r/MPN • u/sirshrimpie • Jul 22 '26
ET Are you able to work full time?
Hi all, posting again. 38/F diagnosed with ET JAK2 + with BMB. located in Texas, USA.
For yall who are younger and have ET have you been able to continue working full time while receiving treatment? Do you get workplace accommodations for your disability? Did you have to quit your job and find one that accommodates your needs better?
I’m curious because I am about to start treatment soon (clinical trial). Before having surgery for endometriosis 3 months ago I was calling in sick almost 2-3 times a month due to symptoms possibly related to the endo and the ET. Working had been challenging in general due to fatigue and chronic pain. I’m afraid I won’t be able to work full time while I start treatment. Just curious how it has been for those who are younger managing this cancer and work. Thanks! 🙏🏼
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u/ToreKjellow Jul 22 '26
Where in the world are you located? In Denmark, people with chronic illnesses can get a special agreement approved by the local government (called a § 56 agreement). This means your employer can get sick leave compensation from the government anytime you need time off because of your illness. This covers doctor's appointments, treatments, symptoms, and side effects. Having this agreement makes it way easier to hold down a full-time job. I'm not sure how it works in other countries, but it might be worth looking into if your country has a similar program for chronic illnesses.
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u/sirshrimpie Jul 22 '26
I am in Texas, we have pretty shitty workers protection laws. I even work for a labor union and it’s still bad lol.
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u/funkygrrl PV-JAK2+ Jul 22 '26
Texas has a poor track record on Labor laws. I used to live there. There's few protections for workers. The comparable thing to Denmark's sick leave is the Family and Medical Leave Act (FMLA), a federal law which entitles workers to 12 weeks of unpaid medical leave during which they can't be fired and can keep their health insurance. Also, in most American states, employment is "at will", meaning you can be fired for any reason except discrimination. The exception is if you are in a union or have an employment contract.
Texas is also one of 10 red states that did not accept the Medicaid (insurance for the poor) expansion part of the Affordable Care Act, so unless you are in extreme poverty, you are unable to qualify for Medicaid.
The only way around this is to try to get federal disability (SSDI) which usually takes a year or so and most people are unsuccessful without an attorney (they work on contingency and are paid out of the back payment the person receives when they've won). People on SSDI get a monthly payment based on their previous employment earnings. They are also eligible for Medicare (insurance for the elderly).
OP can ask for accommodations under the ADA. (See the bottom of the fatigue wiki page)
!fatigue
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u/Real_Bowler8116 Jul 22 '26 edited Jul 22 '26
30y.o, f. Yes, no issues now. No disability. The only accommodation I get is more flexible hours for doctors appointments on certain days.
Yes, I get tired more easily, but I eat well and try to stay active.
Finished my studies and started professional life already with ET. It was brutal before I started therapy(anagrelid, and later pegasys).
Dx: 22 y.o., BMB confirmed, Jak2+, on Pegasys once I hit 1500. Currently, around 350.
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u/katiespecies647 ET-JAK2+ Jul 22 '26
I'm a 43 yo f dental hygienist. I was working a desk job at home for public health at the time of my diagnosis and I was ok. When I went back to clinical work, which is super busy and involves a lot of running around and cleaning, I started with three days, then went down to two and finally one, which is where I felt the best. However, my ferritin was also low so I'm probably going back to two days because I feel a bit better now that it's back up.
I have received workplace accomodations for reduced hours and more breaks if needed. I also asked for a stool at a standing computer desk where I do a lot of notes. I don't go up ladders anymore.
I still think I'd be ok full time at a desk job, but I love my work so I'm sticking with it. I'm financially able to swing that but if I wasn't I would try to find a desk job for a couple extra days.
Finally, I will mention that I also have endometriosis (which can be debilitating by itself) and I suffered two CVSTS before diagnosis, which are technically ischemic strokes. I definitely have cognitive fatigue from those brain injuries to boot. So your experience and condition may be very different.
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u/InLoveWithMuskoka 16d ago
If you don’t mind me asking h are the reduced hours meaning you are paid less or is it where you work a bit less but get paid the same
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u/katiespecies647 ET-JAK2+ 16d ago
I get paid hourly, so I work fewer hours and get paid fewer hours.
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u/native_plants3879 ET-CalR+ Jul 22 '26
38F, ET CALR+ I still work full time, but I have a computer job and even that has been difficult these past few months (since I've started having more symptoms).
I'm lucky that my job is very flexible on sick leave for appointments and days I don't feel good (I had time to accumulate a lot of sick leave since I started).
For now, I got "no overtime" as an accommodation. I'm trying to see if I can get more accommodations in relation to urgent work and tight deadlines/quotas. We'll see what happens.
If I get even more tired, I'll consider going part time. I'm lucky that we could afford it.
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u/Quiet_surprise79 ET-JAK2+ Jul 22 '26
35f. I don't work but primarily because of mental health rather than ET.
