For National Epilepsy Week 2026, Lauren has reflected on her journey with epilepsy – discussing many of the unseen challenges which the condition can bring, and with a particular message to those supporting a loved one living with epilepsy…
I was diagnosed with epilepsy when I was 14 years old and I’m now 31. I am very lucky to be able to say that I am now 3 years seizure free. This is the longest time since my diagnosis that I have been able to say this.
Looking back over the past 17 years, I have been through a lot - including two brain surgeries – and I have also struggled with my mental health through anxiety and panic attacks. It is only now in hindsight that I realise having seizures daily was a big part of that.
For this year’s National Epilepsy Week, I want to talk about the side effects of epilepsy that I still experience and the realities of epilepsy that most people don't see. Even though I am very grateful to say that I am three years seizure free, it doesn’t mean I don’t have bad days.
I get days where my anxiety levels are very high. There are days where I may have mistakenly missed a medication due to the impact epilepsy can have on my memory and my anxiety is very high as a result, thinking I may potentially have a breakthrough seizure. Alongside this, tiredness and stress are also a worry – as they can be seizure triggers for me. I have had some auras over the past few years, but luckily, they haven’t progressed into seizures.
Even if seizure free, the worry about potentially having a seizure is always there and sometimes can be the most prominent feeling during bad days which can be a very lonely experience. I have personally experienced instances over the years where people close to me have not understood this aspect of epilepsy.
I would love for anyone who has a loved one living with epilepsy who is reading to keep in mind that it is very hard when you have a bad day as a person with epilepsy.
Epilepsy isn't just about seizures, and a person may be seizure free, but it doesn't make life go back to the way it was before you started to have seizures. The different side effects of medications and other implications of the condition can sometimes be just as challenging as seizures, and this is a very important thing to bear in mind when it comes to invisible condition like epilepsy.
My point to everyone reading is that just because you can't see it, doesn't mean it's not there.
Thank you for reading and I would encourage everyone to please learn more about epilepsy this Epilepsy Week.
Thank you Lauren for sharing your experience which we know will resonate with many others living with epilepsy.
If you or a loved one need support on your journey with epilepsy, please do not hesitate to contact your local Community Resource Officer. You can find their details by visiting the ‘Our Local Services’ section of our website.