For #EpilepsyWeek 2025, Grace shared her experience of living with epilepsy. It is a fantastic read which highlights the ups and downs that many people experience on their journeys with the condition and is well worth a few moments of your time…
My name is Grace, I am 26 and I was diagnosed with generalised epilepsy when I was 14. Over the past 12 years I have had tonic clonic seizures and absence seizures. Tonic clonic seizures are the type that the public think of when they hear the word seizure- going unconscious and convulsing, which can be distressing to witness and have caused injuries to me in the past. When I have absence seizures, I tend to describe it as “zoning out”. They last a few seconds and are generally not too noticeable to others unless I am speaking and my words trail off.
I am on medication to treat my epilepsy which has been a lot of trial and error to find the right ones for me, ones that control my seizures but also don't cause too many side effects. Aside from medication I find it important to avoid stress where possible and make sure to get plenty of sleep as stress and tiredness are two of my biggest triggers.
One of the most challenging things about epilepsy is not knowing when or where your next seizure will be. It can happen any place, at any time, it doesn't wait for you to be in a safe place.
Another thing is some of the things it has prevented me from doing. I used to swim competitively and did lots of other activities outside of school but eventually had to prioritise my health as doing these along with school was making me physically and mentally exhausted. I began to withdraw from my social life and fell behind in school due to tiredness and the effects of epilepsy and medication on my concentration and memory.
It was hard for me to say no to doing things with my friends as a teenager as I was trying to fit in and be “normal”. I hadn’t accepted my diagnosis or spoken about it. I was embarrassed and tried to hide it, but everyone knew as I had a seizure in school. I tried to hide how tired I was and how much I was falling behind but I have learned that trying to push myself to keep up with everyone else was unhealthy and started to trigger seizures.
Through Epilepsy Ireland, counselling and support from my family I began to understand that it's good to do things at my own pace and ask for help. Accepting my diagnosis was a huge step in getting support. I’m no longer embarrassed about it and have been a media volunteer for Epilepsy Ireland for years, speaking openly online and on other media platforms about my experience and trying to raise awareness. Epilepsy Ireland has been such a huge support for me and my family with gaining more knowledge about epilepsy through resources, events and one-to-one services. They have given me such great opportunities to share my story, and I’ve made friends for life along the way who have made me feel less alone in this journey.
This is not the first time I’ve shared my experiences of living with epilepsy via Epilepsy Ireland. In 2023, I shared my story for International Epilepsy Day, in which I said that I had reached a year seizure free in 2022 and had done my driving theory test.
A week later I had multiple seizures in the space of a few minutes. That was a really heartbreaking time as I have wanted to drive for as long as I can remember. It was the closest I had ever gotten to that dream and was suddenly taken again. Later in 2023 I had another seizure, around the time that I would have been able to take another theory test. I can't explain the things I felt at those times. I felt that driving may have been completely off the cards for me forever.
However, in August 2024 I celebrated being 1 year seizure free! I wasn’t expecting the amount of emotion that came that day. I knew I’d be happy and proud of myself but along with that I felt so anxious. I’ve been so cautious about everything I do since that day; from the things I eat to medication that I’m given for other health issues.
Even though this is the longest I’ve ever gone without any seizures, I’d rather be overly careful than take any risks. I recently completed a bachelor's degree in criminal justice and will be starting my driving lessons soon. I want to highlight that although epilepsy has its challenges and limitations, it is possible to achieve your goals, even if it takes a little longer than others. Health always comes first but epilepsy doesn’t define you.
Epilepsy is not a rare condition, it’s simply hidden. Over 45,000 people in Ireland have epilepsy so it is important that we share our experiences to help others learn more – and to let each other know we are not alone.
Remember as well – if you see someone having a seizure remember: TIME the seizure, make sure they are SAFE and STAY with them until the seizure has stopped and while they recover.
Thank you for reading and I hope my story resonates with someone out there and shows the ups and downs which are commonplace in our individual journeys with epilepsy.
Thank you, Grace, for sharing and for your kind words on the support you have received via our services. We have everything crossed for you for your driving lessons and your continued seizure freedom.
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.