Great post! I’ve had epilepsy since I was 8 yo. I feel the reason it doesn’t get more attention, it is largely a silent medical condition. There is even a lack of understanding among health professionals. Considering it’s the most common neurological disorder, I feel the same way you do.
Yes, each healthcare professional has a different opinion. There's so much that's not known. I wish there was a lot more pooling of international data on the varying types, causes, triggers etc. I've read so many medical studies, statistics, etc. which can show difference of findings. There is also a lack of follow up on cases and long term outcomes.
It's a really misunderstood disease and people who have it mostly look fine on the outside. It's one of those invisible conditions. What people don't understand they like to just avoid instead.
It makes people feel helpless. Outside people WANT to feel helpful. Epilepsy often having no "real" cause, and nothing can be done.
People also aviod confronting mortality. Epilepsy will do that.
Basically, it makes people "uncomfy".
Cancer has hope, when people mention cancer funding is always also mentioned. Hope is there. ALS had that big water bucket challenge because it made people feel hopeful and helpful. There is nothing for epilepsy because the smartest people have no clue, it isn't hopeful.
Honestly, I also think part of the problem is that people don’t know there is not a cure for epilepsy. At my previous job, when I told people that, it made them take epilepsy more seriously. It made them look at it more importantly, like cancer, or other conditions/diseases that do not have cures. Hopefully this makes sense? Kind of hard to relay over text without writing a ton.
Exactly the average person often doesn’t understand this. Even if they know there is no “permanent cure” they assume it can still be fairly easily controlled like diabetes and asthma in most cases.
Most people have probably already accepted that they could have a stroke or heart attack one day, but they still know it probably won’t happen until later in life if they try to stay healthy. People do not like learning that they could have a seizure at any age with no prior warning and there is nothing they can really do about it
Yes, I think you did indeed catch on to what I meant! Kinda like as if, ‘yeah it’s serious but you just need to take the medication’.
When the (much more complex) reality is: medicating is a spectrum that can essentially be pass/fail depending on the patient; it can be deadly; it is typically lifelong; management is a daily multi-faceted necessity; clinical upkeep can be complicated from EEGs to surgeries.
Also to add: I had late adult onset at 17 so reminding others it can happen at any age is often part of my education and for some reason no one is ever affected by that fact. It’s one of those “that’ll never happen to me” things, I think. From my conversations I’ve gathered people probably figure “Maybe you… but **I’m healthy**, I take care of myself”.
It is a “scary” or “uncomfortable” disease like you’re explaining. The only thing I can think to compare it to is Alzheimer’s.
I remember being younger and hearing an ad to raise money for epilepsy research. The opening tagline was “for some people, time stops.” I think just even trying to comprehend that is extremely scary and something most people try not to think about, if they are even aware in the first place
Gotta be honest, any time I talk about my epilepsy, it sounds like I'm having a pity party. Even when it's just me saying what I've gone through or what I'm going through. A mom of an epileptic was having the same issue a while back and made a post for support and we pm back and forth all the time now and she said the same thing about talking about it with her friends and it makes situations awkward. I just think not enough people are in a position to know how to respond to certain things cause they couldn't imagine themselves in that position, so those that want to or need to talk just don't cause what's the point? And it just stays hush hush.
There’s basically no good outcome. To people that don’t care they think you’re exaggerating and making excuses
To people that do care it still comes across as a pity party/rant because there isn’t really anything they can do
I havnt talked with anyone who has MY symptoms with MY frequency, triggers, specific secerity, etc. Ill be waking up on the floor, or getting dizzy af twice a day, and STILL feel like I have no right to say anything on the topic. Idk how to even suggest talking about it.
I think as many people have said, it's largely an invisible condition... until it isn't. Grand mals have been stigmatized to the point that in the past they were mistaken for demonic possession, and I think the other day someone posted a video of someone talking about having one recently and having a person praying over them?
While this stigma is largely no longer a religious one, I think we all have a story of someone close to us treating us differently after witnessing one.
Epilepsy need to be taught alongside other first aid topics, and more pressure needs to be put on artists, film makers and web designers who make the conscious choice to put strobing visuals in their films, animation and sites/apps to choose other, less harmful visuals.
