Return to work

Is anybody either working or going through a phased return to work? I have been off since May 2013 and a phased return is being mooted. The idea is I do Mon/Weds/Fri 3 hours a day, the theory being I will be able to rest on alternate days and gradually build up stamina. Thing is does Lupus allow you to build up stamina or does it (as I suspect) bite back at you if you dare challenge it? Anyone been through this process and what was the outcome? If you work how do you manage? Also what would happen benefit wise if I resigned as opposed to was let go on medical grounds? Ta people :))

12 Replies

Not sure...I am afraid to go back to work. Some days I am in the bathroom constantly from either my scarred kidneys giving me trouble, constant UTI problems,and now of late, my intestines. Bathroom needs to be close..Ha! Good luck with your decision. I know I need to work financially, but not interested in being a martyr and getting sicker. I am finally learning to take care of myself. And I have two beautiful girls I still need to take care of...oh, and the husband, 3 rd child.... HA!


Hi DaleDiva, I had a phased return to work. You don't build up stamina, but you do try and pace yourself. I ended up that I could not go back to full time work but only do part time. Make sure that you have reasonable adjustments into your working day, including extra time to do your work and breaks in between and that your workload be reduced. If you can't manage it, you could look into your works finishing you on ill health grounds. Then you would claim ESA.

Hope it goes well for you



I'm currently off work expecting to start a phased return soon. I last did one in 2007 where I did 2 hours a day Mon Wed & Fri. What I learned then was that YOU have to take care of your self as they do not understand your conditions or needs. You do not build stamina you just push yourself. :( My GP at the time said that people don't usually get back to work after what I had been through but I made it. I'm hoping to do the same again but my symptoms are even worse this time.


Hi Dalediva

I hope the return to work goes well for you, huge step! If you can't manage then I'd advise you to go to your local Citizen's Advice Bureau who would help you claim ESA or DLA and see what else you could be entitled to

They would help with the employment side too. Good LuckX


I had a phased return to work, but in fact just had to cram all my work into 4 hours a day rather than 8/9 so it was no help at all. Then when I was back full time I had more work dumped on me than ever, and the stress resulted in two more autoimmune disorders being diagnosed within 3 months. I am now going to go 80%, which of course means 20% less pay, but I cannot manage financially to go less than this at the moment. I have asked about early retirement through ill health and been told that is not possible as I am not ill enough.

Good luck with your phased return to work, I hope your colleagues are more supportive than mine are.


Hi there. I did a phased return of 5 hours per day 4 days per week. My workload was also reduced.

It was manageable, and I enjoyed being back at work, having company and other things to focus on rather than thinking about my symptoms all the time.

However I didn't manage full time and eventually left my job and now do a less stressful part time job. It's a much better balance for me between work, rest and play.

All I can suggest is to try it, keep an open mind. If it is too much, are there other options?

If you find you really can't work then get some professional advice before making any decisions.

Good luck!

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Hi Dalediva, I am due to go back on Monday! They are doing my phased return over 2 months increasing my hours and day each week. But I have been advised that I will be doing non managerial and learning the business again for the first month... I've been off since November. I felt like saying I don't have a problem with my brain , it's my joints!

I feel as though they are just waiting for me to say I can't cope, so initially setting me up to fail before I have even begun! The only reason I am going back is that we can't survive off SSP... I am usually so positive but after the conversation yesterday I feel so dejected and realising that was perhaps one of the reason my LUPUS could have reared it's head....the stress!


Hi. This is a good question and one I am keen to know the answer to. I would love to go back to work but so far I can't see to cherry pick my good days. I can have a 'good day' for us, followed by a night with very little sleep and then a rubbish day. If I can get to a place where I know that I have more good days than bad then I will try to go back to work. As it was I started in a charity shop, increased it to about 6 hours a week and even that was hard. Why.....because I was trying to push on the days my body was screaming at me not to. So when I was changing a shop window dummy a day later I took a bad flare up and had stiffness all over. I found trying to get to the shop even mid morning more difficult, and although I looked ok everything was achy so I felt I was pushing through that. Consequently I had to end this. I would love to go back to my original role as a social worker but I've realised I can't ignore what my body is saying or it becomes worse. I would love to hear how you get on though.....and I don't give up hope myself.

