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Fifty shades of purple………the dark side of Epilepsy.

by Emma White about a year ago in stigma
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Discussing is it prejudice or is it stigma? The attitude behind "you can't catch Epilepsy from drinking my water bottle!"

Fifty shades of purple………the dark side of Epilepsy.
Photo by Valeriia Kogan on Unsplash

I can hear you asking after reading the title asking Why purple. Well, purple is the color set aside for Purple day, which is celebrated on the 26th March, as a global initiative dedicated to raising epilepsy awareness. Seeing as we a fast-approaching 26th March I got excited to see this challenge about Uncommon knowledge, however I missed the boat. The competition closed before I could submit this. I have just, been to busy to be able to get my story in; but I thought I might just share anyway, despite missing the competition.

I want to share some uncommon knowledge about the stigma of Epilepsy. Also, is the behavior just stigma or is is actually prejudice? I have often experienced that people don't really talk about the difference. They just say it is stigma, and don't get me wrong, stigma is a thing, but there is a big difference between stigma and prejudice. I have had Epilepsy since I was born, and it stayed around till now and currently, I still have it as an adult. In her late teens, my sister was given the same diagnosis and has it still. I have many friends and other relatives with Epilepsy too. This is why I feel so strongly about calling out the difference between, prejudice behavior and stigma.

I remember the first time this statement was said to me. "Can I catch Epilepsy from drinking your water bottle, or if you drink mine?" I was a teenager, which made me feel like a freak. Those words stung me like poison on my skin. Fair enough, the other teenager had asked partially because she was curious, but equally because it was in front of her "clickly" group, and it was a point of humiliation as well. I feel like this is stigma, because she didn't know.

Just encase you don't know......... Epilepsy is not a disease you can't get from drinking my water bottle; it's not the common flue or something. Technically, Epilepsy is considered a neurological disorder marked by sudden recurrent sensory disturbance episodes to the brain.

So many things need to improve about how we treat people with Epilepsy.

Like, how in the medical world I have encountered General Practitioners, who know less about my condition than I do. Down to how the average person understands Epilepsy. My sister, and I once attended a training seminar, about new research into managing Epilepsy. Where a person who was a personal care, staff, for a disability service provider, after we went around the room, saying why we were there. We had just answered "we are here to know more about Epilepsy, as we both have it, and to know how to better look after people with, what new discoveries are out there." This disability worker asked us, "so how come you are still alive?"

Ummmmm.... pardon. Why are we still alive? What do you think we have a flesh eating disease, or a terminal illness?

I have had so many people ask me;

"How come you have a normal life?"

or one of my favorites.

"So, are you allowed to drive a car with your condition?'

My response is, "Yes, we can't be on the road, driving a car without being medically clear."

To which I normally get back...."Oh that's good just checking, Was just making sure it was safe for you to be driving, You know being and Epileptic and all."

Like ok, you realize I have to have a license to drive on the road they don't get handed out in cereal boxes.

I understand why we, as humans need to name something. But I lived my whole life under labels which caused me to experience prejudice. My sister has lived under labels, my family has had to put up with others' constant judgment. Like questioning if we should be driving on the road, and do we realize we have Epilepsy. .....Um yes we do realize.

Question: Why is that your business?

The diagnosis is great for knowing how to seek help and be medically treated, but it sure has cast a shadow over my life. When I hear other people constantly talking about it, just as a disorder, it gets my back up a little. We are still people, not a textbook walking "problem."

A person with Epilepsy should not be looked down at, as weak or broken. We do not need to be cast aside as "something wrong." You do not need to try and fix us. Or checking if we should be driving on the road.

We just need to be embraced, loved, and accepted.

I say prejudice because sometimes it is intended to hurt, other times many people don't think their behavior is prejudice, but it is.

Do you ask someone with glasses, who is driving " is it ok for you to be driving?" Just like the definition of the word, many Epileptic's, myself, and my family included have had, to face preconceived opinions, from others that is not based on reason or actual experience.

