Do other people feel a lack of independence with epilepsy?

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jessica_1994

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I was diagnosed with epilepsy when I was sixteen, before which I relished the idea of learning to drive and finally having my own independence. Unfortunately however, this left me unable to drive, I've had to drop out of university and rely heavily on my family for lifts to work (I live in the countryside). Whilst all of my friends are at university they're making new friends and moving on with their lives and graduating, I've made very little progression. I'd love some independence, and I can't afford to move out (not to mention the fact I'd be even lonelier), is anyone else in the same boat? Or does anyone have any tips?

P.s. I have really bad social anxiety and very little confidence making friends. I've worked where I am almost a year now and I am only starting to get to know my work colleagues ergo, I am very skeptical about joining a club or a group or anything like that.
 
Hi Jessica,

I had my first seizure back in the beginning of high school. Since then, I've been on mess and seizures still continue. I don't even think about wanting to drive because of the seizures. I went to university and have got a proper job, but outside of that, I guess you could say I'm lonely as well. Fear of having a seizure has really taken over how active I am. What's more important to me right now is staying healthy. Eating well, exercising, and etc.

For me, I like the idea of being social, but I know in the back of my head, a seizure could be around the corner if I'm not careful.and by careful, I mean not getting too excited about things, not stressing, etc etc...so ya.....sorry, I don't think this helped you at all. Just know that you are not alone in this battle!
 
Hi Jessica
I know how you feel.
Although I wasn't diagnosed until I was 21 (59 now) I was able to stay controlled for 22 yrs. and then due to a seizure in a parking lot in 2002 I had my Drivers Licence revoked.

I felt like all my freedom was taken away from me, (I guess the seizures are harder to control as you get older). Plus I had to give up all sports including riding a bike.

I felt so lsolated, not being able to do what my friends are doing.

Randy
 
I definitely know how that goes since I have never been able to drive; and people just don't like to pick me up when it is on there way and I have to rush rah rush. Husbands can be real good at rushing to hurry up during the weekend and they take there flippin time. I'm very close to two two large cities that are spread out over a large distance. I can't always make it on public trans it to certain areas; and just because I have had epilepsy since I was a child doesn't mean it's not just as hard on me when I'm an adult.
 
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Independence

Jessica,
A big thing that a person learns after they are diagnosed w/E is that they have had some people who have said they were a friend to a person before that person is diagnosed w/E, but as soon as they find out that the person has E, they will abandon that person.
This type of treatment can make a person w/E feel very isolated and feeling like they have no independence. When you feel like this, you have to do some searching, both internally and externally! You will find that you have more confidence in yourself that you never realized was there, and you also have to learn how to reach out to others to get the support that you need. I have gotten support from some people that I never knew existed until THEY contacted me to ask if I would allow them to help.
There ARE people around who want to help others. Sometimes YOU have to find THEM and sometimes THEY will find YOU. You have to be willing to accept as a fact that some people w/closed minds are not going to accept you because of your E. Most of the time they feel like this because they don't understand as a result of 'Not wanting to understand'.
People like this are the type you DON'T want as part of your life because the only thing that interests them is their trying to belittle you because of your E!:rolleyes:
 
Where I live the city is very spread out and it's hard to do anything with out a car so yes that really does stop me from being independent. Also the things I used to be able to do on my own to fix and maintain my house I can no longer do. I can't even mow my own grass after waking up a few times on the hot ground I had to give that up. And of course since I can't drive I can't go to the hardware store and get much that I need to.
 
acs;
that is were you are wrong people don't dump you as a friend as soon as your diagnosed with E or I would never of had any friends because it's been all my life . They were never true friends if they were like that. I don't chose my friends only wanting friends who have know health problems name me someone who doesn't have any health conditions I have a lot of them.
 
Losing Frinds

Belinda5000,
If you read my post I said 'SOME' people may NOT remain a friend, after hearing that a person has E, not all!

ACsHuman
 
I agree with Belinda5000,
If a person no longer wants to be "friends" with you because you have epilepsy, it is not that they do not wish to "remain friends" with you, they actually never were a "real friend" to begin with.

