What I Learned From Growing Up With a Seizure Condition

Editor’s Note: If you’ve experienced sexual abuse or assault, the following post could be potentially triggering. You can contact the National Sexual Assault Telephone Hotline at 1-800-656-4673.

I was 13 when I had my first seizure. I remember waking up alone and thinking “I must have fainted,” but when I got to the doctors he told me he suspected I’d had some form of seizure. My mum didn’t believe him and told me not to be dramatic when I asked the doctor if I could have epilepsy, so I left it.

I was 13 when I had my first seizure at school. I’d had a few since my first and I was very aware that it felt very different than fainting, so I could differentiate the two. I knew I was having seizures, but I didn’t tell my mum for fear of being dismissed or being called a drama queen. I was at school after hours working on some assignment with my best friend, Katie, when I began having a seizure. Katie ran up and down the corridor calling for help until a teacher heard us.

Other relevant stories:
• Can Epilepsy Cause Memory Loss
• What Is Photosensitive Epilepsy
• Can I Smoke with Epilepsy 

I remember how we laughed about it afterwards, how funny it must have been to see Katie running up and down! But I also remember Katie telling me “you were having a seizure.” I laughed along with them, but that was the first time it had been witnessed and she’d described it as a seizure. It hit me hard then. I wasn’t imagining it or being dramatic – I was having seizures. It was confirmed.

I was 14 when I first admitted to my mum that I had been having seizures. I’ve always had an aura before having one, so I learned quickly when to get myself away and be by myself. I’d told all my friends that she knew and I was having appointments to diagnose it, but I was lying. I’d been having seizures for a whole year in secret before my mum even found out. She found out when I didn’t manage to get myself quite hidden enough at school, and a teacher saw and took over. From there my mum was sent to pick me up. I still remember how angry she was when she arrived, and how she refused to believe I was telling the truth. Until she witnessed one herself.

I was 15 when I sat my GCSE’s (school qualifying exams). Anxiety has a negative effect on my seizure disorder. I only ended up sitting two of my exams with my classmates. For all the others, I was sat in a tiny, windowless room by myself with a first aider, an examiner and a pillow (the school’s idea of “preparation” in case I had “one of my episodes”). All this did was give me my first real-life taste of being seen as “different” from my friends.

I was 16 when I was sexually assaulted while having a seizure. I had been having issues with an older boy, and when I was down the alleyway I walked down every morning to get to school he jumped out and grabbed me. I knew he was going to hurt me, and I knew he was too strong and too fast to get away from. I knew I was about to have a seizure and I remember letting it happen. I used to try to fight the seizures off and sometimes it worked, but I didn’t want to be conscious. I had a seizure. I woke up around 15 minutes later with the clothes removed from my bottom half; I found them thrown into a muddy puddle. I got up, went home, put new clothes on and went to school where I told my best friend what had happened. The police were called and it went from there.

I was 16 when I nearly died after having a seizure. I was visiting a guy I was seeing and we had a huge fight, so I ended it and went to the train station at 1 A.M. I was so wound up that I ended up having a seizure on the platform. I fell and the top half of me was hanging off the edge of the track. Luckily, there were two other people on the platform who dragged me out of the way in time for the train to come speeding past. I woke up in the ambulance where the paramedics told me my “close call” story. I still  wish I knew who those people were so I could thank them.

I was 17 when I met my husband. We went to the same school; he’d seen me have seizures before but it didn’t really bother him. We started dating and suddenly my seizures were his problem too, and I worried it would become too much but he really didn’t care. Since that first day to nearly 8 years later, he has had to deal with everything I have. I feel as though my problem was halved the day I met him. I had someone who understood, who was sympathetic, who was worried about me and who wanted to put me first. It changed the way I looked at my condition. Suddenly I wanted to raise awareness. I wanted people to know of the struggles other people have, of the many chronic and invisible illnesses that exist and affect so many lives. I stopped trying to keep my seizures hidden like some kind of terrible secret. I was proud of who I was, regardless of my condition.

I was 18 when I experienced my first discriminatory situation. I had began working in childcare and I was passionate about and dedicated to my career. I wanted to do every course available, learn as much as I could and be the best practitioner I could be. I put in a request to attend some training courses to my manager. After an hour of being able to see the managers discussing my request in the office, I was called in for a meeting. I was told the company wasn’t willing to “waste any money” on a training course for me, because if I had a seizure and couldn’t attend or finish then they “wouldn’t be able to get the money back.” I wasn’t allowed to train while I was employed with them until I “no longer had seizures.” I tried to explain that a seizure condition doesn’t ever just go away for good, but at that point they’d said what they needed to and dismissed me from the office. I still remember how I felt after that.

I was in my early 20’s when my boss ridiculed me for having seizures. I’d been having a lot of seizures due to stress at work, and on my way in I ended up landing on my face and fracturing my nose. After a trip to the hospital, my manager reminded me that any absence could result in disciplinary procedure, so I went into work. The superior manager asked me if I enjoyed the attention, if I did it on purpose and told me I was “stupid” to have come to work. Needless to say I walked out and took them to court (and won), but it took a lot of stress, upset and humiliation until it was finally over.

I was in my early 20’s when I considered ending my life. I decided to chase my dreams of becoming a hair and makeup artist. I trained and set up a business, and my client base grew and grew. Now I’m self-employed doing hair and beauty full time; I’m fully booked months in advance and I love my job. Unfortunately my seizures took a turn for the worse and I began having to rearrange clients last minute due to seizures. I told my mum what had been going on and she told me she was ashamed of me.

I was sent abusive messages and threats by clients and clients’ partners. I had “friends” who were no longer interested in being my “friend” because I couldn’t provide them free treatments anymore. I was told “you shouldn’t be working with the public if you have seizures,” so I started wondering if I should close it all and stop work. I wondered if my other friends also wouldn’t want to know me if I couldn’t do their nails or style their hair. It consumed me, and I became a shadow of the person I used to be.

The feeling of being a burden and a disappointment to every person in my life took over, and I struggled with depression and anxiety. I made a plan to end my life. I got on the bus, I got to the train station, and the only thing that stopped me from going through with it was the thought of leaving my husband. If it hadn’t been for him, I wouldn’t be here now.

Now I’m nearly 25. My business has grown and gone from strength to strength. Anyone who was abusive has been banned from booking with me (and surprisingly, the majority tried to rebook)! I managed to clear my life of toxic relationships. I’ve learned how to stand up for myself and I’ve learned what my rights are. I’ve learned that my husband doesn’t look after me because he has to, but because he loves me and he wants to. I’ve learned I can be honest with people about my seizures – people understand, and those who don’t aren’t worth my time. I’ve learned that the majority of my friends love me – not just the idea of free treatments.

I’ve learned to control my anger when I feel like I’ve been treated a certain way purely because of my condition. I’ve learned that not everyone will understand, and I’ve learned to be fine with that. Instead, I will always be proud of who I am and what I do because I have to do it all while battling a debilitating, embarrassing, painful and dangerous medical condition at the same time. And I’m pretty sure that makes me a superhero.

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

We want to hear your story. Become a Mighty contributor here.