By Gabriella Tantillo
March 26 is World Epilepsy Awareness Day, and in this blog post, 23-year-old guest blogger Gabriella Tantillo shares her story of being diagnosed and living with epilepsy. The fourth most common neurological disorder, epilepsy is characterized by unpredictable seizures and affects people of all ages.
I was diagnosed with epilepsy seven years ago. At first, I started getting migraines with some visual changes. In the beginning, my doctors didn’t know what was going on. I was frustrated after going for multiple tests, but I stayed strong with God by my side and the support of my family and friends. I remember saying to my mom one day, “maybe I’m having seizures.” So I went for an electroencephalogram (EEG), and it showed that I was having seizure activity.
I saw different doctors, had various tests, and went to several hospitals to learn more about my epilepsy. An EEG and additional testing confirmed that I have occipital lobe epilepsy. I wasn’t bothered by this diagnosis at first because that only put a name to the symptoms I was having.
But after a while, the treatments and medications made life more difficult for me. I felt different from everyone else and felt like I couldn’t do anything. My illness was controlling my life. I was constantly changing my medications and trying different things. My medications made me extremely tired, shaky, confused, and affected my memory.
My memory has gotten worse over the years. There have been times when I have forgotten what I was doing or what I did two seconds ago. It also can be very difficult when I’m talking with someone and telling a story. It can take me a long time to remember all my thoughts, and sometimes I will forget what I’m about to say.
I can also forget how to do simple things. Once I forgot how to do laundry, and my mom had to help me. One day I was eating out with a friend and forgot which hand I held my knife in when I cut my food. I didn’t use the knife for the rest of the dinner. That was a difficult moment for me because I’m so young and forgetting was embarrassing for me. I have moments when I feel nervous when talking to people because I have trouble putting together what I want to say.
When I have a seizure, I am aware of everything around me and I’m able to speak and communicate; however, I prefer not to talk because I just want to get through it. During a seizure, my vision is blurred and changes, and my eyes sometimes roll around. This makes me a little bit confused, and it is hard to put my thoughts together.
Having epilepsy is difficult because no one would know that I have it just by looking at me. Some people think that when a seizure is over, you go back to normal and you’re fine. When I have a seizure, I become a little confused during and afterward and also become extremely tired. I have a lot of head and eye pain with my seizures, but that pain can happen at any time. I have good days and bad days. On a good day, I’m not having much eye or head pain, and I’m energized to do things. On a bad day, I’m really tired, feel weak, have increased eye movement, have eye and head pain, and it’s difficult for me to focus.
If I can tell people anything about epilepsy, it would be that it is a battle every day —physically and emotionally. I deal with anxiety because of my epilepsy, and I’ve had to learn different coping skills to help myself with that. Because I don’t know when I will have a seizure, I am always thinking of what I will do in different situations if I were to have one.
Another thing I deal with is feeling lonely at times. It’s hard to find people who understand what I’m going through. Thankfully, I eventually found support through the Epilepsy Foundation when I joined the Delaware support group. We have become a close group of friends and are there for each other all the time.
For those living with epilepsy and other chronic illnesses, I can say that it does get better. If you stop and reflect on the accomplishments you have made, you can see just how strong you are. At times epilepsy can seem like it’s controlling my life, but with God, family, friends, and a great support group I am in control!
Gabriella Tantillo is an artist, musician, and epilepsy advocate. She blogs at https://chronbeautgt.wixsite.com/chronicallybeautiful to help others find creative ways to live with chronic illness. She lives in Delaware with her family.
Thank you Gabriella for sharing your story with our readers.
If you have a story to share with our readers about participating in a clinical trial, overcoming adversity, or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others learn about your struggles and increases awareness and understanding. We will help promote your website and social media accounts as well as your favorite advocacy group. Contact us to get started sharing your story now!