Following some recent breakthrough seizures, our volunteer Cara has reflected on her journey with the condition and the importance of having a support system around her....
Living with epilepsy can be scary and frustrating. Not knowing when a seizure may occur can be overwhelming for many people, especially when you develop the condition later in life.
My first seizure occurred when I was seventeen. Before that, I lived a normal life, just like any other teenager. I was free.
The things I worried about were whether I fitted in, what I would wear, and the ever-consuming thought of my Leaving Cert. Looking back now, those seem like such simple things to worry about. At the time, though, they felt like the biggest things in the world.
Little did I know that the carefree life I once lived was about to change.
Growing up, I was one of the lucky ones. I rarely had a reason to visit a hospital. I never really had to think about my health or worry about what might happen to me.
I have since learned to appreciate those seventeen years in a completely different way.
My journey with epilepsy has been a rollercoaster. When I was diagnosed with epilepsy in August 2019, little did I know what was to come. At first, I was reluctant to let go of the carefree life I had always known. In many ways, I was in denial. I wanted to believe that things would go back to the way they were before.
But then the seizures continued and the hospital visits became more frequent. One seizure seemed to follow another. Slowly, the reality of living with epilepsy began to sink in. This wasn't something that was simply going to disappear. My life had changed, whether I was ready to accept it or not.
Although I now live a life of structure, stability and caution, I have learned not to allow epilepsy to define me or control my life. I have had to adapt.
One of the most important things I have learned is that I don't have to do it alone.
Throughout my years of adapting to epilepsy, I have been incredibly lucky to have an amazing support network of friends and, above all, my family.
I value the people around me because they help keep me safe. Putting my safety in their hands can be frightening for them, but I understand and appreciate the trust, support and encouragement they give me. They allow me to be myself. They treat me just as they always have. Most importantly, they never make me feel different or left out.
Over time, they have also learned the importance of seizure first aid. Through the amazing work of Epilepsy Ireland, they have learned what to do when I have a seizure and, perhaps just as importantly, what not to do.
My friends and family have become so familiar with three simple words: “Time, Safe, Stay.”
They know that if I have a seizure, they need to:
- TIME the seizure.
- Keep me SAFE during the seizure.
- During the seizure and after it passes, STAY with me.
Three simple things, but for me, they mean so much more than that. They represent the people around me learning how to keep me safe, learning to understand my epilepsy, and learning how to be there for me when I need them most.
As a person living with epilepsy, I have learned that one of the most important things is having an amazing support network around you. People who make you feel safe and understood. I continue to advocate for people living with epilepsy, but now more than ever the people around me who experience the impact of the condition in their own way.
Epilepsy has meant that I have had to adjust my life, but I have come to realise that I am not the only one who has had to adjust. My family and friends have had to learn, adapt and understand this condition alongside me. In many ways, epilepsy has become something that we have learned to navigate together.
Epilepsy has become a part of my life, but it will never become all of my life. Through the support of those around me, I have learned to believe that it is only one part of who I am, not all of who I am.
Thank you Cara for sharing your experiences to help encourage others learn more. We know that it will be of great support to many people with epilepsy reading this, as well as helping encourage wider networks to learn more about the condition.
Further Information
- To learn more about Time, Safe, Stay, visit the 'Seizure First Aid' section of our website
- Remember – whether you are living with epilepsy or supporting a loved one with the condition, our services are here for you. If you need any information or support about epilepsy or want to learn more about the services we offer, get in touch with your local Community Resource Officer. You can find their details on the ‘Our Local Services’ section page of our website.