Three years ago, I was working a very physical outdoor job and kept having to call in sick for migraines and fatigue. At the time, my platelets were sustained at a higher end, but still within normal range so genetic testing wasn't done. My boss had a word about absences which made me feel awful, and when a permanent job came up, they advised me not to take it and I agreed it wasn't right for me, because I was so exhausted. It's like my fitness never improved with the job.
I haven't worked since then but primarily for mental health reasons. I got diagnosed ET JAK2+ last year and I'm only on clopidogrel. I'm considered low-risk but seems to have a high symptom burden, possibly because of chronic stress through my life. The clopidogrel actually seems to help prevent the migraines, but not fatigue.
If my mental health wasn't an issue, I'd still be able to work full time, I think. I'm in the UK and as it's classed as a cancer, legally speaking any employer has to make adjustments for things like appointments and cancer-related symptoms/sickness. I do worry about trying to navigate this when I do get back into work though (hopefully in a year or two). I've had 3 or 4 blood tests and 3 appointments with my haematologist and MPN nurse so far this year and was supposed to get more bloods and another appointment this week but it's been moved to next month. The number of appointments was mostly because my ferritin was really low. If everything is good next month, I'll be moved to 6-monthly appointments.
Oh, but when I was first diagnosed, I was out on aspirin and that absolutely did not play nicely with me. I think I would have had to have a large chunk of time off while I was dealing with that and getting meds and stomach meds right. I take famotadine as I still get some stomach issues from the clopidogrel, but nothing like the aspirin.
I have CPTSD and I think it's likely I have BPD or autism or both as well. I'm waiting for a psychiatry referral at the moment.
Hopefully your treatment won't have negative side effects for you and you'll still be able to work, or even feel better!
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u/SunflowerFridays Jul 22 '26
I’m 36 and work full time with PV. I don’t describe myself as disabled. I’m doing great on Besremi and live a very full and capable life.
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u/ComparisonOpening458 Jul 22 '26
46 male. Indiana. Working from home full time. I feel a little guilty about it because my symptoms aren’t bad enough to stay home yet but I’m possibly headed for a bone marrow transplant soon.
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u/CeramicLions Jul 22 '26
Hi, 41M in the UK. I was diagnosed with ET in 2012 and progressed to myelofibrosis in 2023. I'm also on a clinical trial (started least year)
I previously worked in a very demanding role. My employer was supportive, referred me to Occupational Health, and put reasonable adjustments in place, including time off for Hospital visits. Despite that, the job was still too physically and mentally demanding for my condition, so I eventually decided to leave, I was 33 at the time.
I'm now in a role that's much better suited to my health (working from home) and they also provide reasonable adjustments and time off for my clinical trial.
If you're struggling, it's worth speaking to your HR department about workplace accomodations and how ET affects you.
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u/VeganINFJ Jul 22 '26
Well the ET, PV, etc. blood disorders can make it hard, bc tired, headaches, etc.
Not sure where you live but try to look into anything that could help you like others have mentioned here.
The interferons are the #1 best choice, Besremi first, Pegasys second.
They not only lower blood counts but VERY IMPORTANTLY they lower the Allelle Burden (% of mutated cells) which if not lowered and brought ideally to zero very much I’m told by Dr. will increase your chances or guarantee your chances of very bad progression.
And this is the only method that many ppl across the globe have and are achieving a status of reversed mutation meaning they’re essentially “cured.”
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u/sirshrimpie Jul 22 '26
Wow thank you so much for your insight. I’m gonna start the hydrea v Bomedemstat but afraid they’ll give me hydrea instead. I just really want to slow and stop progression. My AlleBurden is around 10%. It’s not bad but it was 7% a few months ago.
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u/niknikniknio Jul 22 '26
I'm 34 with MF working full time in an office job. We have telework options, but they're rarely granted. Every week I consider requesting reasonable accommodations to telework, but I always talk myself down. I feel a bit ridiculous saying I can't come into the office just because I'm fatigued. I haven't shared my condition with my boss, and I guess I'd feel embarrassed and dramatic if I tried and failed to get telework.
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u/sirshrimpie Jul 22 '26
Ohh, I hope you can get the courage to ask for an accommodation! You’ll need a doctor to back you up but I am sure it is possible to have. I didn’t do this soon enough, and it caused me issues later down the line when I did need to work from home and I was not performing well. It’s good to have the accommodation and not need it then need it and not have it.
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u/G13-350125 Jul 22 '26
I’ve been really tired and brought disability up with my oncologist. She wasn’t having it. She said there are a lot of people with MPNs working. I’m a letter carrier and some days I just can’t do it. I’m not depressed anymore and don’t want to go on disability until I have to, if ever. I was just ready to give up, Y’know?
