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When you first told someone you had epilepsy, what did they do?
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phylisfeinerjohnson posted:
When you told a relative, friend or lover, that you had epilepsy, how did they react?

Were they curious, scared, nonplussed, accepting or in denial? Did they stick around or head for the hills? Did they ridicule you or want to know more? "How can I help you...what is it like...how does it feel?"

I can't say my early experiences were very positive. My parents were repelled and never said the "e" word. They treated me like a pariah and assured me that I would never amount to anything

But what was it like for you?

Phylis Feiner Johnson
www.epilepsytalk.cocm
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saxofone1 responded:
Hi Phylis

I had my 1st seizure in the spring of '75. I was in the 8th grade. It was Easter break. The 'friends' scattered when word spread that I was having seizures.

Many people told me that "it doesn't matter." But when they witnessed one ... never saw them again. High school was tough. I would have a seizure while talking with someone...come out of it...where'd they go? They didn't go for help...they split.

The black students avoided me. ( that's a whole other story.) I got most of my support from my white/asian classmates.

Dating was also diffucult. I was letting the guys know about my epilepsy. "Don't panic/be scared if I should have one." The guy would witness one and suddenly disappear like "Casper, the unfriendly ghost."

My mom was very supportive and open with me about my epilepsy. Many times I found myself counselling her.

Two young ladies who knew me prior to my 1st are still with me today. I met "G" in 1966. I met "V" in 1968. They are great "sisters".

The people who were most interested in my seizures(why does it happen?, does it hurt?, what should we do?) were the young kids(k-3). I worked with them for about 5 years in Ca. and for 10 yrs when i lived in Mpls. Great support team.
"You'll be okay, Miss Angie" Wonderful age.

I never hid my epilepsy from anyone. I ltr felt that if they didn't want to be around me so be it. Their lose.

I could talk on and on about acceptance/rejection regarding our epilepsy. You keep being you. Living with epilepsy takes strength and courage. Hold on to your's.

I hope I'm making sense. Take care.

angie
 
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Seizureprone responded:
I know how hard it can be I lived with tonic-clonic seizures as I recently learned they are called mostly, but they are also called grand maul seizures. I was 5 when they began, never treated or officially diagnosed until recently. treatment started January 2010, diagnosis was in April 2011.

But due to doctors turning off the eeg test durring the hyperventalation test 2 minutes before my seizure to see more patients and make more money refusing to turn the machine back on to register that I did indeed had epilepsy, They just like a broken record. said about 5 times to my mother "If I do it will charge you another service fee and cost you more money." These where doctors who took a vow to help people doing this, I seen 8 different doctors who never believed I had it until I had one in front of their eyes after turning off the machines to catch it always 2 minutes before my seizures, like they somehow knew I was going to have one.

now because of this though a law judge for disability is supposed to take eye witness accounts over doctors records that do not say officially I have epilepsy who denied and dismissed the eye witness accounts and made it so I can not qualify for disability again unless I get a job, and with no job wanting to hire me because of my seizures having a 1-3 second real time warning before I am flat on the floor. I will never be able to get on it the normal way, and yes no matter who tells you epilepsy can not be considered a disability is lying to you. The US department of health states any illness or medical condition that puts you at risk of fatal operation to your self and/or others is a disability. Driving then go into a seizure you put yourself and others at risk of fatal accidents. thus it is a disability.

And yet the mere suspicion of epilepsy supposed to be a flag for immediate approval my state tries to fight it. Because 1 is can be treated but not cured, hell I am on the strongest treatment currently available and never missed a dose and I still have seizures and they still try to deny me.If you are in this state I am in yes you can sue you have a case for lawsuit against the SSA (Social security association) I know because I asked my state senator who resides in Washington DC, He said from what I have told him and I told you here I can and have a lawsuit against them. And I can sue them to the point they will have to go back 27 years for payment and I can include medical stress and comprimisation due to this. as a child I should have been on disability since I was 5. and I was denied for 27 years and now no longer able to file unless I work and then if I do they will fight and deny me due to the fact I had and was able to work. Which it shows the US government has failed the people.

But what is worse in this my mother witnessed and until my father seen me have a seizure he did not believe me or my mother that I had seizures.
 
