ph-
The only thing worse than a positive result from a medical test, is a negative result, because there is no problem, therefore there is no solution, and I just have to deal with the pain.
It makes my experiences feel less valid, because why would I be in pain if there's nothing wrong? Am I just weak or over sensitive? What even is normal at this point?
It makes me regret standing up for myself after being dismissed by doctors for so long, because turns out they were right, there is nothing wrong.
ph-, a metaphor for pain
The pain I experience is intermittent, and technically not debilitating, but it still affects my life and my ability to do stuff.
Imagine there is a toddler running over to poke you every few minutes. The poke might be harmless on its own, but over time it starts to get hard to work, because it's so distracting. You'd also start getting mad at the toddler, in the same way I'm mad at my body for subjecting me to this
unsolicited sort-of-advice?, re: ph-, a metaphor for pain
@robinsyl That a test is negative doesn't mean there's nothing wrong, though, just that that test couldn't determine what's wrong (whether it's because of a problem with the test, or because the test is different than expected).
If the pain you experience cannot be associated with any clear sources, and *especially* if the location of the pain varies and is unpredictable and/or it comes and goes in 'waves', I'd suggest looking into the different variants of Ehler-Danlos. It's often overlooked and occurs particularly frequently in neurospicy creatures for some reason.
A lot of the clinical descriptions of EDS are kind of useless; if you want to determine whether this might be the issue you're having as well, I'd recommend looking at experience reports of EDS-havers instead, eg. on support subreddits. There was a good post about it here on fedi a while ago, but I can't immediately find it...
