I was put on Gov Disability. I do know that with maintenance of a controlled lifestyle some people with Lupus can really work very sucessfully. Others just never can handle it. There was another woman with Lupus in my company & she did miss a lot of time. Hence why they call it "The Disease Of A 1000 Faces". It affects all of us so differently.

I wonder what some of you who work from home do? I met one woman with lupus who reviewed movies and submitted her articles to the paper she worked for by intranet.

i work 40 hours a week, but I am a receptionist for the time being. However, i do feel sick also sometimes. i was a temp for a while so I didnt really have regulations as to how many days i could take. Now im on staff which makes it harder but I take what i need to take you know?? If I feel shitty and need to sleep thats what im going to do regardless. My illness and getting better is more important than a job. Ultimately I want to do set dressing whcih is lots of heavy labor but im willing to try it. It's my dream so I gotta go for it:)

I work 35 a week and its a reception job...I actually want to leave but the other jobs are very strenous and I know I could not possibly do those jobs. My reviews are not so great because of the amount of time I take but there is nothing I can do.

I am going through the process of diagnosis. I work 40 hours per week as a nurse. Somedays I don't know how I get through the day. I usually end up taking a nap when I get home or "pushing" myself until it's time for bed. Then it starts all over.

My neighbor was able to work up until Feb this year but she didn't do much else. A new Dr put her on new meds, now she can't go to work at all. Her father came to stay with her for a couple of weeks weeks while she got used to the meds. that was 6 weeks ago.

I workede for the first two years of my disease. I missed at least 3 days each month and numerous partial days, due to extreme inflamation,RA pain and fatigue. I then took a 6 $week leave of absence to try and build up my system. After two weeks back to work I was sick again and I lost my job of 10 years. I have not worked in 2 hears. I am 57 anf TRYING to get SSDI, but have been declined twice. Even with all of the meds I am on, I suffer severe pain, fatigue and my cognitive thinking is disruppted. I hope you have better luck!

Well I work a lil over 40 hours a week and it kick my butt real bad. My job is real understanding about me having Lupus and they always give me plenty of time to take off without using sick days or vacation days

I too had filed FMLA through HR at work. I was an Escrow Officer, closing real estate transactions formorethan 10 years. It is very demanding and stressful work. Your success is measured by the number of clients you have...more and more demands...more and more hours, oh yes, and no margin for error. I thought the FMLA would "protect" me, however, my employer wanted to "help" me with my health issues and allowed me to pool my clients with another officer and work together. When real estate started slowing down in our area~I was the first one to be laid off. I was really ill at that time, but even worse now. I could not possibly work a job of any kind given my current health. I eventually would have had to quit anyway.

There is no way i could do 40hrs per wk, i was in the same situation as you, i was off work for 2yrs, but before i got really sick, i used to study fulltime, and work 40hrs per week, i used to go out late nights with friends to keep up with the latest night clubs, and now i couldnt care less what clubs are open, i now work 20hrs a week, and exercise alot, im happy with that, if i take it slow i might feel better for a longer period, but if i rush it and get out there and do 40hrs a wk, i would be back at square one....its a huge lesson to listen to your own body...... good lluck

I worked bout 35- 40 hours a week, but I just recenly had to be put on unpaid medical leave. I'm a nurse and have not been definately diagnosed but I have alot of symptoms and + tests. Theyve been testing since 1995. I also had brain surg in 2004. I was fired from one job for having to many sick days. Im going to start seeing a new Dr on may 1 hopefully i can finally get answers but it is very difficult to work and I have 3 children 2 are disable. I am exhasted no matter how much sleep i get. I hope working works out for you, but it hasn't for me. Im gonna try to apply for social secuity if I ever get a diagnosis. good Luck

I had to quit working due to my lupus. I have been out of work now for 5 years and can no longer work. I tried working part time couldnt do it either. I have bad muscle spasms and headaches and everything else that comes along with it. I have finally excepted the fact that I cannot work anymore even though it took me along time to accept. Sometimes just being at home is awful because I dont get out of the house and that is bad I have to force myself to leave the house.