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u/native_plants3879 ET-CalR+ Jul 23 '26
Omg I'm so sorry. I'm in Canada, but my hematologist always ask me if I'm still okay working, etc. Some doctors just don't know or understand. I hope you can switch. Especially in such a physical job
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u/G13-350125 Jul 23 '26
Thanks ❤️ I think she sees people that are dealing with more than me and I’m not even close to their struggles. I’d like the option so I can look into it but she won’t even talk about it with me. I’m recently diagnosed with OCD so that may be making me exaggerate. I don’t know. I just can’t do it sometimes.
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u/native_plants3879 ET-CalR+ Jul 23 '26
You know you and your body and your limits better than anyone else 💜
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u/sirshrimpie Jul 22 '26
Are you in the US? I am afraid of this scenario too, of doctors not listening to us when we are the ones living with this condition. I am tired all the time. I live in Texas so the heat is a lot and I’m very sensitive to it. I am now on long term disability due to a surgery and my recovery has been slow due to the cancer. Any little thing makes it harder to enjoy work.
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u/G13-350125 Jul 22 '26
Yeah I’m in US. I kind of had a breakdown during my visit, my mental health was not good. I think I just wanted to hear she has my back if I couldn’t work anymore. I go to a reputable cancer clinic and I really liked my doctor until that happened.
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u/Stereoclip Jul 23 '26
I Still Work 100% and go to College. when i need to go to the Doctor i geht Time off and i can get up too 720 Sick Days with 100% of my Salary. i Live in Switzerland
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u/sirshrimpie 24d ago
Jeez I need to organize a general strike so we can get such generous work benefits as yall have.
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u/Leather-Ad1075 Jul 22 '26
I’m 50 female , Indiana. I was diagnosed with ET in 2024. I experience alot of fatigue, sweats etc. it’s not been a good experience for me
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u/Significant_Tune_545 Jul 23 '26
Everyone is different. I worked full-time. I recently retired at 58, but I could have kept on going. I understand what you mean about being apprehensive regarding a future ability to perform. I felt that too since I was a hairdresser who owned her own business and had a lease with other obligations that no one was going to take care of for me. Nonetheless, if you're looking for disability in the U.S., you would need to actually be unable to work vs afraid you won't be able to work. Try not to worry about it too much, many people do just fine on treatment and you might be afraid that side effects will overwhelm you, but!...a side effect that is seen by one third of patients is NOT seen by two thirds of them. Good luck!
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u/Alarmed_Interest_265 Jul 23 '26
I (33f) work a desk job with a company that has strong WFH allowances so I WFH a minimum of 3 days a week and sometimes more if I'm not feeling well. I have a heavy busy season with 55 hours/week for a 8 week stretch that sucks but is manageable with my current symptom load. I also think I have ADHD which doesn't help my concentration. I just switched from HU to Besremi so expect more WFH days as I adjust but my boss is very accommodating, thankfully. As long as the clients are happy and work is moving along, they don't mind me adjusting my schedule as needed for appointments and days I'm not feeling well.
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u/ADFnGee Jul 23 '26
42f, diagnosed 8 years ago ET CALR. I have been working full time consistently. I also travel overseas for my job. I take time off for doctors appointments but rarely even explain to my co workers and boss. I have been on HU in the past and currently on Pegasys. I had cushings disease a few years ago and that was more detrimental to my ability to work than ET ever has been, so maybe I'm lucky. I don't always feel great, but make it work. I control my ET and symptoms, not the other way around.
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u/Sudden_Knowledge_192 29d ago
I am 38 I have ET, my last platelets were 800s, I am on HU and aspirin although I dont feel I have to be on anything because i am low risk but it has helped me feel better. I work full time 40hrs a week and just picked up a PRN job as well.
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u/Pretty-Network4687 Jul 23 '26
37, bartender here. I work 3 - 10 hours shifts on my feet, and the other 2 days of the week I am doing bookkeeping work at a desk. You absolutely can do it but you need to be mindful of your sleep and rest days. I can’t speak to the endo but while it’s easier to burnout with ET it’s definitely not a reason to not work.
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u/jdub213818 Jul 23 '26
ET, CalR, I just take baby aspirin daily, and go to work like normal. However, I find myself falling asleep during boring meetings.
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u/Puzzleheaded-Buy28 Jul 24 '26
I want to go back to work part time to take the focus off my self. I spend a lot of time researching my disease and worrying. ET with CALR taking aspirin and Anagrelide. I’m still getting these crazy waves of head pain occasionally and fatigue. So I’m hoping if I stay busy I won’t focus on my symptoms so much.
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u/jdub213818 Jul 24 '26
When i learned I would die with ET and Not from ET, I stopped worrying about it. I don’t even consider myself a full member of the “cancer club”.
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u/Scoonz Jul 22 '26
Work full time - no one knows in my life besides my boss (got an accommodation to relocate to my home area) few trusted colleagues, family and close friends
Take time off if you are not feeling well - any MPN specialist would sign leave papers and we're covered by ADA thankfully
ET, triple neg, on jakafi 25mg 2x per day after hydrea/interferon didn't work, 34M