The Hidden Costs of Medical Uncertainty: What My Father’s Journey Taught Me

Shiella
Jan 2
2 min read

Medical uncertainty is one of the most draining experiences a family can face.

Waiting for a diagnosis.

Waiting for test results.

Waiting for the next step that no one can clearly define.

During my father’s illness, even with decades in medicine, he often felt like a patient lost in a maze he once guided others through. That shook him — and it shook us as his family.

What we learned is something most families eventually discover:

The emotional toll of uncertainty is often heavier than the illness itself.

Why Uncertainty Happens

Healthcare uncertainty usually stems from:

Fragmented communication between providers
Specialists who only see a small part of the big picture
Delays in testing or insurance approvals
Complex diagnoses (like cholangiocarcinoma) that defy quick answers

No one tells you how heavy that silence can be.

What Families Can Do

Over the course of my father’s journey, we discovered several truths that now shape the book Pack Your Own Healthcare Parachute:

1. Ask the questions no one volunteers to answer.

Doctors and nurses are busy. They aren’t withholding information—there’s simply too much to assume you understand.

Questions like:

“What other diagnoses could this be?”
“What is the timeline for answers?”
“Who is coordinating all of this?”
“When should we get a second opinion?”

These unlock clarity.

2. Bring a second set of ears.

Patients hear 50% of what’s said in a medical appointment.

Caregivers hear the other 50%.

Together, you hear enough to move forward.

3. Track everything.

Dates, labs, imaging, symptoms, medications, specialists — when uncertainty rises, organization becomes power.

Why I Wrote This Book

I wanted families to have the emotional and practical tools we didn’t always have. This book blends my father’s medical expertise, our family’s lived experience, and the lessons we wish we knew sooner.

Uncertainty will always exist in healthcare.

But you don’t have to face it unprepared.