Marina was diagnosed with epilepsy when she was very young. She shares how epilepsy has impacted her life and how connecting with others via social media has reassured her.
I was diagnosed with epilepsy at the age of three, at that time I had absence seizures. I didn’t realise it, but I could feel the pity, sadness, and stress from my loved ones.
I was protected as if I were something fragile. Over time, my epilepsy evolved. I went from absence seizures to generalised tonic-clonic seizures.
My biggest challenge has been my pregnancies, which were under very close supervision, with repeated seizures that drained me and left psychological consequences.
Of course, epilepsy prevents me from doing certain things, like sleepless nights, going out, festivals, or nightclub parties. It bothers me and can trigger seizures. I’m sensitive to light, but especially to fatigue.
Over the years, I developed a rare syndrome. I can sense a seizure coming hours in advance, which causes me intense anxiety and a state of stress that leads directly to a seizure.
I am aware at the start of the seizure, so I feel my entire body lock up. I see the looks on people’s faces and feel the stress around me.
More than seizures
Epilepsy is so much more than just seizures. It’s anxiety, trauma, having to plan ahead, always having our medication, not being able to be excessive, maintaining a special lifestyle, and potentially complicated pregnancies.
It’s our unique challenge, but it’s a real illness that can be disabling.
Opening my TikTok and Instagram accounts to talk about it was the best thing I’ve done! I connect with others, and it reassures me. I also learn more about my epilepsy while raising awareness. So, I’d say it’s pretty cool.
To those newly diagnosed, I’d say it’s not the end of the world. There are always worse things in life.
This is our little extra challenge, so welcome to our community. Take care of yourselves and listen to your body.
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.
