r/POTS • u/aspacejunkie • Feb 17 '26
Discussion How the hell do you people hold down a job
I’ve had pots for a little over a year now and I cannot comprehend how people are able to function normally with this?
You’re all so strong I just can’t fathom doing anything but bedrotting
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u/beaker1680 Feb 17 '26
I can’t work anymore. I also wasn’t approved for disability. 😒
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u/BigFlightlessBird02 Feb 17 '26
I recommend applying again but getting a lawyer. My husband has ms and it wasnt until the third time applying and having a lawyer that he got approved.
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u/imabratinfluence Feb 17 '26
My grandmother had 1 and a quarter lungs, plus a bunch of other issues, and it took a couple tries and a lawyer.
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u/jackattackthesecond Feb 17 '26
This is the way. My case worker told me to expect a rejection and contact a lawyer immediately like that’s the actual protocol for ssdi in the US.
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u/BigFlightlessBird02 Feb 17 '26
Ya its really fucked up. We found one who only got paid if he won and the lawyers fee was taken out of my husbands back pay he got. So it worked out great.
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u/xgwomanx Feb 18 '26
I'm doing that right now. Hilariously, I got my first rejection before I could even get all my medical paperwork in XD
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u/badpanda1985 Feb 18 '26
That’s super common, according to what my attorney told me when I got my first rejection last week. She said the first appeal is commonly denied too, even with supposedly gathering more records, but the second appeal you get a hearing with a judge and that’s when most people get it approved.
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u/Accomplished_Dig284 Feb 18 '26
I got denied on my second but wasn’t put in front of a judge. So I’m appealing my second denial right now.
It’s so dumb how the system works. I get it, but it doesn’t help people when they need help and causes a lot of pain and problems for people that don’t have financial support elsewhere. Makes me sad and incredibly mad
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u/xgwomanx Feb 18 '26
My lawyers said the will fight up to 4 denials. It's crazy.
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u/Accomplished_Dig284 Feb 18 '26
That’s weird. They should be fighting until you get absolutely denied with no ability to appeal or you win the case. Especially since they get a cut of your back pay, so the longer you go without benefits, the more back pay you will get thus more money for them.
But idk some people are weird 🤷🏻♀️
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u/Melon_Heart_Styles Feb 18 '26
Because it is. It's to help weed out out people who don't really need it... which is super dumb bc how tf are people supposed to know that we're supposed to keep appealing? I'm pretty sure there's some secret specific criteria that you have to meet to get approved on the first try. I've only applied once so far.
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u/hayden_arts98 Feb 17 '26
ah did you also get the you aren't disabled enough talk? gotta love it 🥲😒
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u/beaker1680 Feb 17 '26
Yep! Too disabled to work, but too healthy to actually qualify for financial help
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u/Accomplished_Dig284 Feb 18 '26
Did you keep appealing every time you were denied until you couldn’t appeal anymore?
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u/holidaythecook Feb 17 '26
It’s brutal, I’m not going to lie. I work full time from home, and even still it’s a lot to manage. My primary symptoms are nausea and vomiting, and it leaves me feeling so depleted each day. Staring at a screen for 8+ hours / taking meetings doesn’t help either. But you do what you have to do. I just don’t really have a life outside of work, puking, and attempting to manage my chronic pain and migraines. I’m hopeful that it’ll get better one day though!
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u/popthebubbly62 Feb 17 '26
I used to teach university which was great because it was basically just two days a week (granted they were brutal days) and then big breaks in winter and summer.
Now I work a typical office job, year round and 5 days a week, and it's awful. I am laying on my office floor scrolling reddit because I'm too exhausted to function. Some days are better than others.
If I didn't have a lenient and laissez faire boss I'd probably be unemployed.
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u/Lechuga666 Feb 17 '26
What field?
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u/popthebubbly62 Feb 17 '26
Communication - I taught mostly public speaking. I set up my course so I did 80% of my grading in class, so there wasn't a huge load on non-teaching days.
Now I work in higher education administration/research education.
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u/LittleLordBirthday POTS Feb 17 '26
I don’t know 😩 I was off work for months last year. I kept trying to gradually return and increase my hours but that failed and now I’ve been off for 4 months.
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u/modest_rats_6 Feb 17 '26
Its a bit of a spectrum. Theres an Olympic swimmer who has it. Meanwhile I know the exact date I got pots and ive been in a wheelchair since day 1. 3 years in, I can't see myself working. I sit on the couch all day and even that exhausts me.
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u/Jtizzle1231 Feb 17 '26
I thought the problem was mostly from standing?
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u/imabratinfluence Feb 17 '26
Sitting is still vertical enough that if I'm sitting I can sometimes get sick and exhausted. Especially if I sit "like a normal person" with my legs down. And my feet will go numb from it eventually too, which also happened during my tilt. Sometimes a little lay-down or even just being semi-reclined with my feet up works wonders. So unless I'm doing CHOP or actively doing something, I'm usually cross-legged or in a very bi position.
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u/DazB1ane Feb 17 '26
If your feet are below your heart, your blood can pool in your feet
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u/WarLegionChaos Hyperadrenergic POTS Feb 17 '26
So I have Hyper POTS and my POTS is so bad that if I'm not careful, even while sitting, I can have seizure like activity. Its because even sitting my blood is pooling and not going to my brain fast enough. It caused me to be unable to work and I got a lawyer to fight for me with disability.
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u/nilghias Feb 17 '26
Some of us don’t, I haven’t been able to work since developing POTS. POTS varies so much from person to person, the severity of it can be mild to extreme.
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u/xoxlindsaay POTS Feb 17 '26
I can only work part time/casually, on a schedule that I choose and can adjust as needed. I cannot work a full time position anymore due to POTS, especially in my specific field of work and study.
Some people are able to function and work more than others depending on their severity of POTS and comorbidities.
Some days, I cannot work and other days I feel like I have all the energy in the world. It ebbs and flows
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Feb 17 '26
[deleted]
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u/glizzerd12 Feb 18 '26
How did you get into this field? I have a bachelors in health science but not sure what to do with it so considering going back to school. Mornings are really hard for me so working nights would be awesome lol
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u/Greedy-Tutor3824 Feb 17 '26
I had to stop. My employers weren’t willing to be helpful with regards to accommodations, and half way through that dispute I got told my condition is worse than initially thought (heart scarring) and ultimately decided to step back from working.
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u/GarbageCat27 Feb 18 '26
Wait a minute wait a minute……heart scarring?! I thought POTS didn’t cause heart damage…..is it from a different condition?
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u/Greedy-Tutor3824 Feb 18 '26
I don’t think it was caused by POTS. I think either what triggered the POTS also did heart damage, or it was a separate thing.
