When the Body Changes the Plan: A Conversation with Dr. Stephen Trapp
What does healing look like when you can’t fix it?
In my very first live webinar, I sat down with Dr. Stephen Trapp, a neurorehabilitation psychologist now at MaineHealth.
Dr. Trapp developed Long COVID in 2020 after years of treating others with post-viral and neuro-immune conditions.
We were also joined by Kristi Woods, BSN, RN-BC — a nurse living with ME/CFS — who brought her own honest experiences to the table.
Stephen and I explored what happens when the body changes the plan. We covered sticky topics like how to rebuild identity, communicate through painful emotions, and hold space for both science and uncertainty.
“Sometimes the first win isn’t a diagnosis—it’s a plan.”
(Watch the full conversation below.)
From Clinician to Patient: Stephen’s Story
Before COVID, Stephen’s days were spent helping people recover from complex neurological conditions. Then, he became one himself.
What followed was a detour through disability, recovery, and recalibration. This new journey has forced him to rethink what “progress” means when healing doesn’t fit a timeline.
“You can understand something intellectually,” Stephen said, “but when you’re in it, it hits like a freight train.”
He returned to work part-time in neuro-rehab, carrying both the humility of lived experience and the clarity of a clinician. The lesson he carries forward? Patients need continuity more than quick fixes.
From Vet to Patient: Carrie’s Parallel Story
For me, the shift came years earlier when I developed ME/CFS in 2009 while practicing veterinary medicine in Texas.
The heat was too much for me. I’d spend my days with horses, then my nights trying to recover enough for the next morning. Eventually, I had to step back from care, knowing my body and physical capabilities had changed.
That’s when I named what was happening as a way to cope.
“I call her Vivi,” I shared during this conversation. “She’s the version of me who arrives when my energy is gone. Giving her a name lightens it, for me and for others.”
Giving my condition a ‘V’ name to match the virus I believe caused my illness has helped make the invisible more visible. Along with my Midnight Effect Metaphor, it offers a language for loved ones who want to understand what’s happening for me in the moment.
“Patient Crying” Isn’t a Diagnosis
Kristi and I shared stories that might sound familiar.
When Kristi had a normal human moment of frustration and tears in a doctor’s office, this vulnerability was misinterpreted as mental instability.
“The note in my chart didn’t say weakness or pain,” she said. “It said crying hysterically.”
I also shared my experience seeking answers for my ME/CFS symptoms. During a routine balancing test, I fell to the floor from leg weakness and cried. My tears derailed the doctor and the consultation, totally overshadowing the symptoms I was exhibiting.
Stephen, from his psychologist’s lens, noted that this happens all too often: “Patient is crying” becomes a common referring complaint. Emotion gets psychiatrized instead of being understood as context.
We talked about reclaiming emotion as part of the medical story, not proof that it’s “all in your head.”
Sexism, Bias, and the Post-Viral Spotlight
Historically, conditions like ME/CFS, fibromyalgia, and dysautonomia have been dismissed, especially in women.
As Stephen noted, COVID forced medicine to look again. When men began developing post-viral conditions in higher numbers, attention and research funding increased. This reflects long-standing gender bias in how illness is recognized and studied.
“When men started getting these conditions in higher numbers, the spotlight turned on. But it shouldn’t be like that.”
This unequal recognition and lack of urgency for women threads through almost every post-viral narrative.
How to Use a 15-Minute Visit Well
The most practical part of our conversation was also the simplest: how to make limited appointments work for you.
Here’s what we all agreed on:
Arrive with a one-page plan. Write down your top two or three symptoms, a brief timeline, and what you hope to accomplish that day.
Speak in function, not vague feelings. “I can stand to cook for five minutes” gives a clearer picture than “I’m fatigued.”
Name variability out loud. “You’re seeing me on a good day; I usually crash after visits.”
Bring between-visit data. These can include symptom logs, photos, or videos that reveal what’s missing in the exam room.
Ask for continuity. “If we don’t have an answer today, can we set a follow-up to track these symptoms together?”
These simple acts can transform an appointment from an ending into a next step.
What’s the Heart of It?
Invisible doesn’t mean imagined.
We can’t always leave with certainty, but we can leave with next steps, a tracking plan, and a date.
And sometimes, the most human thing we can do in medicine is to stay and listen.
“Function forward,” Stephen said. “That’s where meaningful healing happens.”
👉 Watch the Full Conversation
Chapters:
Stephen’s story & move to Maine
The diagnostic window & “just the flu”
Sexism, bias, and chart labels
Naming the invisible (“Vivi”)
How to use short visits well
Additional Resources
Follow me on LinkedIn for future live conversations and highlight clips
Learn more about ME/CFS and Long COVID advocacy
Connect with Dr. Stephen Trapp for more neuroimmune insights