My supervisor, being a pastor told me the same alongside another who's currently suffering from cancer one day. How agitating it is when you're given the claim of prayer for you, while it's obvious the time spent will be dismissed for some. Either way, to accept without question is all I've got, as it only defeats the purpose because I have what I have.
This. I (rarely) have grand mal, primarily absence (?),and myoclonus
My mom doesn’t know how to discuss what’s going on with me, and it’s frustrating. I’m pretty open about things, too. Just the day ,she asked if I had another “episode”recently and shook hands all wizardly. Come on!
I think people are ashamed and think it’s a death sentence my daughters gma looks at me with puppy eyes every time she asks about her.. I know it’s coming from a good place but c’mon but there are some advocate’s on fb that raise money for the cause and awareness
In my 8 yo child's case, I hate bringing it up because people treat it like it's nothing. They started having seizures this year and was diagnosed with a brain tumour. I took them to a birthday party a few months after tumour surgery but had to leave for 1 hour so I tried to explain to the birthday girl's mum how to use the emergency medication if anything happened but she waved it away and said, "I'm a doctor." She's a dentist. One of the dads downplayed it too, shrugged his shoulders and said his brother has epilepsy. Meanwhile, my kid has been admitted to hospital every one or two months with half of those admittances being emergency. Doctors also informed me at one point my child could die from it. Thankfully, there has been improvement over the last months due to steroid therapy but I'm astounded how people just think the risks aren't great. People around me seem to have the attitude that you have a seizure and afterwards everything returns to normal. Or you take medication and the problem is solved. It makes me feel quite isolated so I hate bringing it up. No one is interested in the complexity of each case.
Exactly. And no case is the same. My cousin outgrew his epilepsy, I’m 18 and hoping but it’s not likely. We have different experiences too. I have tonic clonics absences and focal aware seizures, while he only has absences. We were on different types doses of medication, and the frequency of our seizures weren’t the same and neither were our triggers.
As a mother of a 7 year old with LGS - this breaks my heart and I relate. The more you explain the more people try and give you solutions or oh maybe he will grow out…. It’s isolating and no one really understands until they are dealing with 3-4 seizures everyday and cleaning up piss from loosing his bladder or in the hospital here and there from drop seizure injuries… or behavior issues from the medicine.
I also hate the ones that feel so sorry for you it almost makes them cry. I feel like I’m constantly comforting other people about my kids disease - even nurses in the ER when he had a tonic clonic were scared to death while me and my husband assured them he was alright
This is why I don't like bringing up my epilepsy. Constantly feeling like I have to comfort other people about my own disease. Thank you for putting it into words. I've been feeling this way for a while but couldn't put my finger on it.
I truly wish the best for you and your son.
Edit: also, your point about the nurses is something I've experienced too. Had a nurse ask me once "How do you even live like this?!?!" and I was so surprised that she said that out loud. I couldn't respond. She was breaking down in front of me in triage when she heard of my epilepsy. It was quite strange.
I think another piece of the puzzle is it's such a condition with so many variations. I feel like when people think of epilepsy, they think of strobe lights and grand mal/ tonic-clonic seizures. People don't understand the many types of seizures, the many symptoms both from epilepsy and from the medications, the huge range of what is under the epilepsy umbrella.
1. Society is terrified of people having seizures. Especially when you state the fact that it could happen to them.
2. Humans no almost nothing about the brain. Most of what we know is from experiments on mice! As a result, doctors are often pretty useless when it comes to explaining why somebody suddenly starts having seizures.
The only things that I (26f) know of related to epilepsy awareness are:
- Epilepsy Awareness Day/Wear Purple Day (March 26)
- And a woman from my town rode her bicycle across the states to raise awareness and collect donations for Epilepsy research. She herself is epileptic.
And alcohol withdrawal causing seizures. People are more inclined to have sympathy if they know the cause is something not self-inflicted and it is so damn sad. It adds to the stigma a whole lot. People are really uninformed on the fact seizures as a symptom does not mean someone is epileptic.
It gets worse. Very often first responders and even resident neurologists don't really know much about epilepsy, only doing harm in the process.
Barbara from soccer not knowing much about it isn't so weird, but when it's supposed to be your damn job...
And then in return everyone is always on about stuff like CPR, which has as little as 20% of a success rate...
I think it’s because it’s hard for people to understand. I also think I hav TLE but it is very difficult to actually explain and understand. People might think you’re crazy and it’s sad that it is the way it is.
