My seizures started when I was 18, although we didn’t know they were seizures until I was 21. I would zone out and feel a bit like I was underwater.
When they became more frequent, I was referred to neurology for tests. Everyone was quite shocked by the EEG results. We knew epilepsy was a possibility, but as there didn’t seem to be much evidence, it didn’t feel likely.
The consultant called at 8pm, told me I have epilepsy, would need medication for the rest of my life and not to drive. In a three-minute conversation, life completely changed.
However, I have found so much support from Young Epilepsy.
Epilepsy is so much more than seizures. It can seem minor on the surface, even though it feels anything but. The side effects from both seizures and medication have been a lot.
Living with brain fog
Brain fog is one side effect that I deal with every day. For me, it affects my memory and how I function. Some days, I struggle to do everyday tasks without support.
When you're trying to join in conversations with friends or get homework done, it gets really frustrating. Sometimes it feels like my head is just done with thinking, and I get stressed trying to keep up.
I struggle to read, write or get my thoughts out. If I’m thinking more slowly and the conversation has moved on, I can feel left out and lonely. Anxiety about joining in means I don’t always speak much in a group.
It was so frustrating when homework that should take 30 minutes took me three hours. Brain fog means I can’t always think clearly enough to understand what I’m doing.
It’s especially hard when it affects things I enjoy. I like cross stitching, but it involves counting tiny squares to get started, which doesn’t work well when my brain feels slow. That can be really upsetting.
For me, screens, noise and lights can make it worse, but sometimes can also make it better. Other times, it just comes on randomly. All of this chips away at my confidence and can feel overwhelming.
Why people don’t always see it
It’s hard to explain brain fog to other people, and it can get me quite down. It might not seem like a serious side effect, but it has a big impact on my life—including the jobs I apply for, my friendships and my mental health.
Finding ways to cope
Even on the hardest days, I’m learning that brain fog doesn’t define who you are.
Taking a break to walk the dog and getting fresh air really helps me. I also find it useful to write down small wins each day. Sometimes it’s as simple as joining a conversation or sending an email.
There are small wins every day.
You’re not alone
It can be really tough, but having people around who understand—like family, friends and the Youth Voice Network—has made a big difference.
Brain fog might slow you down, but it doesn’t take away who you are.
