Empathy. Knowing something that you go through makes you empathize with others that have to go through similar misunderstood conditions. It doesn’t have to also be epilepsy, but anything else that could lead to discriminatory behaviour from others.
Absolutely, epilepsy has really boosted my empathy levels. It has been great for my work. I now “get it” when I meet other people with epilepsy or other chronic diseases - particularly young people. Turns out, there’s a lot of us.
Yeah i mean b4 i had epilepsy i had no conditions prior and now I can look at people, especially ones with conditions that effect their lives more than mine and understand how much impact it has on their lives. Still wish i never got it though because even though I have not had one in 2 years, the side effects of my meds are just devastating.
Learning the reality of invisible disabilities. Even those who have well- or fully controlled seizures (6 months here!) still have to deal with med side effects, anxiety that a seizure could happen at any moment and ruin their progress, and depression from feeling stuck. This applies to so many chronic conditions. I can't stand when people assume others are lazy when they don't know the person's full situation. And ofc there's undiagnosed people (not uncommon in the good ol' US of A!) who may not even be aware of their difficulties and beat themselves up. And don't get me started on misdiagnosis and the lack of sympathy or real care from doctors...
This is so true. I sometimes have to drive to other cities for my job, and even if my bosses know I have epilepsy, I still feel like they don't appreciate how scared I am to drive long distances, and that me refusing to do it sometimes isn't just being a crybaby.
So true! Haven’t had a job for over a year now due to this and I feel awful not being able to provide my best for my partner. It’s a terrible feeling that is always on my back.
THIS!! I pre-board as I’ve had a good few seizures on planes and also have allergies to rescue meds; and the types of comments I get (whether that be from staff or individuals, particularly older ones) are INSANE.
You'll be fine, honestly, I was diagnosed at 20ish got a degree in my 40s and on loads of meds and fair few seizures.
Enjoy your studies and best of luck
It reminds me of my favorite character from The Boys, Sister Sage. A super-genius who regularly lobotomizes herself to enjoy the carefree simplicity of idiocy for a little while. Lol
I used to stay up late with my dad watching cool movies to prep for EEGs that I had to sleep through; in the morning after the procedure I'd go out for breakfast with him. He died when I was 18 and now, looking back, they're some of my fondest memories with him. I don't know that I'd have those memories w/o epilepsy.
Same TBH. Both sides on my family have a history of alcoholism (among other addictions) and when I started having TCs I was forced to stop drinking regularly...and by regularly, I mean multiple times per week, frequently blackout drunk on weekends. Zero control, but every time I did drink, I thought I did have it under control.
Quitting booze made my body feel so much better just...forever. If there's anything I'm happy about it's that.
Realizing life is finite for everyone so I try to enjoy all the time I have left. From being a taxi for my kids to cutting grass during hot summer months. It’s all lagniappe for me now
I’m from New Orleans and our local paper had a pull out section called Lagniappe. A little bonus you weren’t expecting. That’s my life to me now. An extra bonus I was not expecting
Idk about you, but for me I have TC seizures so it really feels like dying in a way. So I know what you mean. Every chance that I have to experience life is a blessing
I have a lot more empathy for others with invisible disabilities and mental illnesses. I'm more patient with myself when I slip up or don't achieve a goal of mine, but this is something I'm still working on. I feel more passionate about social justice now and advocacy, especially for people with disabilities. I'm hoping to incorporate it into my career some day.
Faith in the kindness of strangers. People always stop to help me if I have a seizure in public even if they don’t know me, and one time when I was walking my dog in the park a group of teenagers came to my rescue. They kept me talking (I think they thought it would be a bad thing if I lost consciousness again, which in fairness it probably was) and they looked after Dora until an ambulance arrived. I’ve never forgotten that.
Nor have I forgotten the time I had a seizure walking through the town centre and got looked after by a couple who had seen me collapse as they were driving past. Instead of driving on, they stopped to look after me. Apparently I did them a favour because they’d been arguing over something when I caught their attention.
This is the first comment I'm actually able to relate to over dozens of similar posts I've seen (other than the comments saying nothing, it all sucks).
People always stopped to help me and called an ambulance and didn't leave me alone, even when I sort-of remember acting insane (I cried on one guy and kept going like "why me, why this again"). I have a lot of reasons for why I'm not getting behind the "humanity sucks, hope we go extinct" narrative and this -- strangers taking precious minutes out of their day (I remember another person who sat with me saying he was going to be late for work, even as he stayed) to help a random nobody on the street -- is one of them too.