I would say if you have to resign go to the GP's before and have it noted down that you are doing so medically as that may help any benefits you need to claim in the future.


Hi there Dalediva - I was in a similar position a couple of years ago, and tried to go back on a phased return, work helped as much as they could but at the end of the day they need people to do their job. I couldn't build up to full time so reduced my contracted hours to part time - struggled on for about a year and then ended up finishing on ill health grounds. As for benefits, I do receive ESA/DLA but not sure how you fare if you 'give up' (not that I see it as giving up - more like taking care of yourself).

But my point is, I'm sure I would have always wondered 'what if' if I hadn't gone back and tried it. For me I needed to know, or to prove to myself that I couldn't do it before accepting that I needed to finish work in the long term.

Whatever you decide, all the best, do whats right for you.


Hi there, I've been on phased return since January after nearly 5 months off, I started at 4hrs a day as this was the minimum that I could work without it affecting my pay, we have built up gradually over the last few weeks an hour or so a day but it is agreed that should I find I'm struggling at any point in the day I go home early using annual leave to make up the difference...I did find the first two or three weeks incredibly hard going and have had to leave early on a few occasions to get home and sleep...I have found my stamina has built up over the weeks and some days I almost feel quite normal and manage the days activities without any problem but even then I really need that sleep when I get home and a couple of times mid week I have had a sudden overwhelming urge to sleep and have just had to go home as soon as I was aware of it coming over or the discomfort becomes too much and I can't think straight to work properly. I am currently managing 2-3 full days at work with reasonable success though day 3 is tough going at times. I am only working mon-weds with thu/fri off due to a change in my treatment plan so I do probably push it a bit on the days I am there knowing I have four days off to rest up...Work are being as supportive as possible at the moment as this is a relatively new diagnosis and so we have agreed to see what kind of response is gained from treatment before we decide on the long term effects to the job and my ability to continue both in my current role and on the hours I work. I am pleased to be back at work though, being around people and feeling am doing something worthwhile is far more beneficial to me mentally than pottering around at home and not really seeing anyone.. it is definitely a struggle some days but I am really hoping that the methotrexate will settle things sufficiently for me to be able to cope with things better, I really don't want to think too far ahead on the work front, I'm still a little in shock at how fast things have declined in the last couple of years or so and although I now have a diagnosis and understand the need to get a suitable work/life balance to avoid flare ups etc I still find putting this into practice rather more difficult than I thought it would be although I'm sure I will learn to adjust eventually. I am lucky to have a job I really enjoy and a very good boss, HR dept & Occ Health Dr who are all doing as much as they can to help me get back to work and hopefully remain there for some time yet but as this is one of those conditions that likes to spring surprises on us I am taking everything step by step and trying not to expect too much or too little of myself or others and their understanding of it.. I really hope you find a way to a successful return, I do believe it is something we need to give a reasonable attempt at to prove to ourselves if we can or cant do it before contemplating the alternatives...if I find I really cant manage to sustain full time once I'm back to there then I will have to consider my options but at the moment I am trying to remain positive and hoping to eventually find and maintain a reasonably happy balance between life and lupus but it is early days yet and I don't want to feel bulldozed down any roads in respect to work until I feel ready to, I am happy that I know my limitations so believe I will recognise when and if it is time to admit defeat in this area...I guess the best bit of advice is to keep an open mind about it all and ensure you have a good supportive structure to your phased return which gives you a bit of flexibility for the days you go in and suddenly feel the need to go home...I provided my boss with a couple of information leaflets explaining lupus and also put in writing my wishes regarding leaving early if necessary and the reasons why etc and I update her regularly with anything that is said or any changes that are made that may affect my ability to work which keeps her in the picture even though she admits she doesn't always fully understand everything I tell her she does appreciate being told. Best of luck with your decision and hopefully it will work out better than you may think...take care xx


Should you have to use annual leave if you have to leave work early due to lupus? Lupus is covered by the equality act.


Thanks for reminding me about that phased return was planned with HR following occ health advice to extend it past the statutory 4wks just before diagnosis was confirmed as lupus...I will definitely discuss the issue at my next meeting...wouldnt normally have missed something like that but brain not functionin very well at moment especially in the memory dept! thanks again...very good point.


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