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dancer86442 replied to Seizureprone's response:
Seizureprone,

I am in AZ & tried to file for Disability this YR. Not SSI, just Disability. Anyway, according to the person I talked to, our Parents must file for Disability B4 we reach 19, if we expect to get anything out of them. As for SSI, well, I Know I don't qualify for That, becuz, I don't have enough work credits. DUHH, I was Unable to work for 10 yrs due to seizures & med Side Effects. By then, I was married & didn't consider it. Until last Yr. So, back to just Disability. Again, Nope! Why? Cuz, Hubby has too many vehicles in his name. In other words, too many assets to qualify. Now, if that don't beat all! Especially, since I don't Drive! :(

Angie, I'm w/ you! Kids have been More Support than most adults. My family never said a Word when I told them. Yet, my Mom had known since I was a toddler. She never spoke about my Sisters', either. The first time I heard Seizure, was when my cousin had an 'episode'. We were told to stay away. :( The subject was dropped. I was 26, when officially diagnosed, in the Air Force & booted out. I came home thinking I was 'cured'. I worked a Summer Camp, then Ran to Maine. Once there I was told to go to the radio station & tell PPL my story. I did & had a home in 15 min. But, these PPL refused to talk, also. I lasted less than 6 weeks & went back to Texas. My Girl Friend took me in, but, she was at work or asleep. I only had her Boys to keep me company. A Yr later I had to move in w/ my Sis & Her family. Again, the Kids were my Lifeline. Shoot, I lived w/ Sis for several Mths B4 her Hubby told me about her seizures. And reassured me that he knew what to do if I had one. No One wanted to 'talk' about Epilepsy. Then came 2 Hubbies. They didn't run. Both knew what to expect & how to deal w/ me. But, I was still 'clueless' what was happening. And then I found WebMD. Epland was/is the Best, other than Kids! :)

Thanks to Epland, I started telling PPL in my Life about Epilepsy. I don't care if they are sick of hearing about it. When I get the chance to speak to others' I Do! I was 'quiet' & kept in the Dark, sooo Long. I ain't going back down that 'rabbit hole'. :( ;)

Phylis, You proved your Parents Wrong! And I Am Proud Of You! Epilepsy Makes Us Stronger PPL. But, having the Courage to go on w/ our lives makes us Better PPL!

Love Candi
 
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bluechi286 responded:
I was lucky enough that my friends didn't really look at me much different. My relatives were pretty much the same way... with the exception of my mother. She found out when I was 8, but always tried to ignore it and convinced herself that it was something that would go away. It seems as though she still quite accept it.
 
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clarinet2 responded:
Phylis,
I was diagnosed at 11 years and lived in a small town, but due to a mother who worked at a hospital I learned to be open about complex partial seizures. When I met someone new as a teen I simply explained what my seizures were like and also explained the Do's and Don'ts! If the person became uncomfortable, that was their loss.

By opening up and giving friends, family and other citizens the knowledge it is similar to explaining what to do during diabetic reactions, CPR and what to do if someone is choking.

Grade schools are becoming more educated with seizure disorders for the benefit of other students and teachers. We need to step forward in society to not be uncomfortable to open up and educate the public.

I was lucky to apply for my 1st full time job with the government at a VA Hospital. Discrimination is not accepted there and a job was found that would suit my needs with seizures. I was employed through the government for 12 years and still struggled with complex partial seizures before I became seizure free due to surgery and medications. I have now been with the same job for 25 years.

Support groups are a great way to meet others and learn from their own experiences. This gives you the opportunity to reach out and educate each other.

By talking about it more, this can open the eyes of other citizens to make them understand and learn more.

Good Luck!
Dana
 
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saxofone1 replied to clarinet2's response:
Great job, dana. Your story reads well. Let's hope it gives others the strength to be open, not ashamed/embarrassed, to talk about their epilepsy.

Thanks for including some of the things I left out(work history and support groups, etc.)

Phylis, what do you think about the stories that you've received?

Have a good day
angie
 
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dancer86442 replied to saxofone1's response:
Hello Everyone, I think your stories show a Lot of Hardships, that can/have been overcome w/ Support, Faith & Courage. :)

Yesterday I had something Awesome done. One of the Tattoo shops was doing Friday the 13thTattoos for $20. I now sport a Purple ribbon w/ a Purple butterfly perched on the edge on the inside of my arm below my elbow. :) It looks Awesome. If/when I get the money, I would like to add the words, 'Faith, Hope, Support, Cure'

Dana, or anyone, :) can you inform us of some of the things that happen at the Support Groups. Like if someone wanted to start their own Group, I know ads, cards, bulletin boards, even Craig's List, would be the way to Reach Out. And of course 'educational material' would be needed. But, what about B4 &/or after the meeting? Does anyone have any thoughts on activities &/or fun things to do? Or do the Groups just 'educate/commune' w/ each other & head home? How often should a new Group meet? :) Any Ideas/ thoughts are appreciated. :) You can start a New Post to reply to this. :)

Love Candi


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