college student with partial seizures

[miranda]

Hey all! I'm a junior in college currently, and I've been seizure free for four years on medication. However, I'm having some trouble dealing with having epilepsy, and don't have any friends who have it. I've started thinking about post-college careers, which is scary enough as it is, but I'm worried about how my epilepsy will affect my job prospects, especially because I'm considering going into politics. There are very few people in the public eye that have epilepsy, which makes me (maybe irrationally) nervous about being successful. I also have to deal with a lot of stuff my other friends don't, like health insurance problems, extra hoops at the DMV, side effects, etc.
Any advice for a young adult dealing with this alone? My friends are all supportive, but I feel like they just don't get it. Plus I do a lot of social and economic justice activism, but I feel like epilepsy always gets left out of any conversations about mental or physical disabilities, which can make me feel pretty invisible.
Thanks!

 

[N Sperlo]

Hi Miranda.

Politics, huh? I played games in local politics on the law enforcement end. Epilepsy never played into it.
It is often times hard to find others around you with epilepsy, partly because people don't want to talk about it. I usually don't bring it up unless I have a reason. That is why I come here to talk about the issues with people who understand.
My suggestion on the job prospect end of the spectrum, is to do what you want. Epilepsy (especially controlled for multiple years) will not effect you. I work well outside the door of what people may expect from someone who has a seizure disorder.

 

[arnie]

Hi Miranda, and welcome!
Epilepsy, especially if you have mostly semi-well-controlled partial seizures, should not be a barrier to much of anything. I have been officially diagnosed since 1982 (I'm 55 now) and have several hundred complex partial seizures every year, in spite of having been on five different meds. I now have a vns which I hope will do a better job of controlling my seizures than the meds have done. Here's the link to a thread about my vns experience:

http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/

Since my diagnosis I have gotten a Bachelors and a Masters degree, was a professional social worker for about 15 years and have owned my own business for just over 15 years. I've also played in various musical groups and acted in numerous community theater productions. I'm ok to drive and do pretty much whatever I want, including rock climbing. I had a motorcycle for about 7 years until my wife talked me into selling it, because it scared her to have me riding it. Almost no one would know that I have epilepsy if I didn't tell them. I'm in extensive daily contact with the public, and have had many complex partials when I'm talking with people, and even one during a play last December. I guess people just think I've spaced out for a few seconds or am thinking or something. I tend to make a chewing movement with my mouth and often times get really pale. I don't know what they think of that, but it doesn't seem to affect the conversation and has never really affected my job performance. My wife of 34 years and my 3 kids are pretty accustomed to my E, but my wife still gets pretty scared by the seizures. One of my daughters (who is 33) also has epilepsy. She was diagnosed about 10 years ago and is well-controlled on meds. She has 3 kids and a great husband and a perfectly normal life.
But that's only my personal experience, and I'm certainly not a politician! (Thank goodness!) However, a quick Google search will show you many people who have epilepsy and you would never know it. Among them are Danny Glover, Neil Young, Neil Abercrombie (governor of Hawaii), Tony Coelho (former US congressman), John Roberts (chief justice of the supreme court!), Teddy Roosevelt, and on and on. Even Caligula had epilepsy! Here's a link to one list. There are many other lists and people, including Lil Wayne and Prince.

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

Anyhow, if it didn't hold those people back there's no reason to think that you can't do or be anything you want!

Get involved here, too, if you need to talk to people who really understand what epilepsy is all about and can give you a reality check when you need one.

Onward and upward!

 

[miranda]

Thanks for the replies! It's always good to hear from people who know where I'm coming from. I've actually been following Abercrombie's work for a while, he's the only major politician endorsed by the epilepsy foundation as far as I know.
I guess I'm just having general graduation fears, rationally I know I'll probably be okay. I think it's the general feeling of isolation that is troubling me more, I'm definitely going to try to be more involved here. I tried to find young adult support groups in my area, but there didn't seem to be any. As of today I'm no longer supposed to drink, which is gonna be pretty difficult, and it'd be nice to find someone who might be in the same boat.

 

[valeriedl]

Just because you have epilepsy doesn't mean your life has to stop! If you want to do something put your mind to it and you can do it.

I'd like to find an epilepsy support group where I live but there isn't one. It's nice to be able to talk face to face with someone about things. This web site is a very good support group, I'm glad I found it. People understand what you are going through and you can let off a lot of steam here.

As far as drinking it's really not that hard. If you go out to a bar I'm sure you aren't going to be the only person there that doesn't have a drink in their hand. I don't drink when I go out and end up having way more fun than my friends do that drink!

 

[QueenieKP]

As to support group. Maybe start one yourself. Had to the same issue looking for a local moot, there were none local to me so I started my own one spent many months sitting in a pub with a diet coke on my own but eventually more and more joined.

So your local coffee shop until you grow to a size where renting a space is appropriate.

But back to careers. Have 2 BA degrees and work in youth work so advocate with and on behalf of young people on a whole range of political issues that affect young people from subsidised travel to youth unemployment. Employers have a duty to support you in the work place and make reasonable adjustments. So if you know what you want go for it, because our disability is so often hidden, especially if well controlled it's hard to tell unless a person is an out spoken advocate for E.

I don't have awesome control yet but have some awesomely E aware young people and we had a fabulous purple day!

 

[PixiDust]

I totally feel you. I too am a college student - sophamore - and have those annoying issues that make you just want to scream because no one really understands what is going on in your life. To the public, or what I have experienced, when you say epilepsy they think of any medical show that happened to have a seizure. However, there are those who are open to getting to know you- not your disability. I would suggest going out o n a limb to make new friends. Why, I'm not religious and my best friends are all supremmly Catholic!!!!! Random room mates! When I had a bout of seizures they stayed from class to make sure I didn't leave- even though I know how to hide a seizure. Jen even blocked the door until I lay back down, and Rachel skipped class to make sure I was okay for the day. Moral of the story:it is these kind of people who will help you through this crazy time. (anyone, not just religious)
As for post-college careers: Go for it!! I am studying Archaeology and Anthropology, two of the most challenging disciplines, so when I succeed I feel like I can touch the sky. That my epilepsy doesn't matter. And my professors see that and see me as someone who is fighting against all odds, even though it is tough, and respect that- not afraid of my epilepsy.
Miranda: although it may seem hopeless at the moment, if you set an unreachable goal- you will get there. With friends that understand and support. And that is how you defeat epilepsy.

 

[Joyful]

Hi and welcome! Shoot for the moon! Reach for the sky! Leave no stone unturned! You can do whatever you put your mind to ! Don't let the label "epilepsy" hold you back. You don't even have to mention it. (I don't think so, anyway)

 

[lindsayschu2]

Hi there--good for you for having a strong sense of what you want to do! You don't need to let epilepsy define or limit you. I'm not in politics, but I work at a Fortune 500 company, managing internal communications and speeches for the CEO and senior executives--many of them know I have epilepsy, and it hasn't limited what I do or affected their perceptions. Our workplace, as just one example, has an initiative right now to hire more people with disabilities to increase our focus on diversity and inclusiveness (along with hiring more military veterans and doing a lot of social responsibility volunteer programs). Our customers include many branches of the government and large global businesses, and these kinds of focus on inclusiveness are more widespread throughout many of them. So I'm just saying, there is more and more awareness of the importance of accommodating medical issues, and even an embracing of it. I am allowed to work from home on the days I need to, or request other 'reasonable accommodations' if I need to. Just wanted to share that perspective--it sounds like you are fairly well controlled, and even if you aren't fully controlled, I'd still go forth and pursue your aspirations!