I am an RN... I work over 40 hours a week. It is very difficult for me. The days I have off I generally spend chilling out sleeping and trying to regain my energy. It is difficult for those of us who try to work. My advice go to your HR and file for FMLA, this helps to protect your job when you do have to take time off for being ill. My MD suggested that immediately after fully diagnosing me and that has been a God send. Every year I am able to file a new FLMA for the intermitant time needed. I go to work when I come home I rest, my days off I rest but if its a good day then I will have some fun with my hubby. We have found fun thing to do at home so I do not get so tired. We utilize the spoon theory for my days..... always saving a bit of energy for the next day. You have to do what is right for you. It is sometime very difficult to get SSDI. My prayers and hugs are with you

I am a nurse who still works full time, but I did cutback my hours. I also have intermittent FMLA "just in case." Each of us is different and the severity of our lupus is too. Listen to your body and do what is best for you!

I quit working soon after my diagnosis. I had already missed a lot of work intermittently and i had fmla for diabetes, but i was running out of fmla time. Lupus affects me cognitively which was making my job more difficult than I could bare. I am so glad my husband is understanding. He is the one that insisted I quit working. He saw me struggling and stressing about calling out of work when I already didn't feel well.

I don't work outside the home currently, but I can tell you I couldn't imagine working full time right now. Energy struggles make it challenging to get through the day. I admire anyone with lupus who can do it

yes im currently on fmla but it is restricted on how many days your doctor request for you to take off a month and if your lupus is going wild like mine has the last 2 months you can exhaust your time which can cause issues if your job has a point system. i have now switched to short term disability bc i have had some new symptoms that have been affecting me coming to work to where i could become a liability to my job, so fmla is great in protecting your job but work closely with your doctor to make sure he gives you the appropriate time for intermittent.