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rosanna1980

Doubting and Mistreatment

Since I had my first grand mal and was diagnosed, I've had a lot of family members act like I "made it up" or I'm faking it. They don't believe I'm actually sick. I have seizures almost every day- mostly in my sleep. I have grand mals and partial seizures. I'm scarred up from head to toe. And, they just wave their hands at me like i'm some kind of outcast. The seizures came out of the blue when I was in my 30s, so they don't believe it. Has anyone else had to deal with this? How do you deal with it? Doctors in the emergency room are SO RUDE, and don't want to deal with it so they wave me off when I'm sick from it (can't hold down food, etc...). I'm sick of people acting like I'm some kind of freak of nature! I feel like I don't belong...

Comments

Re: Doubting and Mistreatment

I have had that same experience. My friend did not believe me when I told him that I had a seizure at his concert and he asked me, "Why was I "ankling" to get out of here?" My seizures are provoked by loud noises and he did not understand it. He brushed me off and I did not like that at all. It made me feel like he wasn't listening to me and I felt like I couldn't talk to him about my Epilepsy. But you know what I have learned how to do is to ignore people that act that type of way. They are not worth worrying and stressing and screaming. That would bring on more and more seizures. I truly think that it is ignorance on their part and not taking the time out to understand what you are going through.

I have focal seizures. So my seizures go away really quickly. At times, the aftermath of my seizure is good and at times it can be REALLY BAD. I mean REALLY BAD. I tend to get sick to my stomach, the room be spinning around, and my body be badly overheating. It would be SOOO UNREAL!!!!

You know what... you are uniquely beautiful. That's good enough. You know that something isn't right with you and it is their choice not to listen. Don't waste your breath trying to explain your Epilepsy. Hopefully, they will eventually come around and give you the support that you need. Stay true to you. You know what's up. :)

 

Re: Doubting and Mistreatment

Thank you so much for that. I needed that. :)  Even a lot of DOCTORS don't believe me because I don't "look" like it on the outside and I get over them so fast. It's so hard for people to believe you when you're sick on the inside, looking "normal" on the outside. Sigh..... I stopped going to the emergency room because they are so rude and look at me like I'm making it up. Oh well.... like you said- I know what's up. :)

Re: Doubting and Mistreatment

Hi, Rosann

I find myself in the same situation you are in. I have TLE, so my seizures aren't apparent to anyone but me. Everyone is supportive and wonderful except my husband. He tells me that my seizures are "all in my mind" and that I should not increase my meds as my neuro tells me. I am pregnant and I  know he's worried about the baby and, in addition, his little sister died of status epilepticus in his arms, so there is some denial as well. I just wish he could be more understanding, or at least pretend to be. A few weeks ago, I told him that I felt a seizure coming on. I thought this would help us since I'm not very nice when I'm having a seizure. I thought it would help him understand that my behavior was electrical and nothing personal. He got so mad at me and told me that the only reason I thought I was having seizures was that I had the diagnosis of TLE. He wouldn't talk to me for three days, and this was my post-ictal period where I had a splitting headache and really needed some snuggles. I've learned to keep everything to myself, or at least share only with my mom. I can't tell him how my meds are working or if I'm having a problem or anything.

From my experience with doctors, I find that a female doctor is more likely to treat a patient respectfully. Unfortunately, I've developed some sexism toward doctors because I've had repeated bad experiences. The male doctors I've had simply don't listen and they know everything and treat me as if I were the queen moron of the world. I don't know if this fits your experience or not. I have the most wonderful neuro (woman) and she takes every word I say seriously.

I'm sorry to say that I don't have any tips for you on how to deal with this problem. I just wanted to tell you that you're not alone in having this experience. I don't know if it gets better as I'm still new at this. If it helps, I certainly believe you and I know how you feel. Hugs.

Re: Doubting and Mistreatment

I am sorry to hear that you are going through this with your husband ...but one thing he got right is that seizures are in our mind/brain...so he should understand... but I am a man and we cannot take our lady acting mean with us for any reason we are simple like that.. I am not saying it is ok though .. but maybe the doctor has to explain this to him not the spouse/ you....and he is scared of his wife/ you having these problems...and he does not know how to comprehend or handle this brain problem

Re: Doubting and Mistreatment

Together we can amaze, entertain and educate the public through entertaining stories of each person's specific Seizure in Public. I produced Spirit of a Subculture,Bike Messenger's in Chicago for WTTW/PBS. My next project will select 1 public entertaining story from 10 Epileptics embedded with information of our condition and lives surrounding the viewers.

