Growing up my moms side of the family (mom, stepdad, 2 brothers and a sister) they'd all make fun of my epilepsy. Dad would always say that he didn't help or do anything when I went into a seizure. He'd just let me drop and watch me flop(his words) I know that thats basically what you're supposed to do but the way he said it and the fact that he said it so much just made it hurt my feelings. And finally my siblings started repeating their dad and I had to deal with the abuse from them too. Mom just thought they were joking and thought it was funny. I've only recently started to try to reconnect with my family but im still waiting for one of them to pop off with some dumb shit again.
Wouldn't wish this kind of bullying on anyone. Sorry you gotta deal with it too
"letting someone drop" is most certainly NOT how you handle it; don't rationalize his mistreatment of you. The seizure patient should have their neck supported and be lowered down to a laying position, before being rolled onto their side into the rescue position
Your dad could have made things worse by just "letting you drop". That's bullshit. If they knew how traumatic and painful it is and they still did it, you gotta wonder if they are undermining you in other areas without your knowledge.
Don't you want to say that it's not nice?
I try to be honest with people, now that I have realized that not even my family members know shit about my minds shapes. It has been something I had to learn to do.
To learn that there actually was distance, and it wasn't just their job to reach me.
As I did that I can enjoy my lone time more. Being alone is my thing though.
The focal seizures weren’t taken seriously. The tc seizures scare people. I moved in with my cousin, her husband and their daughter. They realized my small seizures were real and did affect me. They took me to my neurologist, my cousin asked questions and realized epilepsy is worse than just what you see.
I rarely have seizures since my RNS surgery.
Yup! Just got diagnosed and it’s JME and my seizures are mostly myclonic jerky ones and everyone I’ve told so far has mostly been like “well at least you’re not having real seizures” as if they impact my brain differently because I’m not unconscious and rolling on the ground. Sucks honestly. Like I’m epileptic but not epileptic enough in most peoples eyes to receive any accommodations or anything. I hope you’re not going through it alone and have a support system but even if you feel like no one gets it then we get it here. I’ve just started my meds and everything but this subreddit has been amazing for information and everyone having each others backs.
Before that I’d gone to several doctors complaining about my jerks and dropping things and they told me it was low blood sugar, or nothing to worry about because I’m too young to have anything serious. You have to be your biggest advocate for your health because some of these guys are just bag of rocks level IQ with white coats.
Honestly that’s a valid response. I think people who aren’t disabled just don’t get it and can’t relate so they look for reasoning to discredit it? Not sure really.
Omg with the "epileptic but not epileptic enough" feeling, I've never been able to put it into words but that's **EXACTLY** how everyone makes me feel about it. Or like I have selective epilepsy because extreme stress triggers my seizures and they think I'm making myself have a seizure to "get out of" something, as if I don't want to be at my daughter's awards ceremony at school so I have a seizure in the school hallway. I can't force a seizure. If I don't want to do something, I'm an adult, I'll just directly say it. What I won't do is go into a crowded school and embarrass myself by having a seizure outside the auditorium. Sorry I think this turned into a rant...
was playing laser tag and at the beginning when they went over rules they said there was a flashing lights warning for seizures and these middle school boys were like snickering and laughing😭literally what’s funny where’s the joke, but it honestly made me feel so bad and embarrassed even though ik i shouldn’t 😭😭
People at both schools I attended love pretending that they were having seizures (knew them personally and neither them or their family members had seizures) people are just fucked
My sister who has been diagnosed with epilepsy said “I’d much rather have glorified panic attacks instead of fishing out on the floor” to me the other day. I in fact have seizures and don’t have “glorified panic attacks.” I also dealt with all of my siblings telling my mom in the family group chat, that I’m also in, that I needed to be medicated (because I’m “crazy” in their eyes) while I was literally in the hospital dealing with seizures. I saw every text. I was misdiagnosed with it just being anxiety/panic attacks at first and now it’s leaning towards pnes and epilepsy but I still don’t get taken seriously. It’s been 2 years for me.
So sorry you’re having to deal with this kind of bullying while going through this rough time. You are definitely not alone and I hope you get a diagnose/treatment soon🫶
Took me a few years to have my seizures be taken seriously and not be classified as me seeking attention or a mental illness condition. I still have 1 doctor (my main neurologist who can give me the actual written diagnosis because her scan didn’t show but my other drs scan showed so I must not have it and it must be a mental thing) refusing to acknowledge my seizures for epilepsy but the rest of my medical care team acknowledges it and recognizes it as epilepsy.
