Friends and seizures

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Ananya

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Hi,

I have 2 types of seizures, grand-max and absence seizures. I am in college and I keep having absence seizures and though my grand-man seizures have reduced dramatically I had multiple absence seizures in front of my crush and he thinks I am weird and we have not spoken. I feel that this is destroying me slowly and when I was in high school I had a grand-mal seizure in my English Class and I lost bladder control and peed everywhere. I'm scared that everyone will think I am a freak and not want to be my friend and I will be alone in life.
 
Welcome, Ananya! :D

I'm sorry to hear that your grand-mal and absence seizures are making it difficult to have friends. I started having grand-mal seizures when I was 9 years old, but was diagnosed with epilepsy when I was 14. Although, even as an adult I will have grand-mal seizures that slowly progress into epilepsy. So, I guess I have two different types of seizures as well.

I remember wetting myself at times when I was in the 4th grade - 8th grade and all of those times - I was at public school. It was so embarrassing, but of course I didn't understand to feel totally embarrassed until after I snapped out of it, which usually was when I was at home. I remember one of the times, I had enough in my mind to ask the teacher to get to the nurse's office and got a change of clothes. I have many many of those types of stories, but they're all terrible and I'm surprised how many teachers don't know what to do when a student wets themself. I had one teacher give me her sweater to wrap around my waste and told me to get to the nurse and wrote me a pass. I had one teacher, though, that let the pee puddle sit on the floor all day long (and we were in that class almost all day). One time I had a friend give me her sweater and followed me all the way to another class, trying to convince me to go to the nurse and I kept saying, "I'll be fine." and they're like, "This isn't fine!" I didn't go to the nurse that day, either. I don't know if she like honestly didn't notice the big yellow puddle on the floor or if she didn't know how to address it. I sat in those clothes all day long, not knowing much better. By the time I got home, my legs were irritated, red, and raw. It was so painful. I tried so hard to hide it from my mom, but wasn't able to when she found my wet clothes.

I remember my mom was like, "No way is this happening in high school. Middle school is bad enough," and she started having me use the bathroom every day before school, because I wasn't doing that before and I never had another incident of that.

But the loss of bladder control can happen to anyone and it's common with seizures. After wetting myself so many times in school, I didn't lose a whole lot of friends for that specifically, it's that they just didn't talk about it later on or ponder upon it. I have lost more friends that have seen me have an epileptic seizure than to peeing my pants during a grand-mal seizure. It's kind of weird, but that's what it has been in my life.

It's true that it's hard to hold friends with seizures, it just is. I think other people a lot of the time are afraid. When I started to date guys when I was in my teenage years and beyond, after a few months or something, I knew I'd have to tell them in case something happened and if they were going to be in this relationship for the long-haul then they wouldn't be afraid. I don't think I ever had a guy leave me for that specifically. The first two I dated were simply jerks and then I met my husband who had many friends growing up that had seizures so he knew how to handle them and what to do so it didn't bother him. Although, it scares him to death when I'm seeming out of it or about to have one because he doesn't want me in the hospital.

Yes, that type of thing is difficult and embarrassing, but as much as it hurts - life still moves forward. This wasn't something you could help, I sure hope by college that people might be more understanding that that type of thing isn't generally typical adult behavior, but understand that type of thing could happen to anyone that had to go bad enough and perhaps was ill, not able to make it, etc. I would find that the sooner I would come back to school, the better, because people wouldn't ask as many questions if I had a seizure the day before and was able to return the next day. People may come and go, but the ones that are your true friends will stick around through it all. Sometimes people are a bit more forgiving than you think, too, and other times they aren't.

I hope that things work out for you!
 
Hi Anaya,
I started having absence seizures when I was 10 and then by the age of 12 the complex partial seizures started also. I had a hard time in school
because nobody understood my seizures and they were afraid. I later went to a boarding school for 3 yrs. but I came back to the public school
where I had been going and graduated with my class. I found if I was more open to my friends that they understood my seizures better.
A few yrs. later I began working in public school as a Teacher Aide in Special Ed. and I connected to a lot of the students and was even able to
help some parents understand their childs seizures.