For more info. go to; ambitiousmindsproductions.com

Sincerely Sam Inglese, Producer/Director/Epileptic

...

Re: Doubting and Mistreatment

My first seizure happened at age 30 in front of my coworkers. I had NO clue what had just happened, why everyone was standing around me, or how I got in that seat I was in. I just knew my head was throbbing and everyone was staring at me. When they told me I had a seizure, I didn't believe them and tried to get up and walk off, I was so upset by what I'd heard. I knew it was real when everyone almost in unison said "NO!" and made me hurry and sit back down. The most frustrating part is all the unanswered questions.....I had to ask my coworkers what happened because I had no memory of it......then it all snowballed- I lost my job, my income, family members, "friends", and on and on. I seems like just yesterday. I don't wish to share my experience in your production, but I'm definitely available to share my opinion, symptoms, etc.... anonomously.

Re: Doubting and Mistreatment

I am so sorry to hear the way people treated you mainly family .... I am a single guy.... when they took my license.. my kids and girlfriends drove me around... my brother and mother was at my beck and call any time any day... I guess I am very lucky.. I got my license back now.  your family, friends and co-workers were scared of the seizure ...I hate to say they were  ignorant thinking people it out weighed their love...we cant make people think a certain way....I always wondered how many people were burned to death by people thinking they were possessed  when a person had a seizure...in the old days?????

Re: Doubting and Mistreatment

I wonder, too. I've heard that SO many seizure patients, especially women, have been put in psych hospitals and/or considered possessed. I even had a doctor order a psych test for me once when I was in the ER. I went off on her for her ignorance about seizures and told her she was not qualified to handle my case. I told her I know my name, the date, the president, where I am, and anything else she wanted to ask. I'm not crazy. It's a physical brain condition, not a mental condition. Yes, seizures can look very scary with eyes rolling in the back of a person's head, jerking, and even foaming at the mouth, but it is a medical condition. We're not evil. In fact, I believe it is the opposite. They say most people only use a small percentage of their brains. I believe epilepsy leads us to use much more and is actually a spiritual thing that can bring us closer to God. I have looked up all of the leaders in history who had epilepsy and wondered what the connection was between so many extraordinary, intelligent people having epilepsy. I have very vivid dreams now, and "bionic" senses (hearing and smelling). I believe it is the opposite of evil and is something to be embraced. It is not understood by most. But, for those of you who believe in the Bible, it states that family and friends closest to Jesus did not/could not understand. Mark
6:4, NIV. "Jesus said to them, 'Only in his hometown, among his
relatives and in his own house is a prophet without honor.'" I encourage you all to embrace this condition. No matter what kind of seizure you have, it affects your thinking. Use it. I'm not saying we're all prophets or anything like that. But, the fact that our thinking and dreams are beyond the norm is undeniable. Look up famous leaders with epilepsy- From Julius Caesar, Pope Pius IX, Harriet Tubman, and so on. There has got to be a connection between this condition and greatness. We are amazing people....maybe too extraordinary for the average mind to understand.:)

http://en.wikipedia.org/wiki/List_of_people_with_epilepsy

 

 