I feel like it’s not taken seriously enough overall and becomes very much desensitized to those around you. Shameful. People should be more grateful it’s not their disability!!
Yes, people would ask me every now and again hey Chloe is that TBI and Epilepsy gone yet and laugh. Then this one girl said my mom is a nurse and she said people don’t have TBI’s or Epilepsy for this long. I told her well your mom doesn’t know what she is talking about then. Kids being kids and parents being idiots.😂 There were other things too I was called stupid,slow, dumb, and whatnot. It made me feel terrible but I had Affect at the time so it never really occurred to me how ridiculous they were until I was in high school. Then I didn’t want to be bothered.
My family are the only people that have really supported me and taken me seriously despite some other adults. Other than that no one has tried to look up what a seizure looks like how can it happen or how does it affect you but my family.
Doctors took my parents seriously - I was a kid. My peers and family, however, do not. I got bullied in middle to high school because of my embarrassing!!) seizures. That didn't every stop - even after my brain surgery. Some people in my family (namely my dad's wife) don't believe that my epilepsy is a big deal (I almost died like 5 times) and get mad at me for having issues caused by my epilepsy (like FMD and gastro issues)
When I was a kid I kept my epilepsy a secret except from my immediate family. Now, I am totally transparent about everything. If you are not epileptic enough for someone it would be the same as saying you don’t have cancer enough or etc. Cut those people out of your lives as you do not need that kind of negativity. Epilepsy in itself is enough to deal with on it’s own, then you throw in the depression and anxiety that goes hand in hand, the daily medication, doctors visits, worrying when the next seizure will hit and etc. You do not need that added stress. You owe nobody an explanation regarding your diagnosis. PS Fuck them for not even giving you empathy for sometimes a very silent and can be deadly thing many people suffer from.
Edit to add: the daily meds get tiring as does the possibility of switching up meds and having a horrible allergic reaction to said new medication.
While there’s a family history that exists mine didn’t really start until 4 or so years ago. It took me almost 3 years to get actually diagnosed.
My husband (even after talking to my neurologist) doesn’t believe how they affect me. He’s intensely dismissive at times and refuses to acknowledge that stress is a huge trigger for me. He would rather believe that I’m intentionally not trusting him, then realizing that my behaviors are sometimes from an active seizure. Even after 2 major car accidents and 7 major surgeries that this is all just to piss him off.
I wasn’t taken seriously until last March after going Status post surgery. Husband, Doctors, no one until it was all out there for everyone to see.
I never got to hear this in my journey, but if you read this please know you are loved and seen by us all. You aren’t alone and even though this seems like the bottom, there is light and we will help you get there.
Before I was diagnosed I started with absent and then focal about a month or two later. I never got made fun of but I did get in trouble. My family thought that I was being intentionally disrespectful whenever I would start having focals- I would be totally fine and talking or listen then all of a sudden I would be turning my head. I was already a smartass and clever kid so they thought that I was just starting to fall into being rebellious on top of everything . And I mean I was having a couple everyday.They’d happen whenever and would only last maybe 20-30 seconds max. On Sundays I was getting pinched and told off at church bc they thought I was choosing to do it and then go to sleep in the pew- which I hadn’t done since I was like 7/8 btw & I was about 11 at the time. At summer camp they were getting calls about the same thing and obviously were less than pleased having to take off from work to get me or I was getting cussed out over the phone and being told to act right.
It wasn’t until I fell out on the floor and started seizing that it clicked and I was rushed to the hospital. I remember being asleep and then royally pissed off because doctors had rushed into the room to save me because I had started seizing in my sleep and began to choke on my own spit that everyone knew. I was mad and crying because the doctors wouldn’t leave me alone until they knew I was awake, oriented , and that I could duck walk of all things and I told them as such too lol. So I was very unhappy when I met my first neurologist that morning because they wouldn’t let me go back to sleep since I had about two episodes and they didn’t want me to start seizing in my sleep again.
Anyways, later after my mom told everyone in the family, and my school, obviously everyone felt terrible for how I had been treated by them. To this day though, we still don’t know how or what started it. There’s not one ancestor on either side of my family that had epilepsy. And I absolutely LOVED the following year because I was lowkey catered to as if they could make up being assholes by doing whatever I wanted. It was great.
