- indieweb: fibromyalgia
- indieweb: chronic pain
- indieweb: intersectionality
- indieweb: disability
- indieweb: rant
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.”
Outside of those circles, people ask if I can go on disability. It’s not a magic bullet that will actually help anything. I have too much savings and assets for the federal programs. When I had disability insurance I needed a diagnosis from a doctor to use it – and at the time I didn’t have any doctors who were willing to give me one. (“It’s just pain,” they’d say, “nothing that keeps you from working.”) Now that opportunity is long-gone.
I feel used, abused, and discarded. I spent my entire career working hard for other people trying to make things work well and make the world at least a somewhat better place while doing so, and as soon as my maximum value has been extracted, there’s nothing I can fall back on.
I tried to do my own thing for two years. I never got more than a couple of sandwiches worth of income per month. Okay, I guess a couple of months I had enough one-time payments for contract gigs that covered around half my mortgage. That just isn’t enough to live on, though.
My mom suggests that I should go back to school and get another degree “in something.” So that would just burn my savings even quicker, while putting me on a schedule I can’t keep up with all for the possibility of maybe getting an entry-level job in some other field, assuming I can even absorb the information at this point? (Remember: brain fog.)
The disability office at work suggests I should get a note from my doctor with a list of accommodations. I’m already accommodated as much as possible in my job, short of going on disability leave. But because I don’t have (or qualify for) disability insurance, the leave would be unpaid – which means all it does is guarantee that I have the same job I cannot sustainably do to come back to. There aren’t other positions in my lab that I can do. There aren’t other positions at the university that work for my constraints either.
Right now the only thing that seems feasible is to go back to living off savings while I try to figure something else out. At my current burn rate and savings level, that would last around two years. Then I’d have to look into selling my home and moving somewhere cheaper (and throwing away all of my current social life, probably). I figure if I did that I could make the money last for the rest of my life, but what kind of a life would that be?