Music, comics, art, and other stuff, all in one gigantic pile. The web of yesterday, tomorrow!
I find this video incredibly relatable. I’ve not been formally diagnosed with any version of EDS but I definitely have some sort of hypermobility disorder, and it’s definitely related to my fibromyalgia diagnosis. Everything she shares in her story is super relatable. Including the specific experiences with physiotherapists and being doubted by every doctor, and everyone blaming me being “out of shape” or having a “weak core.”
Ah yes, lots of frustrating stuff happening all at once, so much so that I’ve wrapped around to not caring about any of it.
I’m in the midst of a really bad fibro flareup lately, and am burning through my sick days at work pretty quickly. It’s frustrating and I need a way out, and something else that I can do as sustainable income.
I’m in a bunch of differently-intersectional support circles, and I’ve noticed the following:
Disability circles: Doesn’t understand the impact of my disability on my profession (because they don’t understand what my profession entails)
Technology circles: Doesn’t understand the impact of my disability on my profession (because they don’t understand what my disability entails)
The thin segment of disability+technology together: Doesn’t have any answers either, just sympathy and relatable experiences with not knowing what the hell to do
I keep asking in technology circles to see if anyone knows other jobs that would use my brain without needing to use my body and I keep on having to grow the list longer and longer with preemptions. No, I can’t go into management; I’m not good at coordinating other peoples' moving parts and it’s not what satisfies me as an engineer, and the brain fog from the pain makes this not a thing I’m likely to be able to get good at. No, I can’t go into teaching or training; that has even more requirements and rigidity in terms of my scheduling and I cannot do anything that requires that I be available at precise times on specific days.
I ask in disability circles, and there’s another, different list; no, I can’t use voice recognition software to program (not while there’s shared open-plan workspaces or I’m working in languages which aren’t suited to it – and I usually don’t have a choice of language). I still can’t go into management; it’s a completely different set of skills and not a natural progression. I already have a good ergonomic setup, both at home and at work. And employers don’t look too kindly on me smoking weed all day.
And in the intersectional circle, the only response I ever get is: “I have no idea, let me know if you figure something out.”