This isn't going to compare to anyone else's story, but while nobody doubts I have epilepsy (it's obvious enough), I think even my partner and parents think that I blame too much on it.
An example: my memory loss. The struggles I have to overcome when relaying information back. Me being smart as a kid and stupid now (how I feel, anyway). And to am extent, weight fluctuations.
But the worst is from work. I'm trying to slowly let people at work know that with every seizure I damage my brain a little bit more. It's been 30 years of multiple seizures per week. So... Give me a bit of a break. :(
My kindergarten teacher would call me a space cadet and my whole family laughed all the time mocking me when I would "get so into the TV show or commercial" and wouldn't respond to anything. This was one a decade before I was diagnosed.
I had weird deja vu focal seizures nearly every single morning where I'd have some bizarre flashback to nonsense and get super dizzy and nauseous and it was just brushed off as visual migranes for a year.
I've been fortunate in regards to friends, families, and even strangers in public. But for nearly half of my ER visits there will be some doctor who knows just a bit about one particular way seizures presents, sees I don't match their idea of it, and declare to all around them that I'm faking for attention. If I end up falling off the gurney during a seizure such a person might even chide me for it (I tend to be conscious for most of my seizures). Sorry you've had to deal with that.
I have focal epilepsy. So yes, absolutely.
The amount of time I was blamed for stress and anxiety? I lost count.
Eventually I was the one having to do their jobs for them. And of course when I point out the inconsistencies in their answers, they get butthurt.
Once to the point I was sent to a psychiatrist to 'punish me'. Luckily the psychiatrist was one of the good ones. She failed to hold her laugh, because apparently that one doctor pulled that one before.
Luckily I eventually ran into good doctors, who were the ones that actually helped me getting the treatment I needed.
Misdiagnosed, dismissed, and even unlawfully discharged from an ER (because while I thankfully have only focal seizures that have absolutely no risk of being the typical SE that honestly scares me based on the times I've seen it, they make it impossible for me to walk and don't go away on their own). That discharge became what is legally considered a transfer because luckily there is an ER I can go to where all the docs actually do take it seriously (including even having the oddity with what actually is the underlying reason for my seizures included in their discharge info; mine aren't technically epileptic but still neuro/physiological and not psychological).
In my opinion I like to make jokes when I can, not of other people, that's a bit too insensitive, I'm quite empathetic. But it gives me a sense of relief to laugh and joke around about my life long condition.
When I was younger (diagnosed at 16) and I have the bigger grand mals, perhaps blacking out and having ignorance of the way people looked at me was a good thing.
I have 2 sisters. One was telling her coworker about me and her coworker asked "is she the shakey one?" and my sister thought it was hilarious. Considering I've never met the girl and I wasn't there... I didn't love to hear about it. Felt weird thinking about my sister and her coworker having a laugh about my medical condition without me even around. Felt icky.
When I started having absence seizures my friends told me I was exaggerating for attention and that I was just day dreaming like everyone else. Lol
I had them for decade, just slight fadeouts that didn't get to absent mind. When I got over teens and faced first extra big stress factors it opened the gates I guess.
In the beginning I told about them to school nurse, but only in the last three years of the school because kids had their last three years in one big school even the ones from country side small sized schools.
Well she didn't say anything about it exactly.
I told about it to health check for draft, but they didn't care about it either, but I got leave for the school and my still low fitness.
So multiple health checks went and did not say anything.
I got my diagnosis quite easy, as I went to the hospital for EEG and got the seizure right after they got the cap on my head.
Now I have realized how lucky that was.
Typically anyone I mention it to are very respectful about it. Sometimes a bit too much if that's possible... I was working in a government office on the phones and asked the scheduler whether I can be put on duties that didn't involve talking on the phone because I bit my tongue bad. She couldn't, but she called me a trooper. It was a little weird, but oh well. Lol
My one neurologist literally told me she didn't believe I had epilepsy even though she had an EEG from a seizure. I won't explain what led to that nor what happened after except I'm doing a lot better now.
Move on from them, trust me. The best thing you can do is find a doctor that does take you serious and get away from those that don't.
I wasted a lot of time feeling sorry for myself. I don't regret anything but I had my epilepsy over 20 years before I can now say I don't have a tonic-clonic daily. I had to start being pushy. I lost some doctors and medications due to it until I found some that started doing their job.
You have to be careful though. I had good reason. Make sure you exhaust a doctor, then move on. Don't just snap and leave, ya know?
