neutun.com user from Sturgis, Michigan.

Life was good. Even though I had a history of seizures. It was especially good because those seizures had kept themselves at bay for over 26 years. Good job brain! But — we all know how life has a way of twisting and turning. The path before us isn’t always well lit and every once in a while, we fall. More accurately — we trip and our face introduces itself to the bedroom floor, we sprain our wrist, bite our tongue and claw the palms of our hands. We can’t figure out how to get up, or which way to go because epilepsy jumped up like a big old root on my path and tripped up my life, and the lives of my family.

So — that’s how things were playing out for me. First seizure at 16, one more at 18, and then26 years seizure-free. Life was good. Epilepsy wasn’t even on my radar anymore. I had for some reason, beaten the big “E.” Enter stage left, walking from the bathroom into the bedroom on Christmas Eve, my first reoccurring seizure.

That was about ten years ago, and then, four years ago I was having head pain and experiencing an aura in my 5th grade classroom. My husband came and got me and took me directly to the emergency room. There I was given a great deal of medication to stop both the pain and the seizures. They decided to keep me overnight for observation…and we are so thankful they did. Sometime in the middle of the night, my husband tells me that I turned to him and said, “I need help.” The next thing I remember was waking up in ICU with many monitors on me. Apparently the medications they had given me taxed my respiratory system and put me in to asystole. My heart stopped for 9 seconds. I am thankful I don’t remember this experience. I didn’t understand why I couldn’t leave the hospital the next day. I oversaw the east sideline at Notre Dame Stadium and it was the day of the spring game and I had to be there! It was then that the doctor, trying to talk sense in to me, had the nurse bring in the EKG readout that showed the 9 seconds of flat line. This was very sobering to me — and my world tilted a little bit.

Then, in April of 2015, almost a year ago, (we are gearing up for a big celebration,) I went down in the school parking lot with more seizures.(Hey colleagues, check THIS out — a humbling experience, to say the least.) They could not get them to stop. I was transferred to a hospital that was an hour away as it had a neuro ICU unit and I could be monitored both with an EEG and video monitoring. Over the next two days I experienced over 40 seizures. The worst part of this was coming out of those seizures and seeing my grown girls and their husbands see me in such a state. The pain on their faces was the greatest pain that I have felt in my life — far greater than any physical pain from having a seizure…and this is where the Neutun seizure app comes in to my story.

When I first began experiencing my seizures again, it turned our world upside down. I am a technology integration coach and serve all the schools in our district. Not driving was something that had to be worked around…luckily I have an amazing husband and work with some of the best people ever. One of the other hurdles that I had to get over was an over-protective husband. There were times I felt smothered by his attention. If I had a myoclonic jerk — his eagle eye would detect it and ask me “Are you okay???” If I had a head pain out of the blue and shut my eyes and held my head — he was at my side at an instant (and sometimes still is.) Every day before I leave home, it’s “Do you have your phone? Do you have your medicine?” And I suppose now with my amazing Neutun app on my watch — “Do you have your watch on?” One doctor appointment early on I mentioned to the doctor that it truly was irritating to me that David was offering too much attention and that I was feeling quite smothered by it…and this is what he said to me:

“Amy, you have to remember that a seizure is not only a serious event for you, but it is also a serious event for those that will witness you having one — especially your loved ones. Think about what they are seeing. You don’t see yourself, but they see you in a state that is very distressing.”

This really flipped a switch in me. I had never thought about what my epilepsy was putting my family through. David doesn’t like me to drive out of town by myself. I go to many conferences with my colleagues that are either out of town or out of state, and this leaves him feeling very helpless should I have an event.

The Neutun app has really made a difference in our lives.

It gives both David and I an assurance and peace of mind that when we are not together, that he will be notified at a moment’s notice if I am having a seizure.

You see, this app is just not for me, it is for my family. I may be the one wearing the watch, but it is for those listed in my contacts just as much as it is for me.

I am so thankful for the team of people behind the Neutun app. These people has been extraordinary to work with — and you can sense their commitment to making lives better for those of us that wake everyday unsure of what the day will bring when it comes to our epilepsy. I may not know what my epilepsy holds for me in the future, but thanks to this app, I know my care in the case of an event will be prompt and my family will be able to access me as quickly as possible. If I never have another seizure, I will continue to wear my watch with this amazing app. Thank-you, Neutun team, for realizing this important need within the epilepsy community. You are making a difference in our ability to feel safer as we live out our lives…and you are helping our families feel safer, too.