I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on March 31, 2008, 10:37:31 AM
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Aching to know
Should people with chronic illnesses share that news with employers?
Monday, March 31, 2008 3:07 AM
By Lisa Belkin
NEW YORK TIMES NEWS SERVICE
* Strong at the Broken Places, (Harper, 352 pages, $24.95) by Richard M. Cohen
One of the first decisions someone makes in the emotional hours after a scary diagnosis is whether to tell others.
Many of us share the news with our loved ones, but what of the circles beyond, particularly those at work? Your boss?
At first, Richard M. Cohen, whose multiple sclerosis was diagnosed when he was 25, did not tell. Cohen -- whose latest book, Strong at the Broken Places, recounts the stories of five patients with chronic illnesses -- was starting what would become a hard-charging career as a TV news producer when he learned of his condition. He feared he would be considered unfit. He kept his secret for years, despite failing vision and shaky balance.
Marlene Kahan, however, disclosed her condition right away. Four years ago, when she learned she had Parkinson's disease, she had been the executive director of the American Society of Magazine Editors for more than a decade. With longevity came security, she hoped.
Kahan was also afraid that the mix of symptoms and side effects from treatments would leave her at "less than 100 percent," she said, making her seem as if she was either slacking or sicker than she was.
"I didn't want people to wonder and jump to other conclusions," she said.
Gayle Backstrom -- whose fibromyalgia, a chronic pain condition, was diagnosed decades ago -- understands both paths. Still, she advises to keep a condition
private for as long as possible because that's safer.
The Americans with Disabilities Act prohibits an employer from dismissing or failing to hire a chronically ill employee on the basis of that disability "if they are able to do the job with reasonable accommodation," she said. But in many cases, "reasonable," "able" and even "job" all become open to interpretation, said Backstrom, the author of I'd Rather Be Working.
An excellent resource for workers facing this choice, she said, is the Job Accommodation Network, a service of the U.S. Labor Department. Most questions on its Web site, she said, come from workers, and "They are looking for suggestions on how to adjust their work without bringing it to the attention of their bosses."
They buy themselves custom footstools and wrist rests. They sneak off to restrooms to take medications. To hide their condition on the worst days, they call in sick, giving a reason other than their chronic illness.
Cohen did that for almost 10 years. In Blindsided: Lifting a Life Above Illness, he recalled an interview for a job as a producer on CBS Evening News With Walter Cronkite. Cohen asked a friend, Robert MacNeil, whether to mention his MS. Recalling the answer, he wrote: "Say nothing. Your silence is an honorable dishonesty."
Cohen got the job and was able to keep his secret with scrupulous attention to logistics, quietly using public transportation to conceal that he could not see well enough to drive. Years later, the executive who hired him agreed that he had been wise to stay mum.
"I am not proud to say this," Cohen quoted the man as saying, "but I don't think I would have hired you if I had known."
Celeste Lee also chose to keep details of her life from her employers for years. An autoimmune disease she developed in high school 25 years ago led to kidney failure. A transplant was successful, but eventually her body rejected the organ. That left her dependent on regular dialysis.
At first, she managed it on her own with a saline bag and an IV needle. She then worked as an administrator at a Boston law firm, and because the process took 15 minutes behind her closed office door, "It was something they didn't really need to know," she said of her employers and co-workers.
The timing was sometimes tricky, but life went on. She earned a master's degree, was promoted, married and had a son.
But after she moved to take a job at Duke University in North Carolina, the simpler form of treatment became insufficient. She switched to hemodialysis, which required that she be hooked to a machine that cleaned her blood for three hours, three days a week.
Shortly after, she was offered her "dream job" as chief of staff to the chief executive of the Duke University Health System. The high-paced work would require 12- to 15-hour days. For the first time, she wondered whether her illness would hold her back.
She raised the issue in her interview.
"At first they were uncomfortable because they thought that if they didn't hire me, I would accuse them of discrimination," she said. "But I said, 'No, we have to talk about this.' "
She got the job. Now she is at the outpatient dialysis clinic at Duke by 7 a.m. on Tuesdays, Thursdays and Saturdays. On workdays, she is at her desk by 10 a.m., respectable by most standards, but hours later than her arrival on non- dialysis days. She also arrives feeling "hung over" from the treatment, she said, another reason why she thought she had to be upfront.
Cohen also revealed all once he had proved himself. He then went on to squint his way through the Solidarity protests in Poland and the violence in Lebanon, once staring down Palestine Liberation Organization guards because he couldn't see the guns pointed at his head. Eventually, he opted out of breaking news for the slower pace of documentaries.