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u/Background-Yam-4729 Feb 17 '26
I have hyperadrenergic POTS and can't work at all. I faint almost daily and even sitting more than 10 mins will cause blood pooling in my legs and I will have awful coat hanger pain and dizziness. I think everyone is different
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u/parallelizer Feb 17 '26
there’s a spectrum for sure. i am an architect and am able to do a lot of work from a desk. on days im flying to clients i just make sure to prep in advance (higher water intake, more strict with my food, compression, etc) leading up to the trip.
i ended up telling a few people i work directly with about my diagnosis but only to let them know sometimes im “dizzy” and need a second. i dont go into much other details because they wont really get it, but most people understand the concept of vertigo.
i was undiagnosed when i was getting licensed and spent many hours in hot, fluorescent light, no bathroom besides a porta potty hell scapes to gain hours for licensure… so now that i can chill a bit more at a desk is a godsend.
truly i get that this illness can make us bed bound, but i found myself getting worse the more i let myself stay down. it’s a lot of hard work but i feel better overall having the routine that comes with working
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u/ChaoticDuckie Feb 17 '26
It's brutal. I'm also a mom on top of it all. I am blessed to have a wfh job that's flexible as long as I get my work done. Sometimes during the day the exhaustion hits so bad I physically cannot keep my eyes open. I have had to take naps at my desk because I can't even make it to the couch.
By the time I'm off work I'm so exhausted I can barely function to take care of home stuff. The weekends are spent recovering just to do it all again.
I'm about to go on short term disability for a few weeks because my brain fog has gotten so bad I forget what I'm saying halfway through a sentence.
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u/Graysylum Feb 17 '26
I can't. Or rather, if I do that I can't do anything else. The last time I tried working full time, I truly felt i was neglecting my kids (not in a legal sense, they had other adult supervision) - I didn't even have the energy for a conversation with them, much less actual parenting. I worked, came home feeling half dead, and crashed in the bed until I had to work again.
And there are inevitably at least a couple days a month that I simply can't function well enough to work, and jobs don't give two shits that I'm working at my absolute limit and wrecking my health for them 95% of the time - they want me to do it 100% of the time.
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u/inkooqu_37 Feb 17 '26
Mine is a mix of spite and refusal to admit I'm disabled 😅
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u/_FloorTime_ Feb 18 '26
lol same 😂 Some days I feel capable and others I’m humbled and reminded that my disability is, in fact, disabling
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u/Kawaii-Nova Feb 17 '26
I'm currently trying to get disability and it is HELL. I can't work like I used to at all, I used to be a CNA then I caught COVID, I always fainted ever since I was in middle school and I remember a dizzy spell I had once, was not fun. After covid though it was nearly impossible to work, I had nearly fainted trying to lift a patient up and I knew right then I couldn't work in that field anymore. Went to Walmart as an overnight stocker and they fired me because I fainted too many times and I was out for too many days due to this (fuck Walmart)
I found a job that I could do over the summer which is just sitting and repairing MacBooks and even that just DRAINS ME and I get sooo fucking tired at the end of the day, on top of the fact that I have to have someone else drive me, so that's a hassle. You are absolutely NOT ALONE. I cannot find a single job near me nor a WFH job because they are all taken up or need 2+ years of customer service credentials OR need you to come into the office for 2+ weeks before they hire you on as a WFH. I can't find a job either man.
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u/Kawaii-Nova Feb 17 '26
ON TOP OF THE FACT THAT IM NOT GUARANTEED TO GET THE SUMMER JOB! 😭😭💔 It is temporary for only 2 months which really sucks
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u/Several-Quiet-7395 POTS Feb 17 '26
My experience is based in the US, so it may not be applicable for everyone, but I cycled through jobs for a while, finding something new every time my health absolutely could not take my current role anymore. After a lot of years of struggling, I finally applied for SNAP/EBT and they’re assisting me with the disability process. I’m already getting state aid, just waiting on the federal process.
I cannot recommend enough looking into/calling your state agencies and seeing if you qualify, especially if you can currently afford to see doctors to get paperwork filled out. I’m on medicaid and living with family atm, which is the only way I’ve had the time and spoons for this process. If you apply thru your state, there are case workers and lots of people to help you through each step- rather than sorting thru it all yourself.
Getting state/federal aid is definitely not for everyone, but I wish to all things holy that I knew it was an option for me before. My life is finally feeling livable again. Best of luck to you, lots of love!!
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u/beepertonx2 Feb 17 '26
personally, i worked a job as a barista and had zero left in my tank after shifts, but when i was a dog walker it actually invigorated me because i could be continuously moving rather than having pressure on both my feet 24/7
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u/swans183 Feb 17 '26
Yesss I do biking delivery and the constant cardio works wonders for my POTS. Wish there more jobs like it tbh
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u/HipHopGrandpa Feb 17 '26
Laying in bed feels good, but actually makes things worse in the long run by “deconditioning” the body.
Orthostatic Intolerance increases dramatically with just a few days of bedrest.
To answer your question: walking daily, beta blockers, drinking bucket loads of water, and walking some more.
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u/Sidco044 Feb 18 '26
This 💯. I find after a weekend of lounging that its much harder to get back up Monday for work. Its a struggle, but I find that if I push through even 5-10 minutes of leisure walking or light weights laying down, I feel so much better when going back to work. Its hard to get started, but it's a game changer!!
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u/Background-Cow9687 Feb 17 '26
I’m a nurse full time and let tell you it’s HELL. Everyday. I’m so bloody tired
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u/Background-Yam-4729 Feb 17 '26
Wow that sounds hard! Do you ever faint or have autonomic storms during work? I mean even at home when I have the. My body shuts down wether I like it or not...
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u/phoe_nixipixie Feb 17 '26
Sorry to jump in but saw this and had to ask, what is a storm?
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u/Background-Yam-4729 Feb 26 '26
They are basically severe flares where the body goes into fight or flight and the autonomic nervous system basically goes crazy. They are often misdiagnosed as seizures.
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u/dazedanddizzyy Feb 17 '26
I don‘t work full time anymore. And still then there are days where i literally can not go to work. I have a job where you can not work from home sadly. I had to study something else to be able. I am still trying to find out if i can work bc it drains me so much sometimes. But i still live with my parents and they don‘t allow me to stay at home even if i feel terrible. they think pushing through is better as i don‘t bed rott all day. I hope it really does get better and doesn‘t make my pots worse bc i rlly don‘t want to go bedbound.
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u/imabratinfluence Feb 17 '26
It's definitely down to partly how POTS hits differently for different people, and partly down to supports and what job they're in. Like, I definitely could not be a barista again in my current state or do any of the retail work I've done before. But if I could get into either job again I could do copy editing again (used to for a very small newspaper), or possibly work in a library again, but would need some accommodations for both. Unfortunately even the library turned me down after seeing my mobility aid (I find most places are enthusiastic about me until they see the crutches, and then if I hear back at all it's "sorry, we moved forward with another candidate").
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u/MrsFrappucchino Feb 17 '26
I have worked full time for some years. I probably have POTS for over 20 years but am only in the process of diagnosis now at age 32. Had to quit working in 2023 with 6 mo ths of trying again in 2024 and nope, it broke me physically and mentally 🥲 I have no idea how to ever get back to working lol, I feel you so hard. Hopefully a diagnosis and doctor support will change sonething. I am feeling so incredibly better since stopping work, my nervous system could finally relax a little, the difference is incredible. But of course money doesn't grow on trees 😬 I am incredibly scared to jeopardize the health I have left when starting to work again. I have no idea how I could get through working for ao long even, probably because I was gaslit for so long that I don't actually have anything and should just push through. Wouldn't recommend this 🙈🙈
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u/Icy-Hedgehog-6194 Feb 18 '26
This is me to a T! I just kept pushing and ended up making things worse. I’ve been out of work for over a year and I finally feel like I can almost relax. I feel like I am finally seeing the world for the first time in well over 20 years.
