Epilepsy stories: Bree, SoCalEpilepsy

Bree's epilepsy story

When I was 16 my brother saw me having an atonic seizure, at this time I had my driving license for 6 months. I got up and tried to drive, all I knew about epilepsy was flashing lights and convulsive seizures. My mom didn't believe it as it was always coming out of sleep. I didn't want to go to school anymore, so I started self learning. I became really anti-social and felt like I didn't want to be here. 

My cousin came to stay, we shared a room and he heard me gurgling in my sleep. He was freaked out and told my mum that he thinks I was having seizures. Most of mine are a few seconds but this was a few minutes. I went to see a neurologist and they believed I had migraines rather than epilepsy. It took 10 years to find out the type of epilepsy I have.

Brain surgery

For me brain surgery was the last resort. I have 6 types of seizures, to think I went untreated for so long scares me. How do we get diagnosed faster? How do you know categorically that that was a seizure? It is exhausting. How can you adapt your lifestyle to work around your epilepsy? It's tough. I've sacrificed driving and taken extra precautions such as not locking the door when I shower or compromising my independence by not living alone. But I have travelled out of the country, I have a boyfriend, while my friend Grace and I are creating a growing epilepsy podcast.‍

Experiences of workplace discrimination

I previously worked in retail. My manager didn't believe I had epilepsy. I would call in sick after a seizure, and she would think I had faked it. After 4 years, I had made good friends and they would tell me what she was saying. I told another manager that I didn't feel good on shift, I had a cluster of seizures over a few weeks. The other manager fired me, but I told her that legally she couldn't. I had told them during the hiring process that I had epilepsy. During this back and forth battle I started going to UCLA - they told me that I was having too many seizures and shouldn't be working. I handed in my medical leave, ironically the problematic manager was there. I had a seizure there and then, the manager was shocked. I hear this a lot from people who message me, especially if they have non-convulsive or ‘invisible’ seizures. I want to be out and working, but it isn't possible.

Read more: Guide to job discrimination for people with epilepsy

My Advice: In the USA we have the Americans with Disabilities Act (ADA), you're protected under that. Open up about your condition so they know how to spot it and how to help you. It might be hard and people might be uncomfortable with this. I told my managers / colleagues what it looked like and what to watch out for. I gave them an emergency number on my phone so they could call. Wear a medical ID band, if they have to call someone. Workplace's have insurance for any experiences. It's personal choice what and how much you tell them, but I think it's best practice.

Growing an epilepsy social media community

I started my social profiles while I was going through a dark spot. I saw the statistics about epilepsy and didn't believe them. Mum told me to see a psychologist, they said there's not enough research out there. I have a teaching degree, and realized there are a lot of people with epilepsy out there, so right now I would rather help others than teach. I'll get messages with questions about so many things. SUDEP, pregnancy and mental health are common. Lots of people with epilepsy suffer depression. So I’m just creating a community to support others.

Learn more: Epilepsy and depression, let’s talk about it

I was still going through the medical trials, and didn't realize I was drug resistant until I had my brain surgery. I was confused as to why I couldn't get my seizures under control. I was transferred from my neurologist to an epilepsy monitoring unit. I was there for 9 days, and was so low that I felt ready to kill myself. The epileptologist said he wanted me to go to a psychiatrist. I have temporal lobe epilepsy, so I was already emotional but I was in a dark and angry spot I'd never been in before. Started using social media for journaling, it was a venting tool for me. Epilepsy is really hard to live with - it's one of those things that force yourself out of bed. It's a whole thing. For me, going to live concerts is my passion, it gets my mind off of things. Queen is my favorite band but I like UB40 and Fall Out Boy too. Once when I was 20 I even got free tickets to see Paul McCartney!

Message to others

If recently diagnosed, be your own advocate. Because the book you’re given isn't enough, But Google might give you things that are too depressing. Find other people who experience it, because unless you have it - you won't fully understand. If you're in a dark spot there's people there for you. If you aren't happy with your doctor, find another one. If you need a second opinion, get another one. 

It's hard to diagnose epilepsy but if they are hard set on something then it won't change. I wish I had decided this earlier. You are not alone. If you don't want to talk to people - then write it down. I wish I knew depression and being in a dark spot with epilepsy is common. Don't think that because I've had it for 10 years means I'm fine with it. I have days where I'm sad and others where I'm fine. You've pulled yourself out of it once - you do it again.