Lessons in living with a rare disease: what living rare has taught me Written by Bailey Hunter

https://rarerevolutionmagazine.com/lessons-in-living-with-a-rare-disease-what-living-rare-has-taught-me/ Bailey Hunter shares her personal insights of living a rare life, teaching her resilience, solidarity, advocacy and to live life fully Living with a rare disease teaches you lessons you never asked to learn. It changes how you move through the world. It teaches patience in waiting rooms, courage in conversations you never expected to have and resilience in moments when your body does not cooperate. Over time, rare becomes less of a label and more of a lens that shapes how you see yourself, relationships and what truly matters. What I have learned is that rare not only describes a medical condition. It describes a way of living with more intention, more awareness and more strength than you knew you had. Rare teaches you to listen to your body, to advocate for what you need and to find community in places you never imagined. These lessons are shaped by setbacks, small victories and the quiet determination to keep going.