In advance of Purple Day® 2025, Jessica shared her experiences of living with epilepsy...
I had my first ever tonic clonic seizure in September 2017. I was at home, and I was just after feeding my daughter, who was five months old at the time.
There were numerous tests done but it wasn’t until January 2018 when I was officially diagnosed with epilepsy – after having a seizure in my sleep. An EEG showed that I had generalised onset seizures and focal onset seizures. After the diagnosis, things were working quite well – the right medication was identified for me and I was back to living a normal life in what felt like a relatively quickly time.
Unfortunately, this all changed in 2021 when the seizures began to reappear. I had a lot of absent seizures, which then progressed further to full tonic-clonic seizures. We were back to the drawing board in trying to find a medication that worked, and unfortunately as many people with epilepsy will know, this was a trial-and-error approach – and a lot of the medications came with side effects which did not agree with me.
The year just gone by (2024) has probably been the worst to date in my journey with epilepsy. I’m more conscious than ever about epilepsy impacting my daughter’s life. She’s only seven and already she knows how to respond to a seizure – expertly telling everyone about Time, Safe, Stay. As a parent, it was hard not to feel a sense of guilt as I am the one who is supposed to protect my daughter, but she has been the one to protect me on so many occasions. I felt like there was no help there for her.
Every time I had a seizure; I asked, why me? What did I do so wrong? What I now know is that I hadn’t accepted epilepsy as part of me - I feared epilepsy and everything that came with it. I stopped doing things I liked – such as walking - because there was fear of what would happen if I pushed myself too far and have a seizure.
It wasn’t until I got in touch with Epilepsy Ireland that I realised help is available – not only for me, but for my daughter Matilda too. They have so much available – and for Matilda they had books, poems and stories that made it easier to explain about this part of me.
I’ve learned to understand with time, that epilepsy is part of me and that I need to learn with it – and while I have to make adjustments in my life, I do not have to let epilepsy dictate my life. My hope for 2025 is that I’ll become seizure free and that we find the right medication for my epilepsy and for the unknown known of epilepsy to be removed from Matilda’s life.
I’d like the public to learn that epilepsy can come at any stage of life – as I know all too well. For those that have been recently diagnosed or who will unfortunately be diagnosed in the future – try not to fear it – because from my personal experience, it only makes thing worse. You are not alone and there is help out there – be it through Epilepsy Ireland or through your family and friends. Take time to speak to them and get in touch with Epilepsy Ireland for further information and support.
I hope everyone has someone as incredible as my Matilda alongside them to support them in their journeys – I couldn’t be prouder of her. Thank you for reading and I hope my story was of help to someone reading.
Thank you Jessica for sharing your story and for supporting others.
If you or your loved one need any information or support about epilepsy, please do not hesitate to get in touch with your local Community Resource Officer. Visit the ‘Our Local Service’ page on our website to find details of your local Community Resource Officer.