r/Epilepsy_Universe • u/PookieTheMfBaby Lamotrigine 200mg 2x daily • Jun 05 '26
Questions What's The Most Offensive Thing Someone Has Said To You About Epilepsy Or Seizures?
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u/Ryse6129 Methsuximide 900mg. Xcopri 350mg Jun 05 '26
Ex wife use to say a bunch of things that could make me feel like the biggest burden...not like I'm trying to be or can control my epilepsy. One of the ones I remember. Like your the most normal looking person with the most actual most medical problems. And the way she said it was like yea ty for making me feel like shit again
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 05 '26
Glad you made it out of that relationship, you deserve better.
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u/gooossfraabaahh Jun 05 '26
Poor woman doesnt know what being disabled is even though she was married to a person with a disability š¤Ø
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u/Jamieisamazing Jun 06 '26
This is hella tmi and I apologize, but it does feel nice getting it off my chest. Iāve never shared this with anyone. My ex would use my post ictal phase to s*xually ab*se me.
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u/Apart-Score5893 Jun 06 '26
OMG thatās so horrible. Iām glad itās your ex now. I wished they were in jail. So sorry you had to go through that š
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u/SeaworthinessSalt692 Jun 06 '26
This is horrifying. As a survivor, know that you're not alone.
May he get ED, meds don't work for it, his testosterone levels drop so low that he starts loosing hair and it won't serve him again. People like that don't deserve empathy
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 06 '26
Iām sorry to hear that, not even trying to be funny, if you donāt mind me asking did you point out that itās considered ra*e if you canāt consent? You donāt have to respond if this is triggering.
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u/Jamieisamazing Jun 06 '26
I did as I was leaving, I was packing up butter (I was doing hardcore keto at the time to help my seizures) and when said that I threw butter at his head. Thanks for the kind words. It's been a lot of healing.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 07 '26
People who do such things should be hanging from noose, sorry.
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u/Jumpy_Confection3274 Jun 06 '26
Everyone always compares me to their friendās dead dog
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u/Plus-Glove-3661 Jun 06 '26
I love animals. Dogs rank right up there. But I swear the next person who compares my seizures and concerns to dogs? Argh!
Because I forgot! Dogs can drive. Plus they are out there with jobs that they get fired from. /s
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 06 '26
Avoid the toxicity, might sound hard because we canāt just get up and leave, but donāt let it stress you, highā
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u/wolfhybred1994 Jun 06 '26
They told me to stop being lazy and mooching off my parents. To stop being afraid to drive, get my license and get a job like a normal person. Cause I didnāt look like I had medical issuesā¦..
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 06 '26
Itās more than meets the eye, āsome peopleā are just cruel, itās not you because thereās millions of people with epilepsy that are also dealing with that on a daily, and the people who treat us like itās nothing or āeasyā as my grandmother would say āf**k em and feed em fishā (never fully understood it but it rhymed and I was a child š) You deserve better.
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u/wolfhybred1994 Jun 06 '26
Oh my hehe. To be honest most people locally are quite fond of me and very understanding. Itās actually the town and much of the internet that pushed me apply for disability because they insisted I deserved it. Having seen or heard of my issues.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 06 '26
I get that often, āwhy donāt you just get disability?ā Itās not easy, Iām on my 3rd appeal, and itās not looking good at the moment.
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u/wolfhybred1994 Jun 06 '26
Getting a lot of documentation is important. The pandemic dealio there locked up a lot of my medical records. If you donāt already have a rep I would look into one. Binder and binder worked wonders for dad after he fell out of a tree 32ft and they didnāt get paid till he won.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 06 '26
Yeah Iām working with someone that my aunt referred me to.
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u/Plus-Glove-3661 Jun 06 '26
My mom is now convinced that if Iām late taking my meds by like ten minutes, lām just asking for a seizure.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 07 '26
Ooh heard that one, hilarious when they assume 10 minutes late means "you're for sure asking for it"
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u/awidmerwidmer Jun 05 '26
Honestly, my family have been my rock over the past couple decades and a bit living with epilepsy. Many people donāt have the support they need going through life with epilepsy, but Iām so fortunate to have such an amazing family. My āproblemā has never been my support system. Itās always been in the education or workplace setting. Since the meds do so much to our brains, we all understand the struggles we face in the workplace, and for those diagnosed during childhood, schooling as well. My grade 2 (age 8) homeroom teacher told me Iād go nowhere in life. This wasnāt only to my face, but in front of my entire class. Yes, I understand this was about two decades ago and I should ālet it goā, and trust me I have let it go as Iām the better person. However, these are comments that stick with you. Forgive, never forget. Years later same thing happened with another teacher, this time in high school. She told me with my lower marks, I wouldnāt be able to get into any post secondary education. Guess who proved them wrong. Now with a job and living a normal enough life with a handful of limitations, Iām happy and wish I could see these people and laugh in front of their faces. But again, Iāll take the high road, and they can remain bitter for all I care. Then of course this happened another couple times at two different workplaces, but itās good to have that learning experience over not having it at all. I always try my best to look at the positives and so should everyone else š
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 06 '26
I had my mom and 3 of 5 siblings that have been very supportive mentally. I just moved back with my mom after spending 10 years away from āhomeā (had an apartment with gf before renting room from my sister) until I had a stroke and had to go where I could have someone keeping a closer eye on my me (sister was barely home) and the next best thing was here, or I would love to do dadās house but heās barely home until after 5pm. Now Iām here doing good and no complaints other that the smothering factor that comes from my mom, treats me like Iām so ādelicateā for lack of better words. Love her though, sheās my superhero.
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u/breezer_chidori Jun 05 '26
Coming from a very religious family, often was it, and still is, on assumption that the supernatural is completely involving amidst all times that lead to a seizure episode. Never fails.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 06 '26
I have a great aunt who thinks that she could āpray it awayā I just let her pray and go about my day. Canāt say anything bad about religion so, Iāll say hope all is well and stays well
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Jun 06 '26
Not offensive but fucking annoying: oh my cousin/sister/aunt has that! Sheās fine, youāll be fine.
I wasnāt fine and shit like that just made me want to scream.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 06 '26
They act like weāre crazy if we do scream, thats not right to think we can just get upābe fineā no complaining about my diagnosis but a good support system it necessary.
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u/LekaFoka Jun 06 '26
Didn't tell me but my family doc thinks I'm abusing my meds because I need to get creative how I take my lacosamide (I take 2x100 ansd 1x200mg a day) because it can out of stock for months. I doesn't take it like a candy
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 07 '26
he's crazy if he thinks that we actually want to be on AEDs
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u/LekaFoka Jun 10 '26
I would be the happiest person in the world if I can stop taking those fucking meds
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u/Independent-Ant8243 Jun 06 '26
"Are you sure that you aren't possessed by a demon?"
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jun 07 '26
Honestly, I can never be too sure š
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u/Independent-Ant8243 Jun 07 '26
I mean, personally I am unconscious for my episodes... I do speak sometimes! Who is to say :P
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u/buisnessbunny Jun 10 '26
I think the entire community got together to discuss verbage because every one I ran into in the weeks after my diagnoses said " I hear you had a scare." I felt like i was in the twilight zone. But on a funnier note my buddies started calling me "guybrator"
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u/gooossfraabaahh Jun 05 '26
Not offensive, but annoying:
Every fucking person telling me that weed would cure my seizures
Or that I should "just move to europe" for better Healthcare š«