Now, even writing books is increasingly difficult because of his worsening condition. He wrote most of Strong at the Broken Places with his left hand because his right side doesn't function well.
Yet he commutes daily to his office in New York from Westchester County, N.Y., where he lives with his wife, Today co-host Meredith Vieira, and their children.
In recent weeks, Lee's doctors have confirmed that she faces a new challenge: nephrogenic systemic fibrosing. It is essentially a thickening of the tissue or subcutaneous skin that can affect muscle and organ functions.
"At some point I have to consider whether I will have to bow out of this position," she said. "But I want that to be my decision, and I won't make it until I have to."
http://www.columbusdispatch.com/live/content/life/stories/2008/03/31/1_CHRONIC_ILL_BOOK.ART_ART_03-31-08_D1_J49P2KS.html?sid=101
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I told my employer when I knew dialysis might be soon - so I started telling my managers from around the year 2000 when the docs started warning me things could happen soon. As it was I lasted till 2006 before I had to start but it was very important to be to be open and upfront about the situation. I felt I would want them to know that if suddenly things fell to bits and I suddenly couldn't work for X days a week, or worse something happened AT WORK there was some understanding on their end. I also would not want to put them in the lurch when it was a situation I had some warning about.
As it happens every single boss I've had have been VERY supportive right through the process and I feel they have apprieciated knowing in advance where I stood rather than suddenly being told one day "oh yeah like I'll need to change my work pattern in a couple of weeks because I'm starting dialysis"
I've also tried to approach it not in terms of "poor me" or anything just to let them know this was the deal.. or COULD be the deal with me. Plus I think it's also aided in understanding for those times when I just can't come in because I feel so horrid.
By the same token I've told my current management that if/when I get the transplant call it means I could well be out of action for a month or more - and obviously I have no way of knowing when that could be... Of course they've said they hope it is soon and not to worry about work just to get the transplant... so I feel well supported with that also.
Now all I need is the call :)
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Otto had his 1st transplant 2 weeks after starting a new job, he was back to work 2 weeks later, he is still with that company and they know he's waiting for Kidney #2.
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Where I work.. we use the FMLA packages.. that only covers you for so many leave days though.. you can take more.. but you arent protected.
It's a real balancing act to get your schedule changes and such..
Since I get major migraines that debilatate me at times.. I got a package for that.. and one for my diabities if it goes bonkers at times (I'm controlling it so far by the foods I eat)..
But those that have more severe conditions.. they recently did a major push to put them out on disability and even help them with the social security thing.
Now mind you.. this company also.. if you get hurt on the job... sends you to THEIR contracted doctors that will sign off you are fit as a fiddle and when you go to your doctor.. you really have a herniated disk..
Where do i work? Look in your mail box... luckily I work in the office and do purchasing for the Miami area.
I refuse to be chased by dogs and attacked by bees!
Also..back to the point here.. they at one time where supposed to hire the handicap and the menatlly disabled.. no more.. now it's just veterans preference and you have 90 days (even if you are military disabled) to prove your self worth.. If you can swing it.. you are safe.. you call in ONE day or ONE hour in those 90 days.. out you go..
Our managers and bosses have NOOOO access to what our diseases are or chronic illnesses.. that goes only to the Nurse/Medical records (but of course they all talk)...
Now I am about to add another one for a pending kidney stone surgery that is lodged and too large to pass..
You have to cover your absences..
If they know you have a disability coming in.. you will get bad reviews and be tossed out on your ear in the first 30 days..
This.. from a former government agency... protect our rights? yeah right...
Been there 26 years.. the newer ones.. have to go thru hoops of fire..
Bottom line.. if it's government.. don't tell!..
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In my case I can't hide, wish I could. Being blind on one side would have to be told to an employer. But could hide other medical problems till the usual drug and medical test are done for hiring and insurance.
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First, as for my employer...seven months after starting my job, I took eight days off to get married and go on my honeymoon. The day before those eight days were up, I was admitted to the hospital for six days with all the kidney stuff. I had my PD cath placed during those six days, so the original eight days ended up being more like three weeks. Then a couple of weeks later I took a half day everyday for a week while I did PD training, and during those few weeks, I was doing hemo from 2:00 until 6:00 three days a week. I'm a horrible liar, so it was just easier to tell them everything that was going on. When I was hired, I had (I thought) a functioning transplant, so I did not mention my kidney problems at that time.
