Having seizures & friends aren't being supportive

[Bethany]

Hi, my name is Bethany and I started having seizures about a year and a half ago. I ended up having a brain bleed, my blood wasn't clotting and to fix it my blood specialist gave me an overload of platelets to help. Because of it, the blood in my brain clotted, causing me to have a stroke and since then I've been having seizures. Luckily, the stroke didn't do to much damage and I'm fine but the result of seizures suck. My friends don't understand and they used to be supportive but since my last one, two weeks ago. They said their out of sympathy because I don't have them constantly. As if I can help it! Anyway, it just scares me so much, I'm sad and I'm anxious a lot now. I've had both partial and grand mal seizures. Anyway, just wanted to share some of it.
Bethany

 

[epileric]

Welcome Bethany

Always good to have more people to give their input here.

Epilepsy is one of those challenges where we all seem to function very well until we have a seizure. I recently applied for "disabled" status & because I could walk, talk, cook & dress myself there was no way they would give me the status. Of course, after one of my larger seizures all that can be a different story.

Personally I'm much happier without sympathy. A little understanding that I might be tired, confused & maybe moody is all I need.


Meanwhile, I hope you take the time to look around & get comfy here. Most the people are really supportive.

 

[PhylisFeinerJohnson]

Welcome Bethany!

You have found a community of knowledgeable, caring and supportive people.

When I was first diagnosed as a teen, no one knew what to do with me. My parents refused to use the “E” word. People treated me like I was some kind of pariah (which didn’t make me feel warm and fuzzy either.)

Guys never called back for a second date.

The Dilantin made me feel like a zombie. I even went into a coma once.

Epilepsy was my “dirty secret.” Like it or not…

But as I started to accept my epilepsy, I started to accept myself. And I think the confidence of those "vibes" went out to others. If I wasn't afraid, why should they be?

And after 40 years I've learned that epilepsy is just a condition. You alone are in charge of your life and you alone choose your your destiny.

 

[douglas]

Hi there. Sorry to hear about your condition.

I find that there is quite a lot of mis-understanding and still some stigma attached to seizures in the real world.

Personally, I hide my condition from friends. I just try to keep it within my very very close family members. I dont really go into details about my condition with people -- other than my neuro and on occasion other eppileptics, and on the very, very rare occasion, a very close friend.

Unless you have a very serious case of the condition, meaning you are on multiple meds and having seizures every day, you will tend to look quite 'normal' most of the time to people, but then, once in a blue moon, be 'abnormal'. Thats hard for people to understand, unless they have a very good and up to date understanding of the condition. It makes them think all kinds of things.

A possible analogy. Have you ever seen a schitzophrenic on a bus? I think many of us have. So, imagine you take the same bus every day to work and see the same people every day. You see one person who behaves completely normal for 29 days, then behaves like a schitzophgrtenic for one day, then returns to behaving normal for 29 days. What are you going to decide that this person is or has?

 

[Bethany]

Thanks for the comments everyone, it's nice to talk to and hear other stories of people who are on the same page

 

[valeriedl]

The man that I was dating when I first got epilepsy really couldn't deal with it so the relationship sort of just dwindled off.

I made sure that on our very first date I told my husband that I have epilepsy and what to do if I have one. I let him know that I have all different types and tried to explain what some of them were like.

We had dated for about two or three weeks when I had one. He called my parents and asked what to do. They said just to make sure that I would't hurt myself and to keep track of how long it lasted and to call them back when I came out of it. After about 10 minutes I still wasn't out of it and they said they were on their way and we were going to the hospital.

While in the ER my mom looked at him and started crying. He asked her what was wrong. She told him that he was going to be just like ever other guy. When they see what happens to me then they would leave. That was 7 years ago and now we are mairred.

I always make sure I tell everyone that I have epilepsy so that if we were somewhere and I had a seizure they would know what was going on and what to do.

I do have friends that won't go out when it's just the two of us. My husband's son is one of them. I've just learned to deal with it. When I spend time with them it's when we are with other people. The true friends are the ones that understand.

Do your friends understand that seizures don't come on in a regular time peroid and as you said you can't control them? I may go a month with out one and then next thing I know I might have two in one week.

