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Personal stories of living with epilepsy stigma

"Hope" by Ashley Shaffer
“Hope” by Ashley Shaffer

Several of you have submitted stories your personal experience with epilepsy stigma. Thank you to those of you who have submitted your stories so far. Keep them coming!

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Just a quick update on our goal of $500. To date we have raised $11. I know we can do better and there is still time!

Casie’s Story: Love can conquer epilepsy stigma

Hi, my name is Casie. My finace suffers from epilepsy. Finding out about his epilepsy was scary, as I didn’t know what it was or how it affected him or others. But, everytime people told me had a seizure I only wished I could have been there. We live miles away from each other, so I had never seen him have a seizure until recently. It’s scary to know someone you love very much has suffered in this way their whole life.

To me, just being there for the person you love and keeping them safe would mean the world to them. And even though I can’t be with my fiance in person I’m always there in this heart. I always try to make sure I’m being kept informed of when he has a seizure.

But it is scary when you witness someone you love having a seizure, especially when it’s your first time seeing one. I was in shock.  It is upsetting and no matter how much you want to help you can’t.  You just have to let them have the seizure but be there to make sure they are okay and don’t get hurt or injured.

I know that I will become stronger. And, when I live with my fiance I am going to make sure I am there every time he has a seizure. Even though I don’t know anything about epilepsy I will learn so I can help him the best I can. Thank you for listening to my story. I hope it will inspire people to know that you don’t have to feel worthless as long as your there with your loved ones.  That’s all they need.    – written and submitted on the day she witnessed her fiance have a seizure for the first time.

Michael’s Story: Epilepsy stigma as a traveling companion

The level of public ignorance resulting in stigma is truly staggering. The word alone, epilepsy, I was asked not to mention only two years ago at a gathering of retired people. I was told it might cause alarm. When I refused to stay silent on the matter, the person asking me rushed to the other side of the room, for I made her ‘feel creepy’ (her words). Too bad.

Two years ago I wasn’t allowed to board a plane home from a Mediterranean area. I was feeling dizzy from hours of sitting in an airless airport building. Of course, that was seen as epilepsy regardless of what I had to say. So, three days just waiting for someone to see sense. I wasn’t allowed on board again.

It took the Vice-Consul to arrange a flight home – and  I’m still waiting for the fare to be refunded. My presence in the airport – deliberately – became so annoying that I found myself bundled on to a plane arriving in the opposite end of the UK from where I live, arriving at midnight with nowhere open except the airport itself. My mother (83 then) was going frantic. Just phoning to try to calm her down cost me £102/$150 (approx.).

The question I kept asking, but didn’t get an answer to: why stop me going on board for fear I might have an attack when you sell alcohol at discount during the flight? Am I more dangerous than a drunk? That embarrassed them. Anything unusual, or even normal, you do seems to be somehow an aspect of epilepsy. And this is the meaning of stigma. But stigma applies only when you’re ready to accept it. I’m not – which has me branded as ill-tempered.

Sarah’s Story: Epilepsy Stigma doesn’t get her down

Living with Epilepsy has been a challenge. I’ve had Epilepsy since I was 11 yrs old . I’ve gone through many obstacles and challenges. I had the VNS in 1999, where I was still having seizures. I then had Brain Surgery in August of 2000. I was then “Seizure Free for almost 8 years. Unfortunately now I have Seizures but I don’t let the Seizures I have stop me from doing things and living my life. I was told that I’m a strong minded person whose an inspiration to others .

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  1. Dave
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    How can we help

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