Patient Perspective on Brain Health Series

Even the Longest of Days Will Eventually Come to an End

by Elisa Dibra

I had my first seizure when I was 28. The diagnosis came soon after.

For a long time, I refused to believe it. I went from one neurologist to another, not really looking for a treatment plan but for someone who would tell me it was a mistake. I had my own explanation ready: years of stress, too much work, too little sleep. It made sense to me. It was easier to accept than the alternative.

But it was epilepsy.

What followed was harder than the diagnosis itself, and mostly because I went through it alone. I had to find my way around a healthcare system that was not built to guide me. There was very little information available, no support group to turn to, and no one offering help with the psychological side of it, which for me was the heaviest part. I had to build a new way of living almost from scratch, mainly through trial and error: paying attention to my sleep, my routines, my limits, learning what my body could handle and what it could not. I read everything I could find, because reading was the only support that was reliably there.

The days after a seizure were the worst. I would feel ashamed, and guilty, as if I had done something wrong. All I wanted was to close the door and cry on my own. More than anything, I felt like a burden to my husband, my family, my friends and my colleagues, even though not one of them ever treated me that way.

I remember being genuinely frightened when I started a new job. Not of the work, but of having a seizure in front of people who did not know me. I was afraid of being seen differently, of being treated as fragile, or of losing the job altogether.

It took me about three years to arrive where I am today. Therapy helped. Time helped. And I was lucky, in a way that I do not take for granted. My husband, my family, my friends and my colleagues did not just stand beside me. They pushed me to keep going and to live my life as fully as I could. I have never felt stigma from the people around me, and I have always been able to say out loud what I was worried about. I know that many people with epilepsy cannot say the same, and I think about that often.

I am also fortunate that my seizures are not frequent. And I have come to believe that forgetting is a blessing. Once some time has passed, life simply continues, the same as it does for anyone else. There are stretches when I honestly forget I have this condition at all, until the next seizure arrives and I begin again from the start.

Today I go to the gym. I travel. I go out with my friends. There are things I choose to avoid, like concerts with flashing lights, and the cinema, but they are a small price. I am genuinely happy with my life.

Epilepsy has taken things from me, but it has also given me something I did not expect. It made me see very clearly what actually matters. I have learned to let go of the things I cannot control and to stop spending my energy on every small thing that does not go the way I planned. That is not a lesson I would have learned so quickly otherwise.

Somewhere along the way I read a sentence that has stayed with me ever since: even the longest of days will eventually come to an end. I repeat it to myself when I need it, and it has become the reason I keep going.

That is also what I want to say to anyone living with epilepsy, or with any other neurological condition, who is at the beginning of this road. Right now it may feel like the worst thing that could have happened, and it may genuinely be very hard. But days pass. The hardest ones pass too. Take on every challenge that comes, however difficult it looks, and you will come out of it stronger than you were.