Speaking Your Body’s Truth: Talking to Providers About Post-Exertional Symptom Exacerbation
Overview
The article addresses the difficult reality many people with Long COVID, ME/CFS, POTS, and other complex chronic conditions face when navigating the healthcare system: they often feel they must prepare scripts, notes, and rehearsed explanations just to be believed.
It offers practical guidance and a ready‑to‑use communication script for a particularly common and harmful clinical situation—when a healthcare provider insists that symptoms are caused by deconditioning and recommends increasing exercise, despite the patient experiencing post‑exertional symptom exacerbation (PESE).
Key Points
1. Why patients often feel they need a script
People with post‑viral or autonomic disorders sometimes face disbelief or misunderstanding within standard medical care. Because their symptoms may not be visible and their conditions poorly understood, patients often come to appointments armed with notes or rehearsed lines to avoid being dismissed.
This isn’t overreacting—it’s adapting to a system not designed for their conditions.
2. Why “just exercise more” is harmful advice
The article explains that while exercise normally improves health, in Long COVID and ME/CFS, activity can trigger PESE:
- PESE is not normal fatigue
- It can worsen symptoms hours to days after minor activity
- Recovery can take days or weeks
- Instead of strengthening the body, exertion causes deterioration
Therefore, pacing and energy conservation are medically appropriate approaches—not avoidance, but protection of function.
3. What to say when a provider pushes exercise
The article offers practical, calm, and clear responses a patient can use in the exam room:
A) Redirect to PESE:
“Activity causes post‑exertional worsening of symptoms for me. That’s different from deconditioning. Could we explore pacing or energy conservation instead?”
B) Ground in lived experience:
“I’m not avoiding movement out of fear. Increasing activity has made me worse.”
C) Reframe priorities:
“For Long COVID and ME/CFS, pushing through can be harmful. I’d like to prioritize stabilizing symptoms before increasing activity.”
These aren’t scripts to memorize—they’re scaffolding to help reduce stress in the moment.
4. Tools that help communicate your lived reality
Because PESE often appears after the appointment, the article suggests:
- Symptom/activity logs — to reveal patterns between exertion and crashes
- Heart‑rate monitoring — keeping under a threshold helps show the connection between activity and symptom flares
These tools give providers concrete data that aligns with patient experience.
Core Message
Your body’s responses are real and valid.
PESE is not normal fatigue.
You do not owe perfect performance in the exam room to deserve good care—
but having supportive language ready can make those moments easier.
https://onelifelivedwell.substack.com/p/speaking-your-bodys-truth-talking
