Why I'm Here
Welcome.
I’m so glad you found your way here.
For nearly three decades, I was a physician. As a medical oncologist and geriatrician, I had the privilege of walking alongside patients through some of the most challenging moments of their lives. I believed deeply in science, careful listening, and the extraordinary resilience of the human spirit.
I never imagined that one day I would become the patient.
Over the years, I have experienced medicine from both sides of the stethoscope. I am a cancer survivor. I live with a rare, progressive mitochondrial disease. Like so many people living with rare diseases, I spent years searching for answers before finally receiving a diagnosis. That diagnosis ended my medical career, but it also began a very different journey—one that has taught me as much about medicine, humanity, resilience, and hope as my years in practice ever did.
This Substack is where those two worlds meet.
It isn’t simply about mitochondrial disease.
It isn’t simply about cancer.
It isn’t simply about medicine.
It is about what illness teaches us.
It is about the long road to a diagnosis, the relief of finally having answers, and the challenge of rebuilding a life that no longer resembles the one we had planned.
It is about navigating disability while preserving dignity.
It is about grief, identity, purpose, and hope.
It is about discovering that sometimes the greatest gift medicine can offer isn’t a cure—it is being heard, being believed, and finally having an answer.
Above all, it’s a story about what it means to care, to be cared for, and to find meaning on both sides of medicine.
Some weeks I’ll share stories from my own journey—from physician to patient—moments that changed how I see medicine, my patients, and myself.
Other weeks I’ll write about what I wish every healthcare professional understood about living with chronic illness, rare disease, cancer survivorship, disability, and diagnostic uncertainty.
I’ll also explore research, advocacy, resilience, caregiving, ethics, and the quiet lessons that illness teaches us about being human.
I don’t pretend to have all the answers.
What I do have are stories.
Stories of loss.
Stories of hope.
Stories of medicine.
Stories of unexpected joy.
Stories of the remarkable people I’ve met—both as a physician and as a patient.
If you are living with a chronic illness, caring for someone who is, working in healthcare, or simply trying to make sense of life’s unexpected turns, I hope you’ll find something here that resonates.
You don’t need to have my diagnosis to recognize yourself in these stories.
My hope is that this becomes a place where patients feel believed, caregivers feel understood, healthcare professionals gain a different perspective, and all of us are reminded that every diagnosis belongs to a person before it belongs to a disease.
Whether you arrive here because of rare disease, cancer, medicine, caregiving, or simply because life has taken an unexpected turn, I hope you’ll discover that these stories are ultimately about something we all share: being human.
If these stories speak to you, I’d be honored if you subscribed and joined me on this journey.
Thank you for being here.
Before you go…
I’d love to get to know you.
Please introduce yourself in the comments. I’d love to know your story and what you hope to find here.
BIG HUG,
Josie