Supporting My Sister Through Epilepsy and Stigma

My older sister, Lydia, has had epilepsy since she was seven years old. At first, we didn’t understand what was happening. Her primary school teacher would send home reports about her staring blankly in class for long periods and, later, about incidents where she would urinate on herself.

Our mother tried to figure out what was wrong, but, living in Africa, we were initially told it was witchcraft. As a result, we turned to traditional healers who claimed they could treat her. Lydia underwent countless rituals, including tattoos from traditional healers, bizarre concoctions, herbal baths, and many other unthinkable practices. Pastors prayed over her as if casting out demons, adhering to every stereotype one could imagine.

Eventually, we sought medical help, and Lydia was diagnosed with epilepsy. The medication she was prescribed helped, and over time, she earned a degree in education. She now teaches English and History in Zambia. Her journey, marked by resilience and determination, inspires me every day. I admire how she endured all the traditional treatments and their resulting injuries. Her strength and unwavering self-image are remarkable. This disease may have hurt her, but it has not broken her. Lydia shines brightly wherever she goes.

For me, the hardest part is witnessing my sister experience seizures. Sometimes, she isn't even aware they are happening. She has jerking movements and often urinates on herself. What breaks my heart the most is that she remains unmarried, even though she deeply desires to be. As her younger sister, I have three children, and it pains me to see that she doesn’t have any of her own. She would make an incredible mother, and it saddens me that she has so much love to give but doesn’t have a family to share it with. I love my sister with all my heart. We’ve faced many challenges together, and it’s always my priority to protect her and keep her safe.

To everyone living with epilepsy, know this: you are loved, you matter, and you are never alone. If you are caring for someone with epilepsy, don’t give up, no matter how tough it gets. You’re doing an amazing job. Remember to take a deep breath when you feel overwhelmed—your presence means the world to your sibling, family member, or friend.