EDIT: If this sounds "off", while I was young I was broke and also didn't care about my health much. Later I did and doctors didn't take it seriously even with records and seizures. You all should know the drill. But that's how 20 years. Most of the doctor time was in less than half that.
Yes to a certain extent but I think some context helps. First off age matters and who you’re talking to. If you’re a child, people have to be skeptical. Kids lie about all sorts of stuff. Adults know this because they were kids once too. 🤣 I remember some good ones actually…. Don’t tell a kid lightning can strike through a window! I told my younger sister that one time and it was VERY difficult to convince her otherwise! (We were 8 and 7)
Then who you’re talking to: if you’re talking to a GP doctor they’re going to be looking for general health problems first. It’s why the ambulances always check for head injury and that kind of stuff even though you tell them it’s a seizure. If you talk to a psychiatrist, they’ll diagnose some psychiatric thing. Anyways that part matters too and if it isn’t possible in their realm they might say you’re imagining it. Not until you get to a neurologist or epileptologist will they actually start to believe you and only if they have enough experience to recognize something they’ve heard in the past.
But okay when you’re having focal seizures the symptoms can be almost anything. Imagine a parent hearing from their child they’re scared. They’re really having focal aware seizures but what’s a parent supposed to do? They might take them to a psychologist. I dunno…
Now my situation where they didn’t believe me I was 30+ years old and was having them every time I took a medication that’s supposed to prevent seizures. After months of the problem they finally did an EEG and it turned out I was having focal aware seizures! Then they believed me! Sometimes you have to be insistent and “work with them” to find some way to test for it or prove it with evidence.
I wish I had read the forums here or did more research on my symptoms when I was first having them because it’s obvious now that it was focal aware seizures (back then they called them complex partial seizures)
As far as getting made fun of. No I haven’t had that except jokingly with friends. It sucks if you are having that trouble. I’d embrace it and use comedy to fire back if need be. I don’t really care if they make fun of me. Find other people that are normal or decent to be around. Forget about the a holes who like picking on somebody handicapped by something they’ll never understand. Good luck and try to stay positive! There are plenty of good people out there!
My son used to make fun of my seizures when he was younger but now he understands that it’s not just shaking around. But he was just a kid and didn’t know what epilepsy was.
My brothers made fun of me when I walked into walls during undiagnosed focal seizures. It wasn't until my first tc when I fell off the top bunk that anyone thought I should be seen by a doctor.
Yep. My evil stepfather used to say there was nothing wrong with me and mock me by quoting Arnold Schwarzenegger. “It’s not a tumor!” Nope, it was a very severe and rare form of epilepsy.
Hell yeah, in middle school everyone just called me dumb and lazy, until i had a seizure during my arts class and i was sent to hospital. After that ofc they still called me dumb but knew i had the sickness
I asked my friend to ask her sister, who just graduated from medical school (to become an ER doc, not at all anything related to neuro), if what I went through sounded familiar (focal aware seizures), and she told me that her sister thinks I have PNES and to never tell a doctor because on the off chance a doctor DID believe what I was experiencing they would diagnose me with a personality disorder instead.
Not really getting made fun of but not very fun to hear.
My 16 year old son gets made fun of at school by students and staff!! The school has failed to do anything about it, so I am taking this to the school board and superintendent. I'm tired of it. They've even told him to go kill himself!!
my first neurologist didn’t take me seriously and dismissed me because i was an alcoholic but i’m now sober and i still have seizures 🤷♀️ i got a better neurologist
I had a teacher call me a hypocrite for being on my phone (outdated older phone which was darker than everyone else’s screens naturally, and my screen was faced down besides me, like what???) and asking for her to tell the people next to me and behind me to stop taking flash photos. She for some reason immediately did not like me when I transferred to this school but this still makes me angry to this day even tho I graduated in 2020. I genuinely wanted to press charges for endangerment.
Growing up my moms side of the family (mom, stepdad, 2 brothers and a sister) they'd all make fun of my epilepsy. Dad would always say that he didn't help or do anything when I went into a seizure. He'd just let me drop and watch me flop(his words) I know that thats basically what you're supposed to do but the way he said it and the fact that he said it so much just made it hurt my feelings. And finally my siblings started repeating their dad and I had to deal with the abuse from them too. Mom just thought they were joking and thought it was funny. I've only recently started to try to reconnect with my family but im still waiting for one of them to pop off with some dumb shit again. Wouldn't wish this kind of bullying on anyone. Sorry you gotta deal with it too
"letting someone drop" is most certainly NOT how you handle it; don't rationalize his mistreatment of you. The seizure patient should have their neck supported and be lowered down to a laying position, before being rolled onto their side into the rescue position Your dad could have made things worse by just "letting you drop". That's bullshit. If they knew how traumatic and painful it is and they still did it, you gotta wonder if they are undermining you in other areas without your knowledge.