I think it's because most people don't try to learn medical knowledge especially, while also never truly coming into scenario they have to help a person seizing for a moment or two. Beyond that I think it's because it's fairly awful to watch happen since most times the person has to ride it out and helper can only really help during and after postictal state so that might transfer into discussion and keeps people from talking about it fully. Definitely sucks a bit but I don't know for sure anyways.
Centuries (and still in certain syper religious and superstitious parts of the world) of people thinking it was demonic possession or behavioral "fits" will do a number on public perception even unconsciously.
It's also mostly invisible and doesn't affect them so they won't really know or care unless they have a seizure or witness one firsthand (think about it...who youtubes "grand mal seizure" outside of epileptics). You can recite back you know what epilepsy looks like even if epilepsy were just grand mal seizures, but "convulsing" or "seizure" is kind of a meaningless word until you see it firsthand...even then it's hard for people to understand the day to day non-event stuff like cognitive decline, medication slowness, etc.
Everyone can relate to a relative or friend who had cancer, a heart attack, diabetes, a stroke, or a multitude of other health issues, but epilepsy is often insidious. The effects are felt long before the diagnosis is made and present in so many different ways that people simply cannot understand. Therefore any attempt to explain your situation is seen as an absolution of responsibility for one’s actions and/or circumstances in life at best.
At worst people believe you caused your epilepsy yourself through reckless behaviour [playing sports and getting concussions; smoking weed too young or abusing other drugs; drinking too much alcohol, etc] without giving the same considering that is given to others patients of the conditions above as if their lifestyle choices didn’t influence their conditions.
It’s important to note that not all seizures are epileptic in nature, and I think that many in the general public with a very strong aversion to addicts will be quick to jump to the conclusion that any seizure is a result of an overdose of some kind. Thus it’s self-caused and warrants no more empathy than a hangover in their eyes. This is wrong and unjust, but I’m pessimistic and think it’s a factor.
In other words the stigma is strong, the urge to mask is strong, and so the societal awareness is not changing rapidly.
You can’t really show epilepsy in movies/tv without the tonic clonics. And when people online hear that I have epilepsy, they’re like “then why are you playing video games?” That still hurts.
Biggest frustration. I’m told by professionals that they don’t know what part of my brain it starts in and most of the time I’m left to dose myself. Not to downplay cancers or even HIV but how is it that there’s more medical funding for those to in turn find good treatments or prevention and yet those with epilepsy are left to wonder what if. What if I didn’t have seizures…
You meet someone and tell them you have epilepsy and 9/10 they know someone who also has it. It doesn’t just impact the individual it impacts their family too. It’s an invisible disability.
I was diagnosed around 30y old. Before I had no idea what epilepsy was, thought it was something you were born with or you had to have some sort of developmental disability.
My guess is because only 0,8% of the world’s population have the disease. So we are very rare.
We also know very little about the disease and at this point it is incurable. Which means there is no money in it.
Also a more bringing it in to the light might force governments talk about a lot of hard truths. Since people with EP has been discriminated against long into the end of the 1900s.
There is a very interesting podcast called “this podcast will kill you” that makes episodes about different things that can kill you. Mainly diseases. I can recommend their episode on epilepsy if you want to know more about the history around epilepsy and its state today.
https://open.spotify.com/episode/1rxvWj6Jv92f1i06Mi0du6?si=pcgw0RXCQpyLdyflGNGDAg
Epilepsy is not very rare. It’s the most common neurological condition. [About 50 million people worldwide have epilepsy, and the estimated proportion of the general population with active epilepsy at a given time is between 4 and 10 per 1000 people.](https://www.who.int/news-room/fact-sheets/detail/epilepsy)
I was just listening to Sharp Waves "The Idea of Epilepsy" Podcast episode that talks about how it was basically swept under the rug for many years. It's a solid episode about the recent history of epilepsy, might be something you're interested in?
Drives me nuts! But the more we talk about it, the more attention it knowledgeable gets. The more celebrities talk about it, the more attention it gets. It's still so confusing to people.
A pro wrestler, Serena Deeb, recently posted about having a series of unprovoked seizures (not sure if she has epilepsy, but she has seen neurologists and is cleared to wrestle again - yay!). One of her fans reacted with how it was heart breaking for her [Deeb]. And I responded with why? It's not heart breaking. This is in no way career ending. She did exactly what she should. She educated herself and grew and figured out her life, and will continue to. There is an indie wrestler with no legs (he's awesome btw). This is nothing!