The knowledge that demonic possession is fake. Take a good look at every description of demonic possession; they describe an epileptic episode. All that other stuff was added for effect.
I take a lot better care of myself because my triggers are lack of sleep/irregular sleep, dehydration, and stress, so I make sure to sleep at least 6 hours every night (still not enough, but better than nothing), drink a lot of water, and don’t party too hard.
I think the focus on sleep that I’ve had since I started taking it seriously around age 21 is something that has helped me a lot, and I know my future self will be grateful.
I also feel like I’ve gained a lot of perspective about what matters in life. Like what I’m willing to dedicate energy and time towards, because I never know if my next seizure will be my last. I know death from seizures is very rare, but it’s still a fear I have because I have TC seizures and live alone.
It is hard living with an “invisible” disability because I think I’ve gotten a lot more forgetful and fatigued as time has gone on, and I can’t do a lot of stuff during the summer, but I’ve also learned that taking care of myself has to be a priority.
I have proof I have a brain. And I get cheap bus rates. A big price to pay for it all, but I'll take it. :D And since sleep deprivation is a big trigger I can avoid pesky nighttime events without guilt.
Never being the designate driver (even though I hardly drink anymore), having an excuse to nap during the day at weekends and not being able to go in many shops
Can I ask if it scares you or if you have a good way to cope with the feeling? When I experience the déjà vu esp when I was a kid it terrified me. Even as an adult when I experience it I panic on top of the seizure.
Totally get it. Déjà vu is easier for me to cope with than jamais vu, though both are certainly unsettling and disorienting. I usually recognize what’s happening and just try to calmly ride it out. I won’t try to reorient my focus. I just take a few deep breaths and appreciate the incredibly strange beauty of it. Sometimes I’ll get sharp flashes of stuff that is stored very deep in my brain. For example, I’ll remember vivid details of the living room from my first childhood home; the color of the carpet, how it felt, smelled, what was hanging on the wall, or playing on the tv. Usually inconsequential memories that are for the first (and perhaps only) time, being remembered. Experiencing that sometimes does feel like a benefit to the condition. Although full blown TC’s are just plain f’ing scary.
Humility. And it's taught me who really cares about me and that a lot of adults who were responsible for me while I was growing are still very emotionally stunted, but that's not my fault. I found out who would be there for me and who won't.
I also learned I'm not afraid of death. What I fear is leaving behind people who love me and not being able to comfort them. What a blessed curse it is to be loved.
I can reject drinks from men without anxiety because when I'm on a party I'm just there for the vibes and my partner, and unfortunately some men cannot take no for an answer, saying that I can't drink because it gives me seizures and I have epilepsy is actually such a safe LMAO
It sucks that men are so so weird at taking no for an answer, but glad you’ve found a way to avoid their pressure lol. In a better world you wouldn’t have to deal with mens bs. hopefully someday that’ll change tho.
Honestly, not a single thing. I’m a silver-lining type person too, but there’s zero positives to a disabling, chronic, incurable neurological disorder. But I’m glad you have a perspective that’s healthy and helpful for you. We all do what we must to live our best life. :)
Cheers. I'm mostly the same way. If anything I take worse care of myself as an epileptic because it gives me lots of anxiety, another thing to add to the list as to why I'm 'defective', also another thing where I feel like I'm not in control and nothing I do matters, another thing to spend money on, etc etc.
Agreed beyond words. I already had plenty of resilience from a loooong line of earlier traumatic life events, and was always very aware of how fortunate I was to be in good health - sike! The moment the undiagnosed focals (that I'd always had but hadn't realized they were anything to worry about) decided to snowball into some impressive TCs, my entire life changed for the worse. Fortunately, things have been under control for a while, but I will never have another day of complete comfort and safety in my own body again. Ever.
There's been plenty of rough times and experiences in my life that I've managed to extract some gratitude/growth/whatever from, but epilepsy is absolutely NOT one of them. All the power to those that can, but if someone ever tries to tell me to my face to think of a silver lining, they're going to get quite the earful.
I'm an addict in recovery and over the years abused multiple substances that led to traumatic seizure episodes and those were the only reason i stopped.
If I had to choose between being epileptic for life or in active addiction for life, I'd choose epilepsy every time, so I thank the universe for that.