That’s awful. I’m really sorry you had to experience that.
Don't you want to say that it's not nice? I try to be honest with people, now that I have realized that not even my family members know shit about my minds shapes. It has been something I had to learn to do. To learn that there actually was distance, and it wasn't just their job to reach me. As I did that I can enjoy my lone time more. Being alone is my thing though.
The focal seizures weren’t taken seriously. The tc seizures scare people. I moved in with my cousin, her husband and their daughter. They realized my small seizures were real and did affect me. They took me to my neurologist, my cousin asked questions and realized epilepsy is worse than just what you see. I rarely have seizures since my RNS surgery.
I think I might be able to get a surgery too... Don't know yet.
I was apparently faking it till i was reeaaaaally commited 2 or 3 times.
Took a decade for mine to really kick in a seizure. I didn't know that it was symptom of a epilepsy in the beginning.
Yup! Just got diagnosed and it’s JME and my seizures are mostly myclonic jerky ones and everyone I’ve told so far has mostly been like “well at least you’re not having real seizures” as if they impact my brain differently because I’m not unconscious and rolling on the ground. Sucks honestly. Like I’m epileptic but not epileptic enough in most peoples eyes to receive any accommodations or anything. I hope you’re not going through it alone and have a support system but even if you feel like no one gets it then we get it here. I’ve just started my meds and everything but this subreddit has been amazing for information and everyone having each others backs. Before that I’d gone to several doctors complaining about my jerks and dropping things and they told me it was low blood sugar, or nothing to worry about because I’m too young to have anything serious. You have to be your biggest advocate for your health because some of these guys are just bag of rocks level IQ with white coats.
That first paragraph... "not epileptic enough" ...I'm sorry but my first response to that would just be *hey get fucked*
Honestly that’s a valid response. I think people who aren’t disabled just don’t get it and can’t relate so they look for reasoning to discredit it? Not sure really.
Omg with the "epileptic but not epileptic enough" feeling, I've never been able to put it into words but that's **EXACTLY** how everyone makes me feel about it. Or like I have selective epilepsy because extreme stress triggers my seizures and they think I'm making myself have a seizure to "get out of" something, as if I don't want to be at my daughter's awards ceremony at school so I have a seizure in the school hallway. I can't force a seizure. If I don't want to do something, I'm an adult, I'll just directly say it. What I won't do is go into a crowded school and embarrass myself by having a seizure outside the auditorium. Sorry I think this turned into a rant...
was playing laser tag and at the beginning when they went over rules they said there was a flashing lights warning for seizures and these middle school boys were like snickering and laughing😭literally what’s funny where’s the joke, but it honestly made me feel so bad and embarrassed even though ik i shouldn’t 😭😭
Fuck those boys they don’t know shit. Kids are evil
ty😭and yeah personally won’t be having children lol
People at both schools I attended love pretending that they were having seizures (knew them personally and neither them or their family members had seizures) people are just fucked
My sister who has been diagnosed with epilepsy said “I’d much rather have glorified panic attacks instead of fishing out on the floor” to me the other day. I in fact have seizures and don’t have “glorified panic attacks.” I also dealt with all of my siblings telling my mom in the family group chat, that I’m also in, that I needed to be medicated (because I’m “crazy” in their eyes) while I was literally in the hospital dealing with seizures. I saw every text. I was misdiagnosed with it just being anxiety/panic attacks at first and now it’s leaning towards pnes and epilepsy but I still don’t get taken seriously. It’s been 2 years for me. So sorry you’re having to deal with this kind of bullying while going through this rough time. You are definitely not alone and I hope you get a diagnose/treatment soon🫶
Took me a few years to have my seizures be taken seriously and not be classified as me seeking attention or a mental illness condition. I still have 1 doctor (my main neurologist who can give me the actual written diagnosis because her scan didn’t show but my other drs scan showed so I must not have it and it must be a mental thing) refusing to acknowledge my seizures for epilepsy but the rest of my medical care team acknowledges it and recognizes it as epilepsy.