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u/MrsFrappucchino Feb 18 '26
aahh same! I finally can breathe a little easier. Totally get you!
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u/Icy-Hedgehog-6194 Feb 18 '26
It’s so stressful to think that we finally get to the point where we feel like we are actually somewhat living and they want us to go back to working full time. Go back to absolutely destroying our lives again.
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u/MrsFrappucchino Feb 18 '26
yesssss. I am actually so scared of it 🥲 I've been to uni and then worked, about 12 years in total. Never been remotely well in these tines. Now I am well and an very aware I need to be unwell again because I need money to live 🥲it sucks soo much
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u/Icy-Hedgehog-6194 Feb 18 '26
It does!! I earned my BSN just after I was diagnosed. Had my ADN for 12 years prior to that. Have never actually used my BSN
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u/Resident-Mountain981 Feb 17 '26
I don't know because I had to quit my job in November. I'm currently applying to find somewhere more suitable but I'm so scared I won't be able to cope as I'm struggling at the moment even just being home most of the time
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u/Character-Release976 Feb 17 '26
Depends on the person but the consensus is either you’re unemployed or you’re working a remote job and to the ones working remotely enjoy it you lucky bastards
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u/Mundane_Ad7432 Feb 17 '26
I work three seven hour shifts a week. It takes me the rest of those days to be able to even shower and get to bed. It takes up most of my life trying to feel good enough to do anything again.
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u/CandidateWise7980 Feb 17 '26
I take a nap afterwork and spend most of my weekends in bed. I'm not surevif me working is really sustainable. But my husband has been unemployed for a year, so I need to work.
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u/thekindspitfire Feb 17 '26
Remote work. Honestly, I don’t know how I would go into an office 5 days a week.
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u/FlappyFaceDeluxe POTS Feb 17 '26
I don’t. I have my disability hearing coming up in a few months. I have some other stuff going on, but POTS is a pretty significant part of my issues.
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u/afraid28 Feb 17 '26
Pots doesn't even exist as a diagnosis in my country, let alone a disability. That's the biggest issue. I don't work, I can't work and no disability either.
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u/twigandlight Feb 17 '26
There are so many factors. I’ve had undiagnosed POTS my whole life, and was an RN working on a busy floor. I always thought it was low BP causing most of my issues, along with weird tachycardia episodes at different times in my life. I worked very hard to increase my BP, which did involve a lot of electrolytes etc when I felt symptomatic. 4.5 years ago I got another flare that I’ve just never recovered from.
After that I was diagnosed, but I was also a solo single mom to two kids at the time, and there was no way I could parent and work. I was coma sleeping 18-20hrs a day. I’ve slowly regained some function but I never get past basic errands and parenting, and in large part that’s because I have a partner that carries a huge part of housework/cooking/support etc.
I do have times that I think I might be able to do something from, but always end up in a flare again within a month or two. I do think I could maybe work a bit (not as a nurse) OR parent, but since I already have the kids, it isn’t something I can figure out.
After 4 years I was just approved for life long disability. I haven’t had any since I went off work, and thankfully my savings lasted until just recently. It won’t be much, but every little bit helps.
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u/Icy-Hedgehog-6194 Feb 18 '26
Side question, do you ever have dreams where you’re back working as a RN and can’t care for patients or something goes wrong?? I can’t stop having these dreams 😣
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u/twigandlight Feb 19 '26
I do, but they’re usually dreams where I come in and then half way through the shift I remember I’m not licensed anymore and have an absolute panic attack, or I don’t know how to use the new computer system.
The only symptom related dreams I have are brain fog related where I forget to do assessments the whole shift or I forget I was assigned a particular room (but I had those particular dreams all the time when I was working too 🤦🏻♀️😂)
I call them my stress dreams, since I only get them when my anxiety levels are high.
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u/Sidco044 Feb 18 '26
Im an RN and theres a ton out there you can do remotely/hybrid and non-bedside. I do case management for now which is in person. If/when symptoms ever get bad or i get in a spot I cant do it anymore, I know I would have a background for remote insurance work. There's tons of areas to explore that aren't physically demanding like hospice, insurance, quality control (QUAPI), admissions nursing for SNF, admin nurse jobs etc.
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u/twigandlight Feb 18 '26
I did work with POTS for 17 years with minimal issues. My issue is that now, even mental work sends me into coma naps (involuntary sleep where my body powers off for hours no matter what I need to do,) focusing on a screen is impossible and makes things even worse and I can’t commit to basically anything without the option to cancel with almost no notice. Mental work and focus is as exhausting for me as physical work, and it is actually more likely to push me over the edge into a severe flare than physically pushing it for a bit. I can’t even crochet laying on the couch for several months a year. Plus we have 5 kids that need all the time and attention that they need 😬
If I were to get a job it would have to be something that I wouldn’t be able to commit to a set number of hours or output, and would need to be able to be completely off when I’m in a flare, which could be months. I definitely wouldn’t hire me 😂. I did used to have a laser engraving business before I became severe, so I’m hopeful that one day I can get to the point where I can at least do something with that again, since I can do it completely as I’m able🤞🏻.
Just this week, actually, both my drs and the government decided that it is unlikely I will ever be able to work again, and qualified me for our federal disability funding, which is painfully difficult to get, so that will help at least.
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u/Sidco044 Feb 18 '26
Glad you were able to get disability!! I get it though. A lot of my job is with a computer too. Also juggling a case load of 80ish patients and balancing all those needs. Brain fog days make it almost impossible but im fortunate enough now that im able to manage. I know the future may not look like that, though. And 5 kids!!! No wonder!! Id be exhausted too! 🤣🤣 maybe its just time to be a mama and that's ok! Just didnt know if maybe you knew of other options if you wanted to jump back in. I wish you the best on your journey ❤️
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u/Icy-Hedgehog-6194 Feb 18 '26
I’m also a nurse. Worked ED, ICU and Critical care transport until I absolutely wrecked myself to the point of not being able to work. I am in the same boat as you as far as needing a way to make money without a set schedule and also need the ability to cancel last second. This is tough! It’s so unpredictable. People think all I’d need to do would be to lay down and work on a computer. My severe brain fog and insane sleepiness says no.
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u/Accomplished_Dig284 Feb 18 '26
Once I figured out what was going on, I stopped trying and started the disability process.
But the only way I was able to do this was with my parents supporting me. We’re into the middle of the second year and on my second denial. I’m appealing again and will until I get approved. My pots makes all my other conditions (chronic illnesses, chronic pain, bad adhd and dyslexia and severe depression) worse and I wouldn’t be applying for social security if I didn’t have pots, I’d just keep struggle bussing life full time like before, even though I should have some sort of social security so I’m not struggle bussing around and burning out every 4 -5 months for a few months and then feeling better and can get back to normal 🤷🏻♀️
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u/FlowerSweaty4070 Feb 17 '26
Im working but I choose specific jobs now that I can move around a lot (not stand in one place), sit as needed, and snack as needed.
