When were you first diagnosed, and what were your thoughts after the diagnosis? I was diagnosed when I was 12 years old after having a tonic clonic seizure while on vacation in Tanzania, Africa. Getting the news that I had epilepsy was terrifying because I couldn’t even fully contemplate what that meant for the rest of my life going forward. I felt like a freak.
What is the hardest part about having epilepsy? The hardest part of having epilepsy has been dealing with bad side effects from medications. Some meds made me uncontrollably angry, others made me depressed, and some even gave me other problems that you don’t even want to know. The uncontrollable anger made socializing in school especially difficult because every little thing that wasn’t 100 percent positive, and it made me furious.
What is one of your greatest successes despite having epilepsy? On June 1, 2012 (exactly one week after graduating high school), I had brain surgery. Ever since I had the operation, I’ve been completely seizure free. It’s allowed me to go off to college at Colorado State University and live on my own, away from my parents, without having to worry about having a seizure with no one around to help.
How do you manage your epilepsy? Even though I have been seizure free for years, I still take meds (luckily, ones that don’t have serious side effects) and will likely stay on them for the rest of my life.
What advice do you have for people who are newly diagnosed? If you’ve just been diagnosed with epilepsy, don’t go home from the doctor feeling like you’re different or alone because you don’t know anyone personally with epilepsy. Go out and find a support group in your area. It’s amazing how much happier you will be and how much less shy you will become by surrounding yourself with others that have epilepsy, too.
What do you want others to know about epilepsy? There is a word that’s constantly used in the epilepsy community that I truly believe needs to go: suffer.
People always use the word “suffer” when telling others they have epilepsy. I can’t stand that! When you tell someone you suffer from epilepsy, you’re basically saying that epilepsy has done nothing but bad things to you and there are absolutely no positives whatsoever. I can easily say that having epilepsy has made me into a stronger, more motivated, and more compassionate individual because I had to find ways to overcome all the challenges that came with it. I have not suffered from epilepsy’s challenges. I have thrived and conquered epilepsy’s challenges.
Don’t ever sell yourself short of who you really are just because you have seizures. You only “suffer” from epilepsy if you let it win. If you go out and prove to others what you are truly capable of and don’t let your seizures hold you back, you don’t suffer from epilepsy. You thrive and conquer epilepsy.