09/06/2026
Five things I wish every medical provider understood about POTS, dysautonomia, Long COVID, ME/CFS, and EDS.
1. Stop judging patients by how they look.
People are routinely dismissed because they look healthy, are overweight, or seem “too young” to be this sick. These conditions affect every age, size, and appearance. The evaluation should determine the diagnosis—not a visual impression.
2. Normal testing does not mean nothing is wrong.
Ruling out serious pathology matters. But nervous-system and immune-system dysfunction can be profoundly disabling without appearing on standard imaging or bloodwork. “We didn’t find pathology” and “you’re fine” are not the same conclusion.
3. Stop ignoring labs that are only slightly abnormal.
Low ferritin. Low vitamin D. Elevated fasting insulin. Low C-peptide. Thyroid, cortisol, estrogen, progesterone, or testosterone sitting at the edge of the range.
Individually, these findings may not look dramatic. Together, they can matter significantly. They are often inexpensive, actionable opportunities to help someone feel and function better.
4. There is more available than what you personally offer.
Medications and standard recommendations may help, but they are not the entire landscape. Functional neurology, vestibular rehabilitation, functional medicine, and targeted neurological rehabilitation can all have a role.
Referring beyond your own toolkit is not failure. It is good care.
5. Communicate with other providers.
These patients are already exhausted. They should not also be forced to quarterback a fragmented medical team and repeatedly explain what every provider is doing.
These are not extraordinary requests. They are the minimum people with complex chronic illness deserve.
The dismissal, gaslighting, and siloed care have real consequences for people who could be doing significantly better with the right approach.
What has your experience with the medical system actually been?