At 13 years old, I was the quintessential adolescent. Huge glasses, stubborn baby weight, and a knack for always being about two seasons behind fashion trends—everything you can imagine when you think of age 13. However, there was something different about me—I was growing up with epilepsy.
Growing up with epilepsy had its challenges, but I was lucky—I got my seizures under control, I had a great support system, and I was confident with my diagnosis.
Fourteen years later, I’ve realized a few things: glittery jeans are not actually fashionable, the world will go on if I don’t get tickets to a Britney Spears concert, and how I view myself and my epilepsy has very much to do with how my physicians approached the subject.
Here are 4 ways the physicians can make a positive impact on the physical and emotional health of adolescents with epilepsy:
1. A Little Truth Goes A Long Way.
When I was heading off to college, I expected the “don’t drink” talk.
So, I was surprised when the conversation went something like this:
Doctor: Do you drink alcohol?
Me: No, doesn’t it cause seizures?
Doctor: You’ll probably be fine if you have one or two drinks. But too much more than that can trigger seizures, so be sure to stop, even if you feel fine.
When I did begin to drink a little, I kept her words at the forefront of my mind. I felt fine after two drinks, but knew not to be fooled into having more.
I often think back to that conversation—a conversation I’m sure my neurologist barely thought twice about.
In the past, I had been given a blanket warning that alcohol would cause seizures. If I had decided to rebel, and realized that I was not having seizures after a glass or two, I may have thought that alcohol just didn’t affect me. Thinking that I was off the hook, I could have kept pushing the limits and putting myself in danger.
2. Please Talk About Birth Control.
Like many teenage girls, I decided to start taking oral contraceptives. I had heard that the pill could make my epilepsy medicine less effective, so I cleared it with my neurologist first.
Years later, I stumbled across a fact that was a bit startling: The pill doesn’t just lower the effectiveness of epilepsy medicine. Epilepsy medicine can lower the effectiveness of the pill.
I was in the clear—my specific medication did not interact with the pill. However, I was rattled by the fact that this wasn’t something people seemed to talk about.
While performing research for a project, I found that many people with epilepsy are also completely unaware of the interaction. Even more surprising—and more concerning—is that a few of my physicians didn’t know about it, either.
This isn’t something to take lightly. Unplanned pregnancies can be risky for anyone, but they can be even more so for young women with epilepsy.
I know it can be an awkward topic, especially if the patient is a young woman. But it is so important for physicians to find out if their patients are taking birth control pills, and warn them to use a second form of contraception.
3. Trust Us When We Say Something Is Wrong.
Before I was diagnosed, I kept having small, jerk-like movements. I actually described them as “mini seizures.” After looking them up online, I realized that they could be myoclonic seizures. If they were, I could have Juvenile Myoclonic Epilepsy. I fit the criteria to a T.
But no matter how often I told people, no one believed me. My pediatrician actually laughed in my face and told me that an eighth-grader couldn’t possibly diagnose herself with epilepsy.
So, when I got the diagnosis, I just said, “Yeah. I know.”
Even post-diagnosis, I’ve been in similar situations. At one point, I thought I might need to up my dose. My neurologist was hesitant, but a blood test confirmed that I was right.
Of course, there are times when patients are wrong—especially with so much information available online that can turn anyone into a hypochondriac. And of course, younger patients don’t always understand what they’re talking about it.
But please trust us. No matter how old we are, we know our own bodies. If we say something is wrong, it’s worth checking into.
4. Help Remove The Stigma Around Telling People.
Whether it’s on chat rooms, epilepsy websites’ FAQ pages, or from doctors themselves, I always hear the same message: You don’t have to tell anyone.
I understand that. Epilepsy is still misunderstood, so disclosing it at a job interview or on a first date might not be the most prudent thing to do.
However, I encourage doctors to shift the conversation away from “You don’t have to tell anyone,” to, “Find the right time to tell someone.”
The answer can still be “never.” Medical information is private, and everyone has a right to that privacy. However, there are benefits to telling others about epilepsy, from feeling like you’re no longer hiding a piece of yourself, to ensuring your health and safety if you have a seizure around others.
By framing epilepsy as just a part of life rather than as a terrible secret, you normalize it. It becomes something that we don’t have to be ashamed of, or fear. It’s something that patients can be confident about.