How my life changed — and didn’t — after I was diagnosed with epilepsy

A couple weeks before my 21st birthday, I was diagnosed with juvenile myoclonic epilepsy. This means I have had epilepsy since I was a child. I have had symptoms that went on misdiagnosed — and others that I hid — since I was about 12 years old. Thankfully, I have partial seizures, not full body seizures like my little brother and others in the epilepsy community.

Accepting my epilepsy was hard at first. I thought my life as I knew it was over. I thought I would never be “normal” again. When I first started taking Keppra, my anti-epileptic, I was extremely tired during the day, even though I would sleep for more than 12 hours each night. I learned that tiredness, anxiety and depression are typical side effects.

My boyfriend and I in Chicago

It’s also a bad idea to drink too much when you have epilepsy. Since alcohol slows down your brain waves, it is dangerous to go over the limit when you have a more severe type of epilepsy. When you have control of your epilepsy like I do, you often know how much is too much and how much is just right — though sometimes, I still need my family and friends to remind me.

It’s been three years since I was diagnosed. My body is now used to the medicine and I am not that tired anymore. My life is more or less normal and my anxiety is controlled. I am proud to tell people I have epilepsy because that makes me a warrior. I am especially proud this month because it is National Epilepsy Awareness Month. My little brother has helped me realize that we are, in fact, “normal,” and so has the support of my family, friends and boyfriend.

But I have had some negative experiences as well. When my ex-coworker found out that I had epilepsy she said, “Wow, you don’t even look like you have it.” What people need to realize is that you do not look a certain way when you have epilepsy. You look normal. You are normal. Like my mom says, “You do not have a disease. You have a medical condition.”

My friends of over 10 years and I in our hotel room in the Dominican Republic

When I was applying for a different job, epilepsy was listed on the form as a handicap. Some people have uncontrollable epilepsy, which is very different from what I have. Medicine cannot help them and they need constant supervision. Thankfully, I have it under control. While I do have epilepsy, I do not believe for me that it is a handicap. It does not impede me from doing anything. In those cases I do mark that I have epilepsy, because I understand some businesses need to know for liability purposes if they have an employee with a medical condition.

For the most part I have had positive experiences and most people are understanding. Those are the people I like to surround myself with. Those who do not judge or act different around me because of my epilepsy. Those who like to celebrate Epilepsy Awareness month with me. Those who I call family.

At my cousin’s house sumo wrestling my little cousin