Social Life and Epilepsy

[EdenFox]

Hiya,

I was officially diagnosed about five years ago when I had my first Grand Maul , I have Myoclonic and Absence seizures and have had those since I was five. I have a Grand Maul 2-4 times a month it use to be even worse, was every week sometimes a few days in a row. I'm bad with introductions not sure what to say but there is something I really wanted to know about.


I was wondering if anyone else noticed or had problems with their social life while coping with Epilepsy. I use to go out all the time and my mates would always keep me in the loop for anything going on. I had a few seizures in front of a few mates and ever since I feel like they avoid going out with me. There was also a lot of times I couldn't make it to events or a party because I was having Auras that day or just really sick, I"m sick a lot since my seizures are sill not controlled and my meds keep changing. Of course I am limited to things as well now, the driving, drinking, clubing and such. I have a tight circle of friends and I would hear that there is something going on and I would be asked if I was going and I would always be the only one left out of the loop or just not invited.

This never bothered me before but It has been going on for over a year now and I'm thinking back realising that my mates that I have been so close to for over a decade have been gradually avoiding me. I didn't even think this until someone slipped that I was asked not to be invited.


Does anyone get this a lot? Are people just scared because they don't understand it?

I never felt this way I always felt wanted and loved by my mates and family, but now I feel shunned and Isolated. My Sister will no longer speak to me because she thinks i'm doing all this for attention, Seriously ? it does the opposite!! why would I want that it is super embarrassing too!! Even my Mum didn't take it seriously until one day I had a Grand Maul Seizure at the Health Centre and then she really saw what was going on with me.

I am scared now because this deep depression has seeped into me and I don't' know how to deal with it. I honestly have so many days that i'm just too exhausted to try anymore.

I would love to know what others have experienced and what you have done about it. Does it get easier to cope ?

I am tryin to remain strong and Positive but I realise that i need to talk to someone and educate myself on living with Epilepsy instead of just acting like everything is fine and not speaking out about how I feel.


CHEERS@

 

[MuayThaiFighter]

I'm glad you wrote your post and you aren't alone. Honestly I think a lot of people are afraid. Even to this day after years of being, "different' from the pack, I still have hard time understanding.

I remember always being out, hanging with friends. It almost seemed overwhelming being around so many people, and I never felt alone. If anything I had to deny a lot of hangout or parties. But now so much has changed and many friends are gone.

People are afraid of what they don't understand, and epilepsy scares a lot of people. Before I convulsed i'll admit I was kind of edgy about it. I had a friend who had E and I would get nervous around her. I never denied her friendship, but chronic illness is hard for healthy people to relate to.

My best advice is to possibly branch out in life. Find new hobbies if possible and meet new friends. Because close minded people are unlikely to change anytime soon, or not at all. Plenty of individuals out there would probably love to just hang out with you. You just have to seek them out, and they won't care if you have auras. They will except you for you. Ultimately that is what we all want, real acceptance.

 

[EdenFox]

Thank you for replying it helps, I was just talking to one of my mates that I lost touch with and he said "Unfortunately when people get sick a lot of their healthy mates ostracize them and its really unfair but it so common" I'm really glad that I have this person still in my life and loves me for me.

and after reading what you said it really makes sense, I'm happy that I have some sort of answer and can start some goals to dealing with this.

Did you use to do Muay Thai? I use to be on a womens team doing Muay Thai Kickboxing and wrestling, I loved it I was the only South Paw miss it a lot. :mrt:

 

[MuayThaiFighter]

Not a problem, I read what you wrote and I relate to it a lot. I used to be the life of the party haha. But id prefer to have few close friends who are legit, so everything happens for a reason I suppose. Feel free to PM whenever, I'll try to be as helpful as possible!

I did do Muay Thai, I trained with a group of people who were fighting in MMA. I've been doing martial arts since I was little. I did grappling a lot as well, loved wrestling and Brazilian jiujitsu. And ranked in Judo, so a lot of stuff back in the day. I miss it like crazy. That is awesome you competed! I'm sure one day you can go back and train.