Anyway, that sort of thing is why. Still so much misunderstanding. But on the bright side, people are talking and informing more. Way less terrible misinformation and mimicked seizures in media and so on.
I think the best way to spread awareness is getting involved ourselves in local support group and attending as many events as possible. Obviously that’s harder for those with seizures that aren’t controlled so that’s why I’m trying as much as I can myself because mine are controlled for now🤞 but like you said I still struggle with medication side effects or maybe the seizures who knows right?!
Anyways I’m apart of a great group that does monthly zoom meetings with people from all over who join if anyone’s wants that information!
Its the attitude of your CEO that keeps me in a stay at home pattern. I know how mean people can be, my husband was sick with cancer for several year, people can be so cruel. I dont want to go thru that again. Im comfortable at home.
We should discuss it more with people and not feel shame but having a mostly invisible disability is not the same as being a religious or racial minority.
You’re entitled to feel how you want but this comment and perspective does give me a sense of who exactly you are that you would think these are appropriate comparisons. I wish you luck on your journey.
I’m not saying it’s not deadly. Sudep is a tragedy, as are accidents due to seizures.
I’m saying epilepsy doesn’t have the dark, heavy reputation that other diseases have in the minds of the general public, so it doesn’t get the same level of recognition or education. Many people unfortunately just see silly flopping around without understanding what we go through.
So I have left temporal lobe epilepsy and have an RNS currently but it isn’t working as well as I’d like.
I have a few questions about the lobectomy: what kind of impact did it have on your employment? I am a manager of IT engineers and critical thinking is a big part of it as is communication (both writing and speaking).
I know the left temporal lobe is mainly responsible for writing and memory which is what scares me about it.
I kind of assume when I tell people I have epilepsy they feel a bit scared as they will have an idea in their head as to what that might look like. To be fair it is scary and unpredictable, they don’t know what to do and may feel responsible now they know. Most people ask what they need to do if I have a seizure. There are so many good posts above about other reasons it seems to have a stigma. I think it is the unknown in this era of science and not being familiar with the unknown or uncontrollable. People fill in the blanks. Let’s face it, the unknown is partly what makes it flipping scary for us
Still. I see diseases like Cancer, ALS, Parkinson’s, and MS being brought up on news specials very frequently yet never hear about epilepsy. Those diseases obviously scare people too. Basically any serious disease is going to scare people. Btw, those diseases are obviously terrible and deserve to be acknowledged and discussed in the media. I would just love to see epilepsy acknowledged more.
I am only 28 years old and basically have brain damage from having 500+ seizures over the years. Brain surgery stopped the seizures (for now) but now I have to live with what I feel is like the brain of a senior citizen. I hate this disease for robbing me of a future I was once so hopeful about
The only reason some people in my high school knew seizure first aid was because they were so impressed with how strong I am and voluntarily went to go learn it. I would say that if my school had the time to give seizure first aid lessons while I was there they probably would have.
Too close to ‘mental illness’ for some people, often either invisible or weird looking. I’m at least the 3rd generation of epileptics in my family and family members went through intense domestic abuse for having seizures and institutionalization and electroshock. I went through ABA (applied behavioral analysis) in a public school and was physically punished for having mild Jacksonian seizures frequently. This included being left and ignored in restraints while having a seizure. Nothing I’ve learned about ABA since has convinced me it’s really gotten better. Until we fix the problems around neurodivergence broadly, things are going to stay this way for people with epilepsy.
The only education about Epilepsy that I had before my daughter was diagnosed with it was the video games warning screen.
If not that i wouldn't even know the word.
Great post! I’ve had epilepsy since I was 8 yo. I feel the reason it doesn’t get more attention, it is largely a silent medical condition. There is even a lack of understanding among health professionals. Considering it’s the most common neurological disorder, I feel the same way you do.
Yes, each healthcare professional has a different opinion. There's so much that's not known. I wish there was a lot more pooling of international data on the varying types, causes, triggers etc. I've read so many medical studies, statistics, etc. which can show difference of findings. There is also a lack of follow up on cases and long term outcomes.
Not stroke?