 

[alivenwell]

Personally, I think our media definitely exaggerates epilepsy (and other stigmatic medical conditions). If they spent a little time educating the general public rather than exposing others to a flawed exaggerated image of people with epilepsy, it would be a great move forward for all of us.
This is how I explain it to others: I reboot just like your PC reboots. I return back to normal afterwards. And everything is fine again.
Personally, I've had to go out of my way to say hello to others because they may have an off the wall image of this condition relative to MY seizure disorder. I have cleared the air and told many people about it. The true friends emerge after that is done. They're out there. I've seen people speak to me in a private setting, but not in a group setting. They're nice. Just not as gutsy to come forward and show acceptance for fear of also being stigmatized or excluded.

I've had this condition for many years. Frankly, I do not worry about those who stigmatize epilepsy. They are not worth my time. Our employers are grasping the concept that people with disabilities often solve issues in a more creative way than those people who have no disability. We constantly think 'outside the box'.

I have personally found exercise and music to be great stress busters. So far, that has helped stop seizures for a really long time.

 

[Bethany]

That's awesome Valeriedl, I'm really happy for you. Luckily, I have found a couple guys before who weren't scared about it (It didn't really work out because of me not them) I do hope that I'm able to find a guy who is ok with epilespy.
And yes, I think what bothers me the most is I've had these friends for almost 10 years, they know it's not all the time and that I can't control them, the odd thing is, is they think that after a year and an half I should magically be better. I can't work or drive and have to live at home with my mom and for some reason it annoys them now. My nerologists haven't figured out the cause so, I mean what am I suppose to do? It's kinda crappy they feel like this over something I have no control over.
Thanks for your experience also, alivenwell, I don't come out right away and tell someone I just met right away unless I feel that they maybe someone who might really become a friend. And that's really interesting about exercising and listening to music, I guess I don't realized I'm stressed until I'm super stressed. So I'm gonna try and work ok it.

 

[Ann T.]

Bethany:~D

Hi! Ah, isn't having seizures, lack of freedom (no driving, swimming, standing on ladders, living w/ mom) & friends dropping you like a hot volcanic rock just WONDERFUL??!! (Okay, I'll stop the caustic sarcasm...) I'm glad you've dropped by, Behtany. Take off your shoes & get comfy. You're more than welcome to visit the rooms in the mansion that Bernard has built for us. ;-)

Please don't misunderstand me, because living with my mom has been a Godsend, especially since the mini-city I live in has limited public transportation. My friends at work sympathize with me, yet when I have a seizure, they get right in my face & scream, "ARE YOU ALL RIGHT??!! CAN YOU HEAR ME, ANN?!!!", which terrifies me because I hear them screaming at me right as I'm coming back to reality. I agree with you, it is so, so difficult having a medical condition like epilepsy, but please remember that you must not let epilepsy define who you are, Bethany.

The way I cope with my epilepsy is I maintain a sense of humor about it, & I've discovered I like to explain myself when people ask me why I'm squeezing/hugging the Charmin so hard it pops open & reshapes the tp rolls, or why I'm putting 20 packs of Oscar Mayer bacon into my grocery cart. When I tell them, "Oh, I have epilepsy.", they are very understanding & ask me if I need any help. What I find unusual is that total strangers are more unnderstanding & patient than my friends. That's one of the reasons I came to CWE. The frustration of lost friendships & alienated family members, yet having no one to discuss it with were other reasons I came to CWE. Sooo...have fun here & you can pretty much discuss anything @ CWE. Once again, welcome aboard, Bethany & take care. I think you'll enjoy the ride. ~Ann

 

[douglas]

...but please remember that you must not let epilepsy define who you are...

I agree 110% with this one!! absolutely correct. you can not let a condition define you or take complete control of your life and all the wonderful things, people and experiences that you can have out off this life.

bethany, if your friends stopped being your friends because of this condition, then they weren't 'real' friends as you may have thought they were. no reason to judge them or go out of your way to avoid them, but definately something to keep in mind about them. the freinds that stay with you and stick along with you are real freinds.

best of luck,.,

 

[peachy]

As a fairly newly diagnosed epileptic I have found that seizures definately can't run your life. I am 42, single mom, teacher. It has been a rough year. I didn't tell my students, probably should have, but didn't want to. I get SO tired of talking about it. When I see people that know, that is all they want to talk about it. I want people to ask me stuff like how was work, how is your kid, what are you learning on the guitar this week, what is new, NOT how many seizures have you had this week and are your new meds working and how was that test you had done or how are you feeling. Gee I feel fine but occasionally and more than I like I do weird stuff. I don't want to talk about IT. I have found the less my seizures are talked about the happier I am and the less stressed I am. I really feel that only family and close friends need to know. They are probably the ones that understand the situation and you the best. If your friends leave you because of a problem like this then they really aren't your true friends. Hope the best for you.