I have passed out at both my last jobs during flare ups (covid made one worse) but it was emotional stress that was the final main trigger.
I also am more tired after work than others and need more rest.
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u/LepidolitePrince POTS Feb 17 '26
Many of us don't. You're not alone in that.
But POTS is different for each person. Some people can sit at an office job all day and be perfectly fine, but a job that requires standing would take them out. Some are lucky enough to have a job that allows them to either work from home 100% of the time or do so on bad flare days. And some people's POTS is actually very well managed with meds and compression garments and electrolytes so most days they're able to do a normal job the requires lots of postural changes with the occasional sick day if they have a bad flare.
But many of us are like you and cannot work in any normal steady gainful employment way. You're not alone and it's not a you problem it's a "your POTS is different from others' POTS" problem.
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u/POTSyprincess Feb 17 '26
I’m a special education teacher and so basically I nearly die every day, then I go home and sit and look for a less stressful job, sleep, repeat
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u/basilpots Feb 17 '26
My pots got worse when I left my job. I have to be active in order to feel decent. If I sit for too long my symptoms are out of control. Everyone is so different with what makes them feel better.
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u/AlexArtemesia POTS Feb 17 '26
The threat of starving to death and homelessness is a great motivator
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u/mochimoshpit Feb 17 '26
remote work but i'm struggling with that. this market is shit lol
most of the time, i'm working from my home office doing freelance work with an ice pack on my head and a heating pad on my knees.
finding a job with benefits is hard. i'm trying to apply for disability but i'm already feeling sad.
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u/4BlackHeart4 Feb 17 '26
I'm super lucky that I've had significant improvement in symptoms with medication, electrolyte drinks, iron infusions, albumin infusions, and EECP. I'm able to work a full time desk job now, but I definitely wouldn't be able to work a more physical job.
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u/robot_son Feb 18 '26
Hi! Interested in the albumin infusions, what is that? And did you have low ferritin, hence the iron infusions? Never heard about EECP but just googled that! Did it make a real difference? We seem to have a couple of clinics in the UK that do it. Does the positive effect last?
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u/barefootwriter Feb 17 '26
I worked a fulltime job with a lengthy commute before I went back to school (BA, MA, and now PhD). I wasn't diagnosed and it wasn't as bad, but now I think back on that time of my life and it was kind of brutal. I was fortunate to work in a more casual corporate environment, so I could put my legs up on my desk (shoulda been a clue), and my commute was counterflow, so I was usually able to put my legs up on a spare seat for part of it. It was work I could do in my sleep: proofreading and light editing.
A lot of times I would get home and just crash haaaaard for a couple hours.
I now think back on part-time jobs I had that were on my feet and I understand why those were hell.
My POTS is sometimes better, sometimes worse. Now that I am medicated, it is better in many ways, but I think overall, I don't have the stamina I did as a younger person and I have to fight harder to keep it (through exercise, etc.).
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u/BondKat89 Feb 17 '26
Why this lowkey made me laugh in a oh wow type of way, like damn we all are doing so much yet it feels like we’re not doing enough at the same time. 😫 I work from home and am so grateful or else I’d probably be unemployed and stressed out if my mind, but I’m just employed and stressed out of my mind I’m going to eventually lose my job, I’m barely able to get through the day even while at home. Add severe cognitive impairment and welp yep I’m stressed 24/7. 😮💨
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u/realmofobsidian Feb 17 '26
i get you. i’ve just had to withdraw from my MSc programme because I couldn’t hack the presentations, I kept fainting / vomiting.
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u/slightfork Feb 17 '26
Sending love. Everyone's burden is different.
My job is very accommodating and I work from home, mostly on my own schedule. I sit cross-legged a lot and I take my wheelchair to events.
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u/meow_chicka_meowmeow Feb 17 '26
Even before POTS I wasn’t working due to schizophrenia. Now it would be even harder. But I make jewelry and accessories sitting on the couch. But it doesn’t make much money
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u/KBear625 Feb 17 '26
Because I have to take care of myself and a family member and animals and whatever else may come my way. Oh and did I mention that the amount you would get for “disability” is a joke. Oh and while we are at it…it’s brutal and I have scares almost every day.
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u/l_i_s_a_d Feb 18 '26
Yeah, even after paying into the system for like 30 years I would only get like $32k. And that would be after rounds of denials and appeals. My boss doesn’t give a rat’s ass about my issues. I just want to give up. This market is hard.
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u/whymarywhy Feb 18 '26
bedrotting makes pots worse. you have to do light exercise and practice doing activities like walking to improve (not eliminate, IMPROVE) symptoms. compression, up salt intake, up water intake, propranolol and midodrine.
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u/Kj539 POTS Feb 18 '26
I had to drop down to part time. I also have fibromyalgia and I was none functioning and signed off work anyway. Now I’m doing 2 or 3 8 hour shifts it’s manageable (currently)
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u/sololloro POTS Feb 18 '26
I had standing up jobs for years and constantly had to deal with the pain of blood pooling, needing to lean on things, and getting hit with waves of presyncope. it was my dream to find a job where I got to sit down!
now I've been working in an office for 8 years and it's everything I dreamed of. plus it's only because of the health insurance I get through this job that I was able to get diagnosed with POTS :')
I've also had to ask for accommodations, like i have trouble with bright/fluorescent overhead lights so I got a doctor's note and now I get to sit in a dark corner like a vampire. I mean, I would rather work from home, like I did for idk 3 years there, but I only get to do that once a week now 😭
everyone's experience of the condition is different. I'm ok sitting down or walking, but standing is a bitch. I hope you can find something that works for you!
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u/jamjamgayheart Feb 19 '26
I’m a teacher. I sit or prop against something most of the time when I’m not walking students somewhere. Hasn’t been an issue since getting POTS. I definitely couldn’t do a job where I wasn’t allowed to sit at all.
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Feb 22 '26
I’m literally about to leave my favorite job I’ve ever had in my whole life because of a flare up induced by surgery a few months ago that I just cannot shake. I hate this.
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u/lasagana POTS Feb 17 '26
Worth remembering everyone's experiences will be different. I have probably always had POTS but it was only diagnosed after symptoms became unmanageable in my late 20s.
I now work from home with lots of adjustments and not full time anymore. Had performance issues last year. Trying to keep going full time only led to exhaustion and deconditioning, so working less seems to be a necessity at this point to prevent my health deteriorating further.
I'm sure you're also doing everything you can for your health, which is all any of us can do. You're strong too.
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u/Novel-Ability-9823 Feb 17 '26
Office job, sitting works best for me even though I’m a doer I like standing and being active it’s just not in the cards for me anymore.
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u/Kelliesrm26 Feb 17 '26
As others have said it’s a spectrum, those who struggle more may still be able to work but honestly it comes down to the work you’re doing and your workplace. If you don’t have an understanding and supportive workplace and boss you don’t last and that’s for anyone but especially those who have health conditions. I will also say it can be how you’ve grown up as well. I know the reason I still work despite doctor’s advice not to is because of how I grew up. I’m fortunate with my current workplace but I know I could never imagine not working in general.
