You’d never know by looking at me that a part of my skull is slowly changing shape. That inside, bone is quietly remodeling itself not healing, but reshaping in ways that sometimes press, ache, and blur the world a little more than I’d like to admit. This is the invisible challenge of Fibrous Dysplasia, a rare genetic bone disease that doesn’t announce itself with bandages or scars, but with fatigue, pressure, and the kind of pain that hums just below the surface of everything.
Recently, my Fibrous Dysplasia has been particularly active. My official term is bone remodelling, but that phrase is really: your own body rewriting its blueprint. In my case, there’s many areas within my skull and the one being most annoying is a 37mm by 18mm lesion in the calvarium bones of the clivus – deep within the skull base, near the nerves and structures that help me see, hear, and move through the world. It’s not life-threatening, but it’s life-altering.
The thing about invisible conditions is that they don’t show up in photographs, meeting minutes, or social media posts. To the outside world, I’m the same: still smiling, still working, still showing up. But inside, there are days where the pressure in my head feels like a storm front. Days where the pain dulls my hearing or sharpens my sensitivity to light. And days where I find myself whispering small pep talks just to keep going.
Yet, this is not a story about illness it’s a story about endurance. Living with something invisible teaches you empathy in a way that textbooks never can. It forces you to look beyond what’s seen and listen deeply to what’s felt. I’ve learned that so many people walk around with silent battles: autoimmune diseases, grief, anxiety, chronic pain, or memories they can’t speak aloud. They, too, are mastering the art of appearing “fine.”
There’s a particular courage in invisibility the courage to keep contributing, to keep caring, to keep leading when no one sees the weight you’re carrying. For me, that courage often comes from kindness the kind I extend to myself when I cancel a meeting to rest, and the kind I extend to others who may be holding their own unseen pain.
Fibrous Dysplasia may be rare, but invisible challenges aren’t. Every workplace, every community, every family has someone quietly coping with something that can’t be seen but deeply shapes who they are. If there’s one thing I’ve learned, it’s that compassion shouldn’t require proof. You don’t need to see the MRI to believe that something hurts.
So, as my bones continue to change shape, I’m choosing to let it shape me differently too 1 not into something smaller or weaker, but into someone more aware, more patient, more kind. Because sometimes the hardest battles are the ones fought quietly inside us, and the greatest strength is simply continuing to rise each day, unseen but unbroken.
