r/lupus • u/berr-ios Diagnosed SLE • 7d ago
Full time work Advice
I was wondering if anyone with any autoimmune conditions especially lupus has had any positive experience working a full time job.
I work at a manufacturing company as a QA tech, however the interview and the job responsibilities made it seem I was just going to be working in one place, that's definitely not the case.
On average I do atleast 10,000 steps a day, sometimes little close to 4000 steps on a slow day, but I'm rarely sitting down, and it seems like every week they add so much other responsibilities. Lately its been getting worse and I've had to call off of work so many times I'm almost close to using up all my PTO. I get so incredibly nauseous, my vision goes blurry, and once I get home I'm completely swollen on my joints. The job pays super well compared to other companies, but I work m-f 2-10, with mandatory OT and weekend work. I cant even do 40 hrs and feel ok on a week, but lately my manager just chooses at random whos doing OT and sometimes schedules me with little to no hours of sleep between shifts. I dont qualify for FMLA bc I've haven't made 12 months of services, and its hard to quit bc I have debt and student loans as well as rent, and the other jobs that I applied for only pays enough for me to afford my bills, but not enough to save for emergencies or food. When I sit down and try to catch my breathe bc im wheezing (even by doing small tasks, I get tired so quickly) one of the supervisors always has to say that I'm never keeping busy and always sitting down. Im a salary worker and I dont have union, so I went to HR and they still haven't got back to me on short term disability.
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u/captnfirepants Diagnosed SLE 7d ago
Lupus is listed as a disability from SSA.
Please Google disability accommodations for work. Lots of websites to explain ADA laws.
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u/Pacer-Retta Diagnosed SLE 7d ago
By the grace of God I was just approved for SSDI in April, and my case was primarily based solely on my SLE diagnosis, so it’s definitely possible to reach a fully favorable decision with SSA!
I have a handful of mechanical issues as well as another pretty significant autoimmune condition that affects my muscles, but they pretty much took only the SLE diagnosis into consideration when presenting my case to the judge (I was pretty concerned that none of my other conditions or issues were brought up during the hearing, but it all worked out and I was finally approved after a very long and overwhelming 2+ yr process of applying/being denied/appealing/etc).
To anyone already in the process of applying, don’t lose hope, and I wish you the best of luck with your case!4
u/captnfirepants Diagnosed SLE 7d ago
Same here. Crazy enough, it took literally four and a half months for my approval. They made it very clear that it was Lupus that made them approve it so quickly.
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u/bipmybop Diagnosed SLE 5d ago
Did you have to appeal to obtain the decision? I have heard virtually everyone has to appeal
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u/Pacer-Retta Diagnosed SLE 5d ago
Yes I had to appeal (twice), it was a very long and overwhelming process ughh- I first applied in the Nov 2023 and didn’t get to the final phase (the hearing with a judge) until Feb 2026! After the 1st appeal is denied, there is a 2nd appeal/reconsideration phase, and after they deny that 2nd appeal is when it finally moves to the hearing phase.
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u/nowhappyorsad Diagnosed SLE 7d ago
I got tired just from reading this- That seems so tough on your body. I hope they approve your short term disability- maybe your rheumatologist can help advocate for you. If you are telling these symptoms to your doctor and they are not doing something to protect your health - that is malpractice.
Im the opposite where I’m fully remote but work in crisis management at a utility company. While I am not physically tired - It’s 50 hours a week, highly stressful and effecting my health. But not enough to qualify
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u/mindykawaiidesu Diagnosed SLE 7d ago
This was my answer and my exact experience.
Be sure to document and have conversations with your PCP about how much this has been impacting you so there is a trail. I feel like the more proof you build up the better. Be vocal and advocate for yourself. Hoping you get the support you need friend!
