🌱 Why This Space Exists
This space exists for anyone trying to understand what childhood arthritis looks like from the inside. For parents making impossible decisions, for adults who grew up under the old JRA label, and for anyone searching for the human story behind the medical one. I share my experiences so others can find clarity, connection, and a sense of not being alone in a journey that often feels isolating.
This blog is a place where the medical history of juvenile arthritis meets the lived history of growing up with it. It’s also where I make sense of what that experience shaped in me. It’s part storytelling, part context-building, and part quiet reclamation of a childhood that didn’t follow the usual script.
🌿 Growing Up With JRA
I grew up with Juvenile Rheumatoid Arthritis long before the medical world understood that it wasn’t simply “Rheumatoid Arthritis in kids.” The terminology has changed, the science has evolved, and the label has shifted to Juvenile Idiopathic Arthritis, but the experience of carrying a childhood disease into adulthood is something no name change can erase.
My life has been a mix of surgeries, setbacks, milestones, and unexpected victories. I’ve met doctors who saw the whole person and others who only saw the chart. I’ve learned what it means to care for a body that doesn’t always cooperate, and how to build a life that isn’t defined by the parts that hurt the loudest. And I share the life that happened in between: motherhood, loss, resilience, education, reinvention, and the long process of becoming someone who doesn’t just survive, but learns to thrive.
🌼 What I Bring to This Space
I created this space because childhood arthritis is often misunderstood, minimized, or flattened into a single narrative. I wanted a place where the clinical and the personal could sit side by side. Where the history of JIA is told accurately, but also with humanity. The clinical, the historical, and the deeply personal.
✨ Here, you’ll find…
- reflections and lived experiences from someone who grew up under the old JRA label
- context and compassion for families, adults diagnosed as children, and anyone trying to make sense of this condition
- stories that make sense of a lifelong condition without reducing life to the medical parts.
- a growing archive of insights as this space continues to evolve
This isn’t a medical site, and it isn’t a memoir, it’s something in between. A place where facts and feelings can sit side by side without competing. A place where lived experience can finally be spoken in its full complexity.
🌸 The Road So Far
If you grew up with JRA, live with JIA, love someone who does, or simply want to understand what this lifelong journey looks like from the inside, I’m glad you’re here.
“This is my road so far!”