Parastoo's Story: Waiting, Wondering and Learning
For those living with PSC, balancing symptom management with the rhythm of daily life can feel like a full-time job.
Parastoo reflects on her 15-year journey navigating the complexities of this condition while showing up for the roles that define her: mother, wife, friend, and professional.
This is her story of life as an autoimmune warrior.
Diagnosis
I have lived with primary sclerosing sholangitis for more than 15 years.
I was diagnosed at just 20 years old, after already navigating other autoimmune conditions since my early teens.
In many ways, PSC placed me in a space that feels suspended between different worlds - a constant balancing act of doing what’s right, what’s best, and, on the hardest days, simply figuring out how to keep moving forward.
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Good days and bad days
There are days when I feel strong, capable, and grounded. On those days, life feels manageable. But the bad days are heavy - physically, emotionally, and mentally.
PSC brings with it a unique kind of uncertainty: every new symptom becomes a question, every change a possibility. Is this just a flare? Is it progression? Is this the sign of something more?
And always, quietly in the background, the thought of transplant - whether it’s days, months, or years away - echoes like an unanswered question.
The in‑between is its own kind of black hole: waiting, wondering, learning to function through ambiguity that never entirely goes away.
Life Beyond PSC
And PSC is only one layer of my life. I am a mother, a wife, a sister, a daughter, a friend, an employee and an autoimmune disease warrior.
I try to show up fully in each of these roles - to fit into every box life expects me to fill - while also carrying an illness that demands energy, resilience, and courage every single day. I strive to succeed, to survive, to push through the unknowns that can feel overwhelming at times.
My motivation to keep going
But through all of it, what keeps me fighting - what keeps me breathing through the fear and rising again after every difficult day - is the reminder that I have every reason to survive and to thrive.
My son.
My hope.
My joy.
He is why I fight for every good day.
He is why I hold on through the hard ones.
He is why I choose strength, even when it feels out of reach.
I live with PSC, but PSC does not define all that I am - because I am still here, still moving, still loving, still hoping, and still choosing to thrive.
Thank you Parastoo for sharing her story in support of Rare Disease Day.