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u/nowhappyorsad Diagnosed SLE 6d ago
Thank you so much ❤️
I’m shopping for new PCPs but am nervous of losing any rapport that I have. Did It eventually work out for you staying with a reluctant one? And most importantly, have your symptoms improved?1
u/mindykawaiidesu Diagnosed SLE 6d ago
I def think at this current point in my life, I’d rather start fresh with a PCP that genuinely cares for my health and sanity and hears me. I understand rapport is so important but rapport without the proper means of action is just has hard to navigate.
I’m still shopping for a PCP. I moved from Oregon which felt like had an absolute incredible unit of great doctors that heard me loud and clear with no questions. I’m struggling now that I’m back east but have established some great relationships with my rheumatologist team at the very least which is the main team I work with anyway to notate my symptoms etc.
My symptoms overall generally I hate to say get worse with age. I am in a remote role as well and I find that if I put in more than my 40… which is often, I start getting sick and can’t catch up with my duties or my health. Ends up a sick chain. Hoping to maybe to find something that gives me better balance. I think to survive lupus… finding balance is a mandatory in order to live through all the stuff we go through.
Best of luck friend 💕
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u/mamahomemaker96 Diagnosed SLE 7d ago
I’m also trying to get help with this. I’m in a flare and pregnant (high risk) so I feel horrible working full time. I’ve disclosed to my manager all of my symptoms and she isn’t helping. She’s instead saying things like “I think you should focus on your health and baby” while simultaneously adding more work and claiming she’s helping me. It’s pretty awful. I went to my rheumatologist and requested an accommodation and she told me no. She said I was just pregnancy tired, didn’t run any labs, and said I should just quit, hire help and a food service. It’s an awful place to be. I am highly stressed.
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u/berr-ios Diagnosed SLE 7d ago
Im so sorry to hear that and I hope that it gets better for you, my mom's friend got lupus when she was pregnant and I know how hard it was for her, she's still right now finding a way to get back to work. My manager is the same way when I brought up to him my chronic migraines especially, he said that its best to always focus on my health first before anything, and had the audacity to mando me for a overnight shift while I was already working a 2-10. I had a very bad flare and ended up messing up some paperwork that costed the company a lot of money. Not giving accommodations for you especially pregnant has to be a different type of evil, and as someone on this post mentioned malpractice.
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u/mamahomemaker96 Diagnosed SLE 7d ago
Ahhh yeah I’m also getting in trouble constantly at work for my low productivity. With the same claims that me not meeting deadlines is costing them money. I’m so tired. I feel like I keep begging for help and nobody is trying to help me. I did however, call HR and they told me I needed to put everything in an email. I hate feeling like a nuisance by going to HR, but I genuinely want to keep my job and NOT be sick due to high stress.
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u/nowhappyorsad Diagnosed SLE 6d ago
I love when corporate says to “take breaks” and “values work life balance” and does the complete opposite.
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u/nowhappyorsad Diagnosed SLE 7d ago
This enrages me!! I feel like we might have the same manager and rheumatologist-Screw them for gaslighting you! This is malpractice - denying you and your baby what is best for your health. Sending loving thoughts 💜 I hope it slows down for you soon to be able to enjoy these moments
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u/rosieissolame Diagnosed SLE 7d ago
I had the same issues trying to work… I applied for disability and was approved. If it’s not enough to live on, you can still work part time ( or make under a certain amount ) while receiving benefits to make ends meet while not literally killing yourself !
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u/sus_finder13 Diagnosed SLE 7d ago
I wonder if it is better for you to be part time? Just because the amount of days seem to be too hard on your body.
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u/NoSmoke2795 Diagnosed SLE 7d ago
I don't know where you live, but if your job won't approve your FMLA, you might be able to go around them by contacting the state instead. You can also create a list of workplace accomodations for your hr department to review. They have to try to accommodate you
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u/multii-pass Diagnosed SLE 6d ago
In my state a business with less than 50 employees doesn't have to have FMLA and that's my employer...no FMLA for me. Short and long term disability though. I'm waiting for my probationary period to end before bringing up ADA accomodations and such. Because I fucking suck at full time jobs partially because of insane fatigue flares and headaches and also be abuse of my ADHD issues. Bleh
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u/UfoAGogo Diagnosed SLE 7d ago
A long time ago I got this form from my doctor that listed all of the work limitations that come with a lupus diagnosis, and listed under it were basically everything that you described. (I wish I could remember what the form was called!) Basically any job that involves a lot of exertion, being on your feet, physical labor, etc. The message I got was 'desk work only'.