I'm also south paw, I love how it confuses the hell out of people.

 

[Boycie]

To be honest, I've experienced a different reaction. I've not had a conclusive diagnosis yet but due to the limitations as you say in your post, I've had to be up front about the possibilities with my work colleagues and friends. I've been amazed by how different people have reacted. My wife is currently over 40 weeks pregnant and people/neighbours that I only previously would have closed as loose friends have gone out of their way to help us. I've had people insist that I contact them at any time of night or day if I need anything and offers to take me food shopping, and even to go do the shopping for me. My work colleagues ring me constantly to see how I am and if there's anything I need or if I want a lift to or from work.

I think it's situations like this that make you really find out who your true friends are. My best friend for the last 25 years hasn't offered to help once although does call & text to see how things are going and if I've had any news. I don't think any less of him for it, it's just interesting how different people react.

Others just treat me exactly the same, which I'm probably more comfortable with as I've never been one to ask for or accept help with anything. I'm stubborn like that!

My biggest disappointment is that my father has not once asked if I need any help, and considering we're expecting his grandchild any day now that upsets me.

 

[Janus]

Edenfox, I relate to what you wrote. Those feelings are what this site/forum has helped with. I love it here and we're in the same boat. Many kind people here WHO DO UNDERSTAND are here to relate to. Welcome... When i was diagnosed a few years back with E,I was afraid to tell anyone, I know it freaks some people out. With the support of good people here it got easier. I found out a person like and work with has E also and i had no idea t of good people on here it has become more comfortable to talk about.I discovered a p

 

[EdenFox]

BOYCIE that is wonderful! Congrats on the bundle of joy, I'm so glad you have such great support. I'm very sorry about your father I guess it is interesting how people react. Someone you barely know goes out of there way to be there and become a good mate while your own blood shys away. So strange. I do notice thou when I was still living in Hanwell it was a lot different then here in the States. I had a massive culture shock coming back to the States, socilaising is very diffrent here

Janus

Ha Eraserhead!!! I love that movie. Thank you for the encouragement, it is really nice to know I'm not alone and to have a place to talk.
:hugs:

 

[SlimBlue]

Hi EdenFox, welcome

It is saddening how many of the people you have spent so much close time with can just fade away. If you're part of a tight clubbing scene, then it can be for as petty a reason as noone wanting to deal with potential probs and spoiling their hours on the floor. But as has been said, it's mainly due to blind fear and ignorance.

It's hard to take that reminder of how selfish we can be, but don't let it affect the way you see everyone else. The 'kindness of strangers' still brings a tear to my eye when I see it and I always focus on that to reinforce my overall view on people.

Also has been said, you'll find out who your true friends really are, and it's those you want to concentrate on. They might not all be in your life right now, and whilst it can be tough to get out and about (virtual or TRL), that's what you need to do.

In our modern world that's quite tough for most people as it is, so a lot just tend to keep going with the shoddy aquaintances they've made so far, and hardly ever form more than a handfull of decent true friends.

In one way, E empowers us to cut the wheat from the chaff and have the cojones to search out and make *real* good friends who will always have our backs..

 

[Nakamova]

Hi Edenfox, welcome to CWE!

Some folks are just scared and confused by epilepsy -- all it takes is a little basic education and reassurance about E, then they can be the good friends they were before. Other folks don't have the capacity to learn and accept -- and those you'll have to let go.

I've found that it can help to compare E to asthma or an allergy -- you have to take it seriously, but it doesn't change who you are and how you interact with others.

I am scared now because this deep depression has seeped into me and I don't' know how to deal with it. I honestly have so many days that i'm just too exhausted to try anymore.

Sometimes the anti-seizure meds can make us depressed, so your neuro needs to hear if you're struggling with depression. Let your doctor know, and don't be afraid to ask for help. It's important that you don't try to tackle this alone.

Best,
Nakamova

 

[EdenFox]

Thank you. Im going to make sure I tell my Neurologist about feeling this way. I never thought that the meds might be the cause.