The moral of the story about Linda Czarnik, who has Chronic Fatigue Syndrome, yet manages to hold down a job as a bartender in a banquet hall (Staying on the job, Asbury Park Press, New Jersey, USA, 30 July 2008) - albeit on reduced hours, with the blessing of her employer - is that, since Linda can do it, anyone with CFS, who does not stay on the job, is an idle malingerer and a sponger on the rest of society.
Well, her story may be one that seems to end happily (if not ever after) but it will be outnumbered many times over by others in which the struggling employee tried to soldier on, did collapse, even after praying for strength, were made worse by it, didn't have such a sympathetic boss, couldn't manage on half wages anyway, are now unemployed, dependent on charity, in despair ... or dead. And that is immoral.
Yours sincerely
Dr John H Greensmith
ME Free For All. org
Staying on the job (Asbury Park Press - Asbury Park, New Jersey, USA, 30 July 2008)
BY: DAVID P. WILLIS
(EXCERPTS)
Having a chronic illness or medical condition doesn't mean your work life is over.
Most people who have a disability want to work, Joffee said. Of the Americans with disabilities between the ages of 18 and 64, 32 percent are working, she said, citing figures from the National Association on Disability. Of those who are not working, two-thirds wish they were, she added.
"We all want to be productive," said Dr. Charles Hayne, a family practitioner in Freehold Township. "We all have a basic need to see an accomplishment in whatever we do every single day. I think that is a basic humanquality."
There are no hard-and-fast rules about being able to keep working on the job, said Hayne, of Medical Associates of Freehold. It depends on several factors.
"The major factors are the condition itself and how debilitating it might be and the nature of the individual's employment," Hayne said.
"There needs to be a combination of meticulous management on the part of that patient's physician and also some understanding on the part of that individual's employer to try to make the workplace less stressful for that individual," he said.
Laws protect people with chronic illnesses at work.
In New Jersey, workers can't be dismissed for having a chronic medical condition unless they can't do the job and another reasonable accommodation can't be made, said Stephen Leone, a Toms River lawyer.
People should try to figure out how agreeable their employer has been to others, Messner said.
Toms River resident Linda Czarnik's boss allowed her to adjust and cut down her hours as a bartender at a banquet hall after she was diagnosed with chronic fatigue syndrome.
Chronic fatigue is an illness that affects at least 1 million Americans. It involves a loss of energy and stamina, among other symptoms, according to the New Jersey Chronic Fatigue Syndrome Association.
Her faith helped to make the job work. "When I stood at work and I thought I was going to collapse because it took so much effort to stand, to move, to breathe, to balance . . . I can't tell you how many times I was like "Dear God, please let me get through it,' " she said.
She said she was fortunate because she had an understanding boss. "I was really blessed."
Czarnik worked from 1991 to 2004, cutting down her hours as needed. "I did not want to succumb to no work," she said. But when she started to make mistakes on the job, she realized she had to go on disability.
People who have to leave their job can try to find something creative to do within the limitations of their illness, Joffee said.
Copyright © 2008 Asbury Park Press
* * *
And there is the key: "an understanding boss".
In 1987-88, I had an understanding boss who was willing to let me come and go as needed, because he didn't want to losea valued employee. In 2000, it was the employer's decision -- not mine -- that I could no longer work. It was not my work ethic that changed, but the employer's loyalty ethic to me. Different employer, different priority.
As Joffee says, most of us who are on Disability wish we were working. But we can't find an understanding employer willing to hire us. Employers are always happy to point a finger at the disabled and declare that they should be working and not collecting government benefits, but they want the competition to hire us, so that their own firm doesn't have to pay higher health insurance premiums or take the risk that we're "an accident waiting to happen". Until someone mandates that every employer must hire one person off SSDI, it's simply not going to happen.
There are laws that protect the disabled IF they are able to do the job. But some of us can't do the job. I can work from bed, but commuting exhausts me, and I cannot sit upright for long because I'll pass out. I spent several years trying to talk employers into letting me work from home, and getting only excuses why it wouldn't work (some of which were valid).
Fortunately, I had a computer, internet access, and a saleable skill, so I could employ myself when no one else wanted to take a chance. But I'm not doing the same job I used to have, and my clients don't know the extent of my disability because I don't meet them in person. But for someone whose only skill is bartending or cleaning hotel rooms, they can't do that via computer.
The end of the story is that even with determination and an understanding boss, the time came where Linda had to go on Disability.
And the same is true for most other CFS patients: the time comes when even the most understanding employer can no longer work around your limitations and you have to apply for Disability. For me, and for Linda, that time came after 13 years of working through the pain, and jettisoning everything else in my life in order to keep working full-time (because there are essentially no part-time paralegal jobs). But instead of getting a newspaper article written about my dedication to my job, I get only "slings and arrows" from people who can't understand why I didn't keep working. (Though no one has actuallyoffered me a job, only criticism for not having one.)
And I get no credit for starting my own business, either.
I'm not collecting SSDI or getting food stamps or Medicaid. As long as I was applying for jobs (which I was, though no one was willing to hire me when they saw my symptoms), I was legally entitled to Unemployment; when that ran out in Summer 2000, that was the last cent of goverment assistance I got. Although I am legally entitled to SSDI, I'm not getting it because the judge thinks any employer should feel lucky to get someone with my experience and qualifications, regardless of my symptoms.
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