Just want some experiences from you regarding your work situation. I have ET. I work normal 8 hours office sedentary job. We had some reorganisations and I kind of got more and more job duties and it slowly starts to take its toll on me. Boss knows that I have the disease but we all know nobody is taking this disease seriously. I dont want to sound like I dont want to work but sometimes I am getting lost because of fatigue and worry and stress. I think that definitely is not good situation for my illness. Any of you work half time jobs or applied for some kind of disability? How are you managing your disease and your job? Thanks
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Myers75
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I was fortunate to not experience fatigue when I was working full-time in a job that required a lot of energy and focus. I did not ever experience fatigue until I became so iron deficient from phlebotomy-induced iron deficiency. I also experience a loss in concentration at the same time. I was working part-time at the time and now ad to ability to pace my work as i wished. This made a big difference in managing the issue.
If you are in the USA this situation is covered by the ADA. It would be your prerogative to file for a Reasonable Accommodation in this situation. As a manager myself, I would work with an employee who approached my in a problem-solving fashion to address a health need in the workplace.
There are good resources for managing fatigue. The techniques suggested can help.
I was treated during 25 years with flebotomy, diagnosed in 1987. Iron was very low, but that did not bother me. I sported fairly intensively during that time, my idea was that with the physical condition of a long distance runner, I would cope with the disadvantages of the disease. I am past 70 now, and I start to have concentration problems. Gave up running, but we cycle and walk a lot.
Hi, I have ET, Jak2 positive. On HU since 2019 and aspirin since 2018. I work on 34.5 hours a week, 12.5 hour shifts on an NHS neonatal ICU . Work were more accomodating with hospital appointments when i said I had blood cancer, instead of my first saying that my bone marrow didn't work properly 🙃 Good luck
I can relate. I am 75 and still working. My job definitely requires concentration and I do sometimes feel fatigue from my Polycythemia, probably from low iron levels.
I mentioned my PV when I was offered the job, so they know about it. I feel like that gives me the option to say something if I am really not feeling up to working. But... of course they are focused on getting done what needs to be done, which means that in fact I just try to do things to break up the fatigue and keep working. Like go outside or do light exercise for a minute. It can be hard!
Hi I have ET Jak2 + and PV I had my own hairdressing business of which I had to give up the fatigue and stress of running and dealing with employees all became to much, my fatigue kicks in when I have finished work, had times when I could barely walk to the car park to get my car 🙈I now work part time my body and bloods are much better so know I done the right thing, I do miss the income but health is more important.
hi I can totally relate to this very frustrating when your a person who’s normally 100 miles per hour Lol I always say I have a on button and a off button nothing in between, as soon as I stop doesn’t matter what time of day I just end up falling asleep 🙈
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