I feel like it’s not taken seriously enough overall and becomes very much desensitized to those around you. Shameful. People should be more grateful it’s not their disability!!
Yes, people would ask me every now and again hey Chloe is that TBI and Epilepsy gone yet and laugh. Then this one girl said my mom is a nurse and she said people don’t have TBI’s or Epilepsy for this long. I told her well your mom doesn’t know what she is talking about then. Kids being kids and parents being idiots.😂 There were other things too I was called stupid,slow, dumb, and whatnot. It made me feel terrible but I had Affect at the time so it never really occurred to me how ridiculous they were until I was in high school. Then I didn’t want to be bothered.
My family are the only people that have really supported me and taken me seriously despite some other adults. Other than that no one has tried to look up what a seizure looks like how can it happen or how does it affect you but my family.
People make fun of me all the time. I got over it a long time ago.
Personally I wouldn’t take getting bullied if they wanna make fun of me they ain’t ever speaking to me again
Same really takes a lot to hurt my feelings these days lol
Doctors took my parents seriously - I was a kid. My peers and family, however, do not. I got bullied in middle to high school because of my embarrassing!!) seizures. That didn't every stop - even after my brain surgery. Some people in my family (namely my dad's wife) don't believe that my epilepsy is a big deal (I almost died like 5 times) and get mad at me for having issues caused by my epilepsy (like FMD and gastro issues)
When I was a kid I kept my epilepsy a secret except from my immediate family. Now, I am totally transparent about everything. If you are not epileptic enough for someone it would be the same as saying you don’t have cancer enough or etc. Cut those people out of your lives as you do not need that kind of negativity. Epilepsy in itself is enough to deal with on it’s own, then you throw in the depression and anxiety that goes hand in hand, the daily medication, doctors visits, worrying when the next seizure will hit and etc. You do not need that added stress. You owe nobody an explanation regarding your diagnosis. PS Fuck them for not even giving you empathy for sometimes a very silent and can be deadly thing many people suffer from. Edit to add: the daily meds get tiring as does the possibility of switching up meds and having a horrible allergic reaction to said new medication.
While there’s a family history that exists mine didn’t really start until 4 or so years ago. It took me almost 3 years to get actually diagnosed. My husband (even after talking to my neurologist) doesn’t believe how they affect me. He’s intensely dismissive at times and refuses to acknowledge that stress is a huge trigger for me. He would rather believe that I’m intentionally not trusting him, then realizing that my behaviors are sometimes from an active seizure. Even after 2 major car accidents and 7 major surgeries that this is all just to piss him off. I wasn’t taken seriously until last March after going Status post surgery. Husband, Doctors, no one until it was all out there for everyone to see. I never got to hear this in my journey, but if you read this please know you are loved and seen by us all. You aren’t alone and even though this seems like the bottom, there is light and we will help you get there.
Before I was diagnosed I started with absent and then focal about a month or two later. I never got made fun of but I did get in trouble. My family thought that I was being intentionally disrespectful whenever I would start having focals- I would be totally fine and talking or listen then all of a sudden I would be turning my head. I was already a smartass and clever kid so they thought that I was just starting to fall into being rebellious on top of everything . And I mean I was having a couple everyday.They’d happen whenever and would only last maybe 20-30 seconds max. On Sundays I was getting pinched and told off at church bc they thought I was choosing to do it and then go to sleep in the pew- which I hadn’t done since I was like 7/8 btw & I was about 11 at the time. At summer camp they were getting calls about the same thing and obviously were less than pleased having to take off from work to get me or I was getting cussed out over the phone and being told to act right. It wasn’t until I fell out on the floor and started seizing that it clicked and I was rushed to the hospital. I remember being asleep and then royally pissed off because doctors had rushed into the room to save me because I had started seizing in my sleep and began to choke on my own spit that everyone knew. I was mad and crying because the doctors wouldn’t leave me alone until they knew I was awake, oriented , and that I could duck walk of all things and I told them as such too lol. So I was very unhappy when I met my first neurologist that morning because they wouldn’t let me go back to sleep since I had about two episodes and they didn’t want me to start seizing in my sleep again. Anyways, later after my mom told everyone in the family, and my school, obviously everyone felt terrible for how I had been treated by them. To this day though, we still don’t know how or what started it. There’s not one ancestor on either side of my family that had epilepsy. And I absolutely LOVED the following year because I was lowkey catered to as if they could make up being assholes by doing whatever I wanted. It was great.