When it gets to mean prejudice behavior it is different. We are cast aside because even after you explain to people that you can't catch Epilepsy from drinking from someone's cup. People will often bring that up after knowing the facts, but this time as a tool just to harm or injure myself and others who have Epilepsy. They do this just to "have fun" in a group, resulting in hurt due to the, direct result of their action in asking the same question in a group scenario, with no reason other to make fun of you, or exclude you.

Either way, be it accidental or a tool to harm it feels like prejudice to me. But when I bring this behavior up, it is spoken of as stigma.

"It's just the stigma of being an Epileptic, you are over reacting."

But am I.......................?

That question about the water bottle, I have been asked so many times in my life. To the point, I stopped reacting to it. When I started my coordination role for a large global organization, I was asked this question again by a staff member in her sixties. I still got the same feeling, but I did not show my outward frustration. She was legitimately asking because she, wanted to know if it was safe for me to use the lunchroom teacups for employees. She wanted to know if there was "any risk associated with me drinking from a cup, and not washing it out properly, would I transfer Epilepsy, onto her or someone else.

I answered, "No you cannot catch Epilepsy off my cup. It does not work like that." That is stigma because her ignorance about not knowing anything about Epilepsy, made her ask the question, "as a concerned party, in the office."

Later a couple weeks had passed, this human in question decided to ask me this again in front of a group of people. I was stunned, although I answered the same, "No, you cannot catch Epilepsy off my cup. It does not work like that. Remember I told you that not long ago."

She laughed at me and said, "Just double checking." She and the group then went and sat down to lunch, and when I went to sit down, she made a joke. "So if you sit here at the table, can we catch it off the chair?" I knew the first instance when she asked me about the cup, she generally did not know, but this time, the questions had changed to a form of prejudice and had suddenly transitioned into bullying. She concluded by saying, "I don't really want you sitting here; you fitters are known for being stupid. I don't want you to bring down the quality of the room." They made me feel so uncomfortable. I left and sat outside in the park and ate my lunch.

The term she used "Fitters" is directly referring to my seizures.

Is that Stigma?

Because when I told my Boss about it, and she talked to this particular staff member and her boss, and we had a meeting. Where, I was told by her, "Sorry I did not think you would be offended by that, I guess it is classic Stigma around a medical condition, I just don't know too much about what you have."

My manager and hers thought that was fine.

"Emma this is just a misunderstanding, she didn't know, maybe you can do a talk to the staff to combat their Stigma and their misunderstandings."

Most of the time, you can tell the difference between stigma and straight-up prejudice. You learn to know the difference between the two; based on how people treat you. For me, stigma is a negative stereotype or a negative association people make about an illness or something. Or, in my case, a medical condition. But prejudice is a negative stereotype about a group meant to exclude or cause harm. An easy example of this we can all understand is racism, excluding and hurting someone for the color of their skin. But that statement, "I don't really want you sitting here, you fitters are known for being stupid, I don't want you to bring down the quality of the room." That shows prejudice toward the collective of humanity, who have Epilepsy, that we are dumb and not allowed to eat with other people.

People with Epilepsy are really brave, strong, caring, smart, and many other things. We are brave because most people I know with Epilepsy, myself and other family members included, just have to put up with stigma and prejudice all the time. So do the family members of Epileptic's. We are strong because we have to get up daily knowing that today we will probably cop another judgmental comment, or invasive questioning, about "how do you cope?"……… or my favorite, "But you look so normal, why do you look normal?"

We are generally caring because we have often been treated so badly. We usually just want others to be treated well. When I was a teenager, I was super jaded and also into my very early twenties. I wanted to help people, but when people were mean to me there was a breaking point for me, and I would give it back. Which was super awful. I have been super mean to people, and even projected my anger to others. This is mainly because I had not worked out how to work through my multifaceted trauma. Form different forms of abuse through to constant prejudice around being "a freak". But my Epilepsy makes those things hard to deal with, in ways people don't get, and also I was sick of being cast aside. I learnt to not worry about it, and just stay kind, don't let it get to you. You only end up hurting people, and I need to be the bigger person.

