Hayley’s story

Published: March 16 2022
Last updated: September 18 2023

I was motivated to be a media volunteer as I am passionate about sharing my story

I was motivated to be a media volunteer as I am passionate about sharing my story and being a voice for people with epilepsy. Not everyone is in a position where they can speak about their condition. But there are so many misconceptions around epilepsy and experiences that range from person to person.

If I can share my story, hopefully it will help people learn about the truth about epilepsy.

I have made videos and written about my experiences with epilepsy and the surrounding issues. My story has been shared on social media and I have also spoken on the radio, giving a first-hand account of the struggles I have faced with my epilepsy and the PIP system.

Sharing my story has been incredibly cathartic for me. I have struggled with my epilepsy since my diagnosis 14 years ago, but by sharing my story and hearing so many others has helped me feel connected and less alone.

I have reached people who have felt alone in their epilepsy and allowed them to connect with someone who shares their experiences. To those with little knowledge of epilepsy, I have also highlighted the reality of daily life with the condition.

I’ve made something good from something that has been such a negative in my life. I will always be immensely grateful to Epilepsy Action for that.

By volunteering I have learnt that while everyone who has epilepsy has different experiences, we are not alone. Although our stories may be different, we are all connected by epilepsy and we have a safe place in Epilepsy Action to share these differences and similarities.

For a long time, I didn’t think people cared or wanted to help. But in finding Epilepsy Action and being able to volunteer with them, I know there are always people I can trust, people who want to do what’s best for people with epilepsy.

Being able to share your experiences with people who understand is life-changing. You can share as little or as much as you feel comfortable with. In my experience, once I started I could not wait to share more.

Helping people is an incredible gift, and so rewarding. So why not take something that could have been a difficult time in your life, and turn it something into that helps someone else along a similar journey?

Epilepsy Action are just as passionate about helping people with epilepsy as I am. It’s amazing to work with people who understand my situation so well.


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