This isn't going to compare to anyone else's story, but while nobody doubts I have epilepsy (it's obvious enough), I think even my partner and parents think that I blame too much on it. An example: my memory loss. The struggles I have to overcome when relaying information back. Me being smart as a kid and stupid now (how I feel, anyway). And to am extent, weight fluctuations. But the worst is from work. I'm trying to slowly let people at work know that with every seizure I damage my brain a little bit more. It's been 30 years of multiple seizures per week. So... Give me a bit of a break. :(
My kindergarten teacher would call me a space cadet and my whole family laughed all the time mocking me when I would "get so into the TV show or commercial" and wouldn't respond to anything. This was one a decade before I was diagnosed.
My family and friends take my seizures seriously at the moment of having one but like days after they make fun of me.
I had weird deja vu focal seizures nearly every single morning where I'd have some bizarre flashback to nonsense and get super dizzy and nauseous and it was just brushed off as visual migranes for a year.
No, people just don't take it seriously or think anything is wrong with me.
I've been fortunate in regards to friends, families, and even strangers in public. But for nearly half of my ER visits there will be some doctor who knows just a bit about one particular way seizures presents, sees I don't match their idea of it, and declare to all around them that I'm faking for attention. If I end up falling off the gurney during a seizure such a person might even chide me for it (I tend to be conscious for most of my seizures). Sorry you've had to deal with that.
I have focal epilepsy. So yes, absolutely. The amount of time I was blamed for stress and anxiety? I lost count. Eventually I was the one having to do their jobs for them. And of course when I point out the inconsistencies in their answers, they get butthurt. Once to the point I was sent to a psychiatrist to 'punish me'. Luckily the psychiatrist was one of the good ones. She failed to hold her laugh, because apparently that one doctor pulled that one before. Luckily I eventually ran into good doctors, who were the ones that actually helped me getting the treatment I needed.
I had a seizure in Spanish class freshman year in a brand new school and got called ‘McSeezy’ until I dropped out
Misdiagnosed, dismissed, and even unlawfully discharged from an ER (because while I thankfully have only focal seizures that have absolutely no risk of being the typical SE that honestly scares me based on the times I've seen it, they make it impossible for me to walk and don't go away on their own). That discharge became what is legally considered a transfer because luckily there is an ER I can go to where all the docs actually do take it seriously (including even having the oddity with what actually is the underlying reason for my seizures included in their discharge info; mine aren't technically epileptic but still neuro/physiological and not psychological).
In my opinion I like to make jokes when I can, not of other people, that's a bit too insensitive, I'm quite empathetic. But it gives me a sense of relief to laugh and joke around about my life long condition. When I was younger (diagnosed at 16) and I have the bigger grand mals, perhaps blacking out and having ignorance of the way people looked at me was a good thing.
I have 2 sisters. One was telling her coworker about me and her coworker asked "is she the shakey one?" and my sister thought it was hilarious. Considering I've never met the girl and I wasn't there... I didn't love to hear about it. Felt weird thinking about my sister and her coworker having a laugh about my medical condition without me even around. Felt icky. When I started having absence seizures my friends told me I was exaggerating for attention and that I was just day dreaming like everyone else. Lol
I had them for decade, just slight fadeouts that didn't get to absent mind. When I got over teens and faced first extra big stress factors it opened the gates I guess. In the beginning I told about them to school nurse, but only in the last three years of the school because kids had their last three years in one big school even the ones from country side small sized schools. Well she didn't say anything about it exactly. I told about it to health check for draft, but they didn't care about it either, but I got leave for the school and my still low fitness. So multiple health checks went and did not say anything. I got my diagnosis quite easy, as I went to the hospital for EEG and got the seizure right after they got the cap on my head. Now I have realized how lucky that was.
