I am living in US & a newbie to CLL (diagnosed 11/03/2022) and still sorting things out. I'm stage 0, watch and wait. My main symptom is fatigue, which started 11/2021. I'm 55 yo and planning to work until retirement age.
In these docs, it is clearly stated the the workplace must approve ADA accomodation requests unless doing so would place a real hardship on the workplace, for example if the workplace would have a really difficult time functioning by granting you the request, or if it would be expensive to grant the request.
Here are my planned requests. Both would be due to CLL fatigue.
1. To work remotely on Tuesdays. For 15 years, I've only done 'paperwork' on Tuesdays and have no external meetings or meetings with students. (I run programs at a college). We are all set up now with online meetings, and its typical to 'send a link' to someone who can't physically attend the meeting.
2. Two weeks of the year I am scheduled to work 7 days in a row. My request: For the two weeks per year when I am scheduled to work 6 or 7 days in a row, to not be on campus for more than 8 hours per scheduled day.
Has anyone requested and had workplace accomodations for CLL approved or denied? Have you thought of asking for accomodations but not done so yet?
I'm 54, similar to you. I teach at a local college. I've been getting accommodations (teaching online, from home, all classes) since the college opened back up "after" the pandemic.
They've given me no problem. In fact, they're quite sympathetic. (The word "cancer" tends to have that effect on people.) I do get my oncologist to fill out the paperwork every semester, of course. My understanding is that the college would be unwise to reject such a request, as they don't want to put employees in jeopardy (ie., they don't want to get sued).
It might also help that I've had my antibodies measured: the number zero tends to get people's attention, I suppose.
I dunno. Every employer is different, of course. I wish you the best of luck in this regard, and in other regards too.
I filed intermittent FMLA when I was in management and they accommodated my request to attend (large gathering) meetings by phone. It was during COVID in 2020. It was approved but I felt it put me at a disadvantage. Not too long after we were all sent home to work however. The head of HR was kind and did tell me I can request any accommodation and it’s up to them whether they approve. For other reasons associated with CLL and workload I no longer work there. I agree with Dave. It depends on the employer. Best to you.
I’m not certain how ADA requests are evaluated but I will say that your requests certainly seem reasonable. Thus, I’d be surprised if what you are seeking is denied.
TriageCancer.org is a great organization for info on working through and after cancer, Disability, ADA, MediCare, FMLA, etc... run by two lawyers who have personal connections to cancer. Also Cancer + Careers is another organization with lots of good info and free seminars and materials. I am using ADA to continue to work from home while employer is trying to force people back into the office. I requested Reasonable Accommodations (to continue to work remotely - the thing we have been doing successfully for 35+ months of the pandemic - the technology is all in place - just let me continue). They asked for a letter from my oncologist which I have provided and no one in HR has said anything more to me. Best of luck to you!
You may find that the CLL Society resource on the topic of workplace accommodations, which has been written with the risk of COVID-19 in mind, is helpful, too:
54 (in April) and in Alabama. No issues with work. Been with the same company since 1990. Like others have said, they tend to be very sympathetic. Now, if you were a terrible employee, it might be different. Lol.
In all seriousness, it’s not a good look for them to be inflexible with your needs. And, what you want is not excessive in any way.
I have a similar situation. Thankfully, my accommodation was granted and continues.
The first time I asked for an accommodation, about a year ago when masking was made optional, I had to go through an interview with the head of HR and now I have to request an accommodation every semester with a letter from my oncologist which is ridiculous as my condition is chronic and COVID is not going away, only mutating and becoming less deadly. I work on campus the quietest day of the week which seems reasonable as well as occasionally other days when we are required to attend in-person meetings. I have not taught in person yet and dread it partly because my hearing is not great and the thought of being in a smallish classroom with 20 unmasked students gives me the heebie-jeebies. Lastly, JAN (Job Accommodations Network) askjan.org/ is a great resource. Call them (they have a hotline and it's easy to get an expert to help you) and also research your university or college's ADA guidelines.
I, too, work at a University. I was diagnosed 2/2020 and received permission to work from home right before campus closed and everyone was sent home. As people merged back to the office last summer, I was still working from home, but only until January of 2023. I was told I had to return to the office or I would have to find another position (5% of my job is staffing conferences and they would not remove that from my job description - too much of a hardship for the department). So it really does matter who your supervisor is.
I elected not to inform work while in early stage. Many patients have lengthy times to treatment or never need treatment, and I did not feel I had enough disability to need to adjust my work schedule. My oncologist agreed with this decision: "they'll marginalize you the minute you tell them". Despite having a high-travel job, I continued to work while wearing masks and minimizing travel where feasible.
This eventually became untenable, as the disease progressed and counts and symptoms started getting worse. I felt this was affecting my work, and I had a ALC count spike that pushed me to find this forum and post that post I linked above.