I almost am reluctant to post on this subject. Our daughter was striken with a particularly severe systemic lupus that immediately attacked her blood cells, painful joints, and multiple severe antibody reactions that caused a dire diagnosis at age 13. She continued to struggle through school and worked very hard to handle the rejection of friends, and others who did not understand the horrible ramifications of severe forms of lupus. This disease varies, so one cannot judge one case from another with thoughts of similar outcomes. She managed to get through high school, and entered college with increasing problems, due to kidney pathology, and many many medications that include the destructive prednisone in large doses, chemo, etc, etc. The weight gain that was dramatic, and other problems, made her sicker and sicker. But this is a worst case sort of scenario that many people in the real world have no concept of as to the severity and life-threatening aspects that accompany a few cases. Doctors have told us hers is one of the worst they've seen, yet she still survives, albeit disabled now. She is not bedridden but has much disablility in the form of constatn severe fatigue, had to drop out of college, and cannot hold a job. She tried very hard, but could not hold a job over 3 weeks after 7 years of disease toll. So this is a very serious form of lupus, and one who reads this should not assume you have the same severity. It has caused her much anxiety, and grief due to the loss of friends who do NOT understand this disease, but even worse, those in the work place, and even DOCTORS mostly do NOT understand what is truly SEVERE LUPUS. So I offer this only to show just how variable Lupus can be. It is not said to scare or unduly alarm you, but to take this very seriously and understand that Lupus is not " just some form of skin rash" that shows the ignorance of many, many people. Your bosses and managers on the jobs will be very intolerant in some cases, and you may find holding a job is impossible if you have severe lupus. Finishing college was impossible due to the severe fatigue, kidney disease, and anemia that can plague some lupus sufferers. So I have seen mild cases and this most severe case, and not one can be compared with another necessarily at all. I can only say, that you must be prepared for the great ignorance of many people regarding LUPUS which is poorly understood and too far minimized by some ignorant, vile people of our society. Worse yet, some of those vile people are your bosses, and your colleagues in the work place. I have heard of too many whose bosses have virtually had ZERO tolerance for large amounts of time lost at work. Unfortunately too many doctors also minimize your diseas which can be the worst blow of all. I have a great deal of hate and cyncism as a result of bad doctors who have little humane comfort to show. Such people in the medical field, and ugly bosses should be fired on the spot as far as I'm concerned. Lupus is very much underestimated, and misunderstood by too many people. The big research money usually goes to the people more comforted with the big name diseases that get far more publicity, like Heart Diseases and Cancers. While I do never discount the importance of Heart disease and Cancer, it does not diminish the importance of compassion that is due, but sorely missing in the plight of the Lupus afflicted patients. This is a worst case scanario, but I mean it only to point out some major flaws in our society and minimization of the horrid effects that lupus exacts upon a number of the miserably disabled patients who suffer greatly from it.

my hours just got downed from 40 to 20 a week because i had called off sick several times in the last few months and my store mgr (i work at a walgreens) told the other mgr who makes the schedule not to schedule me more than 3 days a week "cause thats all she works anyways" is what he told him. i cant help it if there are days where i'm too sick to make it. if i had a desk job like pink, then it would be easier, but retail is such a demanding job sometimes! i should find a desk job, i guess....workplaces just dont understand about these diseases, do they??

I am scheduled 45 hours a week but end up working 50 or more. I managed a cafe inside Ballys here in Vegas and it is not an easy job with lupus. I have been able to work most of all my hours without issue because I have a staff that understand the disease. I have a chef who makes sure I sit down to eat, because with my meds I am never hungry.
I can honestly say if it was not for the support of everyone in the cafe I would not be able to do it, because I run from the time i get there to the time I leave. I have a very bad habit of not slowing down even though i know I need to for my health.