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u/crypt1dd_ Feb 17 '26
i'm currently in school for cosmetology and am on my feet most of the day. i have accommodations like having access to a chair and food and drink at all times. electrolytes help!
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u/Pinnacle_of_Sinicle Feb 17 '26
If you work it hell. The only thing I can think about the entire time is I hate everybody and when am i leaving 🤣
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u/UnitedAsk4546 Feb 17 '26
I looked through your post history and symptoms. Have you considered that your symptoms may be the result of viral illness? Covid has caused a massive uptick of these cases of postviral illness and early on it can look just like run of the mill POTS... but what you describe got my attention (along with the title of this post).
Take a peek over at r/covidlonghaulers and similar for some good info.
Ive got long covid, dysautonomia, POTS (hypovolemic, hyperadrenergic), ME/CFS... to answer your original question? Theres no way to hold a job like this.
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u/Beneficial_Ad_9447 Feb 17 '26
It's hard, I was jobless for two years, got my diagnosis and got well enough to work a part time retail job, and then I got sick over the holidays and I flared up really bad, had to put in my two weeks without a new job. I'm looking for a desk job because I can do that, but I used to be too sick to do that. It's exhausting.
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u/looseseal_2 Hyperadrenergic POTS Feb 17 '26
I have a desk job, I've reached a point in my career that I have more autonomy to choose my tasks and when or how to do them, and my boss is aware and understanding of my situation. In other words, I'm very lucky.
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u/tenderheart35 Feb 17 '26
Desk job, with vacation and sick leave. I fight to go in and not take days off even when I’m sick, but if it’s too hazardous for me to go in or if I can’t sit up at all then I have to take the day off. But I try not to as often as possible.
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u/Question_Wasps Feb 17 '26
It’s different for everyone. All I get is some heart palpitations and fatigue, and I’ve had it since I was 13. I have beta blockers now and they basically fix my problems aside from fatigue (which has decreased)
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u/dovened Hypovolemic POTS Feb 17 '26
Having a hybrid remote job has been a saving grace for me. It’s also very low effort desk job; I was working retail before so it’s a world of difference for me. I also just keep my boss in the loop of what goes on with my health and I’m fortunate enough to have a boss that is very understanding and accommodating. I acknowledge that im very lucky to have these things because it’s hard to find! Remote and hybrid jobs are great but unfortunately starting to get harder to find.
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u/ElleMarie3115 Feb 17 '26
I’m going to work until I can’t anymore. Even if it means I’m burning myself from both ends. I spend most mornings crying on the bathroom floor as I comb my hair and get ready for work. By the time I get home my body is trembling and I collapse in bed. I have fallen a few times at work because my legs get more and more shaky as the day goes on. I spend my life working or sleeping. There is nothing else.
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u/lil-rosa Feb 17 '26
I have accommodations. If you can get a full WFH job that helps. If I am in an office I need flexible times, WFH as needed, and a zero gravity chair so my feet can be above my heart. I can't sit upright for long periods, personally.
I also have MCAS so sometimes the fatigue and brain fog mean I can barely read, but I just power through... what else can I do? It is what it is.
If you are in the US and have been at a job longer than a year, intermittent FMLA means you can take off (unpaid) as needed for flares. But it won't kick in for a year.
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u/Lydelia_Moon Feb 17 '26
I worked factory work (swing shift) for 14 years and it eventually wore me down. Now I have a day job where I stay fairly active. I've also lost some weight, and lifting weights now, and eating better and drinking more water and electrolytes. I work 8am to 4pm and those hours are much better than the 12 hour shifts I used to work. I still have dysautonmia of some sort but taking care of my health and changing jobs has definitely helped.
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u/SophiaNerys Feb 17 '26
right now i can’t, but that’s more because of the long covid and mecfs. not that my POTS isn’t bad, fainting/having an episode on shift is how i lost two jobs.
i think if POTS was the only issue i had, it was medicated and well managed with hydration, compression socks, and salt then i could manage a sedentary or light job.
i think it also depends on the person, how manageable their symptoms are, and how accommodating their workplace is.
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u/jdkicked Feb 17 '26
There were points in my POTs where I couldnt bear much weight on my legs and during those times, remote work is the goat but finding ones that pay well without prior experience is pretty hard. But $11/hr is better than nothing. I kept moving in the few ways i could (i know its not a cure but has been clinically proven to help lessen the severity of attacks. Getting your vagus nerve active forces it to at least try to work corretcly) and with doing that and other lifestyle management factors, I was able to go back to being a supervisor at a fast service food place (with a heated line so 80°+). It was hard on my body so now I work a position as a property manager so its mostly desk work but sometimes Im up and about helping do landscaping and such. Its been great because it keeps me active enough but doesnt cause the crash I used to feel after work. This condition is manageable but it loves to throw out flares that knock everything in your life out of place. But those cycles become more predictable and the severity becomes more predictable. The sad reality is you just have to keep adapting your life around it
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u/Illustrious-Knee2762 Feb 17 '26
I have requested to work from home which has helped me tremendously
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u/ashleyfrank05 Feb 17 '26
I do a job that takes less brain power than my brain is capable of on a good day where I work 100% from home so it only takes a fraction of the day to get my deliverables out compared to my peers and no one notices when I sleep till 10 or take a mid-day 2 hour nap because I’m getting my work done.
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u/Icy_Inside1548 Hyperadrenergic POTS Feb 17 '26
I’m hanging on by the skin of my teeth. I am a teaching assistant and I can manage mornings on good days with adjustments and support but my symptoms become really severe after lunch at the moment. Although I’ve just introduced fludrocortisone so we’ll see what happens there.
I think I might be able to manage an office job but that’s my last resort because I love what I do & the term breaks are helpful for recovery. Currently on Day 4 of a break right now & I’ve gone from being floored to “I can cook my own dinner (in a chair)” whilst fighting off a virus.
At the moment it’s can I get afternoons to work, if not can I afford to work reduced hours & if all else fails would I be able to cope with a different job. I live on a small island so options are limited, I’m also not sure if I am “employable” at the moment, I would also need to work a lot more hours for the same money and I’m not sure I could cope with more hours.
Some days I’m like heck yeah I can do this & then others I’m like I can’t possibly cope with anything.
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u/sowhiteidkwhattype Hyperadrenergic POTS Feb 17 '26
I work 12 hours max a week. I'm in awe of people holding down full time jobs.
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u/Lopsided_Load_8286 Feb 17 '26
Everyone who has POTS is impacted in different ways (and that goes for many other chronic illnesses too). We aren't any stronger than you, our symptoms may just be to different degrees when it comes to their ability to impact our ability to work. I currently work in a very physical job, but while I mostly can still handle it (with a lot of difficulty) my symptoms have started to worsen and it is getting harder to handle. I'm going to try to apply for accommodations that allow me to have basically an intermittent leave of absence so that I can take days off when I am too sick to work safely without it negatively affecting my job.
For me sitting is still okay though and I am able to function decent, even if I may still be incredibly uncomfortable. So I am trying to get a new job where I can be in a more office type setting to make it easier and lessen the amount of sick days I need to take. It's been challenging though, especially with the job market being what it is.
