This year, James is running the Edinburgh Half Marathon for Epilepsy Scotland to support people living with epilepsy in Scotland. He shares his own experiences of being diagnosed with epilepsy just under three years ago and the impact it has had on his life.

I was first diagnosed in December 2022. It was at my place of work, and I collapsed on the floor. I didn’t want to believe it. It’s not exactly what I wanted for Christmas. I thought it was an isolated incident, and I could carry on. But they kept happening, and life introduced me to another challenge that I had to face and find a way to move forward.

I was confused and angry and wanted to wake up from this nightmare, but I knew it was never going to go away. I tried to keep moving forward because when you fall from something like a seizure, you have to do your best to get back up. 

I have had tonic seizures. My first one lasted between 10-20mins and now they get shorter every time they occur. I don’t remember the seizures happening and when I woke up, I was covered with bruises, and I was confused with what’s happened to me. Before the seizure would happen, I could feel my head becoming disoriented. My hands became numb. But with my recent seizure, I could feel an aura that made me feel like I was struggling to breathe.

Impact of epilepsy diagnosis

At some point, I forgot to be kind to myself. I got angry at the entire world. I blamed myself and I felt like a burden to people trying to support me. I have suffered from social anxiety because of epilepsy and being on social occasions makes me feel everyone judges me.

Accepting my diagnosis and learning how to live with it is not easy. l lost my driving license, and I must wait for a year since my last seizure. Every time the seizures happen, it feels like when you’re so close to the finish line until you realise that you have moved the finish line back. I miss the independence I once had and the chance to explore more of Scotland. Living in a rural area like Aberdeenshire makes it harder to get around to work or meet up with your friends and family.

I felt like I needed to stop working because I thought that no one would hire someone with a condition like mine.

There are days I worry I might not be able to begin a relationship because I think no one would want to be with someone who falls on the ground due to a seizure. But I realise that first I need to look after myself before I can look after someone else.

More than seizures

Epilepsy goes beyond seizures. People need to know that this chronic illness has more challenges than the seizures. It’s also about the depression and the effect on mental health that comes with living with epilepsy.

Even though it is rare, Sudden Unexpected Death in Epilepsy (SUDEP) does happen. Everyone has a story to tell and in those rare instances, epilepsy can make a person’s story unwritten by taking their life. It makes one feel afraid that they will never write the story and raise their voice.

The triggers that cause the seizures are not always clear, but they are different for those who live with epilepsy. It can affect people in many ways that are not always certain.

I am learning every day to live with epilepsy and see that affects not just me, but so many people in Scotland, the UK, and the world. Learning more about these triggers has helped me to understand how to take better care of myself. The biggest take from the seizures is when they happen in public, it feels like a lesson in humility. I’ve had challenges before, but epilepsy has a way of making you feel lost and alone.

Accepting help

I understand that I am a stubborn person. Accepting help doesn’t come naturally to me because I want to feel like I can do it. But I understand that I need to let people in to help with my recovery. I am someone who needs a goal in life. I’m not good at doing nothing. However, I have learned that I need to slow down sometimes and accept help when needed and available to me.

Do you feel like you’re alone? Have you felt like everything is changing around you? Are you unsure how you can move forward with your life? Do you feel like you won’t achieve what you want to do in life because of epilepsy?

If you answer yes to all these questions, then please know you are not alone. Ensure that you remember to let people into your life who are going to help you.

Get support

Expand your support group with people you can learn from and on whom you can lean. Use the helpline as they will have people to help you come to terms with your new challenge.

Becoming your hero is a hard path to follow, but it’s better than being someone or something’s victim.

Lastly, keep your dreams and ambitions alive. Dreaming is how the strong survive. Remember all the sadness and frustrations that you have felt since your diagnosis and let it go.

Over 80,000 people live with epilepsy in Scotland. Many are struggling to make ends meet because they are unable to work and support themselves. When benefits and opportunities are limited, people feel like there is no other way to move forward.

But there will always be hope if you accept the support that is available to you or your loved one who is living with epilepsy. We must always inspire hope. 

Edinburgh Half Marathon

I am taking part in the 2025 Edinburgh Half Marathon to work with Epilepsy Scotland in fundraising support for those who are struggling with living with epilepsy. Six seizures later and I keep finding ways of getting myself back up.

I have continued my fight for progressive fairness and equality for people living with epilepsy in Scotland and I will continue with my advocacy. Remembering the lessons that I have learned while living with epilepsy, so that I can raise voices for the people who are struggling to come to terms with their challenges. I’m going to do everything in my power to make 2025 a master time! (This is a term I made to give people the courage to keep moving forward despite the challenges they will face.   

If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at dcoates@epilepsyscotland.org.uk or call 0141 427 4911.