Second, mysty, my dad worked for that same former government agency - granted, it was not his disease, and he retired over 10 years ago. However, as far as I know, they were always really good about allowing him to take time off when he needed it (like when my mom donated a kidney to me and he had my brother and the house to take care of) and although his job was subject to transfers for many years (he was upper management), they allowed him to stay in one city for many years until my health was somewhat stabilized - we lived in Richmond, VA from 1975 until 1986. Now, there were a few people he worked for and with over the years who were not so understanding, but you have those in all jobs. But if the agency did not know about my health problems, then we may have been trying to move in the middle of all my treatments on top of everything else; and my first round of dialysis was 12 years before FMLA.
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Yep.. in the lat 5-7 years there has been a major push.. sneakily is the way I see it.
Now they don't care.. its NOT the same PO i started to work in 26 years ago..
Its not a tight knit group anymore.. its gone from family oriented.. to.. the mail and only the mail
the heck with you and your family..
Really its gotten horrible..i'm glad im near the end of my road there..
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I mentioned my kidney disease during my job interview, but I guess I wasn't explicit enough, because they hired me, hehehe. However, right after I was hired, we got the greenlight for my son to donate a kidney to me. I told my employer, my local county, that I really didn't know if the transplant was actually going to happen, since we had encountered a lot of delays along the way.
I did get my transplant, though, 3 months after I started working for the county. They allowed me the two months off that my doctors requested. I was grateful that I had a job to return to, but the county singled me out to go through employment testing again-- though I had had a perfect score three months before. My first week back at work though, I started spilling protein and a couple of weeks later, I was out of a job and my transplant. As I was doing the paperwork to leave my job, I was told by one of the HR people that the county had changed it's policy and there had to be a full disclosure of illness(es) before you could be hired. A supervisor on the inside told me that I was the sole reason they were making new policy. I felt I had given enough disclosure during my interview and thereafter, as I kept everyone in the loop. I believe, though, that the county is going to use its new disclosure policy to discriminate against people with disabilities.
And, it's not just counties that behave this way-- my next job was for the state, where they tried to get rid of me because I had to switch from home hemo to in-center, and could no longer work on Saturdays. My supervisor was uncooperative at working out a permanent schedule that would leave me my dialysis dates. So, I was once again unemployed.
I don't think I'll find a job that will work around dialysis. It's entirely different if you already have a job, and a cooperative boss. But if you're hunting for a job, it is way more difficult. My dialysis time is from 1:30 until 5:30 and it's another hour commute time for the round trip. I have yet to find someone that would hire me around that schedule. (I'm sure some retail establishments or fast food places have that kind of flexibility-- but in my area, they will not hire me for those kinds of jobs-- I'm "over-qualified" and I don't speak Spanish well enough). I will probably have to resort to self-employment, for the umpteenth time, but what I really need is a regular job that will allow me to qualify for a car or house loan....and the holy grail, group life and health insurance.
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I was told by one of the HR people that the county had changed it's policy and there had to be a full disclosure of illness(es) before you could be hired. A supervisor on the inside told me that I was the sole reason they were making new policy. I felt I had given enough disclosure during my interview and thereafter, as I kept everyone in the loop. I believe, though, that the county is going to use its new disclosure policy to discriminate against people with disabilities.
Doesn't this go against the ADA, since I believe it states that you are cannot be required to disclose any illness or chronic condition as long as it does not affect your ability to perform the job?? I realize that dialysis can affect the hours that you're available, but if you can give them a schedule of your treatments and tell them that you only need to work around those hours, that falls within "reasonable accomodations". Or am I totally off-base here??
Damn, that whole situation makes me so mad, Treasure!!
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I made the mistake of telling an employer just after I was hired that I was diabetic. It was a temp job that was supposed to lead to a permanent position. after 3 months. Well, after 3 months, I still hadn't been hired and they told me that they had changed the waiting period to 6 months (all of a sudden!). Then after 6 months, I got really sick and ended up in the hospital for a day and out for a week. It was some unknown illness that no one could ever figure out what it was. A month later I came down with it again. Finally, I was told they weren't going to hire me permanently because I was always sick! WTF?! I hadn't been sick, even with a cold, for years. It was some fluke and they knew it. My supervior (who was also a good friend) told me it was realy because I was diabetic. They didn't want trouble! If only I had known it was illegal at the time. I was so naive.
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Doesn't this go against the ADA, since I believe it states that you are cannot be required to disclose any illness or chronic condition as long as it does not affect your ability to perform the job??
YES! This is an illegal practice. I think the county realized this, because a few months later they gave me all kinds of reimbursements for providing my healthcare and some other things-- there was no clear accounting for the amount of money they sent me. It seemed like mea culpa and shut up and go away money, but I was fighting to keep my transplant at that time and couldn't put out the effort to see an attorney, etc.
It should prove interesting, though, when I apply for another job with the county and the state. I will most assuredly have to work for one or the other because there are not many NGOs in my field.