I’ve been criticized by people who only know me online that "if you can type group posts, you can work". It’s what they don’t see – that due to lightheadedness, I frequently type lying down, not sitting at a desk – that’s the disability. Their computer is a desktop model in the kitchen, so it never crosses their mind that mine is a laptop sitting on the bed. When’s the last time you saw a bed in a professional workplace?
Nor can they see that, at times, I am only able to type for 5 minutes out of an hour and have to rest the other 55 minutes. And at times, the wrist tendinitis is so bad that I can’t type at all. These days, almost every job requires some computer use, so if I can only use my hands 5 minutes an hour, I’m closed out of non-secretarial jobs, too. And, obviously, I’m closed out of any sort of manual labor.
I’ve been criticized by people who only know me online that I should "just get my lazy ass off the couch and go back to work." They’ve never seen the symptoms that interviewers see. Like some of my former doctors, they have themselves convinced that if they don’t see it, it doesn’t exist. Through the monitor, I look as healthy as anyone else.
My absence from the Net for a couple hours may be because I'm working, but could just as likely be because I've collapsed and am fast asleep during business hours. They assume that I'm doing the same things that they do when they're not online, and it doesn't cross their mind that I'm doing something they don't: having to sleep for 2 hours in the middle of the day because I exhausted myself doing a load of laundry, or simply because I spent 12 hours the night before tossing and turning, looking for a comfortable position, and got no sleep at all.
If they were the job interviewer, they’d quickly see the things that disqualify me from employment: the wrist braces that signal I shouldn't be typing, the asking for a trash can in case I throw up, the doubling-over with intense stomach cramps just before a two-hour bout of diarrhea, the fainting, the eyes closed due to blinding headache, the stumbling due to neurological defects, the dropping things due to muscle weakness, the inability to focus as dizziness gets the better of me, the struggle to find words. Blog posts can be edited and re-edited, with the assistance of others to provide the word I can’t come up with, whereas it’s painfully obvious in a "job thingie" that I can’t come up with the word, um, um, um, invest, no, interest, um, inter-something, um, whatchamacallit. "You mean, interview?" Uh, yeah, that’s the word. Cute once; not so amusing when it happens 6 or 10 times in an hour conversing with someone you’re trying to impress with your ability to charm clients and write letters.
What’s not apparent hanging out at home is that the commute to an office job kills me. At the end of my tenure, just getting to my desk (about a 15-minute commute) required an hour nap before I was able to do anything, and by the time I got home from work, I collapsed on the couch, completely unable to make it the extra 25 feet to the kitchen to get something to eat.
When I tried going back to work half-time a few years ago, by the second day I was already too exhausted to get dinner, and the third day I wasn’t even sure I was going to make it home before I collapsed, and spent the next 2 days in bed because I couldn’t make it further than the 4½ feet to the bathroom before my legs gave out. The second week, I made it to work one day. There was no third week; I couldn’t drag myself to the bus stop any more and they didn’t want me back after what they'd seen first-hand.
Part of my inner circle is someone who used to work for VocRehab, and whenever I suggest looking for a job, he ticks off a number of reasons why VocRehab won’t waste their time on me. As long as he keeps telling me that I’m impossible for even State VocRehab to place, I’m not going to waste precious energy (better spent keeping up the household chores and preparing healthy meals with fresh ingredients) going to their office for testing that will tell me what he’s already told me: that the things you can’t see over the internet make me unemployable.
For years, I got steadily worse because doctors refused to give me the pills I suggested, preferring to give me pills proven to be totally useless against my actual diagnosis. With proper medication, I’m slowly improving, but the experts say you shouldn’t try going back to work part-time until you are 70% functional most of the time; on my good days, I currently hover between 40-50%, and there are still things I can’t do (like bending down to get something from a lower file drawer without getting dizzy, or sitting up for a prolonged period without getting dizzy). Maybe in 3-5 years I'll be approaching that 70% where I could work part-time without rapidly making myself much worse; maybe not.
If someone wants me to go back to work, they’re welcome to try to find a job that accommodates my limitations. I guarantee, they will not find an employer who is willing to offer what I need to work, because it’s far in excess of what ADA requires. Tell them you have a friend who is as impaired as late-stage cancer, advanced heart disease, an AIDS patient just before death, but really wants to work and that you want them to offer her a job, with a guarantee she will not be fired for falling asleep on the job, 100 sick days a year, no deadlines, and a dark room with a bed and a locking door for those times she needs to lie down immediately for several hours. Try not to take it personally when they laugh in your face.
I knew going into the job hunt that I was a tough sell in such a bad relapse, and after a lawyer I interviewed with told me that my necessary accommodations exceed ADA requirements (and gave me case citations so I could read it for myself), I finally accepted that I’d have to apply for Disability. Where three consecutive VocRehab experts have testified that I am not employable, and three consecutive times, the judge’s written decision has not mentioned that testimony because he wanted to reach the opposite result than the expert testimony.
Just like people who have NEVER seen me in person, only know me online, reach the conclusion that my photo looks perfectly healthy to them and therefore I should be working. They have no expertise in CFS (other than the firm conviction that CFS is the same thing as depression and no more disabling than simple end-of-day fatigue) and no training in VocRehab to back up their assertions that I’m readily employable, just "too lazy" to get a job.
As noted in the SacBee article I posted the other day, bullying and verbal abuse of the disabled is a hate crime in California. I’m sure I can find a lawyer willing to take the case when he hears how many nice houses are owned by the various culprits, guaranteeing that between their homes and their retirement funds, he’ll get paid well for his work; in fact, when I asked who might take such a case, the first name I was given was someone I know, who once asked my boss if I was date-able, which leads me to believe he’d be very willing to help me. Especially since I have full names and accurate locations for the worst offenders. I hope it was worth it, when you have to explain to your husbands why your family has to move out of your house so it can become a board-and-care for CFS patients, and why your IRA/401k is now a charitable trust fund to provide for CFS patients.
2 comments:
Of course, once you hit that 70% mark, then you have to be able to do it day in & day out. I'm about there, but not every day. Some days are great, and I get a ton done. Some days I just sorta stare at the computer until I give up and go back to bed. Not as many of the latter, but still too many. And, more importantly, too unpredictable. I can meet a deadline, but I still can't do the day in/day out in an office. And, frankly, it's not worth it for me. I'd have to go to bed so early, well drugged, every night, I would have little to no energy done at the end of the day, spend the weekend resting, etc, etc. At some point there's a quality of life concern. I know I'm incredibly lucky that I have a husband to support me. But it drives me nuts when I think about what "could have been." Even if I get all the way to 100% every day, I doubt I can go back to being an engineer without going back to school or something. I'd rather put that towards developing a larger work from home biz. I find that I definitely like not having to deal with the "chicken shit" from most office environments. Silver lining and all that, right?
Allura writes: At some point there's a quality of life concern
Exactly. I'd spent so much of the previous 12 years doing nothing but working and resting so that I could work the next day, dragging myself from one three-day weekend to the next for that boost from the extra day on the couch, that it was a total shock when I lost my job and realized I could go to Target without having to think "if I do this, will I need a day off work later this week?" It didn't matter any more what the after-effects were of going shopping or to a movie, the little things that most people take for granted that they can do after work.
But for the most part, I functioned normally at work, so no one ever dreamed there was anything wrong with me. That dirty little secret that I kept in the closet at home.
Although money is tighter now, quality of life is definitely improved, because I can do things that are fun, not just work and rest.
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