Work and Lupus

biologybunnybiologybunny New MemberMember New Member
edited September 2018 in Symptoms
Hi everyone, 

I have heard that every case is different, however I am wondering how many people with lupus work? Have you found any healthcare - science specific occupations that work well with lupus? How do you work with lupus or do you not? If you do not work, when did you know it was time to quit working?

Thank you for all of the support and comments!
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  • AdrianaDSAdrianaDS New Member Member New Member
    Hi! I am quite ambitious, so I did law school while I worked at a law firm. I just graduated and have been working full time since June. It's not been easy but I love my job. I have some issues with the light but asked to be changed to another desk and have been good. The thing I need to keep reminding myself is not to stress (most of the times it doesn't work because of the nature of my job but I do what I can :)). I guess you should listen to your body and make the decision in this regard.
  • Purplefaith13Purplefaith13 New Member Member New Member
    Definitely every case is different.  Lupus for 20yrs..
    Diagnosed in college.. I have worked as a RN for 17yrs...  Poor immune system and sick people...imagine that.. But the disease force you to learn your body, listen to your body...it doesn't lie..when it say no... It means it..  I have had times where I had to leave jobs due to stress...stress equals FLARE..   As I got older, I learned to put my health first... I now work in an office.. Still,treating patients just over the phone☺.  Learnyourself!
  • truckertimtruckertim New Member Member New Member
    I'm a 56 year old truck driver. I was diagnosed 5 years ago. In the past few weeks the arthritis has me wondering what to do all I've done for the past 35 years is drive. Lately I've thought of disability and I'm Not sure if that is the right choice. Not really sure what I'm expecting to get from this. I guess it's just a bit of venting. God bless and comfortable rest to everyone.
  • MsLaMasonMsLaMason New Member Member New Member
    I have struggled with work and have been forced to leave jobs only to feel like a failure. Recently, I have missed 1 week out of every month since September and most recently I have been out since the first week of January and will continue to be while I combat a serious infection and face surgery. It is difficult.  I think it may be time to find something that allows me to work when I am well and rest when I need but finding that is hard. I too am open to suggestions.
    Everyone is different and the disease can change. There was a time worked full time as a CEO while raising 3 children and managed my disease well.  That just isn't the case at this time. 
    I wish you all the best. and much health and success!

  • kmonterokmontero New Member Member New Member
    I am a classroom teacher and have been for 25 years. I was diagnosed six years ago but I realized pretty quickly that I needed to work to keep my insurance and keep me active. During summer vacation I just want to sleep and be lazy. For me working is a must. 
  • teskegteskeg New Member Member New Member
    I was diagnosed over 6 years ago. I did go on disability for about 6 months as I got some sort of respiratory infection and just could not cope at work. I rested and during that time found out I also had hypothyroid, something I actually told my endocrinologist I felt I had 6 months prior but it did not show up in the blood test yet. After being treated for that I began feeling better and besides the autoimmune drugs I was on very little pain medication. However when I went back to work the stress increased along with my symptoms and so did my pain. I find that I must get enough sleep each day. I am lucky enough that I can now work flexible hours at my job so I get at least 8 or 9 hours of sleep or else I feel really sick. The problem for me is that I wake up ok and after 30 minutes the pain and weakness rushes in. I need to lay down after I take some pain medication until I feel better and then go to work. It is a vicious cycle that I go through each day. Have not had rashes for years thanks to my meds but they cannot get the pain under control or the weakness and fatigue. Sometimes I still get mouth sores but my main difficulty is pain. I cannot describe it as either muscle, nerve or joint pain. I can only compare it to a very strong flu like pain all over my body now including headaches. 
  • keldertronkeldertron New Member Member New Member
    Resurrecting this thread because Twitter!! 😊

    I had been self employed and in the middle of taking yoga teacher- training when my system crashed. I've had symptoms of Lupus for many years, but I kept being told by doctors I was fine, nothing was wrong. Or it's just the aging process. 

    I had to close everything down. What used to be easy math for formulating skin care recipes now takes me 10 minutes of staring at the spreadsheet before walking away because I can't remember how to do it. And try teaching a yoga class when forgetting words like "leg" or "hand"..... I have good and bad days like everyone, but with just having been diagnosed a couple of weeks ago, I have more bad days and it takes me everything just to keep up with the housework nevermind anything else. 

