Do people have to take a lot of time off work with SLE?

i got diagnosed with SLE, RA, Fibromyalgia and sjogrens last year and since I am struggling. I work full time live on my own and am exhausted all of the time. I am in my 7th week off work but due to unexplained and under investigation abdominal pain. I am just worried that I am going to keep getting sick and not be able to hold a job down and it is making me very anxious.

6 Replies

Hi there, sorry to hear you are struggling, I, along with lots of others with SLE plus others, have had to either retire early or give up work because it is just too difficult to carry on.

Good luck to you.


I have also had time off with lupus and complications and have even been told to give up work. Whilst this is probably good advice, how can I support my family with no income?


Unfortunately I have not been able to work for the past 10 years. I do receive sick pay or ESA (whatever it is called now) and I also get disability living allowance which is a huge help. There is help out there, speak to the adult social services team they will be able to help you too.


Do you have the opportunity through your employer to see an occupational health advisor or clinician? I know people have lots of good and bad experiences with this type of thing - mine have been all incredibly positive (I know I am really lucky - I don't want to sound boasful). My occ health advisior has worked with me and my employer to find a balance of working hours and duties which works for all of us. Obviously I have had to take a pay cut for my reduced hours, but being able to work and having the companionship of people for some of the day is a really important part of being "normal" in my opinion. We have an agreement that I can increase my hours when I am well enough to do so, and all the travelling I have had to do in the past has stopped. I still feel able to contribute, which makes me feel more normal, not some kind of permanently ill failure.

Over the last 4 years I've probably had the equivalent of 18 months off work - the last longest stretch between intermittent between Nov 2011 and April 2012 was also for abdo pain which was what finally led to my Lupus diagnosis. I am still having ongoing investigations for liver complications, but being able to work helps me think of other things. Mind you, I am having a bad week this week and am struggling to concentrate! I am on so many pills that I rattle, but I am a lot better than I was.

I have been in the spiral of not being able to work, being scared and feeling ill, and it can make you feel so much worse. Speak to someone - citizens advice might be a good place to start if your employer cant help with access to occupational health.

Good luck - it will get better, just don't get trapped in the spiral xx


i have had lupus and had to give up work along time ago if you feel like you cant carry on working explain everything to your gp ask him to write you a report and apply for benefit and dla it doesnt have to be perminant but gives you space to figure out your next move xxxxx


I have lupus to and i work as a nurses aide so i have stress as i have hard days at work. but somedays are so hard for me that i do not know how iam going to make it sometimes and i need to work and really need a second job but i know i can not do it right now i can barley make it through the job i have now so i just pray i will feel better and it does not get worse.but i hope you the best maybe you will just have mild symptoms and be able to keep working..


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