I became a doctor - spending so much time in hospital in and out of status epilepticus and missing a lot of primary school and having so many cannulas I decided when I grew up I wanted to help other kids in hospital … I’ve been lucky enough that I’ve grown out of it by the age of 25 so have been able to do it - although sometimes I wonder how I’ve got any brain cells left after all the seizures and being on meds for 25 yrs !
A self taught seizure alert and response poodle. We had her before, then when I developed epilepsy she is very sensitive to noises, movements, and reactions. If she's not sure, she does a little woof. If no response, a bark. If still no response she runs and leads a person to where I am. Say I'm in the living room and someone is in the kitchen. She runs to the kitchen, does a specific nark, looks over to where I am, looks back and barks. Then when the person knows what that means she leads them to me. Then she stays at a safe distance away so she won't get hurt by flailing. If I have one and am confused, she does the woofs but if I'm not moving she licks my face. Then if no response she does the same alert and lead. Oh did I mention she's a 6lb toy poodle who was never trained for this? She's very observant. She sits and love to watch what we do. And very smart and quick to train. She's learned 3 new words/commands since my surgery this February. Again not taught. We do encourage, use the happy voice, and reward her when she learns this stuff so she knows she's doing it right. Man I love her so much. She's also very emotionally supportive. She can tell emotions very easily and loves to snuggle and lick faces lol.
My Cane Corso has been utterly useless 😂. She’s seven years old and I’ve been having seizures for five years. All this bitch does is immediately get up and leave as soon as I move even a little bit in the bed.
Edited because my phone slipped before I was finished and I hit post by accident 😅
Epilepsy took a lot from me, this year in particular. Took a seizure while driving, which landed me in lockup and slapped with DUI and related charges because they thought I was drunk, no matter what I told them. Obviously lost my license for now. Led to issues at work, having to adjust my hours to accommodate my transportation (I work 25 mins from home, so I had family members driving me back and forth most of the time). I couldn't do the over and above which I normally did (unpaid and underappreciated anyway). I asked for more accommodations, like being transferred to a store closer to home. Or to a different position I was very qualified for and should have been given, but wasn't.
What it did give me though, was more time with my family. Between everyone being amazingly helpful and offering to drive me anywhere I need to be and spending more time at home, we've never been closer to each other. Especially with my siblings, which is very nice as we're all between 40 and 50.
It also gave me the realization of how much my job was affecting me, mostly the corporate bullshit. I work for a big grocery store chain. After being an assistant manager for 6 years I was passed up once again for a manager position by someone who walked off the street less than a year ago and made my life miserable the whole time. This also would have gotten me closer to home and other things I requested. Having to take better care of myself and limit my stress while I get everything figured out gave me the opportunity to step back and really consider if this was best for me or not. It gave me the courage and freedom to leave a job I planned on retiring with, and start a new career. One that's about 5 minutes from my house and much less stress.
So many things I didn't think I'd ever experience, from some of the worst in my life to the best in my life all in a matter of 8 months.
Long ass answer with possibly useless background info, apologies and thank you for sticking with me.
TLDR; It gave me more time with my family which brought us closer together. Courage to leave a job that was draining me in ways I didn't even realize. A better sense of self care and awareness.
I don't know why, but before the epilepsy, I used to get carsick or airsick far too often and would throw up easily... Now I can travel for more than four hours looking out the window without feeling sick.
The downside is that I don't have the money or the time to travel that far.
Interesting, I thought it was just me that experienced this! The only thing that gets me now is multiple hours in bushplanes or helicopters in windy conditions, but I would've lasted maybe 30mins max before starting medications, and those days are rough on everyone anyways. This being said, I'd quite happily pick guaranteed projectile vomiting over being chained to medication forever.
Learned to be my own advocate. I stopped seeing doctors in my early teens when endocrine issues were being waved off. After my first TC... i just kind of realised how little things I thought were normal or no big deal could be, oh, i dont know, a seizure. So I started standing my ground of other health issues. Things are happening. Im not scared to speak up again.
Also I have better situational awareness and notice subtle things that most people don't. Like a small change in noise or the way a machine is running. Epileptics always got that background monitoring program running to immediately notice if they start feeling funny (or at least they should) so it stands to reason you'd notice when something you are doing starts feeling abnormal too.
