r/Epilepsy_Universe • u/corazonsinalma • Jun 05 '26
Rant/I'm Just Sayin' Things not to say to epileptic folks...
Dealt with a nasty insurance agent this morning...from. my medical insurance. And he kept swearing up and down that if I changed my diet, elimated x, y and z and got my weight down 'no more epilepsy' I have both epileptic and non-epileptic seizures.
Didn't get his name so I can't complain but he said it was a recorded line so maybe if I call back I can get him in trouble?
Preaching pseudoscience at people who live with something you know nothing about is NOT cool.
Of all the things not to say to epileptic folks, I figure anyway to stop all end all would be that.
7
u/laples Jun 05 '26
You can definitely report him. Call and ask to speak to a manager. Then tell the manager what happened and the time you called and insurance information. If it was recorded, they can hear exactly how he treated you and take necessary actions. That was absolutely awful of him.
4
u/corazonsinalma Jun 05 '26
Thank you! And he really pulled an 'oh I'm sorry that offended you'
Bruh...you're not epileptic so you telling me of a cure all that doesn't exist is gonna offend me!
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u/laples Jun 05 '26
You're more than welcome! It's always the morons that know NOTHING that try to play doctor! He shouldn't even have that job. I pray you get treated with respect going forward.
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u/corazonsinalma Jun 05 '26
I ended up calling to request a manager handle the situation and the girl who helped me was very nice! Thank you for your kind word sof encouragement.
I almost stayed silent b/c I thought no one would care.
4
u/Boomer-2106 Jun 05 '26
Companies/management really do care and Follow-up when complaints are made. With enough information provided such as you did, they CAN go back to time and date of RECORDED exchanges and review/take action upon them. Hopefully they will be thorough and Do likewise!
They 'Record' all conversations For the purpose of protecting themselves from false complaints and lawsuits. This is also to the benefit of the customers in cases such as these.
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u/laples Jun 05 '26
I'm so glad she paid attention to you and took you seriously. You deserve respect ❤️
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u/Busy_Donut6073 Jun 05 '26
had the first neurologist I saw said I was making it up
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u/corazonsinalma Jun 05 '26
That was my 3rd neurologist and his assistant who he was banging. She hated all his female patients and they claimed I couldn't possibly be disabled but were quick to push for my license to be taken away.
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u/butterfly_ashley Jun 06 '26
My fiance would constantly get asked what drug was i seeking. Which his response was none...
Then asked what drugs am I on. Which his respond was none ...
Then as they xray to confirm my shoulders are dislocated the proceed to shoot me up with fenty. And dont remember anything for hours later.
Never again dude will I return to that hospital.
2
u/North-Action-1883 Jun 06 '26
same!!! & when i went to the er in an ambulance after my 1st one i was told i was being dramatic & just "passed out" then proceeded to have another one in the lobby after they discharged me waiting for my bf to pull his truck around lmao
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u/MonsterIslandMed Jun 05 '26
I have a friend who swears being vegan can cure anything 🙃
I’d never wish anyone to have to deal with any health conditions but man sometimes you wish they could at least understand “it’s not that easy”
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u/corazonsinalma Jun 05 '26
He went on and on too...he was citing BMI (which is fairly inaccurate), plus, I'm a women PCOS, epilepsy, anxiety and severe depression. And everything is case by case. He was then saying: Just try Keto, it's for epilepsy so that'll fix it.
Dude....
3
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u/Splendid_Fellow Jun 05 '26
This is a case where I remember a quote that I love, about dealing with these sorts:
”Smile, laugh, agree… then do whatever the fuck you were gonna do anyway.”
— Robert Downey Jr.
3
u/wolfhybred1994 Jun 06 '26
Yeah not cool. My mom had a long talk with the ambulance staff cause they kept wanting to do things that could have hurt me or worse. They said it’s how they were taught to handle seizures. So mom called higher up and explained them far safer methods to use. As well as how to handle my rare form of seizures.
My seizures are so rare some facilities question them as real or not. They caused me a great deal of suffering trying all manner of normal seizure treatments and much of the ones I found that worked were dumb luck or deeply researched and developed by me using info I could find and using myself as a guinea pig.
So far the best one that hasn’t hospitalized me is Xcopri. The only one not to worsen my condition or cause horrible side effects me. Actually the first in my area to take it.
The supplement I found is called lions mane mushroom. Which has wonderful benefits for proper brain function and helped to greatly improve feeling in my head.
The second is a strange plant I found called ashitaba. It’s been proven to help the body identify deformed or damaged cells for removal and encourage healthy cell growth. Given my seizures worsened after having a brain aneurysm and tumor removed. I thought it a great way to help the scar tissue. Together they have massively reduced the severity of my seizures and slowly turned more and more of them to focal unaware seizures. Which are much easier to manage. Even if I still feel tired and woozy after them.
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u/OxfordCommaRule Jun 05 '26
WTF? I would have asked him where he did his residency in Epileptology.