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Carley’s Story: Living with Epilepsy

10405516_10208085409562724_969990959657705058_n (1)This personal story submitted by Carley who has lived with epilepsy since she was 13 years old. I hope you enjoy getting to know Carley’s story and benefit from her experience as much as I have. 

Carley’s Story

I am Carley Jones and was just told about this site through someone at the Cleveland Clinic in Cleveland Ohio. I have had epilepsy since I was 13 and am now 21 years old. I think the hardest part of epilepsy is the driving.

On Driving

I am currently in college and in a very remote area so it is very hard to get to and from places. I have to have someone take me to class everyday and they don’t ask for money. When they do how much should I give them, I don’t know.

On Stigma

Epilepsy is also embarrassing at times. People always wonder why I am by myself. What I really want the most is to meet others with epilepsy. There is so much more but this is just a start.

Let Carley know she’s not alone by leaving a comment below.

Or, submit your personal story to Living Well With Epilepsy today.

3 Responses

  1. Leila Zorzie
    | Reply

    Thank you for sharing your story! I now have my license but I had to wait a few years before my doctor cleared me to do so. Wanting to be independent but not being able to is hard! I’m happy to hear that you have support around you to help. There are plenty of us in the Epilepsy community who support you, too! 🙂

  2. Carole
    | Reply

    My daughter could have written this.
    Being able to get out independently is currently her biggest issue as well.
    You are not alone.
    Wishing you better days.

  3. Suzie
    | Reply

    Carley, I remember those days, too. I was enrolled in a small college when I first started so I know what you are talking about. But then I transferred to a college that had on campus housing and free business fare with a college ID so it was much easier to get around when I moved off campus. I don’t know if that might be an option for you, but worth checking out.
    I still didn’t know anyone who had epilepsy, so in that way I felt isolated,too. But nowadays, a lot of colleges have support groups on campus for a variety of issues. Maybe you could go to your college health center if they have one and maybe they could help you start one. I wish you well.

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