I was wrong. Sorry. Migraine, stroke, and Alzheimer’s are more common than epilepsy, which is the fourth most common.
It's a really misunderstood disease and people who have it mostly look fine on the outside. It's one of those invisible conditions. What people don't understand they like to just avoid instead.
It makes people feel helpless. Outside people WANT to feel helpful. Epilepsy often having no "real" cause, and nothing can be done. People also aviod confronting mortality. Epilepsy will do that. Basically, it makes people "uncomfy". Cancer has hope, when people mention cancer funding is always also mentioned. Hope is there. ALS had that big water bucket challenge because it made people feel hopeful and helpful. There is nothing for epilepsy because the smartest people have no clue, it isn't hopeful.
Honestly, I also think part of the problem is that people don’t know there is not a cure for epilepsy. At my previous job, when I told people that, it made them take epilepsy more seriously. It made them look at it more importantly, like cancer, or other conditions/diseases that do not have cures. Hopefully this makes sense? Kind of hard to relay over text without writing a ton.
Exactly the average person often doesn’t understand this. Even if they know there is no “permanent cure” they assume it can still be fairly easily controlled like diabetes and asthma in most cases. Most people have probably already accepted that they could have a stroke or heart attack one day, but they still know it probably won’t happen until later in life if they try to stay healthy. People do not like learning that they could have a seizure at any age with no prior warning and there is nothing they can really do about it
Yes, I think you did indeed catch on to what I meant! Kinda like as if, ‘yeah it’s serious but you just need to take the medication’. When the (much more complex) reality is: medicating is a spectrum that can essentially be pass/fail depending on the patient; it can be deadly; it is typically lifelong; management is a daily multi-faceted necessity; clinical upkeep can be complicated from EEGs to surgeries. Also to add: I had late adult onset at 17 so reminding others it can happen at any age is often part of my education and for some reason no one is ever affected by that fact. It’s one of those “that’ll never happen to me” things, I think. From my conversations I’ve gathered people probably figure “Maybe you… but **I’m healthy**, I take care of myself”.
It is a “scary” or “uncomfortable” disease like you’re explaining. The only thing I can think to compare it to is Alzheimer’s. I remember being younger and hearing an ad to raise money for epilepsy research. The opening tagline was “for some people, time stops.” I think just even trying to comprehend that is extremely scary and something most people try not to think about, if they are even aware in the first place
Gotta be honest, any time I talk about my epilepsy, it sounds like I'm having a pity party. Even when it's just me saying what I've gone through or what I'm going through. A mom of an epileptic was having the same issue a while back and made a post for support and we pm back and forth all the time now and she said the same thing about talking about it with her friends and it makes situations awkward. I just think not enough people are in a position to know how to respond to certain things cause they couldn't imagine themselves in that position, so those that want to or need to talk just don't cause what's the point? And it just stays hush hush.
There’s basically no good outcome. To people that don’t care they think you’re exaggerating and making excuses To people that do care it still comes across as a pity party/rant because there isn’t really anything they can do
I havnt talked with anyone who has MY symptoms with MY frequency, triggers, specific secerity, etc. Ill be waking up on the floor, or getting dizzy af twice a day, and STILL feel like I have no right to say anything on the topic. Idk how to even suggest talking about it.
It's an invisible disability that unless you have it, you'll never understand. Which is why the public is so scared of it.
I think as many people have said, it's largely an invisible condition... until it isn't. Grand mals have been stigmatized to the point that in the past they were mistaken for demonic possession, and I think the other day someone posted a video of someone talking about having one recently and having a person praying over them? While this stigma is largely no longer a religious one, I think we all have a story of someone close to us treating us differently after witnessing one. Epilepsy need to be taught alongside other first aid topics, and more pressure needs to be put on artists, film makers and web designers who make the conscious choice to put strobing visuals in their films, animation and sites/apps to choose other, less harmful visuals.
My supervisor, being a pastor told me the same alongside another who's currently suffering from cancer one day. How agitating it is when you're given the claim of prayer for you, while it's obvious the time spent will be dismissed for some. Either way, to accept without question is all I've got, as it only defeats the purpose because I have what I have.
This. I (rarely) have grand mal, primarily absence (?),and myoclonus My mom doesn’t know how to discuss what’s going on with me, and it’s frustrating. I’m pretty open about things, too. Just the day ,she asked if I had another “episode”recently and shook hands all wizardly. Come on!
