More Than a Diagnosis: Finding Identity Beyond Spina Bifida

Identity is like a complex puzzle, made up of countless pieces that reflect who we are. Each piece—whether it’s our role as a student, a friend, or an athlete—fits together to create a unique picture of our life. However, living with a disability like Spina Bifida can sometimes make it feel as though one piece overshadows the rest. People may see that label first, often overlooking everything else. But a diagnosis, while part of my story, is never the whole story. I am more than a list of symptoms or medical statistics. Like many others living with disabilities, I wear many hats: daughter, sister, student, athlete. While these roles may shift and change, one part of my identity remains unshakable: I am a daughter in Christ. This is the one identity that can never be taken away, and it grounds me beyond any diagnosis.

April 26th will forever hold a special place in my family's heart. It was the day my parents learned of my Spina Bifida diagnosis. They sat, listening to the doctor explain what this might mean for my future, leaning on their faith in the face of the unknown. They found comfort in trusting that God's plan was perfect, and that I would be uniquely me. When I was born, they realized something beautiful—my name, chosen years before I came into the world, was a reminder of God's grace. My first and middle names mean "grace upon grace," or "blessing upon blessing," which is exactly what they say I became. I don’t fit all the stereotypes associated with Spina Bifida, and my parents never focused on what the typical outcomes were. They only saw their daughter, not a diagnosis.

As we recognize Spina Bifida Awareness Day, it’s essential to remember that those of us living with this condition are more than just a diagnosis. Yes, it profoundly impacts our lives, but it doesn’t define us. Behind every statistic and medical term is a person full of dreams, hopes, and a sense of purpose. What truly matters is not what can change in an instant—our roles, abilities, or even our health—but the parts of our identity that stand firm. For me, that unshakable foundation is my identity as a daughter in Christ. This gives me strength to face every challenge. So, as we raise awareness for Spina Bifida, I encourage you to see beyond the diagnosis and recognize the whole person behind it.