Epilepsy Does Not Have Me

Dulce shares her eJourney about how she has faced stigma surrounding epilepsy

By Dulce Garcia Ceniseros , Delaware

Person with Epilepsy

Monday, October 30, 2023

My epilepsy journey began at the age of 16 after I experienced two seizures in my sleep. I remember waking up with everyone around me and not knowing what had happened. I spent two nights in the hospital getting tests done to determine the source of my seizures. I missed a lot of school days, constantly having to go to appointments and struggling to keep my grades up. 

But that wasn’t the only thing affecting me. I also had obstacles to overcome at home. I come from a Hispanic family where epilepsy is a topic that is often stigmatized and criticized. Some of my family members thought I could control my seizures, while others complained about having to take me to and from places because I could not drive. At one point, they told me they didn’t think I could go to college and be somebody because of my epilepsy.

I love my family, but the way they complained about me when they thought I wasn’t listening made me feel awful inside. I felt alone and misunderstood. I felt like a burden to them. The only thing I could do was cry and not say a word. I was scared and depressed. I felt worthless. My family didn’t know much about epilepsy, so this is why they treated me that way.

I began therapy, which turned out to be the best decision I made. Thanks to my therapist, I was able to feel happy again, live day by day, and set goals. One of those goals was not to let my epilepsy define me. I also sought to mend my relationship with my family by educating them about seizures and sharing my struggles. Watching me experience the seizures, helped them understand what I was going through and that it wasn’t something I could control. 

I was able to finish high school and complete a cosmetology program at a vocational school. Having faith in God and getting closer to my family really helped me as well. After experiencing multiple setbacks, I can honestly say that my epilepsy has made me a stronger and more positive person.

I can finally say that I am in a good place; I love the person I am now. I have learned to live with my epilepsy. It is something I will have for as long as I live. I will always take medicine for it. I will always live not knowing when the next seizure will strike. But one thing is for sure: it will never stop me from being me, living my best life possible, and sharing my story. 

Reviewed By: Sara Wyen

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