something that’s been sitting with me this week. i spent the first 8 months of this being told it was anxiety. primary care: anxiety. PA at the same practice: stress response.
rheumatologist: “have you tried therapy.” nobody checked my HR when i stood up. nobody ordered a tilt table. they had a category and they put me in it. i finally pushed for a proper workup around month 9.
neuro did MRI, spinal tap, metabolic panel - all clean. then said my problem was pacing. which, as a PT, was its own particular kind of insulting. but at least that’s a real thing, not “your brain is manifesting this.” tilt table at month 18 caught the POTS.
resting HR spiking 35+ bpm on standing, going orthostatic within 3 minutes. it was there the whole time. nobody had looked. here’s what i don’t see talked about enough though: those 8 months didn’t just waste time.
they broke something in how i process my own signals. i notice a symptom now and immediately start running it through a filter. is this real or am i catastrophizing? is my resting HR actually elevated or am i just checking it bc i’m anxious about checking it?
i had to fight through that noise to even push for the tilt table. kept convincing myself i was probably fine, probably anxious, probably the thing they said. as a PT i spent 20 years teaching patients to trust their bodies. i made that argument constantly.
and i still talked myself out of my own symptoms for months bc a doctor gave me a framework that explained everything away. the gaslighting didn’t just delay diagnosis. it rewired how i track and pace. that’s a separate injury from the illness itself, and it’s taking longer to undo.
anyone else find that not being believed early on messes with your ability to read PEM signals accurately now?