We are smart because we have to think outside the box to solve a problem in an area we might lack. I know my memory can be hit and miss it is just part of my walk I have had forever, but when I start a new job or, learn a new task, I have to write it down. This generally gets rid of the problem of forgetting. I still forget things, but I try to work around it. Write lists, be attentive, create a checklist, the list goes on. This skill has allowed me to become a great author of desktop manuals wherever I have worked. Often those desktop manuals have been used well after I have gone from a position until they are finally updated. I get exhausted, so I have to learn how to try and do tasks smarter, not harder. Also, navigate my world to make sure my work life balance is good.

I am still swamped, I am a part-time coordinator for aged care, part-time life coach, and spend a lot of time painting and working on my family's farm. But I have to force myself to schedule breaks and have some balance. I have many other things that make my life a challenge due to Epilepsy, weight gain and loss, high emotions, anxiety, concentration issues, lack of sleeping due to being overstimulated, the constant struggle with monitoring medication and many more. I know I am both blessed and very lucky many people cannot live a life like mine due to the severity of their Epilepsy. I can drive, ride horses, do most things, and even go on amusement park rides. I used to be really cut up that I could not join the defense force, as that had been my dream. But in all honesty, I can do so much more than most people with Epilepsy can, so I had to let it go.

This is why this ways, on me so heavily. If I a seemingly, less on the scale of epilepsy in a person, and I am treated so poorly, then other people with more advanced Epilepsy must get treated awfully. Well, the answer is they do indeed get treated worse. I have seen it so many times. It is so genuinely awful that I have found myself crying for many strangers, even friends and relatives. The isolation, because we are different, blows my mind. I know we currently have it a lot better than other generations of people suffering with Epilepsy have, had before us. But it is just so horrible that this behavior still exists for people with Epilepsy. Actually, it annoys me that people still feel the right to outcast anyone and carry prejudice.

However, I can say for myself and those in my epileptic family related or not, that we are hard workers. We have to be able to just survive the day. I used to describe that, as we had to be to keep up with the pack. But now, I don't try to keep up. I just live my life the way I need to, for me and survive the day. But that hard-working skillset allows us to become good at adapting, in an area, considered "weak" to make it a strength.

Epilepsy has often been considered a "problem or an evil thing" by other people. I have even had fellow Christians tell me that it is a dirty word in this day of age. Now I am a believer, but I have had many a "Christian" tell me that Epilepsy is a curse from the Devil. Instead of getting cranky, although it makes me angry, I just challenge them on this horrendous, outdated religious stupidity. I also realize that there are always going to be people who think like that. So, if I come across someone who thinks that's ok to say that. I try to educate them. However, if they are still not receiving my speaking to them about how I am still a person, and this thinking is prehistoric, I just don't bother talking to them. I dust off my feet, and I go on to live my life, doing what I feel God's calling is on my life.

Even if it is just people who feel the need to tell me I won't amount to anything because of my Condition. I chase my dreams and goals and try hard to brush off the judgmental people. When I achieve things they think I should not be capable of, they come back around surprised by my achievements. I have no desire to tell them I told you so, I let my actions and character speak loudly for me. But outside of the church scene, the world views Epilepsy in a very unkind way.

The seizure-journal.com has countless study and research into the psychological effects of Stigma and Prejudice surrounding Epilepsy because of how common it is. I have worked in a workplace where I was targeted because of my Epilepsy. I had a lady constantly moving things around on me after I would have put, that said thing down. Tell me that I had "forgot I moved that because you have epilepsy." She would change her instructions when I questioned her on things that were not adding up and then go to the manager to say I was the problem because I "could not remember because of my Epilepsy." So many things, basically she was Gaslighting me and using my Epilepsy against me. Although I know my current field in mental health does not really endorse the term of Gaslighting. I consider it both real and a form of "psychological abuse". Which is where a person or group makes someone question their sanity, perception of reality, or memories.

