Being diagnosed with epilepsy at 21: Stella’s story

Stella had her first epileptic seizure eight years ago when she was 21.

She explains the challenges she has faced, the stigma surrounding epilepsy, and what she would say to someone who has been newly diagnosed.


How did you feel when you were first diagnosed with epilepsy?

When I was diagnosed with epilepsy, I was in shock. At that time, I didn’t know much about epilepsy. The only thing I knew was what a seizure looked like.

I was all confused and didn’t want to admit to myself that I had to change my lifestyle since the diagnosis.


What type of seizures do you have? How does it affect you?

I have tonic-clonic seizures, which means I lose consciousness, my whole body shakes and my muscles twitch.

My seizure usually lasts between two and four minutes, but it takes me half an hour to recover, I usually fall asleep. When I recover, my whole body hurts, my head hurts the most, and I’m very tired.


What challenges have you faced since being diagnosed with epilepsy?

The biggest challenge I had to overcome was not being afraid to be alone in a room.

I lived in fear, I didn’t want to leave the house, I fell into depression and honestly, I just laid in my bed because I was afraid that if I had a seizure, I would have hit my head somewhere.


We always say that epilepsy is more than seizures. Do you feel this has been your experience?

Of course. Epilepsy is not just seizures. Along with epilepsy comes depression, withdrawal, anxiety, fear, social stigma, prejudice, discrimination, and difficulties dealing with reality.

All these factors were part of my everyday life. I like to quote Antoine de Saint-Exupery to better explain to people what this means. Man only sees well with his heart. The essential is invisible to the eyes.


Do you feel that epilepsy has stopped you from doing what you want to do?

Epilepsy slowed down a part of my life, but because I let it. I let my invisible friend/enemy control me, instead of me controlling her.

What bothers me the most is that I can’t drive because I have frequent seizures, but it’s getting better at the moment so I hope they’ll give me my driver’s license back.


Do you feel there is a stigma surrounding epilepsy?

Absolutely. Social stigma is omnipresent. I experienced stigma at work.

People are not educated enough, so they think that epilepsy is an infectious disease, that it is a mental illness, and that people suffering from epilepsy cannot lead a normal life. I can tell you one of my experiences.

One weekend I went out with friends, I always have a bottle of water with me in my bag because I need to drink a lot of water.

When we wanted to enter the club, the security guard checked my bag and told me that I was not allowed to bring a bottle of water. I explained to him that I needed water because of my condition.

When I told him I had epilepsy, he put his hand over his mouth thinking it was contagious. Devastating.


What are your main seizure triggers and how to manage them?

Honestly, I don’t have any triggers to premonition a seizure. What I have noticed most is that stress affects the amount of my seizures.

I think stress is ubiquitous in today’s world so I can’t name it as the main trigger.

I try to rest as much as possible, and do what I love and what fills me with positive emotions.

Also, I read a lot of books, and write a lot, I like to spend time in nature and meditate, which calms me down.


What would you say to others who have been recently diagnosed with epilepsy?

I would tell them not to be afraid. I know it’s a completely new and ugly experience, but everything happens for a reason.

Just push forward, make every day filled with positive emotions, and try to see the beauty in everything, in all the little things.

Every day is a new victory, every day you should be grateful for the little things. Laugh, live life to the fullest, and don’t let epilepsy control you and bring you down.


Is there anything else you would like to add?

I would like to add that people can contact me at any time, and not just me. To all associations and people who provide support to patients and their families.

Don’t be ashamed. If you feel bad, talk to someone, if someone doesn’t understand you because they don’t have epilepsy, there are a lot of people who will understand and support you. You are not alone in all this. Remember that.

Stella has created a website about the connection between epilepsy and mindfulness. Find out more by clicking here.