 

[Bethany]

Thanks for you input! Yeah I am trying not to focus on them so much, it is tiring be anxious and scared a lot of the time. I feel like I get my life back to normal and then another one hits! But I don't want this to control my life. I guess I find it just surpising that my friends are "running out of sympathy for me." I know they love me and I guess they want me to be well just as much as I do, but they just don't understand what it's like. But yeah, I'm trying to just stay positive and have faith that it will all work out

 

[Becky03]

Bethany, I would send them an email with an attachment that tells them what Epilepsy is. If they said, they can't have sympathy for you because you don't have them all the time. I would explain there are different types of seizures some worse then others and ask them no matter what type of seizure disorder I have, does this look like something I would want to have happen to me all the time? If I had a choice of having it and not having it I would go with NOT. I do have a choice of having you as a friend and since you can't be understanding of my condition, then I choose NOT. No one needs people like that in their lives. If they are young and are just afraid because they don't know what to do, you have to explain to them what to do and make them more relaxed encase something does happen around them. I had a friend who saw me have one and she just cried because she didn't know what to do and when I was able to talk again she asked me if she should of tried to help me not swollow my tounge (which no one can do) I told her if she didn't mind missing a few fingers. If your firnds are just being ignorate then you don't need that. It's their loss not yours. If they still don't care after finding out more about the disorder then go and look for people who aren't so shallow.

 

[CQ:)]

Welcome to the forum Bethany,

I am probably going to repeat alot of what other people have posted.

You will find this is a great place to come to when you have questions, need advice & need to chat to someone who understands what you're going through. I have also found that this is a good place to let of some steam (the padded room) & if you need a laugh there are the jokes & funny pics threads.

I am sorry to see that you have had a bad trot with your epilepsy & your friends aren't being supportive. I don't know about you but 1 thing I would rather is that people don't feel sorry for me just because I do have epilepsy.

I know there are so many people out there who don't know much about epilepsy, don't realise just how many seizures there & there are now many different ways to help control seizures.

I also find that it is great if you have supportive friends & family but I know that it isn't always the way which is why these kinds of forums are great.

 

[CQ:)]

Always good to have more people to give their input here.

Epilepsy is one of those challenges where we all seem to function very well until we have a seizure. I recently applied for "disabled" status & because I could walk, talk, cook & dress myself there was no way they would give me the status. Of course, after one of my larger seizures all that can be a different story.

Personally I'm much happier without sympathy. A little understanding that I might be tired, confused & maybe moody is all I need.


Meanwhile, I hope you take the time to look around & get comfy here. Most the people are really supportive.

Hey Eric,

Is the Canadian welfare/disability system simular to in America?

I have a friend in America who has told me how hard it is to get a disability pension with some people having to apply a few times before they are accepted.

Here in Australia it is much easier to get unemployment benefits & there is no cost to have operation at public hospitals (although the waiting list can be very long). You can also get your medications cheaper if they are under the Pharmaceutical Benefit Scheme or if you are on unemployment benefits/pension.

The government is making it tougher to get on the disability pension though.

At the moment I get very tired, can have trouble concentrating (usullay when I'm over tired) & my memory is bad which makes it hard to work. I am also due to have a video EEG in November & hopefully will be able to have brain surgery in the next 12 months.

Because I do have trouble working at the moment I recently applied for the disability pension. I had to get my neuro to fill out a medical report & then I had to have an assessment.

At the assessment I was told that because I can function on my own (I do live on my own & I can get to places on my own) & the epilepsy is not 'treated' until after the surgery there is a good chance that I may not get the pension. The lady who assessed me told me the best she can do is that I only have to do 0-7 hours a week work.

I am now waiting to find out my results from the assessment. I am pretty sure that I won't get the pension but if I only have to do no more the 7 hours a week work it will make life much easier.

 

[epileric]

Hi CQ,

I"m not too familiar with the American welfare system so I can't really say how Canada compares to it.

How you described your system sounds almost identical to the Canadian one though, both in how they're set up & how they're making it harder to get on disability.