You can look the same and still feel entirely different.
When I was first diagnosed with sarcoidosis in 1998, I thought I had learned what it meant to live with uncertainty. I learned the language. I learned the treatments. I learned how to function inside a body that sometimes-had other plans.
Over time, sarcoidosis became part of my medical history — not my identity.
I was a mother.
A professional.
A leader.
A student.
A woman building meaning out of long chapters and second chances.
And then, recently, I heard a new word.
Neurosarcoidosis.
Same root disease. Different territory.
This time, the inflammation wasn’t confined to places people commonly associate with sarcoidosis. It had reached my nervous system — the part of me that governs thought, energy, coordination, and clarity. The invisible systems that quietly make everything else possible.
The diagnosis changed.
But I didn’t.
That distinction matters to me.
Because chronic illness has a way of trying to rearrange the narrative. It invites fear. It tempts identity drift. It whispers, “This will define you now.”
But here is what I know:
I am still me.
I still care deeply.
I still think deeply.
I still show up.
Some days, showing up looks different. It may require more pacing, more rest, and more honesty about limits. It may mean working within fluctuating energy or navigating fatigue that sleep does not fix. It may mean explaining symptoms that are not visible to the naked eye.
Neurosarcoidosis is often described as an invisible illness.
That is true.
But invisible does not mean imagined.
And invisible does not mean absent.
There is real neurological inflammation. Real cognitive fatigue. Real unpredictability. Real adaptation is happening beneath the surface.
And yet — the core of who I am remains intact.
This series is not about dramatizing illness.
It is about naming something that many people live with quietly:
the tension between what others see and what the body carries.
It is about faith that is steady rather than loud.
Hope that is grounded rather than performative.
Love that includes boundaries and self-compassion.
It is about the quiet courage of still showing up — in work, in relationships, in purpose — inside a body that requires attention and care.
The diagnosis changed.
But I didn’t.
And that is where this story begins.
