Unwanted (and Uninformed) Comments About Your Epilepsy
Last updated: May 2023
Did a person ever say something insulting, irritating, or ignore what you were saying when it comes to your epilepsy? It has happened to me with a professor in college, 2 people at a bar I go to, and at a girls group I attended in Brooklyn. Just to name a few...
People don't understand what epilepsy is
My first job was serving Italian ice. I had a seizure and the owner dropped me. I never went to his store after that. Fine, I went unaware having a complex partial, but still! Especially since my dad knew him from living in Williamsburg.
Today, as an epilepsy advocate, I understand that he knew nothing about what epilepsy is, or what to do. He was scared and did not want to take chances if it were to happen again. Try to advocate for awareness of epilepsy so others have more education and understand what it is.
Some people understand seizures. Some don't.
I attended New York Institute of Technology. What's the difference between the Long Island and the Manhattan campuses? If a seizure happened in Manhattan, no big deal, no one called 911. I was watched over and precautions were taken. And the 2 times it when it was serious, they made the call. Other than that, I was treated like everyone else. They understood what seizures were and knew how to handle them.
Long Island psychology professors, on the other hand? One was disrespectful and had doubts I would be able to do a presentation for extra credit. She had a smirk on her face. But her mouth dropped open when she saw how well I did. As I was walking out of her class, she asked to learn more about epilepsy.
The next day, I brought a book in, "For Patients with Epilepsy," and explained what seizures are. I shared about what can cause epilepsy, treatments, psychological and neurological effects, as well as sharing about my own treatment. After that took place, she understood my circumstances and we got along very well.
Epilepsy awareness and a willingness to learn
The difference between the Manhattan and Long Island campuses is that the security, professors, and staff in Manhattan were made aware of it and asked me about what type of seizures I have, and what should be done.
Whereas few professors on the Long Island campus asked what should be done if I had a seizure in class, and the security did not want to know at all. Once again, it was a lack of awareness regarding epilepsy.
Relationships with epilepsy
I went to a group from Meetup to meet some other women for friendship. While at a bar in Williamsburg, I went up to get another non-alcoholic beer and a man began to speak to me. I was expecting to exchange numbers, but unfortunately, he was judgmental about my choice to drink non-alcoholic beer. If a person is like that, it's too bad for them.
If you tell a person on the first date that you have epilepsy and the person responds, "If a seizure ever happens, don't worry, I'll put you in an Uber or cab to send you home." It sounds like it's not the right person to be with. There are plenty of other people out there who will appreciate you for who you are, including your decision to live a healthy lifestyle.
No, flashing lights won't make me have a seizure
At a recent bridal shower, it was jumping, jumping – as Destiny's Child would say. There was a DJ blasting techno music and strobe lights at one point. Even though it celebrating a person in my family, I did not know everyone who was there.
When the wedding shower was just about over, the brothers, boyfriends, and husbands showed up. Two men were standing together near the DJ. One said, "An epileptic would never be able to be here." His friend responded, "Right there's strobe lights!" Then they laughed.
I walked over and told them, "I have epilepsy. I love strobe lights and stare at them sometimes." They were stunned and asked, "Why aren't you having a seizure?" I explained, "Everyone is different. My triggers are stress, not enough of sleep, alcohol, and caffeine."
But some people want to learn more – and they care
There is a local ale house I go to, which is very small, so after 1 seizure happened, all the staff knew I had epilepsy. Since 1 of my friends work there, she made sure all bartenders knew my mother's phone number and what to do if I had one.
My favorite bartender had to deal with 2 non-epileptic seizures I had. One which was about 20 minutes of my voice being slurry. Then he eventually rolled his eyes. I've had 4 seizures there after going there for about a decade.
Interestingly, almost everyone would ask about why I drink O'Doul's (non-alcoholic beer). When I would tell the truth about having epilepsy, most people either said, "So you'll have a grand mal?" "You'll end up on the floor?" or "You'll fall, right?" I would then correct them about how I have auras, explain what an aura is, and share the definition of a complex partial seizure.
Many people would then ask me more and more questions about the brain, causes, and so forth. I wish others would be curious and do the same. Eventually the entire ale house knew about my epilepsy, but not 1 soul made fun of me.
Facing negativity from people WITH epilepsy
At an epilepsy meeting online, I explained how confused I was with a medication and that I never felt this way before. One guy in the group immediately had a judgmental response, "Don't be a hopper from doctor to doctor. That doesn't look good." It seemed like a joke to him and that he was almost laughing.
With a smirk on his face, he went on to talk about the medications like he, himself, was a doctor. Telling me what to do and like he knew what I should be on. And that I was dumb for not understanding all of this.
I held my attitude back, remembering how responding angrily would make me look bad instead of him, and I gave an excuse to disconnect from the group. Instead of arguing back, it is better to report it to a group administrator. Before reporting a person or event, make sure to use clear wording and speak up respectfully.
If someone is making fun of your epilepsy, it's their loss
What's important is to always remember how amazing you are, and if someone is disrespectful, that is their loss. Every time you hear something irritating, insulting, or dismissive, let it give you more strength than weakness, more hope than defeat.
Keep moving forward and continue to love yourself. Help to advocate, stand up for yourself, and report events, if needed. At the same time, stay strong. There is nothing wrong with you. I sometimes need to remind myself how great I am and how wrong others can be. Life can be tough, but we have to deal with it and continue to move forward.
Since being diagnosed with epilepsy, has your memory been impacted?