Re: Doubting and Mistreatment

My first seizure happened when i was 7 then went away until I was in junior high age 14 then I had a second seziure Iwas taken to the hoapital from the nurse room an parents called etc etc. I was off school to see my doctor and then a nuerologist and I waas diagnosed with grand mal epilepsy in 1965 you wantto talk rough I would get in fights over my seizures, I got teased by the boys my age and pushed around to see if they could make me have a seizure so I would fight back and I was the bad guy I was expelled from school and had to see a shrink because I had seizures and even after the shrink said there was nothing wrong with me that I was cuaseing this trouble because I was being provoked the principle allowed me back in school if I behaved myself but 2 weeks later I beat the tar out of a boy that was teasing me and was expelled again and the boys parents filed charges of assault on me the police picked me up at home took me in for questioning and released me to my parents care.I went to court where everything came out before a judge and it was not pretty, I got a lawyer and my doctor ,principal,teachers,a couple freinds,the nuerologist,and a couple others specialist where called on my behalf to make a point of what had happened over a short period of time. I was found to be of stable mind, the charge against me dismissed, the judge spoke rather harshly to the princple for his way of looking at things,and I was told violence never solves anything. As I look back on these months of my first seizures I often wonder how I made it thru and I have heard other stories from other people that are younger than me and how they are embarrased by there seizures,these days my seizure seldom occur and when they do they occur when I am asleep at night in early morning between 5am and 7 am some grand mal and occasionally I will have one were I get up walk out of the house and walk around the block and back home,once I walked into a neighbors house sat down in a chair said "boy am I tired"and went back to sleep .these are things I live with.

Re: Doubting and Mistreatment

My first seizure happened when i was 7 then went away until I was in junior high age 14 then I had a second seziure Iwas taken to the hoapital from the nurse room an parents called etc etc. I was off school to see my doctor and then a nuerologist and I waas diagnosed with grand mal epilepsy in 1965 you wantto talk rough I would get in fights over my seizures, I got teased by the boys my age and pushed around to see if they could make me have a seizure so I would fight back and I was the bad guy I was expelled from school and had to see a shrink because I had seizures and even after the shrink said there was nothing wrong with me that I was cuaseing this trouble because I was being provoked the principle allowed me back in school if I behaved myself but 2 weeks later I beat the tar out of a boy that was teasing me and was expelled again and the boys parents filed charges of assault on me the police picked me up at home took me in for questioning and released me to my parents care.I went to court where everything came out before a judge and it was not pretty, I got a lawyer and my doctor ,principal,teachers,a couple freinds,the nuerologist,and a couple others specialist where called on my behalf to make a point of what had happened over a short period of time. I was found to be of stable mind, the charge against me dismissed, the judge spoke rather harshly to the princple for his way of looking at things,and I was told violence never solves anything. As I look back on these months of my first seizures I often wonder how I made it thru and I have heard other stories from other people that are younger than me and how they are embarrased by there seizures,these days my seizure seldom occur and when they do they occur when I am asleep at night in early morning between 5am and 7 am some grand mal and occasionally I will have one were I get up walk out of the house and walk around the block and back home,once I walked into a neighbors house sat down in a chair said "boy am I tired"and went back to sleep .these are things I live with.

Re: Doubting and Mistreatment

sradford

Hey im a new member on here . But I understand what you are talking about . My 15 yr old son started have one seizure after another on june 18th 2013 . After being admitted to the hospital after I refused to take him home without an explaination the drs finally witnessed what I had been seeing. He has been diagnosed with epilepsy . They gave me a couple of names for these seizures they start out as one type and progress to another is my understanding. He was having them in clusters for the first few days but now is down to one a day there has even been once he went 2 days straight without one.  I have been in a battle with my family over this though ! Because they haven't witnessed one of them he is supposedly faking them !!!! But he is not . I have had a lot of trouble out of him for the past 3 months and it was a drastic change from what his behavior was prior to all this . He was also complaining of muscle and body aches for months before his behavior changed. Now I know why ....he has them in his sleep ...full body convulsions and everything . But he doesn't  remember anything !!! I know my son is sick , I have seen him in these . I cant help but be sooo angry and resentful towards my family . My son tells me he is sorry all the time ....like he has done something wrong,,because I am out of work on fmla trying to get meds to stop them but we have  no money without me working and im afraid to leave him at home while I work 12 hr shifts with his 11 yr old brother to care for him and have no one else to stay with them. I don't think I will ever be able to forgive them for mocking him they way they have and I don't think I will ever let them back into our lives either .

Re: Doubting and Mistreatment

i'm so sorry yall are having to deal with all that! wow! i can't imagine! i thank God for the support we've had with family, docs, the school, and friends with my 14 yr old daughter! it's already been so hard on her with support, can't imagine if she didn't have that! well just hang in there and hopefully we can all keep informing the public about seizures and epilepsy!