Let’s talk a little about a paragraph in Cort’s comments:
Even in this severe outbreak, though, almost half the patients (49%) were able, despite their fatigue, to fulfill "all work or home responsibilities"(but with nothing left over). (This explodes the myth that all or even most CFS/ME patients are "disabled". While a significant number of CFS/ME are disabled substantial numbers of CFS/ME patients are able to work. Rates of employment in CFS studies have varied dramatically from study to study (32% to 73%) with an average employment rate probably around 50%).
It also explodes the myth that slackers claim to have CFS so that they can give up their jobs. No one whose ultimate goal was to stop working would have put up with the "no quality of life" that I had for much of the dozen years that I was working after receiving the diagnosis. They would’ve quit as soon as they realized that continuing to work required jettisoning the things that made life fun.
I was one of that 49% who managed to take care of the work and home responsibilities, but had little energy left for anything else. My co-workers would babble happily about spending the weekend jet-skiing; my plans were to go home and lie on the couch so I could make it through the next week of work. When they got a three-day weekend, they’d plan on a mini-vacation out of town; I’d thank God that the third day of rest would give me a little extra boost to make it through to the next three-day weekend. Without those extra rest days in there, I would’ve been even more exhausted.
I went to a doctor while I was struggling to continue working even part-time, and was accused of wanting to quit my job. I didn’t want to quit – I wanted to get healthy enough to work full-time. The stereotype blinded him, and he refused to consider that my goal was to continue working; in fact, I had not stopped working. As soon as I could drag myself out of bed for a short time, I was back at my desk. My job was in jeopardy because I wasn't able to do the work properly (although my employer could see how hard I was trying, they couldn't take the chance that I would cause them to commit malpractice). That didn’t square with what he wanted to hear, so he tuned it out. I don’t think it ever registered with him that I was still working despite the obstacles.
Just as it doesn’t register with some of the commenters in this blog that I am working; I own my own business independently, and am in partnership in two other businesses. I actually work a higher percentage of my functional hours than most healthy people, which means that I spend a much lower percentage of my time doing fun things like going out with friends, going to concerts, reading, stitching, etc. Some weeks, the percentage of time I spend doing something fun is precisely zero.
But because that doesn’t fit the stereotype of CFS patients as being lazy, it will never be acknowledged how many CFS patients struggle mightily to continue working as many hours as they can, until (in most cases) their employer makes the decision that they are no longer employable. Very rarely have I heard a patient say they quit voluntarily; either they were fired or they were pressured to resign.
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