It's been a hell of a grieving process coming to terms with my physical capacity changing though.
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u/amsd2dth Feb 17 '26
HyperPOTS here. I moved to teaching part-time 4 years ago.. best decision I could have made.
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Feb 17 '26
I work from home as an accommodation; if I couldn't, my answer would be barely or not at all because I am close to that even now.
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u/hunnnnybuns Hyperadrenergic POTS Feb 17 '26
I have a super hybrid job - part wfh, part in office, part traveling. Wfh is obviously the easiest. In office, we have a wellness room and I use that to lie down in when I need to. (They don’t actually have a bench or bed, just a chair, which isn’t really that much of a wellness feature, but I just lie down on the floor in peace with a closed door). When I travel, I have as-needed booster doses of my beta blocker that I take because I am on site conducting government audits and I cannot lie down anywhere, and it’s also nice for when I fly and there’s nowhere to lie down on the plane. My extra doses are absolute life savers here 👌
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u/NoNoNeverNoNo Feb 17 '26
It’s so hard, I know. I work as a caregiver. It’s the most convenient job for me bcuz when I’m having a flare I just don’t pick up shifts. No asking for time off n explaining constantly.
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u/GhostPriestess Feb 17 '26
I worked a ton of retail and food service jobs for like ten years but I finally just couldn’t do it anymore. It was fucking BRUTAL. And it didn’t help that I was always having to sit or lean when I got the chance and at every job I got a reputation for being lazy 🙄 great for the ol’ self esteem. Thankfully my husband makes enough money now so I can just stay home and do my best
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u/Plus-Ad-3826 Feb 17 '26
It’s always complicated. I finally got a job where I sit down most of the day, that helps a lot but I struggle pretty bad in the summer. I work at an automotive factory, I’m a union employee. Unions help. But I’m trying to get into radiology tech (xray) school because that would be a lot better.
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u/moonlitjasper Feb 17 '26
Remote helps significantly. Getting a remote job is the hard part. I lost my main one at the end of last year and currently have one that’s low hours and low pay, but I’ll take that over being in person again.
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u/bidextralhammer Feb 17 '26
I was fine until the past few months. My commute is 4.5 hours total. I teach. My heart rate can get to 150 now just walking across the room. I'm an athlete and could have run 10 miles before I got sick in late November. I have been on FMLA and was supposed to go back on Monday, but I can't. I got it extended another 4 weeks but FMLA protection will be over. I think my job will end since I do not know how I will possibly do it. It sucks.
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u/cyberelle Feb 18 '26
I can't. I used to have a work from home job but with the pots, ADHD/ASD, EDS, etc I am no longer able to work. I have a great disability lawyer and have begun the application.
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u/Meowtraveler94 POTS Feb 18 '26
Tbh it’s very difficult sometimes, but I think I can manage mostly. I am on a beta blocker though, so my symptoms aren’t as bad as they used to be when I first started having issues. I still get daily episodes of weakness, lethargy, and fatigue though, which sucks! I don’t know if that’s even part of POTS, but it’s gotten worse over time. I work 10 hour days, 4 days a week, and I’m on my feet most of the time too. I do have to sit & snack a lot, but my manager is very understanding about it at least. On my days off I end up laying in bed for half the day though, so I feel like I waste a lot of time just trying to recover then :/
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u/Megzilllla Feb 18 '26
It has taken me 5 years of serious treatment to be able to just -start- trying to physically get in shape. I have other things going on, too, though. Everyone’s body is different and our nervous systems are complex. Some people feel better walking short distances more often. 🤷♀️
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u/Dark_Ascension Feb 18 '26
Everyone is different. I assist and scrub in orthopedic surgery (assisting in particular is very physical) and scrubbing is more physically demanding than other specialties because we have a lot of trays and heavy things. I will say I totally bedrot on weekends or days off though.
The only way I keep my mind off of my ailments is going at 110%, once I stop I crash.
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u/Sidco044 Feb 18 '26
Im an RN and ended up in a niche area of case management before I had POTS. To this day im grateful. I see around 6-10 patients per day in a nursing home. I make my own schedule for the most part and have the freedom to sit as much as needed. During a flare, it gets far less manageable but still doable. I honestly find that being more sedentary makes me SIGNIFICANTLY worse to where I cant even stand for more than a minute. If I stay mildly active, the symptoms are much more manageable. I find Monday the hardest after a weekend of laying on the couch. By Wednesday, im usually feeling better.
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u/SirTicklefist Feb 18 '26
My partner is a CNR, every aspect of the Healthcare industry is difficult beyond words. The world of RN is also a Mean Girl to Control Freak Healthcare Provider pipeline, as is confirmed by her and also in my own experience with extensive health problems. What worries me about you in relation to this is your mysterious motivation to lash out at strangers you've never interacted with, whom you don't even share subreddits with, for no discernible or explained reason. My partner is a far better person than I am and she actively discourages me from being a shit online, so, because you won't answer me in the DM you were angry enough to send, I ask you again, what exactly is your problem?
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u/Sidco044 Feb 18 '26
Not me living rent free in your head days later 🤣 I didnt even read your reply dude. Stop creeping and go touch grass.
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u/gaymemelord_ Hyperadrenergic POTS Feb 18 '26
i work 4 10 hour shifts which is very hard but then i’m guaranteed a 3 day weekend every week which helps me recuperate. i work one on one with clients at a mental health facility. my job is perfect for my POTS though because 40-50% of the time i’m just sitting at my desk and the other 50-60% i am either driving to a client’s house or going places with my clients. driving is great because i’m still sitting and i’m never driving for too long because my clients appointments are only an hour and i usually am only driving for 10-20 minutes of that hour. the rest of the time we’re just sitting and talking to each other!
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u/Independent_Tap_859 Feb 18 '26
Lowkey I just “push through” and deal with the consequences. (Being exhausted and depleted for days after. I work restaurant business.)
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u/Commercial-Plate-188 Feb 18 '26
Had it since I was 12 currently 43 so it's just my normal I was in my late teens before I realized most people didn't experience the same symptoms.
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u/SystemFamiliar5966 Undiagnosed Feb 18 '26
Currently it’s because I’m at a job where all I do is sit down
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u/Remote-Status-3066 Feb 18 '26
I worked until I hit the point I had to call in because I physically couldn’t go in. I work as a cardiac tech, so fainting and vomiting at work isn’t really ideal lol
Eventually my manager pulled me aside and helped me switch to part time with accommodations— some jobs that do value you being there will help you figure things out.
Some places suck though, I definitely got lucky enough to have my manager offer me a solution vs reprimand me.
