In this story shared with us for #EpilepsyDay 2023, Grace Darcy from Dublin outlines her journey with epilepsy so far....
I was diagnosed with epilepsy when I was 14, I am now 23 so this year will mark my tenth year living with epilepsy. I have generalised epilepsy which means it affects my whole brain.
I had my first seizure in November of 2013 while I was doing homework in my room. My sister walked past my room and saw that I was convulsing at my desk, so she called my Mam to ring an ambulance.
I don’t remember anything until I woke up in temple street and even then, that was hazy. They ran tests such as EEGs and MRIs, but I wasn't given a diagnosis until my second seizure a few weeks later which happened in school. I hadn’t even heard about epilepsy before this, never mind knowing what it was but after a lot of research and help from doctors, I started to understand it.
The type of seizures I have are absence seizures and tonic-clonic 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, but for me, they can last all day and sometimes even two days. I am conscious and aware of my surroundings, but it is most noticeable to others when I am speaking as my words trail off.
I am on medication to treat my epilepsy. However, I have still had seizures whilst on medication, usually due to lack of sleep or stress which can be triggers for most people with epilepsy!
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.
I have had seizures on an escalator, in a swimming pool, on a bus and on hard floors to name a few. The unknown can bring a lot of anxiety. I have struggled with my mental health since my diagnosis, especially due to my age. Being “different” in school, feeling restricted from doing things my friends were doing like starting to go to parties and driving, and generally feeling alone in it even though I had so much support from my family and friends - I always felt like an outsider and I was embarrassed about that.
I began to fall behind in school as both the epilepsy itself and the medication affected my concentration and memory. I didn’t have the energy to do the things I loved anymore, and I had to give up swimming after I had a seizure in the swimming pool. My parents are always worried about me (as parents always are) but that made me feel like a burden and that it was my fault, but of course their intentions are always to keep me safe.
Even with all of this, after a lot of help through counselling and Epilepsy Ireland I learned to take my life back. I found things that I love doing that don’t cause any risk of seizures. I became more comfortable going out and doing things that a normal teenager should do, while also making sure to be safe and put my health first. I take my medication with me everywhere I go, make sure I get enough rest and am not afraid to say no to doing things when I feel that it could cause a trigger.
One of the most important things I have learned through my almost 10 years with epilepsy is what to do when someone has a seizure. Not only so that I know what to do but also to inform others who may not know. It has also taught me to appreciate the things that I can do when I am well, and I have met some amazing people along the way!
I am a media volunteer for Epilepsy Ireland for a few years now and the biggest thing that has been put out to the public is what to do when someone has a seizure through the Time, Safe, Stay campaign - TIME the seizure, make sure the person is SAFE and STAY with the person until the seizure has stopped and while they recover.
There is a stereotype around epilepsy that all seizures are tonic-clonic seizures, that everyone with epilepsy is photosensitive, and the myths around what to do when someone is having a seizure. There are so many different types of seizures and each person's experience is different. Not every person with epilepsy is photosensitive, in fact only about 3% of people with epilepsy are. There are myths that you should put a spoon in the person's mouth and to hold them while they're having a seizure, but this is dangerous.
I feel that these are some of the main things that the public needs to be more aware of. Epilepsy is not a rare condition; it is simply hidden, and I think that is part of the reason that the public are not aware of these things.
My seizures have become a lot less frequent in the past few years, but they still happen. I was seizure free for a year in August 2022, so I did my driving theory test and was waiting to start my lessons after waiting since I was 16 for that day arrived and then suddenly, I had three seizures in the space of a few minutes.
I was heartbroken. I felt like I was back at square one again after such a long time of being seizure free. I don’t think I have really come to terms with that yet. As much as epilepsy has affected my life and restricted me in some ways, I am in college away from home and doing well, I have plans to travel, and I have hope that I will be able to start my driving lessons this year, that is my biggest goal now.
Epilepsy Ireland has been such a massive support for my family and I for which I couldn’t be more grateful. Through every hard time they always have the right resources and events that can be helpful to everyone, not just people with epilepsy!
Living with epilepsy has its challenges but with that comes appreciation for good days and meeting new people with similar stories. Every experience, good or bad, is a chance to learn and inspire others. I decided to share my story in hopes that it helps others on a similar journey and to appeal to people to learn about seizure first aid. Remember- Time Safe Stay!
Thank you Grace for sharing your story and helping to create awareness of epilepsy and increasing understanding. For everyone reading, you can learn more about epilepsy by visiting the 'Epilepsy Information' section of our website - and please ensure you make Time, Safe, Stay part of your general knowledge as part of #EpilepsyDay 2023! Visit the 'International Epilepsy Day 2023' section of our website to do just that!