After researching the ADA, I decided to inform my employer and also request accommodation. There was a fair amount of discussion and some paperwork, but ultimately I filed for a full work-from-home accommodation for the duration of treatment. So far that has been accepted, although I need to renew every six months (at my oncologist's request, not my employer's).
I was then moved into a new role that better fit my inability to travel or do face-to-face work. That has been challenging mentally to step back, as it is, by design, less responsibility than I had previously. But as my treatment progresses and side effects pile up a bit, I have to say I am very thankful I am not on the road. And to be fair, I could not do my old role while staying home.
Things I think helped lead me to a successful resolution on this:
1) Don't cry wolf. The more you can work "as usual", the better off you may be in the end. You show dedication to the job, and your issues tend to be taken more seriously if you have attempted to resolve on your own first.
2) Be reasonable and fair in accommodation. I didn't feel I needed to stop work completely, and was clear that I could contribute, but that I had limitations on travel, location, and consistent work schedule (some days fatigue is an issue, and there's treatment schedules to consider). But I also have limited my personal interactions outside of work and cancelled my personal vacations, and made sure it was clear to my employer I was doing so.
3) Be clear about the risks on your health. I pointed out that my mortality risk from COVID was equivalent to an 85 year old's and that multiple colleagues have gotten COVID in our workplace. I point out that CLL progression has been more rapid than average in my case. I'm clear that my long-term prognosis is positive, but that I have a rough road ahead on treatments.
4) If possible, wait until you are in the pre-treatment run-up as opposed to Watch and Wait. Watch and Wait looks like an indefinite road. Treatment has a defined process and end-date. Claims reviewers tend to understand "immunotherapy regimen" a lot more than "monitor the disease indefinitely".
I work at a large corporation with a mature HR department, which helped mediate the discussion and make appropriate decisions for my firm. I think this would be a higher-risk move at smaller firms.
That having been said, the ADA protections are pretty strong, as verified by the multiple legal and HR contacts I consulted with. My experience has been that firms are well aware that financial consequences tend to result in terrible PR ("They demoted the cancer patient") and litigation that they stand a high chance of losing. The issue is more what will this do to your career long-term and can you deal, emotionally and potentially financially, with the inevitable marginalization that results.
One of my concerns matches your oncologist's statement, ""they'll marginalize you the minute you tell them".
Although my job is lovely and fulfilling, members of the higher adminstration are quite toxic. I've been here 20 years and I manage this by flying under the radar as I don't have an elevated position and I don't make a lot of money. But I don't trust the VP of my division- he's a piece of work who has always treated me poorly despite my receiving nothing but stellar reviews and in general, knocking it out of the park performance-wise. Additionally I am in touch with several hundred alumnae and so have a little power in that regard.
If I make these requests for accomodations, the HR Director would need to consult with this VP. I am very concerned that the VP will immediately try to marginalize me after hearing i have CLL.
I make enough money to pay my bills, I love my job, and the benefits are excellent. Plus I now have 6 weeks paid vacation time each year! Other context: I live in a rural area, there are few jobs here, and due to a back injury I cannot commute outside of the area.
I am really wiped out by the CLL fatigue. I am tired when I wake up each morning after sleeping for 9-10 hours. I feel as if the accomdations I mentioned are necessary for my continued ability to work, however I am concerned that I will be marginalized if I request it.
1) marginalize "we may stick you in a side job for awhile until you recover",
2) marginalize "we'll move you to the mailroom", and
3) marginalize "we'll make your job so difficult you will quit" or just fire you.
My experience has been that a decent HR department tends to keep 3) off the table as long as you approach the conversation with knowledge of your options.
1) and 2) it's hard to figure out which is which. My approach has been generally been to not fret about those too much. I don't control outcomes, I can't predict my eventual course of treatment or progression, and even if I think I know where things stand now, a lot can change in a year.
The two pieces of advice I got that might help:
a) "Write everything down". If things go poorly, you will want to have good notes, copies of all written email and correspondence, etc.. Most employment lawyers are enthusiastic about "suing your former employer who fired you for having cancer" cases.
b) "What do we say to death? Not today". Just live to fight another day and see where things end up down the line.
I'm in watch and wait since 2005. Before I retired, and before COVID, I worked for a company that was scheduling me for 12 hour days even though my shifts were supposed to be 8 hours. I was exhausted. I asked my oncologist if that was bad for me and she offered to write me a letter on the spot. The company I worked for was very vigilant about following laws and I was never scheduled for a long day after that letter. I was about 56 years old at the time. Your requests sound reasonable to me. If you were to back it up with a letter from your oncologist I don't see how they can say no. Good luck. Wishing you well.
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