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Life with epilepsy: Alexander’s story



Professional photographer Alexander was diagnosed with epilepsy in 2020 during the Covid pandemic. Three years later, we worked with Alexander here at the Epilepsy Research Institute when he covered our Annual Reception at the Francis Crick Institute, brilliantly capturing the event. Here, Alexander shares how he came to terms with his diagnosis and the impact epilepsy has had on his life – especially his work.

I was recently packing my bag for Bordeaux – it was my second work trip to France of the year.  Passport? Check. Cards? Check. More camera equipment than I really need to bring? Check. Medication? Check. It had been almost three years since I was diagnosed with epilepsy. There’s still an alert on my phone that reminds me twice a day to take my meds. I roll my eyes every single time this pops up. I could just turn the reminder off, but part of me thinks that’s not a good idea.

I was working a different job during the pandemic, one I didn’t love, but at least I was working – I would have gone bonkers at home with nothing to do. There are only so many photos of cats you can take and sourdough bread to make! It was a normal evening at work. I remember being in the warehouse, then slowly, very slowly, noticing large black shoes and thinking what an odd angle? The coldness of the floor was the next thing I noticed and then the worst part – a headache to end all headaches. It felt like a heavy dullness from the centre of my head, bleeding out through my eyes and back again. This was my first seizure. Confusion, terror, pain, stress – all ingredients I would soon learn are a common aspect of epilepsy.

Shortly after, I had another seizure and less than a month later I was diagnosed with epilepsy and prescribed anti-seizure medication. The first few weeks felt like an out-of-body experience, as if what was happening wasn’t happening to me and I was witnessing the death of someone I used to know. I was in a state of disbelief and curiosity. What was going to happen to my life? Who am I now? These are still questions I’m figuring out.

I often see promising research studies and technological advancements appearing in the news, which makes me hopeful that in the future fewer people will be affected by epilepsy.

I travel a lot as a photographer and I can feel the stress in my stomach whenever I leave home. I always take an emergency bag with first aid supplies, but being prepared doesn’t stop the worrying. What if I have a seizure and no one helps me? I double-plan my routes, I check the nearest hospitals – all things I never expected to have to consider before.

Epilepsy has rudely interrupted my life as it does to everyone it entangles, some from a very young age, some in their mid-thirties like me. What this condition has shown me is the level of fortitude I'm able to summon. How dare this get in my way? I did spend the first year in a state of denial, and there are still days now, almost three years on, that fill me with dread and anxiety. But I won't let epilepsy stop me.

I feel incredibly fortunate that I'm still able to continue doing the work I love. Yes – there's added difficulties and my life has forever been invaded, but if I were to have retreated that would have been an insult to others and myself. With any commission or project I work on, I feel I'm working for those who cannot. Epilepsy has also flowed into my photography and I'm currently producing a long form series about the daily struggles of the condition. From the more dramatic moments to the mundane glimpses, epilepsy is part of my life now and I no longer want to be in denial about it. Epilepsy can take away so much from a person's life. In my own small way I want to be a beacon to others, showing them it cannot take everything away.

My heart breaks for the thousands of people out there, young and old who will develop this condition. I often see promising research studies such as the XENO1101 clinical trials and technological advancements appearing in the news, which makes me hopeful that in the future fewer people will be affected by epilepsy. But I know that more research and more investment is urgently needed – we cannot allow complacency.

It’s been exciting to see the transition of Epilepsy Research UK to the Epilepsy Research Institute. I was the photographer at the Crick Research Reception which saw George Freeman MP announce the charity’s plan to establish a national epilepsy research institute. It’s fantastic to see an organisation dedicated to driving strategic investment to radically advance epilepsy research – I hope that maybe a life free from epilepsy is closer than we think.