What it’s like to be diagnosed with epilepsy at 15

When I was 15, I came home from my part-time job, poured my tips out on my bed, and picked up my phone.

The next thing I remember was being put into the back of an ambulance in my parents’ driveway.

My mother told me I had a seizure in my bedroom. I had a grand mal seizure, which is the kind you usually see in TV shows and movies. When I have a seizure I convulse on the floor, I tense up all over, and I usually bite down so hard that I slice my tongue. Afterwards it feels like every muscle in my body has run a marathon in five minutes. That night in the ER, I remember thinking I was dying, that I must have a brain tumor. But all the tests they did came back normal. A few weeks later, a neurologist diagnosed me with a seizure disorder.

I had always been a pretty healthy kid. I never broke a bone and the only surgery I ever had was getting my tonsils out. I never expected to suddenly develop a disorder. For years, I didn’t talk to anyone about it and just did my best to pretend it didn’t exist.

I am very lucky. I’m part of the vast majority of people with seizure disorders whose symptoms are well controlled with medication and I’ve only had a handful of episodes since they first started. But I still have to take pills every day. I still have to explain it to people. I still avoid talking about it as much as I can. And I still hate the look people give me when they find out; a unique mix of pity and fear.

Despite being one of the most common neurological disorders, there is a lot of stigma and misinformation about epilepsy. If you’ve ever seen a movie with an exorcism, you’ve seen a problematic portrayal of a seizure. This feeds into outdated ideas that people with epilepsy are possessed by spirits (an idea still believed in some developing countries). You also see people saying they need to put something in the person’s mouth for them to bite down on. In reality this is something you never want to do since it would be more likely for the person to bite off a piece of the object and choke. The portrayals of epilepsy in the media are almost always tonic-clonic (grand mal) seizures, even though there are many different variations of the disease.

Seizures can be frightening for the people who witness them. A friend once told me afterwards that she thought she was watching me die. Most people don’t know the basics of seizure safety, but the CDC has some information on how you should react if you witness one.

People always have a lot of questions about epilepsy, some of which are very personal. You always want to take a minute and think about what you are asking a person with a disease. Is it something they may not feel comfortable discussing. Some of the questions I’ve been asked include:

• Uh-oh, are these flashing lights / amusement rides / 3D movies we’re watching going to make you have a seizure?? While some people with seizure disorders are photosensitive to flashing lights, that is not everyone’s trigger. My seizures are not brought on by lights and when people ask if it is OK for me to do something, it can feel like they are questioning my judgement about my own health.
• Can you have kids? Also, don’t ask people that.
• Do they let you drive? Is that safe?? Most people with epilepsy have seizures that are well controlled, and the rules for driving vary state to state. Where I live, a person can legally drive as long as they are seizure free for six months.

Like I said before, I am very lucky. There are people whose seizures are not well controlled, and who are struggling to find treatments that work for them. Some therapies, such as the use of THC oil for young children with epilepsy, are hard to move forward for approval.

I have epilepsy, but that is not who I am. I’m a friend, a daughter, a fiancée, a music fan, a writer, a lover of internet cat videos. When I think about who I am, epilepsy is not the thing that springs to the front of my mind. But the only way to raise awareness about seizure disorders and decrease the stigma surrounding them is to talk about it. There are many, many people you know with epilepsy. Charles Dickens, Neil Young, Teddy Roosevelt.

And now you know one more. Me.Daryl Thomas is a digital marketer living outside Boston with her fiance Ryan. She loves her cat, loud music, baking cookies, and drinking strong cups of coffee. You can follow her on Instagram and Twitter.  [Image via iStock]