Apr 8th, 2008, 06:21 PM
This is completely about you, not me, so please forgive the background story. I'm just trying to make sure you know where I'm coming from to see how well it matches your experience.
I'm disabled, because of being born with spinal cord cancer and because the treatment I had to have for the cancer fuxored me up bigtime for the rest of my life. I worked fulltime from my early teens to around age 27 and was well on my way to being a Productive Member of Society, taking med school classes by special permission as I prepared for the MCAT, when I had to leave school because my parents' insurance dropped me. Working was my only way to have any insurance, since no one would cover me due to my pre-existing (since birth) condition. I was working fulltime when my health REALLY began to crap out on me. I couldn't lift a patient's chart without hideous post-radiation muscle spasms, and since I was the only one who did my particular job. taking a prearranged day off to go to the neurosurgeon's became a ridiculously huge issue. It got to where I would use vacation days to see the doctor, and every time I got back there'd be a damn "attendance review" because my supervisors didn't like doing the dirty work themselves, even for a day.
I'm one of those people who doesn't look disabled at first sight, most of the time. I'm skillful at hiding my scars and the big divots out of my body, and most people only see someone with a weird, stiff, tiny neck who walks funny sometimes. So it was at my last "attendance review", when I had been gobbling anti-inflammatories and quite literally killing myself to get through an 8 hour workday, when my supervisor (who was a MEDICAL PROFESSIONAL, who should have KNOWN BETTER) accused me of faking my condition. It was the closest I've ever come to hitting someone. I damn near had a breakdown, and because I cried they sent me to the company "counselor", who said the supervisor was the sick one. I realized I just couldn't do it anymore, I couldn't keep up with a job and a field that are demanding enough even for a normal person, and it was what I had been trained for. So I broke down and accepted disability, which I had been fighting all my life.
That being said.
When you're on disability, you get a mixed bag of reactions. Some people are understanding, some are nosy, and some are plain dicks. If they're not falling all over themselves to snoop out why you have a placard or Medicare card, they're acting if you're fishing through their pockets for a wallet. Suspicion comes with the territory, especially if you don't have an external appliance like a prosthesis or aren't wheelchair-bound (which I am, but not all the time, so many people don't see it. )
I'm perpetually worried about my Medicare because I would be 100% fucked without it. Cancer, and all that came with my variety of it, isn't cheap. Therefore, I'm completely up-front and vocal about my capabilities.
When I can manage it, I make packages to donate to cat rescues. In my healthier days, I invented a cat toy that was very successful, but I'd never have been able to make a living with it (the spasms alone would stop me even if I could have managed otherwise). So when I donate (and I consider it "volunteer work" because I make the toys), I make it very clear that it takes me forever to crank out even one of these things and it's not exactly a productive or profitable enterprise. By being up front by detailing exactly what's behind what you are capable of doing, it helps with people who say "if you can volunteer, you can work".
I wouldn't advise trying to hide anything. Just be completely honest about what you can and can't do. If you can get out of the house for a couple of hours on good days, and good days are few and far between, make sure people understand that. Otherwise, they get the idea that you're simultaneously traipsing around, tra-la-la-la-la, and bleeding them dry when that isn't the case.
If you want to volunteer, don't overextend yourself...the previous posters were right about volunteering jobs being just as strenuous as paid ones. Stick to something you can manage, and don't mislead them (pr yourself) about your capabilities. If you have a doctor you see regularly for your disability-relevant issues (and I don't know who you see more...orthopaedic surgeon? neurosurgeon? neurologist?), ask for their input as to what you can and can't handle. That way, if there's an issue, you can show them what your physician's official opinion was.
I hope that helped, and again, this wasn't about me, I was just trying to give background so you could see where I was coming from with my advice.
Let me know if there's any more I can do to help, and I apologize for my shitty typing...I'm on bedrest and trying to type flat on my back (damn m's and n's).
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