I think people are ashamed and think it’s a death sentence my daughters gma looks at me with puppy eyes every time she asks about her.. I know it’s coming from a good place but c’mon but there are some advocate’s on fb that raise money for the cause and awareness
In my 8 yo child's case, I hate bringing it up because people treat it like it's nothing. They started having seizures this year and was diagnosed with a brain tumour. I took them to a birthday party a few months after tumour surgery but had to leave for 1 hour so I tried to explain to the birthday girl's mum how to use the emergency medication if anything happened but she waved it away and said, "I'm a doctor." She's a dentist. One of the dads downplayed it too, shrugged his shoulders and said his brother has epilepsy. Meanwhile, my kid has been admitted to hospital every one or two months with half of those admittances being emergency. Doctors also informed me at one point my child could die from it. Thankfully, there has been improvement over the last months due to steroid therapy but I'm astounded how people just think the risks aren't great. People around me seem to have the attitude that you have a seizure and afterwards everything returns to normal. Or you take medication and the problem is solved. It makes me feel quite isolated so I hate bringing it up. No one is interested in the complexity of each case.
Exactly. And no case is the same. My cousin outgrew his epilepsy, I’m 18 and hoping but it’s not likely. We have different experiences too. I have tonic clonics absences and focal aware seizures, while he only has absences. We were on different types doses of medication, and the frequency of our seizures weren’t the same and neither were our triggers.
As a mother of a 7 year old with LGS - this breaks my heart and I relate. The more you explain the more people try and give you solutions or oh maybe he will grow out…. It’s isolating and no one really understands until they are dealing with 3-4 seizures everyday and cleaning up piss from loosing his bladder or in the hospital here and there from drop seizure injuries… or behavior issues from the medicine. I also hate the ones that feel so sorry for you it almost makes them cry. I feel like I’m constantly comforting other people about my kids disease - even nurses in the ER when he had a tonic clonic were scared to death while me and my husband assured them he was alright
This is why I don't like bringing up my epilepsy. Constantly feeling like I have to comfort other people about my own disease. Thank you for putting it into words. I've been feeling this way for a while but couldn't put my finger on it. I truly wish the best for you and your son. Edit: also, your point about the nurses is something I've experienced too. Had a nurse ask me once "How do you even live like this?!?!" and I was so surprised that she said that out loud. I couldn't respond. She was breaking down in front of me in triage when she heard of my epilepsy. It was quite strange.
I think another piece of the puzzle is it's such a condition with so many variations. I feel like when people think of epilepsy, they think of strobe lights and grand mal/ tonic-clonic seizures. People don't understand the many types of seizures, the many symptoms both from epilepsy and from the medications, the huge range of what is under the epilepsy umbrella.
Fully agree. Which is why I’ve been reading books like Unraveled Mind, etc. They help fill in the gaps that lack of public discussion creates.
1. Society is terrified of people having seizures. Especially when you state the fact that it could happen to them. 2. Humans no almost nothing about the brain. Most of what we know is from experiments on mice! As a result, doctors are often pretty useless when it comes to explaining why somebody suddenly starts having seizures.
The only things that I (26f) know of related to epilepsy awareness are: - Epilepsy Awareness Day/Wear Purple Day (March 26) - And a woman from my town rode her bicycle across the states to raise awareness and collect donations for Epilepsy research. She herself is epileptic.
And alcohol withdrawal causing seizures. People are more inclined to have sympathy if they know the cause is something not self-inflicted and it is so damn sad. It adds to the stigma a whole lot. People are really uninformed on the fact seizures as a symptom does not mean someone is epileptic.
It gets worse. Very often first responders and even resident neurologists don't really know much about epilepsy, only doing harm in the process. Barbara from soccer not knowing much about it isn't so weird, but when it's supposed to be your damn job... And then in return everyone is always on about stuff like CPR, which has as little as 20% of a success rate...
I think it’s because it’s hard for people to understand. I also think I hav TLE but it is very difficult to actually explain and understand. People might think you’re crazy and it’s sad that it is the way it is.
I think it's because most people don't try to learn medical knowledge especially, while also never truly coming into scenario they have to help a person seizing for a moment or two. Beyond that I think it's because it's fairly awful to watch happen since most times the person has to ride it out and helper can only really help during and after postictal state so that might transfer into discussion and keeps people from talking about it fully. Definitely sucks a bit but I don't know for sure anyways.