I know in the mental health profession Gaslighting is a concept of many heated discussions and a topic that is often widely debated, with the verdict not out on it. But for me in my profession, I, for one, do actually think Gaslighting is a real concept. I generally sympathize with these people who talk about feeling confused, anxious, and unable to trust themselves. Because I knew my memory lacked sometimes, but I had created a really reliable system to help me remember and not be unreliable. But this lady just kept doing this, blaming my Epilepsy for these things, and I felt all of those things. I felt like I was going crazy. So, I just started writing heaps of lists and only communicating with her through email, but I felt on trial as I had to prove my Epilepsy was not the problem. One day I caught her out, bluntly denying a task she had "apparently assigned for me", she had actually issued to someone else in an email. But she had blamed me for it not being done. I took that to my boss, along with a lot of evidence, of this same thing, happening, where I could prove it. My boss was surprised that I could prove "that my medical condition was not to blame for the incompetence of the office." Because of how surprised she was, I resigned. Not because I was feeling "stupid" like she and the other worker would call me, but because I was just over having to constantly defend myself all the time. It just was not worth it. It ate away at my peace of mind, and nothing is worth your peace of mind. But I will never forget that feeling of being Gaslighted and as if I was on trial for having Epilepsy.

One snippet of an article, The seizure-journal.com, explains that; "Stigma has been conceptualized as "an attribute that is deeply discrediting" .1) The stigmatizing nature of Epilepsy and its associated psychological distress have been reported to have a significant impact on the quality of life of individuals with Epilepsy." ( seizure-journal.com article/S1059-1311). I can say that is very true. Battling stigma or prejudice often makes my everyday life hard. Still, no one really ever told me about battling either evident prejudice or even underlying prejudice that people don't consider they have, until they start talking to you about your Epilepsy.

It is incredibly frustrating, and there is nothing you can do other than enlighten them. If they want to dive into an open discussion and why the conceptual ideas about Epilepsy are totally wrong, that is great. But honestly this seldom happens, the world is still so judgmental of Epilepsy and unaware of how they treat people; it is like a losing battle.

Many people hear that someone has Epilepsy and suddenly say, "oh that's unfortunate," "Wow, there is something wrong with you or that person," or "Wow, that is super hard and very scary, how do you do life." The worst one…. "I pity you that you are like that, so glad my family and I are normal." Hold up a minute; it should not be like this. Why do we think those things are still suitable to say? One in 26 people will be diagnosed with Epilepsy throughout their lifetime. Epilepsy is one of the fourth most common neurological disorders, we will come across in our lives, but it the least understood of all the neurological diseases.

Epilepsy, regrettably, has a long history of misunderstanding and stigmatism or as I like to say prejudice , which is still prevalent. The examples of my life or others I know with it show this. Historically, there is so much evidence that individuals who suffered Epilepsy being outcast. Due to being considered "the society rejects, persons of great illness, unworthiness, and ancient history attributed it to spiritual or demonic possession."

In fact, the great Roman medical practitioner, Hippocrates, was shunned by his superiors and nation because he truly believed that, the notion of Epilepsy was not a supernatural phenomenon and instead something derived from the brain. Unfortunately, Hippocrates wasn't believed until well into the 17th century, when the notion that it wasn't demonic or spiritual possession was partially debunked. But still, the stigma if not prejudice associated with Epilepsy continues to this day. The only reason Epilepsy feels so different and outcast worthy, is because people are still so ignorant, and judgmental.

Worse than that myself and many others are encouraged to be more normal to fit in better, with a society that is ridiculing the hell out of us. Like it is our fault we are different. I remember being at school as a teenager, and I used to tell Epileptic Jokes and blonde jokes so I would be able to beat the bullies at their own game, so they would leave me alone. Because I remember going to a teacher about it prior and being told "You need to just fit in better, they don't have much exposure to people like you ok, stop being so precious. They are trying to put up with you being different; you should be grateful they are trying to do that." My kid logic didn't tell my parents or anyone else I just thought, what is the point, to do that. So, I started telling jokes instead, fitting in with people, who were bulling me, and making that behavior ok because it was my fault I stood out. I still tell some of those jokes depending on the scenario. I use them more as an ice breaker these days, so people can see that I don't take myself to seriously, in the right scenario. The reason why I tell them has changed from, I have to, to survive, to this is something I have the freedom to do, provide it won't offend anyone.

