There’s an awful lot of not-so-positive-media out there about people with exaggerated disabilities gaming the system, not wanting to work or looking for a free ride. Every internet troll is pretty sure they’ve seen “someone”, who claims to have a disability, climb a ladder, paint a fence or go for a run. Proof positive that “someone” should be working, no questions asked! (Spoiler: Not proof.) My personal favorite was the commenter who saw a younger woman leave her cane behind to grab her toddler as the kid made a run for an open door, so therefore the woman must be fine. Seriously? Ignorant much? Parent ever?
You know my story: Hidden disability, look 100% normal some days, great brain, miss my first career every day. If the internet trolls saw me on the street, they’d cry “faker!” for sure. The reality is more complicated, and much more nuanced. Internet trolls don’t see me when I spend four days at home in my pajamas, curled up in a painful ball, because that’s as good as those four days get. (They’d probably tell me I’d be fine if I just got out more, because, trolls….)
So Why Can’t I Just Go Back To Work?
Well, physical jobs are 100% out, as are jobs that require me to, you know, show up. Even though I “look so normal” on a day I make it to the gym, regular bouts of “four days in pajamas” run through sick leave faster than I can rack it up. So that leaves jobs that allow me to work from home.
I’ve been a writer for years, with the idea, when my kids were younger, that maybe someday it would turn into a book or a blog or a gig “on the side”. I have a second skill, and an internet connection that means I can parlay that skill into work, completely from home and on my own time. I’m starting with every advantage. I’m smart, reasonably articulate, a practiced writer with a specialized degree that might even help me write about healthcare.
It still might not be enough, in the face of my physical circumstances, to turn into a self-supporting career.
Jobs require reliability. In my case, freelance writing means writing to deadlines. It means writing quickly and steadily, as more words means more articles means more pay.
So, what happens when the deadline is Friday at 3:00, but Friday is a day that I can’t function? What if I need to interview somebody on a day that is painful enough that speaking is difficult? What happens on the days I can’t write much, or at all?
I can, and do, push through (in writing and in life) and make a deadline. Make two. Maybe even three. But the work suffers, I suffer and by deadline three or four, the house of cards comes crashing down. It’s possible to push through for awhile, but not in perpetuity. So I scale back, I work on one piece at a time, or maybe two. I work with enough lead time to get ahead. It’s better than nothing, but it’s a challenge to build a career. (Also, you have no idea how badly I wanted to call it “lede time”, because, puns.)
Writing is my solace, and doing it professionally is the light that came from the darkness of disability, but that reality sucks. It is the reality of trying to work in a body that can’t catch up, and keep up, not forever. I can see the pieces on the horizon, the pitches and the growth as acceptances flow in, as requests trickle in. I can see that oh! that’s the perfect article for me…. but you need it by 2:00? I can’t promise to do that. Not today.
I’m trying to build a career around an unpredictable disability. I just don’t know yet if that’s possible, no matter how many times I pitch and write and wish it into existence.
And that’s with every advantage. Now imagine you don’t have a high school diploma, or skills that transfer beyond a manual labor job or reliable access to the internet or a phone, or enough money to buy food. What if managing your disability alone takes hours a day? How does one just “go back”?