My name is David Carlile, and I am an adult living with CHARGE syndrome. Growing up, much of my experience involved learning how to navigate a world that didn’t always fully understand or accommodate the complexity of CHARGE. Some aspects of my condition are visible, while others are not, and that combination has shaped how I experience relationships, communication, work, and identity. Over time, I’ve had to develop a deep level of self-awareness and adaptability in order to move through environments that often assume a different baseline.
Professionally, I am a therapist, and my work focuses on helping others better understand themselves, regulate their emotions, and navigate challenges in their lives. My lived experience with CHARGE has given me a unique perspective in this field, especially when working with individuals who feel misunderstood or who live with invisible or complex conditions. I’ve learned that meaningful connection often comes from slowing down, listening carefully, and recognizing that every person is carrying something that may not be immediately visible.
Recently, I published a memoir titled “Taking Charge: A Memoir of Disability, Identity, and Self-Leadership.” Writing this book was a way for me to put language to the internal experience of living with CHARGE — not just the medical aspects, but the emotional, social, and psychological layers as well. My hope is that it offers insight for both individuals with CHARGE and those who support them, and that it contributes to a broader understanding of what it means to live with this condition over time.