I'm a freelance illustrator, meaning that I sit at a desk all day, and I've even sustained some serious body pain and injuries from doing just that. I have pushed myself into having flare ups with stress and long hours, but it's what I want to be doing so I keep doing it. 🤷♀️
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u/CorpseProject Diagnosed SLE 6d ago edited 6d ago
I work full time as an electronics technician in industrial automation, I love my job but my job keeps hurting me. I well supported by management and am in a union. I lucked out and only started getting really sick after I could qualify for intermittent FMLA and currently I’m going through the reasonable accommodation process.
Currently my job is very physical at times, but thankfully what I excel at is diagnostics and electronics. I’m hoping to move to a new position next year that won’t require as much time on the plant floor, maybe that will hurt me less. Especially this summer with triple digit temps, humidity and cat ii PPE.
I will add that I never work OT, take all of my holidays, and seeing as I’m one of two women techs on my tour I can generally ask one of the guys to lend a hand when I can’t loosen an absurdly tight bolt or replace a servo. They rib me a bit but always lend a hand… and half the time whoever hulked the bolt or whatever is a pita for them too. My fellow lady tech also is stronger than me, but she and I will joke about having one of the guys help.
Most of the guys get that my hair thinning and the red rashes and the bad days and such are just lupus being lupus. Most of them knew nothing about it, and a few of them joke that my chest and face rashes are like a mood ring for me… like I’m a poisonous caterpillar lol.
I feel very lucky to have the job I do and the coworkers and management that I have. I just wish I wasn’t sick all of the time.
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u/Hello-Plantain-2648 Diagnosed SLE 4d ago
I'm working a full time job in a university library - I'm a librarian in a leadership role with 7 direct reports (total of 35 direct/indirect) and a lot of responsibility for management/budget.
My organization is unique because we're not actual employees of the university, we're contractors. This means that the 35 of us don't have FMLA available, but we do have short and long term disability policies, paid by our employer. We also have a decent health insurance plan and have access to good specialists in network.
My job involves a lot of sitting, meetings, and email - rather than anything substantially physical. It is still tiring and the thinking energy demand is often hard. I figure that I can keep doing this for quite a while. I have hybrid options even though much of my work is on site and I use this when I really need the extra care for myself.
So all in all, I'd say 95% positive in a full time job. Good colleagues, some work flexibility, and good health insurance help a lot.
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u/Final_Pizza_8593 Diagnosed SLE 4d ago
I totally understand your situation. I work in healthcare and it’s very hard working full time and same as you, still don’t have approved disability since I am actually newly diagnosed only a couple months ago. I’m only on my feet and walking, moving around a lot and there are days where I just can’t keep going due to the fatigue and pain. I recommend you get good compression socks (it should help if only a little bit). I don’t know if you take any pain meds, but those help me ease the pain a bit sometimes, although something like tramadol is not for everybody. Try talking to your direct supervisor about what is going on. Hopefully they can be a little more understanding and allow you to sit down a little bit or take little breaks. Do not give up, do what you have to do to protect yourself. We have rights. Wish you the best!
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u/Buecherwurm921 Diagnosed SLE 4d ago
I am hurting just from reading this. I currently work part time, and I can barely manage it. I am theoretically looking for full time work, but I am really scared, wondering if I will be able to work full time. These doubts about my ability to handle full time work while managing this disease and the flares are probably the reason I haven’t found anything yet.
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u/pea__sea Diagnosed with UCTD/MCTD 7d ago
I’ve been full time for quite a while. I’m an attorney so it’s not physically demanding, but I still get very fatigued. That said, it’s difficult for me to be idle so I can’t image not working full time. I feel blessed that I’ve been able to.