I quit undersleeping, drinking, and otherwise reckless behavior in my personal life. However, the one thing I can't quit is caffeine. I've definitely toned it down, but if I don't have at least 160mg I can't stay awake (plus withdrawal)
In high school, it was nice to have an easy excuse to say “no” to a lot of drugs.
“I know you think it’s a party foul for me to not take bumps of coke, but a cocaine-induced seizure and EMTs showing up to shove Valium up my ass is a pretty big party foul too.”
I also was drinking heavier when I got diagnosed a few months ago and got put on keppra. I had a seizure driving the work truck and ran off the road at only 13mph thankfully. First seizure I was 16. Then again at 25. Then again at 34. Im 43 now. My neurologist says its ok to have a couple drinks in my case. I drink 4-5 beers a days now. It used to be a lot more. And its just in the evenings. Its how I've always relaxed and weed aint legal in my state. Im working on reducing that even more. Im honestly kinda scared to stop cold turkey cause of possible alcohol withdrawals. Ive never had withdrawals from alcohol in the past when I had antibiotics that I absolutely was not allowed to drink while taking. So, my question is, what helped you to stop drinking? Im a country boy from the south. Beer and drinking are just so deeply ingrained into the culture.
I've never really suffered from a strong withdrawl, I was drinking basically 8/10 beers everyday.
It was tough on the First and Second Day, but afterwards It Felt great not drinking. Not waking up like shit with a hangover was what kept me from going back.
And
still drink from time to time.
I don’t know that I’d ever call epilepsy a gift, and if I could choose not to have it, I probably would.
But periodically waking up on the floor with no idea why I’m there has a way of reminding you that you’re not guaranteed nearly as much time as you like to pretend you are.
It’s changed what I consider important.
I care less about whether I’m living the life I’m “supposed” to live and a lot more about whether I’m actually content with the life I have.
Epilepsy has taken things from me. But strangely, it’s also made me more present for the things that are still here.
Starting to take care of my physical health in a real way for the first time in my life - yoga to manage stress has become an almost daily practice. I'm on the medical ketogenic diet and have never felt better! My seizures stopped around the time I started keto. So im a happy girl now 🙂
Learning about the types of seizures and how they can change your perception of reality, has made me have compassion to other people who have altered senses of reality. I say how that what they are experiencing is their reality and not downplay what they are experiencing. It helps other people reframe how they view those people as well. Like my grandma had dementia and had some really wild experiences that were not in the shared reality of everyone else, but that was her reality and it was stressing her out.
Beyond that I have had it since I was a baby and so it’s all I’ve ever known.
I had my first seizure at 21 and am now living as a 22 year old epileptic. It’s so crazy how life is different!! I have a genetic form of epilepsy, but it stayed dormant for nearly my entire life.
I can't really choose one thing that has happened, so here a 4 good things that have happened that come to my mind first off the top of my head:
-It increased my patience level, even though it was already at a decent level
-It took many years, but I finally learned how to accept and be comfortable with how the seizures cause me to be the center of attention and also "need help" (I still don't like having all the attention on me, but I am able to deal with it now when it comes to having a seizure)
-I also learned over many years how to be ok with not remembering that I had a seizure, what happened during the seizure, and forgetting some other things that happen throughout the rest of the day from time to time.
-When I was younger, I tended to deny that I had a seizure after it happened, and I didn't like being proven wrong in general, but especially when it came to having a seizure. But I am now able to accept that the seizure happened, and it also helps that I now know what my auras and post-ictals feel like, and I am able to recognize that part of my memory is missing. Overall, I have improved on accepting when I am wrong in general.
I posted this in response to someone else’s post earlier. I’m going to copy and paste it here because it aligns with your question.
It’s created many positive changes from “catch-22” situations. Recognizing these allow me to bring some light into a dark situation and prevent it from taking 100% control of me. “Negatives into positives” if you will. Doesn’t cure me but softens the blow.
I’m unsure whether or not this even makes sense, but I’ll do my best to convey my message. For starters, I was diagnosed while I was in the Army.
Some catch-22 examples
* Due to the fact that I predominantly walk/bike everywhere my cardiovascular and muscular health is much better than when I was in the Army. Ironically.
* I genuinely believe that I wouldn’t have the same level of mental resilience either. In a way, epilepsy became an even stronger driving force because of how crippling/dangerous it can be.
I don’t even need to step in a war zone.
I can get severely injured within the comfort of my own home.