Nowadays, though, I have moved on from telling jokes to asking the question, "ok so you don't think Epilepsy is normal What is normal? Then await their answer.

I equally like explaining after listening to their response to what is a normal person. "Did you know "Normal people can have seizure too." Anyone can have a seizure."

The look of fear on people's faces; for a moment after I say that well-rehearsed statement, is really profound. I am often directly asked "Normal people have seizures?"

To which I respond to something like .......

"yes…… you don't need to have just have Epilepsy to have a seizure. You "normal people" could also have increase risk of having a seizure if you have a high fever, Lack of sleep, Low blood sodium (hyponatremia), Medications, such as certain pain relievers, antidepressants or smoking cessation therapies, that lower the seizure threshold. Head trauma too, that causes an area of bleeding in the brain, Abnormalities of the blood vessels in the brain. Stroke, Brain tumor, use of illegal or recreational drugs, such as amphetamines or cocaine, alcohol misuse, during times of withdrawal or extreme intoxication and even the new COVID-19 virus infection."

'A seizure is just defined as a sudden, uncontrolled electrical disturbance in the brain. It can cause changes in your behavior, movements, feelings, and consciousness levels. So, if basically everything can cause a seizure, why does the world seemly want to cast aside us Epileptic's? Two-thirds of people who suffer with Epilepsy have no specific reason for their condition. It basically can be completely random."

Then you watch the wheels turn in their heads for a while.

So, my question to them now and you the reader is, "What is normal, and what is the world considering "not normal"...what is that?

I am going to tell you what normal likes.

Normal and Epilepsy look the same, they look like a lot of famous people who have suffered with Epilepsy. Lil Wayne, Rap superstar, Theodore Roosevelt- President, Danny Glover – actor, Vincent Van Gogh – Artist, Pyotr Ilyich Tchaikovsky – Composer, Michaelangelo – Artist, Napolean Bonaparte – Politician, Neil Young – Musician, Susan Boyle-singer, Agatha Christie – Writer, Julian Schiller- TV & Radio Personality, Elton John – Musician, Hugo Weaving – Actor, Julius Caeser – really famous Politician, Socrates – Philosopher, Prince – Musician, Richard Burton – Actor, Dai Greene- Olympic athlete, I am going to end with Former Atlanta Falcons running back, Jason Snelling. There are many more too, look it up. Normal is actually time after time Epilepsy showing up on the world stage proving over and over again that Epilepsy makes achievers, and world changers.

People with Epilepsy toil hard every day to just make it through the day, proving to people we are not freaks. We are more than comments about "can we catch that off your water bottle." Every day we get up knowing the world thinks we are some sort of throw away item, but we get up anyway. We put on a smile, sometimes it can be strained, but usually, it is real depending on the situation. We show up and we challenge the idea of normal. We write history, and we actually have a lot of value. This list above of famous people with Epilepsy, shows we have been showing for a long time, bringing the world a lot of its greatest achievements, inventions, and parts of history, that changed the face of the world.

We as a global community shouldn't be imposing on people with Epilepsy to have to put up with being used to stigma and prejudice all the time, and telling them, they are not worth something. Instead, of judging them and being ignorant, we should be loving to them. Learning about their life more. Being kind to whatever difference they have. So, what if we are different. We should be loving to all. This needs to be the take-home idea. Everybody, no matter if they have Epilepsy or not, belongs. The world needs to stop casting people aside who are different wither it be for the color of their skin to their medical condition. That difference is often the best thing about that person. Difference is not a problem, or something wrong, it is our unique fingerprint that makes us stand out, and be history makers.

Written by Emma White

References

https://www.seizure-journal.com/article/S1059-1311%2805%2900018-X/fulltext#:~:text=People%20with%20well%2Dcontrolled%20seizures,at%20least%202%20years%20reported

https://www.epilepsy.org.au/fundraise/purple-day/

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Emma White

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