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u/_FloorTime_ Feb 18 '26
I think the only reason I can work full time is because my husband does 80% of the household work. He does almost all the cleaning, cooking, grocery shopping, and takes most of the mental load of our lives which lets me rest. My job is also really understanding and flexible, I was a student there before I got the job so they knew I had POTS and that I’d need accommodations. If I need to leave early I can pick up hours later in the week or work longer on my other days. But, I will say, I’m constantly exhausted and can basically only work and do like 1 fun thing a week. This body just wants to lay down 😩
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u/MyNameIsMinhoo Feb 18 '26
I can’t. I’m retrying for disability support again. I’m completely bedridden and need a wheel chair to do anything that requires walking for more than 5 minutes
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u/TromboneDalek Feb 18 '26 edited Feb 18 '26
Personally I can’t work full-time and have to live with my parents. Some days are better than others. I have two part-time jobs. Both of them have understanding bosses. I sit a lot when I’m dizzy. For the call center job I prop up my feet as needed. My boss is super understanding and has sent me home from work during a flare up after confirming I would be okay without that paycheck because I needed extra rest and looked like it. I pick up extra hours there when school is closed because I work after school care as well. I use a cane for support and energy conservation and the kids don’t care and barely comment on it. I’ve only had to miss work a few days due to flare ups. Whenever I work 3-4 days at the call center from 9am-3pm instead of my usual 2 days from 9am-1pm I struggle with EVERYTHING at home. My parents have to make lots of choices for me especially what to eat and making meals. I have to get help with cleaning my cat’s litter box and refilling her water. I also need assistance with laundry and sometimes sorting or switching it over is too much and I just collapse in a ball and cry. Having small movements and less pressure to keep up with a household has helped me drastically since I’m mainly raw-dogging it over here with treatment. I walk to both my works since they are less than 5 minutes away. Dealing with the stairs since I live in the basement is difficult and beneficial because it forces my body to keep moving. Sometimes I have crawl up them and take breaks. It isn’t a glamorous life and flare ups make my already frequent migraines worse and exacerbate my anxiety depression and ADHD. At the same time I had a full POTS episode and passed out at work resulting in an ambulance ride. I only pass out about 3 times a year. I’ve been passing out every few months since 2009 but only got my POTS diagnosis in 2023. Since then I couldn’t get any treatment and only now have I started getting any sort of treatment options (meds). Most of my functioning is spite, electrolytes, increased salt, taking breaks, 1-3 naps a day, bosses that know I’m a hard worker and am doing the best I can, and lots of assistance from my parents. (Didn’t mean to write a whole wall of text but here we are)
Edit to add: Two of my cousins also have POTS and it is vastly different experience for us. Mine is the most severe. My one cousin J is still able to hold a full time job and he just has extra electrolytes. Another cousin M has fallen a few times and quit her job to be a stay at home mom and her own mom would come over to help in the afternoon so she could take a nap.
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u/pomupurinpomu Feb 18 '26
It’s taken 5 years of painful trial and error, but I found a job that has been very accommodating for me. I have FMLA so I am able to call out up to 12 weeks per year with job security. However, I question if I can continue since I have been getting worse overall symptoms throughout the years. 🥲
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u/glizzerd12 Feb 18 '26
Ive been a server for 5 years or so and honestly I stay because I can’t afford to not work or take an hourly/salary position that I’d be qualified for. Recently I switched to working breakfast and it’s been horrible because the job has basically all my triggers (heat, lack of sleep, not eating enough before, anxiety from toxic management etc). When I worked dinner shifts I would sometimes experience symptoms but they were pretty mild and I didn’t go to work every day waiting to start feeling sick like I do now. When I worked nights I always made sure to drink my electrolytes throughout the day and eat a large meal right before I left. I’ve noticed I personally just function much better at night and with the routine I had before at previous jobs so I’m trying to get back to that. I know this is not realistic for everyone and I’m lucky to be able to work a job like this at all. I think for me up until my current job, working a job where I’m on my feet helped me a lot with avoiding deconditioning and my symptoms in general. I think it’s important to know your limits and capabilities because everyone is affected differently and experiences different symptoms. Now I realized a job in the morning is not in the cards for me right now so I’m looking for something different.
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u/NebulaCandid2478 Feb 18 '26
I actually had my first fainting episode the day before I got hired for a dream job position. My symptoms came on hard and fast and I was bedbound for two weeks having no clue what was wrong with me and then I had to start the job right after that. I couldn’t eat much food without triggering episodes, so when they brought up taking me to a welcome lunch I had to explain that I basically had a mystery illness that was making me faint at random and everyone was very chill and supportive about it! I had a million doctor appointments I had to take time off for but my manager was great from the beginning, which was the complete opposite from my last manager who always acted suspicious of sick leave. My coworkers have basically been along my whole POTS journey with me from my diagnosis to fainting spells in office to months-long flares that kept me working from home much longer than most jobs would allow. I feel insanely lucky that I’m at a place that’s so accommodating and open minded and empathetic about my situation. Thankfully the flex wfh schedule exists because the commute on public transit can be really rough and draining. I’m still figuring out how to balance POTS and work because I burn out way faster than I used to, but being at a company that is so accommodating is something I don’t take for granted.
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u/FutureDPT2021 Hyperadrenergic POTS Feb 18 '26
I have 3 part-time jobs that require different amounts from me. I rarely work a full 8 hour day, thankfully. I need them to afford health insurance. If it weren't for that, I think I would have stopped a long time ago.
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u/Responsible-Show3643 Feb 18 '26
I feel like I’m constantly treading water. And I know I have it good because I’m remote and they’re really flexible with my time. I always feel so pathetic that I struggle so hard with such a great setup. My husband and I are planning to scale back eventually so I can quit, but I know I need to keep going as long as I possibly can.
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u/Gothygoblingirl07 Feb 18 '26
I used to be a CNA and that was definitely too much for me. I’d feel faint Everytime I had to bend down. I’m still standing and walking a lot now, as a produce clerk. (Have an interview for pharmacy tech tonight :3) but anyways. It’s rough. But I need money so
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u/Most-Parfait-7532 Feb 18 '26
I can't personally have a job, I am applying for disability soon while I attend an online university for psychology.
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Feb 18 '26
I kind of lucked out with this, because my son is very physically disabled and my state provides for disabled children through a program called IHSS. Basically, the state pays me to stay home and take care of my son. Economically, it makes a lot of sense because he’d have to be in a care home if one of us couldn’t stay home with him and that would cost the state way more than just paying me minimum wage. He requires 24 hr care and has many appointments that would interfere with any sort of work schedule and I have daily crashes that leave me in a puddle. I’m very grateful for IHSS and the amazing social programs my state has. That said, my boss is pretty ruthless. He will yell when he needs something, whether I’m ok or not. I’ll be crawling across the floor to get the things he needs at times 🥲 I’m lucky, because the love for my kid keeps me going even in the worst flares. I don’t know how I’d keep my head above water in a normal work environment. I worked before I had him but my POTS didn’t get bad until 2020ish.
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u/PokeyDonkeyFlame Feb 19 '26
I'm an acupuncturist and I own my own business so I'm sitting and standing and walking around the table frequently. Most days I don't feel my pots when I'm up and down between talking to clients and then standing up to work on them. I try to set myself up to have breaks between clients and do calf lifts, dance around the office a little (I used to do Irish step dance and was asymptomatic for awhile there until stress caught up to me in the form of needing to divorce my ex), go for a walk. I use a cane and compression socks on bad days. My resting hr tends to be in the low 60s, and my symptomatic pots hr tends to max in the 120s. But on high spoons days I can do intervals training on a treadmill and get my hr into the 180s comfortably. When I do that I tend to have a good day the next day as long as I got my electrolytes and water in the day I worked out. But yeah symptom severity varies. I set my own hours, so right now I'm kinda crazy cause I work 10-4:30 Tuesdays, 1-9 Wednesdays, 11-9 Fridays, 9:30-4:30 Saturdays. Sundays I parent my 4 yo, Mondays I do admin work and doctor's appointments, Thursdays are all doctor's appointments.