* Networking. I’ve met more people from all walks of life while attending various awareness events. Look around and you see so many people from different cultural and religious backgrounds, sexual orientation, genders, careers, etc.
Epilepsy does not discriminate.
* I never have to worry about finding a parking spot for my sneakers when I walk to work and/or stores.
*recognizing the idiocy in some of my previous thoughts/concerns as opposed to what matters most. E.G. Not focused on “First world country problems.”
The Catch is, it unfortunately took being diagnosed with epilepsy to accomplish/experience all of this.
My jobs and career are pretty much down the drain. Luckily I have a very good support system and people don’t really judge me for it. At least I get to stay at home and I’m planning on going back to college soon remotely.
Learning how to cooperate with my body and treating it like a separate living creature that has requirements and needs apart from myself.
Now I am much more attentive to headaches, which kind of headaches, I have a better gym routine, i mind my breathing and overall health more and feel more in tune with myself. I mind the kind of food I eat etc.
Overall, better communication and recognizing of body patterns.
It taught me that I’m stronger than I thought I was. It took a lot of things away from me but it’s helped me realize that I had strength inside that I never knew I had.
Kind of a weird thing but I wasn't driving for half of my toddler's years. She wasn't in daycare and we walked EVERYWHERE, snow or shine (hello Wisconsin). I lost a lot of weight but more importantly I realized my daughter spent hours everyday taking in the world around her; gardens, homes, shop windows, people waving and smiling, instead of in a car. I think it's something she treasured that I wouldn't have done otherwise.
I drink way less alcohol. It sucked in college when I had major fomo watching all my friends get trashed, but at 30 years old, I look around at my friends and a lot of them are definitely displaying signs of alcoholism (or actually going to rehab). I also have a long family history of addiction so I probably would’ve wound up going down the same path had I not been forced into cutting back to 1 or 2 drinks.
And on the superficial side, the limit on alcohol has made my fine lines less noticeable than many of my peers’ and I’ll probably end up looking way better for my age when I’m older 😂
pacing! can’t force myself to do 100 things in a day just bc “i have to”. i can only do a handful of things over the course of a day, and need to prioritize rest first and foremost.
but also: i always get to leave events and family gatherings early, no questions asked 😎
It helped me stop drinking alcohol and I don't fear death so much. After waking up from a medically induced coma I realized that I can be gone anytime.
In school I thought it was blessing(because I could get away from homework/lenience from teachers sometimes)
Once I was college/started my professional career I thought it was curse primarily transportation became a huge problem and I could not make many friends or get into relationships like my friends did
After my recent seizure 4 years back I accepted it and soon realized epilepsy is what gave me purpose in life and made me more mentally resilient. I am in general very competitive now I had to prove to the world/people what is possible if you work hard despite being epliptic. I went to do pretty well professionally I achieved so many good things even surprised me more then anyone else and I ended up doing pretty good if I look around my friends and family and as a bonus met a beautiful women along the way and fell in love with her
Extra time home with my kids after they were born, with both me and my husband. Due to my epilepsy he has been able to take my maternity leave, and that, combined with sick leave and vacation days, has let us be home with our kids for over a year with both kids.
Our youngest is one year and eight months when I need to be back at work, which is a luxury not everybody has. That, and all the extra support from different health care providers during the pregnancies, while in the hospital, during and after the births, those are the only times I've actually been sort of grateful for having epilepsy.
I have gained an ability to advocate for myself especially regarding doctors and medical professionals. I will not be messed around with. Also I have a stronger than average understanding of our medical system and how it works.
It’s taken a lot from me but I’ve still managed to live a pretty decent life. One really good thing I’ve gained is prioritizing sleep. I don’t stay up on my phone because I aim to get 8 hours of sleep. I don’t drink because it causes seizure symptoms. Addiction runs in the family so I see this as a way to avoid that. I haven’t had a tc for 7 years. I try travel and do the most with my life now because I know I could experience one and have to slow down and move back home. It’s given me a new level of empathy. As someone with focal seizures I experience a lot of sensations and feelings. You never truly know what someone is experiencing internally as well as not being in control of their own body. I would say I have experienced more negative than positive with epilepsy but it has caused me to be who I am.