    For the time being, I don't work. There are no plans of this changing, but we will reassess as needed. Hoping the current treatment starts to work soon.
  • Comatosed1Comatosed1 New Member Member New Member
    I was diagnosed back in 2001, fresh out of high school. For a while I did work and tried to be a productive member of society. 2012 I left work to get disability, failed and because I was feeling better I tried to go back to work. Did that for a year until I ended up in the hospital for 2 weeks in isolation. That was when I knew I had to stop. Being told by your doctors that you could've easily died is an eye opener.
  • shanellegabrielshanellegabriel New Member Member New Member
    I think believe jobs that work best for people with lupus are ones that either can be remote, one that's very self-reliant (where you work mostly solo so if you take time off, others aren't going crazy because you aren't there). So administrative work, project based things that you can do anywhere. I work at an arts non-profit where highstakes events happen 3 times a year. the rest of the year is more managing logistics for people. I also make sure wherever I am, I ask before I start a new job about working from home options, paid time off, half days when I have dr appointments, the insurance group they offer (to make sure my doctor is under their plan), while knowing that the ADA requires jobs to make reasonable accommodations for us. Ex. I got a new office at one job because the one they gave me was DIRECTLY under the AC vent and my Raynaud's would kill my fingers.  
  • shanellegabrielshanellegabriel New Member Member New Member
    I was a full time artist for many years but that meant that I couldn't take days off or I wouldn't be able to pay my rent. After getting sick while on tour, I made the decision to get a "real' job where I got paid leave and quality insurance. It took a while but I had to also learn that if I had to take a day or two off, it's okay... life would go on. Sometimes our own need to be important, our fear of not being on point, equating our self-worth to our job, or worry that if we step back we'll be expendable is what leads to us getting sick and/or not taking care of ourselves. I used to feel so bad taking time off (even the expected vacation days my job offers!) or the morning off. If I die, they'll find someone to take my place right away... I have to make sure I take care of myself. 
  • lsasuvivorlsasuvivor New Member Member New Member
    It was always difficult for me to work full time, but I had no choice.  In hindsight, I know now that I have had Lupus since I was very young, but it wasn’t until after my daughter was born that I was diagnosed. Even when I was told that it was in remission, I still had symptoms that gradually led to giving up every extra curricular and social activity just so I could maintain a job. Then I ended up working longer because it would take me longer to complete my work. Sometimes because of complete exhaustion but usually because of chronic widespread pain.  It took every ounce of determination to finish simple tasks because I simply could not think about anything else except how I felt.  Somehow I survived and even thrived at times until about nine years ago when my lupus became active again.  Of course, even with my history, it took a couple years before my doctors were convinced that it was lupus and start any sort of treatment.  After not being able to get it under control, I had no choice but to take medical leave from work to have my spleen removed.  I’m now on disability but that doesn’t pay all the bills, so I recently started working very part-time in real estate.  Specifically in new home sales where I work in a model home and educate visitors  about the builder, community and available homes.  Two days a week is all I can muster, but it is relatively low stress and my schedule is somewhat flexible.  It does require a real estate license, which I already had; however there are similar jobs that do not require a license. 
  • celestellullcelestellull New Member Member New Member
    Where do I begin... I struggled for a while many times I would drag myself to work and pray that i would actually feel better as the day progressed. In 2014 I had such a bad flare up and pretty much used all my sick time before April. When I went to see my doctor he said he was going to write a letter for my job stating that he recommended flexible work accommodations for me. I brought it up to my bosses attention and I went to HR. They wanted more information and in return asked for more details. Basically how many hours could I work and what exactly would the work accommodations would be. Long story short I started working from home on days that I couldn’t deal with body aches. Since then I have been able to be better at my job. I don’t have. 9-5 I basically start at 7am if it requieres me to so  as long as I didn’t have to do the 2 hour commute I could do that. I’m not saying it easy there are days I can’t work at all but it has helped. So my advise is to look into it. Jobs now have way more flexibility than they used to. 
  • Stubborn67LadyStubborn67Lady New Member Member New Member
    I was diagnosed back in the 80s on the basis of symptoms that I'd had for over 10 years.  More recently, I was told it probably is not systemic lupus but discoid lupus.  I also have Sjogrens disease, Raynaud's syndrome, CFS (ME), and severe osteoarthritis.  I have worked every day I can, as I am a sole provider.  I pace myself, being cautious not to overdo if possible.  Some weekends are spent replenishing my stamina.  I've also been told by my rheumatologist the best thing I can do for myself is to continue working at least part time and stay busy.  
  • ashleygabbyashleygabby New Member Member New Member
    I have just recently found out that I have Lupus. I could tell that something had been wrong for the past two months (increasing fatigue and aches mostly). I work retail, and it has been getting more and more difficult to manage the symptoms. I’m an Assistant Manager, so I have a lot of responsibilities and I have to deal with a lot of stressful situations. I don’t know how much longer I can keep it up with my levels of fatigue. The other day I slept 9 1/2 hours the night before and still felt exhausted for the entire day. It took everything in me not to ask to go home early. I’m thinking that I’ll most likely need to find a new avenue of work here in the next 6 months or so.
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