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Hailey’s Fight Like a Girl Story (Juvenile Myoclonic Epilepsy)

Juvenile Myoclonic Epilepsy StoriesMy name is Hailey, and I am 16 years old. I am new to this world; I was diagnosed with Juvenile Myoclonic Epilepsy only months ago. I had a grand-mal seizure for the first time a couple months before being diagnosed. Turns out I’ve been having seizures for years, but I didn’t know it. My myoclonic seizures mainly happen in the morning and they can last for a half an hour sometimes. I thought that everyone had them… But I guess not.

I was started up on medication and I am almost completely seizure free, which I am SO thankful for. But there’s something that bothers me about epilepsy more than having seizures: the stereotypes. I feel like I have to hide it because everyone thinks that people like me, like us, are freaks. They assume that I can’t do anything and that I can’t be in the same room as a strobe light. Kids my age don’t see past my ‘disability’. I wish that everyone would know what it’s like to have epilepsy, so then I could stop hiding. I want to see the entire world wearing purple.

Hailey
Oregon
Submitted 1-30-12

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

9 comments

  1. I was also diagnosed with Juvenile Myoclonic Epilepsy when I was 12; I’m now 25. I’ve been told I’m wierd most of my life and you know what, I AM! I decided a long time ago to embrace being different; I always tell people that being weird is more fun than being normal. Also, I’m still not completely seizure free and, with all the things that can trigger a seizure, I don’t think I’ll ever be seizure free but I don’t give up. Stay strong!

  2. At 16, kids can be so awful!! It gets better when you get older. For one thing more of them will know peolpe who have a variety of conditions and they become more empathetic. One thing I have done in my battle with breast cancer is to be very open about it and answer people’s questions. I also joke about it. Find a couple of good lines you can use. If the strobe light is at a dance, laugh when they say you can’t be there and tell them you can do the jitterbug. I don’t know just what, but you get the idea. When I had my mastectomy I joked that I had gone from a double-D to a minus 2. Humor has helped me so much, and made me approachable.
    I would not be a teenager again for anything! So hang in there!!!! It really does get better as you get older, although there are always stupid people around. But you will find they really don’t matter and don’t have the power to take you away from you!!! Best Wishes!

  3. Hailey,

    My son was diagnosed with the same type seizures he had seizures when he was an infant but they said he out grew them. when he was 14 he started having seizures again and was seizure free until about 2 months ago he started having seizures again. they got it under control with medication. Dont let anyone put you down or make you have no confidence. You have a full life to live. Always remember the sky is the limit and there are no Boundaries.. Good luck in the future and all that you achieve!!!

  4. Hey, girl. I lost my dad when I was 9. People made fun of me because of that! Kids your age will not understand. The problem is that until someone experiences something for themselves, or are not educated about it, that’s how they’ll react. DON’T change anything about yourself to please anyone. I feel that “Normal” is non-existent. Every one of us has some type of affliction. Depression, anxiety, cancer, abuse, self-esteem issues…everyone is dealing with something. My brother, a very intelligent man, died of a rare cancer at 39. He would have been 50 this year. He understood life…he never questioned “Why me?”, but instead, went to different schools and spoke to kids your age about it. He told them that no matter what, life would present battles. He made an impact on everyone he met. We got phone calls from people thanking us…parents of a 16-year-old kid that thought he was God’s gift. He had treated his family and friends like dirt because everyone pumped his head with hot air due to his athletic skills. He went home that day, grabbed his mom and dad, started to cry and apologized to them, he learned about humility. Use your knowledge…have someone come and speak to your classmates…if you can, YOU speak too. Don’t worry darlin’, you FIGHT LIKE A GIRL and TEACH those that judge! Much love and Luck to you!

  5. I want you to know that your my new hero. I don’t want you to think about what others think, your special no matter, what people think. I also no that having a disability doesn’t change who or what you are it can only make you stronger. For I to have a disability and I do my best everyday to live my life to the fullest. We are all different and that’s what makes the world interesting, it would be boring, wouldn’t.

  6. Brandi Crossland

    Hey girl, I am 25 and have a hard time with steriotypes at times with my MS. Best part I have found in people thinking I cant do something is to safely show them that I can. While Fighting Like A Girl prove the goofy people wrong and make them laugh at something. When I can’t walk properly or have a siezure I either teach about it or change the situation to be funny. I fought asthma when I was younger therefore I couldnt run with the others. I was still in cheerleading, powderfuff football, and in multiple educational groups. Make you smile and it will spread to those around you :))

    • I love what you shared with the young lady. That made my day. I am 25 too and have a lot of struggles daily. But you made me feel better. I just want to say THANK YOU!

  7. Hey… It’s nothing wrong with being different. I am nothing but a weird-o to everyone looking from the outside in. I have my own issues as well. I have Vaso-vagal syncope episodes. Vaso-vagal syncope are episodes where the blood pressure spikes really high then drop quickly. Once the pressure drops quickly I fall to the ground. I didnt know what was going on for a while because they thought my thyroidism was causing the problem. I just cannot go outside often in weather over 70 degrees or my body cant handle it.
    I understand what you are going through a lot. I always thoughts everyone had the same things going on. But once I was diagnosed I thought I was the only person in the world in my mind. When I have an episode in front of people it is scary and immediately 911 is called. But my problem is besides the point.
    We live in a world where we judge first and ask later. But it’s ok. I cry a lot because I don’t always understand why. You have more courage than I will ever have because you stood up and shared.
    I hope the anti-seizure medicine continues to work. Stay strong. Enjoy life. Dont let the world’s ignorance stop you from having fun, over coming, and dreaming BIG!
    Thanks for your story.

  8. Sweety Im 36 years ago. Even though it was years ago it was the same.Even adults are going to watch you more then whats concider normal. I got watched alot and talked about alot. I believe they do that because they are scared. Sometimes I use to say that and make them realize that. Show them you are strong about it. Alot of them wouldnt be able to handle it. Now you will learn who your true friends are. I thank God every night for the 2 I have. They have been there from the beginnging. I hope you will have some to. Just hang in there.

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