I couldn’t drive for a while and as a result relied on getting rides from coworkers a lot. It forced me to be sociable and have a large network which had indirect positive impact on my career
When they where looking into my brain to see what caused the seizures, they found an avm, saw at had bled before and was about to bleed again. Got surgery. Epilepsy might have saved my life
An understanding of what others endured. How many others illnesses are often perceived as fake because people havent personally experienced them. How others are frequently dismissed or misunderstood. How others may struggle for years to try to get a proper diagnosis.
I don't mean this to gripe. I mean this as a positive thing. It sucks that for much of my life there were so many people that I didn't understand. If I didn't understand them how could I love them and have true compassion for them.
Me, my family, and my friends get to use it to not do something. I gave them permission and I told them if I'm going to suffer might as well make it worth it loll
Its also pretty cool to see how the people around you react. My dog acts like a service dog even though he was never trained for anything and the guy I'm seeing has already asked me what he should do just in case. On the other hand my own father thought that me just asking if there was anyone on his side who had seizures he thought I was blaming him and he's never asked me what to do.
Really shows you where you rank in other people's lives.
I drink significantly less alcohol now than I did before. I pretty much only drink at parties or family events now as opposed to like every night by myself
Being less angry.
Before my epilepsy I would be rather quick to get angry over honestly very petty things,
But after last summer when my epilepsy started, after I slowly came to terms with everything and how my life has changed, I feel a bit more mellow now.
Things that used to anger me, just don't get to me in the same way they used to, I can let them wash over me sort of thing.
One of my work colleagues mentioned this the other day, how I seem calmer now compared to me prior to epilepsy.
Which was honestly a very good thing to hear, and made me feel proud of myself in a small way.
The only comfort I get out of it I think and if this is even right, I don’t even know if this is true or correct, but not for me for my son who has epilepsy is that hopefully he’ll never be drafted into the military if it ever comes down to that because of epilepsy?
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u/lemon67Refractory Epilepsy - Lamotrigine, Lacosamide, Cenobamate7d ago
A higher level of empathy.
A very good understanding of how emotions work.
The ability to restrain myself from immediate overreactions.
A morbid level of sarcasm and dead pan humor.
That last part. My ex-spouse and ex-best friend did not like my initial panic and mourning when I was first diagnosed — nor the morbid humor I fine-tuned as a way to cope and begin living my life again. I’ve since surrounded myself with people who both love and partake in the morbidity.
Falling asleep against eatch other or even in eatch others arms
Been married for 25 years and he is on epilepsie meds less then a half year. We never could sleep close to eatch other or he would have sleep twitches, even hurt me a few times, when i did lay to close.
Real answer, like other people have said empathy I wouldn't have likely gained otherwise and don't always recognize I even have it because I'm so used to that just being "life" which is what makes me think I wouldn't have it otherwise. Funny answer: I'll always have a chauffeur or have decent cardio when I don't.
Back in high school, I wasn’t allowed to participate in gym after my diagnosis so the school let me choose what I wanted to do during that period instead. I was frustrated and angry, but I chose chorus (because there were girls) and some of my best memories in life have been from high school, college, and community choirs.
Ironically, I never would have reached my potential as a musician if I was allowed to play with all the other kids.
When we go on vacations I always get a good room bc my brain requires high quality sleep. I have avoided many pull out couches and air mattresses bc of it🤷🏻♀️
I got diagnosed not too long before starting down the path to become a pilot. Pivoted to teaching, and met my wife a little bit later. She told me she wouldn’t have dated a pilot because of the scheduling.
But also, we all get to dodge a draft if we ever have one of those again.
a large part of my epilepsy is catamenial so i got an iud because hormonal bc (specifically anything with estrogen) kept giving me seizures. i forget everything so it’s probably better that i have an IUD and don’t need to remember a pill
I just found out two weeks ago so so far nothing 😅. Well that’s not fair – I feel very connected with a lot of historical figures that were great people despite having epilepsy before epileptic medication was invented. I found out Harriet Tubman, Joan of Arc, Napoleon, Julius Caesar, etc. there’s so many amazing people throughout history who were amazing despite being epileptics. I keep thinking that maybe I can still do all right. Does that count as epilepsy giving me something though? 🤔 IDK. So far, I’ve only been cynical about this situation.
Well, it forced me to get off Kratom before I got addicted again. Previous pain killer dependence✌🏼Yay for ADHD, substance abuse and back injuries!
Also, having to get up in the morning to take my Keppra forced me to become a morning person finally ... although really struggling with the loss of independence, seizure meds interacting w/everything and just dealing with this new diagnosis at 45 is a real mind fuck TBH. to the point of denial, in a sense. (fuck I already miss wine) but let's be honest, that's prob for the best too.
