When did it start?
I was 25 years old when I had my first seizure, and it happened at my workplace. It was December 2022. It wasn’t exactly the Christmas I’d planned. Epilepsy wasn’t something I ever imagined becoming part of my story, so those early days were confusing and full of uncertainty.
What did your early symptoms look like?
I remember the dizziness and moments of feeling disoriented. Feeling sensations I didn’t recognise at the time. Later, I learned these can be part of an aura (a type of focal aware seizure, meaning the seizure starts in one part of the brain while you remain conscious). These symptoms sometimes act as warning signs before a larger seizure, although they can also happen on their own.
As I learned more about my condition, I became better at recognising the signs and understanding what they meant for my safety and wellbeing.
How did your diagnosis affect daily life, work, relationships, confidence?
Losing the ability to drive was one of the biggest immediate changes. Being seizure‑free for over a year is required before reapplying for a licence, which is something many people don’t realise until they’re faced with it. It’s a major shift in independence.
Emotionally, I forgot how to be kind to myself. I questioned almost everything I did and overthought situations because I didn’t want to be seen as someone who couldn’t cope. I’ve been fortunate to feel supported in my workplace and family, but I know that not everyone has the same experience.
What have been the biggest challenges you and those around you have faced?
Transport remains one of the biggest practical challenges. Rural living often means fewer buses, longer waits and planning every journey far more carefully than most people need to.
Medically, epilepsy brings challenges with managing seizures and adjusting to medication. Different medications help stabilise electrical activity in the brain, but finding the right one can take time. I’ve also had to learn about things that lower my seizure threshold. These factors, which include stress, lack of sleep or illness, make seizures more likely by reducing the brain’s resistance to abnormal electrical activity.
Emotionally, anxiety has been one of the hardest aspects, especially the fear of having a seizure in public. There’s also the pressure to “put on a brave face” even on difficult days.
Many people assume all seizures look the same, but there are many types.
For example:
Everyone’s experience is different, which is why increasing awareness matters.
Why did you choose to get involved with the Shape Network, and what do you hope to achieve?
I joined the Shape Network because I think it’s important for people with epilepsy to hear from others who work in demanding environments yet still find ways to move forward and support others.
Being part of the network allows me to contribute to research and help researchers understand what life with epilepsy is really like. Epilepsy is complex and unpredictable and people living with it deserve understanding, acceptance and support.
What difference do you hope epilepsy research can make for you and others like you?
More than anything, I hope research leads to improved treatments and a better quality of life. Greater understanding of seizure types, reduced stigma, and progress in safety and independence would make a huge difference.
Research gives people with epilepsy hope. The kind that makes life feel easier and brighter for everyone affected by the condition. It’s a tough road ahead, but it teaches resilience and the determination to keep moving forward.
