not asking about total years this time, i’ve beaten that one to death. different question. counting back through my own mess i realized the wait wasn’t one clock, it was two, and i only ever think about one of them. clock one is the doctor time.
once i actually started bringing the pain up consistently it took five years and, i counted this week, six different people before anyone wrote fibromyalgia down. gp, then a rheum, then a second gp when i switched insurance, then PT who was great but not a diagnoser, then a neuro for the nerve pain stuff, then back to a rheum who finally said the word in january. every one of them ruled out their own thing and passed me sideways. nobody owned the whole picture.
clock two is the one nobody talks about. before any of that i spent probably two years telling myself a 5 was just how everybody’s body felt on a tuesday and i was being dramatic. i didn’t bring it up because i figured they’d shrug. so part of my “delay” was me not starting the clock.
that part is on me and it’s the part that actually stings. so when people say “took me 3 years” i genuinely don’t know which clock they mean. the doctor bounce, or the whole thing including the stretch where you’re gaslighting yourself in the mirror. the reason i care about the doctor count and not just the years is it changed what i tell newer people.
it’s not “be patient, it takes time.” it’s more like, the number of specialists is kind of the point. fibro is a diagnosis of exclusion so by design you get handed off until everything else is crossed off. six wasn’t me having bad luck, it was the system working exactly like it’s built to. that reframe made me less bitter about it, weirdly.
i wasn’t failing at getting diagnosed, i was just walking the exclusion list one door at a time. doesn’t make the years back, but it made me stop reading the handoffs as “nobody believes me.” so two actual questions for people further along than me: how many separate doctors did you go through before one of them wrote fibro down? and be honest, how long were you sitting on the symptoms before you even said them out loud to a doctor? trying to figure out if my two-clock thing is just me or if everybody’s carrying a hidden first clock they don’t count.