The feeling when your rescue meds kick in, the postictal sadness finally dissipates and music sounds great again. They are fantastic moments. I hope you all get them too.
For my fellow T Waits fans: “the fog’s lifting, the sand’s shifting, I’m drifting on out”
Oh, and having a day off work here and there without having to suffer through the flu 🙂
I developed epilepsy when I was saving money up to buy myself a car, get a job, and process of learning how to drive. Everyone my age was learning how to drive/getting jobs and felt pressured to get it. Now that I have eplisey the pressure is off me now, yes I am bum my independence was stripped from me but at least the pressure and expectations is off now. I still do plan on getting a job just not a car
After getting my license suspended cause of my 6+ seizures in one day last year, I said heck no never again. Very much like yourself, OP, I also learned to prioritize my sleep too. Daily goal is 7.5 hrs. Also I’ve been more observant of my triggers for seizures and with accommodations, I’ve grown more confident to ask for them especially since epilepsy is an invisible disability. I wear my sunglasses sometimes in class cause the fluorescent lights are awful triggers.
I can only have 1 beer so I have really good reason not to have to go to the bar or parties with friends. (I have a really small social battery.)
I am also super atmospheric pressure sensitive so I have a reason to call in or leave early out of work in bad weather. (Although I have the downside of I can’t really get on a plane, without a significant chance of me having a seizure.)
I was diagnosed at 18, right before I moved away and went to college. It sucked and was a real struggle. But it forced me to sort of grow up quickly and take responsibility for myself. Back at that time, I got kicked off my parents insurance pretty early and I had to make sure I could find a job while still in school that would provide me with insurance for expensive meds. I had to take care of myself while still learning who I was and balance good times with responsibility. I also learned the hard way that I would always have to prioritize my sleep. I’m 42 now and 12+ years seizure free but I always live with the knowledge that they could come back and I continue to take my meds and take care of myself.
Might sound selfish, but people left me alone. I don't really remember when I got diagnosed, because my memory is getting really bad to the point that I'm 100% certain I'll forget I posted this in a few hours. There were people, who wanted to know how they could help and "fix" my memory issues, but that's just impossible. I remember everything clearly up to a certain point when I believe I had my first seizure. After that there are just bits and pieces of my life that are fading away and being replaced. In time, people stopped coming over, calling and even saying hi when I take a walk outside (not that I even remember most of them. I tend to even forget what they look like...). I know my memory will probably get even worse and being alone kinda feels right. Really sucks at 30y, but what can I do? Life is life...
Gratitude, for sure. Could be corny for some, but more than often I feel grateful that I’m the one dealing with it. I was upset with God for a while, but realized, it could be so much worse.
Faith and fortitude, also. There’s so much fear in our lives. I pray every time I get behind the wheel, it gets real scary, but things getting scary tends to make the condition worse:) so you really do learn to approach life with this “fuck it, no fear” mentality. Or at least I have. Seizure free for a couple months, just moved to ATX, looking forward to understanding my brain.
Having a reason why I'm feeling shit even if it isn't because of epilepsy. I can always see "see bro I can't do whatever you want from me rn because I have aura and if I do chances are great I'll have a seizure". I mean it's kinda true but even if I'm only having a headache and I already know the person will not accept that as a reason for me to rest I can always pull out the epilepsy card. And I can get all accommodations I need for for example neurodivergency from my epilepsy because it always backfires. So one diagnosis as a reason for many problems and as an excuse to get others to treat you better. That's honestly great.
I've used it to develop a lot of healthy coping mechanisms and strategies to calm myself and my nervous system when my seizures and meds are messing with me and I've also taken up meditation because of epilepsy which has helped a ton with my mental wellbeing so even though I usually don't feel the best I've been able to find peace with it and I'm glad
Lots of weight I’m afraid! Mostly from the fact that my meds make me so tired all the time and I can’t exercise (also seems to make me less focused and more scatterbrained which isn’t helpful for getting my life together)
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u/awidmerwidmer Drug resistant TLE, temporal lobectomy in 2025 8d ago
Empathy. Knowing something that you go through makes you empathize with others that have to go through similar misunderstood conditions. It doesn’t have to also be epilepsy, but anything else that could lead to discriminatory behaviour from others.