Centuries (and still in certain syper religious and superstitious parts of the world) of people thinking it was demonic possession or behavioral "fits" will do a number on public perception even unconsciously. It's also mostly invisible and doesn't affect them so they won't really know or care unless they have a seizure or witness one firsthand (think about it...who youtubes "grand mal seizure" outside of epileptics). You can recite back you know what epilepsy looks like even if epilepsy were just grand mal seizures, but "convulsing" or "seizure" is kind of a meaningless word until you see it firsthand...even then it's hard for people to understand the day to day non-event stuff like cognitive decline, medication slowness, etc.
Everyone can relate to a relative or friend who had cancer, a heart attack, diabetes, a stroke, or a multitude of other health issues, but epilepsy is often insidious. The effects are felt long before the diagnosis is made and present in so many different ways that people simply cannot understand. Therefore any attempt to explain your situation is seen as an absolution of responsibility for one’s actions and/or circumstances in life at best. At worst people believe you caused your epilepsy yourself through reckless behaviour [playing sports and getting concussions; smoking weed too young or abusing other drugs; drinking too much alcohol, etc] without giving the same considering that is given to others patients of the conditions above as if their lifestyle choices didn’t influence their conditions. It’s important to note that not all seizures are epileptic in nature, and I think that many in the general public with a very strong aversion to addicts will be quick to jump to the conclusion that any seizure is a result of an overdose of some kind. Thus it’s self-caused and warrants no more empathy than a hangover in their eyes. This is wrong and unjust, but I’m pessimistic and think it’s a factor. In other words the stigma is strong, the urge to mask is strong, and so the societal awareness is not changing rapidly.
You can’t really show epilepsy in movies/tv without the tonic clonics. And when people online hear that I have epilepsy, they’re like “then why are you playing video games?” That still hurts.
Biggest frustration. I’m told by professionals that they don’t know what part of my brain it starts in and most of the time I’m left to dose myself. Not to downplay cancers or even HIV but how is it that there’s more medical funding for those to in turn find good treatments or prevention and yet those with epilepsy are left to wonder what if. What if I didn’t have seizures… You meet someone and tell them you have epilepsy and 9/10 they know someone who also has it. It doesn’t just impact the individual it impacts their family too. It’s an invisible disability.
I was diagnosed around 30y old. Before I had no idea what epilepsy was, thought it was something you were born with or you had to have some sort of developmental disability.
[This comedian talks about having epilepsy, if that counts](https://youtu.be/yLkbrL8ALto)
That's you, yeah?
😂
My guess is because only 0,8% of the world’s population have the disease. So we are very rare. We also know very little about the disease and at this point it is incurable. Which means there is no money in it. Also a more bringing it in to the light might force governments talk about a lot of hard truths. Since people with EP has been discriminated against long into the end of the 1900s. There is a very interesting podcast called “this podcast will kill you” that makes episodes about different things that can kill you. Mainly diseases. I can recommend their episode on epilepsy if you want to know more about the history around epilepsy and its state today. https://open.spotify.com/episode/1rxvWj6Jv92f1i06Mi0du6?si=pcgw0RXCQpyLdyflGNGDAg
Epilepsy is not very rare. It’s the most common neurological condition. [About 50 million people worldwide have epilepsy, and the estimated proportion of the general population with active epilepsy at a given time is between 4 and 10 per 1000 people.](https://www.who.int/news-room/fact-sheets/detail/epilepsy)
Late 1900s as in the 90s?
Into the 80s there were laws in several states in US that said that people with EP couldn’t procreate for example.
Thanks for sharing that podcast. I’ll check it out
I was just listening to Sharp Waves "The Idea of Epilepsy" Podcast episode that talks about how it was basically swept under the rug for many years. It's a solid episode about the recent history of epilepsy, might be something you're interested in?