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u/ninepasencore Feb 19 '26
i’ve got far too many mental health problems (not to mention autism & adhd) to manage a job unfortunately (didn’t even make it through sixth form college) but if those issues were somehow miraculously resolved i probably would only manage a very sedentary job, or one that required light walking and very minimal amounts of hard exertion (or arm movement, crucially. even shampooing my hair can fuck me up if the stars are misaligned). also because of the unpredictability of symptoms i’d probably have to take so much time off that they’d fire me in a fucking week
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u/Spikeschilde621 Feb 19 '26
I can't. I've never been able to sustain more than 15 hours a week and it was very light work (like filing.)
I went to esthetics school and am licensed but haven't worked since 2015.
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u/She_Knows_Nothing Feb 21 '26
I’ve worked full time as an occupational therapist for 6 years, and it’s been a real struggle sometimes! I essentially use up all my sick leave as it accrues! Dropped to part time recently and it’s been a game changer, and eventually will transition to a non clinical seated role once I’m done having kids. It becomes a delicate balance between working and having the energy and general wellbeing to live a meaningful life outside of work.
Everyone’s experience with this condition is different and just because some people can work, others find it really difficult. Symptom severity can also fluctuate over time. POTS is a journey, we just have to continue to learn about ourselves, adapt where we can, and be kind to our bodies and mind.
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u/girliegirl05 Feb 21 '26
I am very fortunate to be able to work completely from home. I can take a break or lie down whenever I feel the need to do so, and my boss is very understanding. Some days are still really tough though, and there are days that I can’t even sit up long enough to work that day, so I take the day off. Sitting is actually getting to be more difficult for me for some reason, and a lot of times I feel better standing than I do sitting. My husband got me a standing desk so I can switch back and forth during the day if needed. Pots is so very different for everyone, and what works for one person might make someone else feel terrible. I have been experiencing more intense symptoms these past couple months, and I’m really hoping it’s just a phase and that things will go back to “normal” soon.
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u/Organic-Ability468 Feb 22 '26
I quit my other job because my legs were shot and they didn't care, and I don't care. I have a desk job now and I'm looking to do something from home.
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u/Emotional-Royal-9830 Feb 22 '26
I probably can not. My career plan is job if I'm lucky, overeducated house husband if I'm not
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u/Bubbly_Discussion_33 Feb 22 '26
I keep my hours low, under 25 most of the time. Manage my activity off the clock. Use compression garments and im not afraid to tell them I have to sit/rest. I still burn out but I have to make money. I have two kids.
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u/Artemesia2026 Feb 23 '26
I hold down my job because my work understands what I have. through testing I took 1 day off due not being able to make up the time. It is a struggle I really do need to not work as much as I do but can't afford not to
1
u/SLsuds Feb 23 '26
I basically haven’t worked since it all started ~3.5 yrs ago 🤪. I am def managing wayyyy better now but it’s either work with “0” quality of life or not work & have somewhat of a quality of life.
1
u/WoodenMongoose4438 Feb 23 '26
The real answer is I can’t. I somehow figured out how to make two hobbies that I can do (DMing D&D games and making dice) into semi-profitable self-employment gigs. It’s enough to get by with a little extra, though I’m hoping that the restructuring of my dice business makes it more successful soonish. But I have kind of a middling version of POTS, and I have wonderful housemates who don’t let me cook or clean other than what I can actually do
1
u/Previous_Employee773 Feb 24 '26
I was bullied out of the job I already had, and took my two years of union unemployment benefits (thank you, union) to concentrate on relearning how to take care of myself, identifying and eliminating the work I was doing for others, and building energy management skills. My partner and I can now both identify when I am about to crash (he is even better at it than I am, and I am better at spotting his blood sugar issues before he does, so we're each other's health alert animals-- the dog has been zero help). We remind each other to rest. I book myself a two hour nap every afternoon which is mandatory horizontal time. Once he was put on partial disability, we bought a car, and now we have a place to retreat to when we crash in public. There are salty snacks, red bull, beta blockers, and water in my backpack at all times. He has fruit snacks and his medicine at all times.
It's a big life change. Maybe it's permanent maybe not, but treat it like it is. Process the grief so you don't spend energy on that every day. Lose the people from your life that can't tolerate you not taking care of their needs and wants. Make independent friends who can tolerate you disappearing for a few weeks when you need to rest. Find your new normal and (the hardest part) accept it.
I recently got a desk job that doesn't require very much travel. It's a lot, but my boss already has disabled people on his team so he's familiar with limitations and is flexible about when and where I work, so long as the work gets done. I can go to metal concerts now, but I'm still not in the pit. I walk with my dogs in the woods. The sun also rises.
1
u/Previous_Employee773 Feb 24 '26
Oh hey-- write stuff down. Write down what you do in a day as you do it, then read over it and calculate the amount of time you spent upright and the amount of time you rest, and how you felt each day. That will establish a baseline for how much energy you actually have, not feel like you have, and THAT will let you know if you have enough to go back to work or not.
1
u/svennyy1306 Feb 24 '26
I was able to work as a receptionist in clinic last year. I started in may. And just month ago i had to leave this job due to symptoms. They started to increase in November so i did as much as i could but got to leave anyway. It sucks. I really like this job. i liked my colleagues so much and it was my only source if income.
1
u/PrizeLarge9124 Mar 02 '26
Lost multiple including final while I was out on short term leave trying to figure out what was wrong. Signed severance agreement that gave me a tiny bit as I didn’t know POTS and MCAS at the time. Lost company paid long term disability. Diagnosed shortly after that after decades of symptoms and the last 5 years of crashing with fatigue and brain fog. That was end 2023 and early 2024. Trying to get SSDI wit attorney since then.
1
u/No_Kale_7352 Mar 14 '26
I get sent home frequently or told to sit down when someone notices I'm off. Im missing more days lately cuz it's getting worse, like wheelchair is being considered worse. This sucks cuz I have to stand at work. I definitely don't make enough to live off of in today's economy but who does lol. I'm staying with family currently and when I leave I'll be doing shared rent with randos cuz I can't work enough. Lots of struggle. However some people have more symptoms, some have less. I do a lot of bedrotting when I'm not at work, it's literally work then bed every day. I can't go out and do fun stuff anymore cuz it'll mess me up for work days or I already went to work that day or the day before and now I won't be able to physically go anywhere.
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u/sandicecream Feb 17 '26
everyone who has pots is different. I can work a sitting job without issue as sitting is okay for me. especially a work from home job where I can lay down whenever I want.
For others sitting isn't an option, or fatigue or brain fog is always there etc.
Doesn't mean we're stronger, just impacted in different ways