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Lupus and work

I have lupus / Hughes / sjrojens / b12 anaemia / widespread livedo rashes. I work in a hospital doing 5hrs per day with a job share which suits me as I can sleep in the morning or afternoons depending on the shift I'm doing. 8 myths ago my manager said she would employ another full time person and when that happens we would all be expected to get notes for all of the patients coming in (at the moment someone outside the team does this). At the time I said this additional task would be very difficult for me as I get dizzy when bending right down and reaching far up, and also my joints hurt in my hands and knees. So they sent me to occ health who reported back that I should only get notes that are right in front of me, or otherwise it will be prudent to restrict me from that role.

Since then, we still do not have the full timer, and in true lupus style my symptoms have worsened over time in that my hands occasionally spasm when I grab something heavy and I have shooting pains in my legs and arms, and suffer with bone ache. I don't have this all the time it comes and goes as it does with lupus symptoms. Last month my manager said the full times should be starting soon and that we would have to then get the notes, I said occ health have said I should be restricted and she said no they said you could get what's in front of you. I told her about my worsening symptoms and also that I was afraid if I took on this role that I would be suffering, and it would also exacerbate everything as well as my fatigue and then id probably be off sick, she said she would have to look at my competencies and then said she will send my back to occ health.

I went back to occ health and they agreed that I should be restricted from doing this but also said they would refer me to see the occ health consultant as she could not verify the veracity of my statements.

The reason for posting this - you pour your heart out TWICE to occ health and they tell you that they are unable to verify the veracity of my statements, which makes me think she does not believe what I have told her - I must look so well - although she did say referring me to occ health consultant will add more weight to my argument. I certainly feel no compassion or support whatsoever from my manager, I feel like I have to PROVE I am ill, and I am so angry that I have been put through this twice. Nobody seems to care, if its not bad enough being ill, struggling day to day, then you have people questioning what you have told them (which isn't easy) about your condition. This is all so cruel and unkind, and my manager can't communicate with me she is so dismissive. How can I deal with this?

I regularly see my GP who is totally supportive and I am seeing my consultant early June, so I suppose I can get support and back up from them, I suppose that's where I should obtain they support from and get it in writing from my consultant as he is the specialist that knows me best. Sorry this is solo long, its also a way I can get it out and get some support.

5 Replies

Hi 1 dayatatime

So sorry to read you are having problems at work with your boss who doesn't sound supportive. As you say it's hard enough being ill without this extra stress. You could go to your local Citizens Advice Bureau who have employment specialist advisors who will be able to advise how to handle it all. I would also ask your GP and Consultant if they would support you with a letter, this could be very helpful. I hope I've helped and good luck.X

1 like

ditto the above reply. also unions should be a good form of support. there are laws to protect people with disabilities even lupus related ones. good luck x


Thank you both for your replies, it means a lot. My GP and Consultant are both very supportive and you are right it would be a good idea to get their support with all the crap my manager is throwing at me, my GP already said she would help me if needs be, and I will ask consultant next month to do something at my routine appt. Thank god I actually have these two people for support, I think I might have left my job otherwise!


Have you tried giving your employers our new guides?

They may help to improve their understanding of lupus and your limitations?

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Hi Paul, you kindly sent these guides to me in the post and I found them extremely helpful. Would you believe my manager is a Matron. Of all professions you would think she would have some compassion, but sadly there is none, she is dismissive and cold. She seems unable to communicate, is very unapproachable and dis-interested. I have accepted this about her to a point, but when she is trying to push me into a job that will exacerbate my illness that is totally unfair and unkind, I feel like I'm in a battle with her now, proving my symptoms to occ health and now occ health consultant. I am seeing my own consultant early June so am hoping he can nip all this in the bud with a simple letter to spare me the trauma of going over it all yet again which is very depressing. Thank you for replying. I know I will get there in the end, but at what cost to poor old vulnerable me, its exhausting and emotional going through it all.


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