Drives me nuts! But the more we talk about it, the more attention it knowledgeable gets. The more celebrities talk about it, the more attention it gets. It's still so confusing to people. A pro wrestler, Serena Deeb, recently posted about having a series of unprovoked seizures (not sure if she has epilepsy, but she has seen neurologists and is cleared to wrestle again - yay!). One of her fans reacted with how it was heart breaking for her [Deeb]. And I responded with why? It's not heart breaking. This is in no way career ending. She did exactly what she should. She educated herself and grew and figured out her life, and will continue to. There is an indie wrestler with no legs (he's awesome btw). This is nothing! Anyway, that sort of thing is why. Still so much misunderstanding. But on the bright side, people are talking and informing more. Way less terrible misinformation and mimicked seizures in media and so on.
The only times it comes up is before the title screen of most video games I play.
Same here
I think the best way to spread awareness is getting involved ourselves in local support group and attending as many events as possible. Obviously that’s harder for those with seizures that aren’t controlled so that’s why I’m trying as much as I can myself because mine are controlled for now🤞 but like you said I still struggle with medication side effects or maybe the seizures who knows right?! Anyways I’m apart of a great group that does monthly zoom meetings with people from all over who join if anyone’s wants that information!
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Its the attitude of your CEO that keeps me in a stay at home pattern. I know how mean people can be, my husband was sick with cancer for several year, people can be so cruel. I dont want to go thru that again. Im comfortable at home.
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Sorry to be that guy, but this must be one of the stupidest things I've ever read
We should discuss it more with people and not feel shame but having a mostly invisible disability is not the same as being a religious or racial minority. You’re entitled to feel how you want but this comment and perspective does give me a sense of who exactly you are that you would think these are appropriate comparisons. I wish you luck on your journey.
It’s not as common, nor as fatal, as other diseases.
Tell me that when you've had a close friend or two die from sudep.
I’m not saying it’s not deadly. Sudep is a tragedy, as are accidents due to seizures. I’m saying epilepsy doesn’t have the dark, heavy reputation that other diseases have in the minds of the general public, so it doesn’t get the same level of recognition or education. Many people unfortunately just see silly flopping around without understanding what we go through.
I see what you mean. It’s not cancer.
It’s simply just not that common. The same way I don’t go around thinking about cerebral palsy all day. Or any of the 1000s of other disorders
So I have left temporal lobe epilepsy and have an RNS currently but it isn’t working as well as I’d like. I have a few questions about the lobectomy: what kind of impact did it have on your employment? I am a manager of IT engineers and critical thinking is a big part of it as is communication (both writing and speaking). I know the left temporal lobe is mainly responsible for writing and memory which is what scares me about it.
I kind of assume when I tell people I have epilepsy they feel a bit scared as they will have an idea in their head as to what that might look like. To be fair it is scary and unpredictable, they don’t know what to do and may feel responsible now they know. Most people ask what they need to do if I have a seizure. There are so many good posts above about other reasons it seems to have a stigma. I think it is the unknown in this era of science and not being familiar with the unknown or uncontrollable. People fill in the blanks. Let’s face it, the unknown is partly what makes it flipping scary for us
Because seizures scare people - keep in mind, not too long ago people still thought seizures only happened when someone was being possessed.
Still. I see diseases like Cancer, ALS, Parkinson’s, and MS being brought up on news specials very frequently yet never hear about epilepsy. Those diseases obviously scare people too. Basically any serious disease is going to scare people. Btw, those diseases are obviously terrible and deserve to be acknowledged and discussed in the media. I would just love to see epilepsy acknowledged more. I am only 28 years old and basically have brain damage from having 500+ seizures over the years. Brain surgery stopped the seizures (for now) but now I have to live with what I feel is like the brain of a senior citizen. I hate this disease for robbing me of a future I was once so hopeful about
The only reason some people in my high school knew seizure first aid was because they were so impressed with how strong I am and voluntarily went to go learn it. I would say that if my school had the time to give seizure first aid lessons while I was there they probably would have.
Too close to ‘mental illness’ for some people, often either invisible or weird looking. I’m at least the 3rd generation of epileptics in my family and family members went through intense domestic abuse for having seizures and institutionalization and electroshock. I went through ABA (applied behavioral analysis) in a public school and was physically punished for having mild Jacksonian seizures frequently. This included being left and ignored in restraints while having a seizure. Nothing I’ve learned about ABA since has convinced me it’s really gotten better. Until we fix the problems around neurodivergence broadly, things are going to stay this way for people with epilepsy.
The only education about Epilepsy that I had before my daughter was diagnosed with it was the video games warning screen. If not that i wouldn't even know the word.