True friendship does not come with a list of restrictions and escape clauses.
 
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Jessica

I have always had to depend on others for rides because I was diagnosed with E when I was two and I have never driven except for a few driving lessons is all; I'd suggest the transit system I use the bus and train often. I don't live far from Atlanta so I'm able to get around pretty much but there are times I need a ride places and I hate asking.
 
Jessica

I don't really feel that I am dependent on someone, but I do feel emotionally dependent, meaning that I often have the need to talk to someone, be hugged, kissed or whatever.
I don't like this feeling, because I simply don't like being weak.

What I do to cope with this: I win the small battles in order to win the war. It's really stupid, but it allows me to feel better about myself. I'd go to the gym, lift weights, I'd carry my own suitcase instead of letting my boyfriend/guy friend do it, fix something - literally do anything that makes me feel physically strong, and after that I'd start having a better attitude about being independent.

Hope this helps! Don't feel too bad, everyone is dependent on something and/or someone. :rose:
 
Hey Jessica,

I'm lucky my seizures didn't start for me till i was 37, thanks to a tumor, so i had my own place and drives license and all of that. Being single, isn't to bad, I found there is a key to not being lonely that works at least for me. And that is Learning, being curious about everything in life, from the smallest thing to the biggest things. Making observations in nature, the nature around you. Learning computers, if you are musical, learning music. The world is filled with interesting things to learn and observe. Maybe look to make something better, invent a new type of wheel, or something. :) Make online friends.

I agree with acshuman in a way, but not with current friends. None of the friends i had at least the close ones rejected me for having seizures or a brain tumor. But where the most rejections come from are from dating. Like meeting someone on a first date, which of course turns out to be the last one, once they hear of my seizures. Normally i try not to mention either, but sometimes they see my emergency pill holder attached to my phone.

Cheers,
Zolt

:piano: :pop:
 
When I was diagnosed with epilepsy I had to move back home and was unable to drive.. There is no public transportation here so I can't get around unless someone takes me. After I moved back home all of my friends lived about an hour away, had full time jobs and young children. I understand that it was hard for us to get together but after a while even the phone calls stopped. I have one friend who tries her best for us to get together as often as we can. The only thing that I hate is that the way we talk is usually texting, not actual talking conversations.

I'm a very outgoing person. My husband can't believe that I can just walk up to anyone and start a conversation, that's actually how the two of us met. For some reason I've just never been able to find a friend, it's usually just a one night friend that I get.
 
valeriedl said:
When I was diagnosed with epilepsy I had to move back home and was unable to drive.. There is no public transportation here so I can't get around unless someone takes me. After I moved back home all of my friends lived about an hour away, had full time jobs and young children. I understand that it was hard for us to get together but after a while even the phone calls stopped. I have one friend who tries her best for us to get together as often as we can. The only thing that I hate is that the way we talk is usually texting, not actual talking conversations.

I'm a very outgoing person. My husband can't believe that I can just walk up to anyone and start a conversation, that's actually how the two of us met. For some reason I've just never been able to find a friend, it's usually just a one night friend that I get.
Click to expand...
I very similar position
 
I've had epilepsy since I was 12. Until July of last year all I had were simple partial seizures and so after moving to Florida (for the first time) and seeing various new doctors, one of them cleared me to drive since my seizures were not severe enough. Last summer when I had 3 tonic clonic seizures (at least), I finally lost my ability to drive after driving for about 12 years. It sucks to have to be reliant on others for transportation. Fortunately after moving back to Florida for the second time (from Austin) and being closer to family, they have been able to help me. If I hadn't moved back to Florida and lost my driving privileges while living in Austin instead, I would've been seriously screwed over because of the lack of good public transportation. What has happened to me in the past few years really sucks but I try not to dwell on my issues. Medically there is just too much wrong with me to spend time mulling over it. For transportation I bought a new road bike and have commuted a few times to work and back home since I lost my driving privileges. It's good exercise, very practical and low cost way of transportation.
 
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