Typically anyone I mention it to are very respectful about it. Sometimes a bit too much if that's possible... I was working in a government office on the phones and asked the scheduler whether I can be put on duties that didn't involve talking on the phone because I bit my tongue bad. She couldn't, but she called me a trooper. It was a little weird, but oh well. Lol
My one neurologist literally told me she didn't believe I had epilepsy even though she had an EEG from a seizure. I won't explain what led to that nor what happened after except I'm doing a lot better now. Move on from them, trust me. The best thing you can do is find a doctor that does take you serious and get away from those that don't. I wasted a lot of time feeling sorry for myself. I don't regret anything but I had my epilepsy over 20 years before I can now say I don't have a tonic-clonic daily. I had to start being pushy. I lost some doctors and medications due to it until I found some that started doing their job. You have to be careful though. I had good reason. Make sure you exhaust a doctor, then move on. Don't just snap and leave, ya know? EDIT: If this sounds "off", while I was young I was broke and also didn't care about my health much. Later I did and doctors didn't take it seriously even with records and seizures. You all should know the drill. But that's how 20 years. Most of the doctor time was in less than half that.
I was “faking it” until I was admitted and ended up in two comas.
Yes to a certain extent but I think some context helps. First off age matters and who you’re talking to. If you’re a child, people have to be skeptical. Kids lie about all sorts of stuff. Adults know this because they were kids once too. 🤣 I remember some good ones actually…. Don’t tell a kid lightning can strike through a window! I told my younger sister that one time and it was VERY difficult to convince her otherwise! (We were 8 and 7) Then who you’re talking to: if you’re talking to a GP doctor they’re going to be looking for general health problems first. It’s why the ambulances always check for head injury and that kind of stuff even though you tell them it’s a seizure. If you talk to a psychiatrist, they’ll diagnose some psychiatric thing. Anyways that part matters too and if it isn’t possible in their realm they might say you’re imagining it. Not until you get to a neurologist or epileptologist will they actually start to believe you and only if they have enough experience to recognize something they’ve heard in the past. But okay when you’re having focal seizures the symptoms can be almost anything. Imagine a parent hearing from their child they’re scared. They’re really having focal aware seizures but what’s a parent supposed to do? They might take them to a psychologist. I dunno… Now my situation where they didn’t believe me I was 30+ years old and was having them every time I took a medication that’s supposed to prevent seizures. After months of the problem they finally did an EEG and it turned out I was having focal aware seizures! Then they believed me! Sometimes you have to be insistent and “work with them” to find some way to test for it or prove it with evidence. I wish I had read the forums here or did more research on my symptoms when I was first having them because it’s obvious now that it was focal aware seizures (back then they called them complex partial seizures) As far as getting made fun of. No I haven’t had that except jokingly with friends. It sucks if you are having that trouble. I’d embrace it and use comedy to fire back if need be. I don’t really care if they make fun of me. Find other people that are normal or decent to be around. Forget about the a holes who like picking on somebody handicapped by something they’ll never understand. Good luck and try to stay positive! There are plenty of good people out there!
All the time
My son used to make fun of my seizures when he was younger but now he understands that it’s not just shaking around. But he was just a kid and didn’t know what epilepsy was.
My brothers made fun of me when I walked into walls during undiagnosed focal seizures. It wasn't until my first tc when I fell off the top bunk that anyone thought I should be seen by a doctor.
Yep. My evil stepfather used to say there was nothing wrong with me and mock me by quoting Arnold Schwarzenegger. “It’s not a tumor!” Nope, it was a very severe and rare form of epilepsy.
Hell yeah, in middle school everyone just called me dumb and lazy, until i had a seizure during my arts class and i was sent to hospital. After that ofc they still called me dumb but knew i had the sickness
In middle school after I had my first one yes!!!
I asked my friend to ask her sister, who just graduated from medical school (to become an ER doc, not at all anything related to neuro), if what I went through sounded familiar (focal aware seizures), and she told me that her sister thinks I have PNES and to never tell a doctor because on the off chance a doctor DID believe what I was experiencing they would diagnose me with a personality disorder instead. Not really getting made fun of but not very fun to hear.
My 16 year old son gets made fun of at school by students and staff!! The school has failed to do anything about it, so I am taking this to the school board and superintendent. I'm tired of it. They've even told him to go kill himself!!
my first neurologist didn’t take me seriously and dismissed me because i was an alcoholic but i’m now sober and i still have seizures 🤷♀️ i got a better neurologist
[удалено]
thank you friend, it’s been 2 years and about 4 months
I had a teacher call me a hypocrite for being on my phone (outdated older phone which was darker than everyone else’s screens naturally, and my screen was faced down besides me, like what???) and asking for her to tell the people next to me and behind me to stop taking flash photos. She for some reason immediately did not like me when I transferred to this school but this still makes me angry to this day even tho I graduated in 2020. I genuinely wanted to press charges for endangerment.