I Didn't Choose This Work It Chose Me Pt 2

When Experiences Become Patterns

If you read Part 1, you know where this story began.

A two-week-old baby, an ER visit and words from a pediatrician that never left me."He should not have been sent home."That night was only the beginning. It introduced me to the gap between what healthcare is supposed to feel like and what it feels like for the people inside it.

As my son grew, our relationship with the healthcare system didn't get easier. It got harder.

During his teenage years, what started as a single ankle sprain led to five surgeries and one of the most exhausting seasons of our lives.

Five.

In between those surgeries were misdiagnoses, fragmented care, and moments that lacked basic compassion when we needed it most. I carried his records from provider to provider, and asked questions in rooms that felt too rushed to answer them. I advocated sometimes loudly in spaces that weren't designed for the kind of persistence our situation required. Then one day after years of piecing things together we walked into the office of an expert foot and ankle specialist.This provider took the time to look at the full picture.What followed was a proper diagnosis, a clear path forward, and finally healing.

I remember sitting in that office relieved that we finally found a doctor who finally understood us and proved that excellence in healthcare was possible.That visit made it clear that excellent care was not only about arriving at the right diagnosis or about being insured, resourced or having access. It’s about how patients are treated along the way.

When the Patient Became Me

In 2015, my journey took a turn I did not see coming. One month after I moved my son into his freshman dorm and transitioned to a new school my life took an unexpected turn.I became a full-time patient almost overnight. As I sat across from my neurologist, he delivered a diagnosis of chronic intractable migraine and hemiplegic migraine. Then he recommended I step away from my career in education.

Step away! Seriously!

Fifteen years of classrooms, students, staff, school hallways, and an entire identity built on showing up and leading. In one conversation, it felt like the floor had shifted beneath everything I had built.The tears came first, then confusion, anger, and a sadness I wasn't prepared for.I didn't agree with his recommendation. But my body was making a very compelling argument that I couldn't ignore. Here is what I had to learn and accept:

Migraine has no known cure, and migraine is not “just a headache."

It is a neurological disease that sends the brain into full alert. It disrupts cognition, speech, and movement. It creates extreme sensitivity to light, sound, and smell. It steals days, plans, and presence without apology. It is invisible to everyone around you and completely consuming to the person living inside it.

My first focus was not advocacy. It was not awareness or consulting or speaking.

It was survival.

How do I get from one appointment to the next?

How do I manage this pain and still show up as a mother even from a distance?

How do I learn to live alongside thisinstead of just endure it?

Each visit revealed something new.A new medication, new obstacle, and a new adjustment to make. The learning curve was steep, and the terrain was entirely unfamiliar.

But something else was happening quietly in the background. As I moved through appointment after appointment this time as a patient, not a caregiverI noticed something deeply familiar. The same patterns I had witnessed navigating care for my son were showing up for me. Rushed visits, fragmented communication, compassionate care that felt more like a bonus than a guarantee, and the exhausting responsibility of carrying my own medical narrative because no one else was seeing the full picture.

At the same time, I also met physicians who were different. Physicians who had left large health systems because they could not practice real medicine within a 15-minute model. Physicians who opened private practices not for profit alone but for the ability to spend time listening, to connect, to see and hear their patients.Those physicians reminded me that this was never about a lack of caring.The issue was a system under pressure and good people doing the best they could within it.

The Yes That Changed Everything

During a visit with my current neurologist, she said something I wasn't ready for."You need to share your story because it will inspire others.” My response was immediate and honest:

“I am in daily pain, don't have time to advocate for anyone but myself and getting through each day is already enough.”But the seed had already been planted long before that conversation. It was there the night I stood outside my son's ER room refusing to fall apart, every time I pushed back on a misdiagnosis, and across 15 years of showing up for students and families who needed someone to speak when they couldn't.

I had been an advocate my entire life. In 2021, I said yes and joined the inaugural cohort of the American Migraine Foundation's Emerging Advocacy Program. What I found confirmed everything I had lived navigating care :

The gap was real, it wasn’t isolated, and I was not alone.

This is Part 2 of a 3-part series.

Friday, I'll share what I built from all of it and what I now know about the shifts that change everything in the patient experience. It’s not more technology, or more resources, it is communication, presence, and the courage to ask: “ How can we do this better?

Has a single appointment good or bad ever shifted the way you think about care? I'd love to hear your story in the comments.

#ChronicMigraine #MigraineAwareness #PatientExperience #HealthcareLeadership #IronsConsultingGroup #WomensHealth #InvisibleIllness #RiseAboveMigraine #ServantLeadership #CompassionateCare