While working at the school I would often have seizures especially when students were using their cell phones and this is when I found out
I was sensitive to cell phones and the frequency they use could trigger seizures for me. I would often have a complex partial seizure and walk
out of the classroom and not even realize it and when I came out of the seizure I would find myself some place else in the school. While this
was happening the students understood very well what was going on because I told them I had seizures and what would happen so it didn't
bother them that much.

Years ago I got married and my husband knew from the very beginning all about my seizures and what could happen. He has stuck by me
for 35 yrs. even when I had 2 brain surgeries to help reduce my seizures.

Take my word I was hurt by a lot of people over the years that didn't want anything to do with me because of my seizures but I pointed out
to them all of the famous people who have or had epilepsy like Elton John, Prince, Edgar Allen Poe, Alan Faneca (retired professional football
player) and many more people. This woke them up and made them realize a person with epilepsy is just like your everyday normal person.

I wish you only the best of luck and May God Bless You,

Sue
 
Hello. I've had simple partial (petit mal) seizures since I was little. I can recall complaining about "weird feelings" in my head, & nobody could understand what they were. In 1987, I suddenly had 3 or 4 grand mal seizures. That's when I had one of those "feelings" during an EEG that they did. The neurologists finally recognized them as simple partial seizures. About 23 years ago, I began having complex partial seizures. Those have been very troublesome for me. I've injured myself many times during them. They occur without any aura. A witness, large time gaps, or something I've done to myself or my surroundings (if I'm alone) are the only way I know when one has happened.
 
Hi Ananya, welcome! I "second and third and fourth" the things CWE members above have said. :)

It shouldn't be, but one aspect of having epilepsy is educating others. Many people don't know about partial seizures and all the different ways a seizure can manifest. You may not want to let everyone know, but if you can be matter of fact when you tell folks it can go a long way towards making them feel comfortable. It's okay to call it a "seizure disorder" rather than epilepsy -- that can prevent some of the knee-jerk reactions that others may have. I think for the most part, folks close to you are better off knowing what's going on, if you feel up to talking about it. If they are mature enough to empathize or understand, that's a bonus. :) Not everyone you meet is, but there are plenty of gems out there, I promise.

Best,
Nakamova
 
Ananya,

Did your crush stop talking to you, or did you just stop talking to eachother? Seizures can really freak people out, but sometimes they just don’t know what to do or say. I’m sorry if he wasn‘t very nice. It‘s very easy to get down on yourself, especially if you don’t have the support you need, or if you didn’t have it growing up. It‘s important though that you don’t allow that to keep you from meeting people and finding friends. You deserve to be loved. It may be harder with epilepsy (like everything), but keep trying, and be open to other people. You will meet people who can accept you, seizures and all.
 
Ananya,
As a 49 yr old, just recently diagnosed with epilepsy, i cannot say i completely understand your position. BUT, i can tell you that people can be cruel and mean-spirited at any age for sure. Matthew makes an excellent point though, really analyze what happened with your "crush", to understand it. I have found that more often folks are scared into silence, rather than intentionally ignoring you or ending a relationship, as they just dont understand. I was shocked at how common epilepsy is, or any type of seizure disorder, simple because of how UNcommon it is for people to really know what a seizure is, and how to deal with it. Both in the sense of physically helping the individual who is having the seizure, and in the sense of emotional and intellectual support for the person having the seizure, and the person witnessing them. Although it is early in my life of epilepsy, i have found that what gives me comfort is to daily tell myself that i am not EPILEPSY, i am instead, a person who happens to have epilepsy. Do not let this disease define you! And keep posting and reading posts here, it is a great support to have others who understand and love you. You are deserving of love. If someone cannot see that, then they aren't worth your time or the love you have to give.
 
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