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Where do I stand???

Any advice please. I am currently off sick and due to attend a meeting regarding this next week. After an initial appiointment with My rheumatologist shes treating me for lupus based on symptoms, family history and blood results. My problem is I do not yet have a definitive diagnosis as yet and am wondering how I stand in terms of sickness protocol. I understand that lupus comes under disability act but am worried my employers will not acknowledge this without specific diagnosis.

My job as an Hospice nurse is physically and emotionally demanding and worry that in the long term I may not be able to continue with this. However I have only had steroid injection with little effect, plan being that she will start me on hydroxychloroquin at my next appt, scheduled for march.

I do not want to give up on my job, before I have opportunity to try this drug and see what impact it has.

My employers are pushing to know when I'll be back and I'm worried I'll be forced into packing in my job before I get treatment. I'm currently down to half pay and work for a charity. Any advice would be most welcome.

6 Replies

hi this sounds a very stressful time 4u. I know b4 I had to give up my job my work treated me like this forever calling meetings and wanting to know answers to their questions that I couldn't answer. My advice 2 u is to get a letter from ur rhemo doc, this is proof 4 them, evidence that u r going thru treatment and off ur condition.

While I was reading your comment I thought about u working with patients who may also have flus, colds and other infections have u ever been told by ur rhemo about how quick it is going 2 b 4 u 2 pick up a infection now?

I really hope ur work lets u get settled on ur treatment as all this stress isn't going to help ur treatment at all, if anything it will be my difficult 4 u to fight the lupus and get it at bay.

If anything it took me a year maybe more 4 my lupus 2 settle to go into remission as they call it. my rhemo doc did tell me that it would take this long. And it did.

I still now get my bad days way to often for my own liking, but its not just the lupus its everything else I have seemed to get along with the lupus.

You sound maybe try talk to your local citizens advice centre, these really helped me when I needed such answers.

Wish u all the best with everything ur work, life and treatment plan.


1 like

Hi Toastie

I am in the same position as you. I have to attend a meeting with my employers in 2 weeks. I am getting my Union involved as I don't have a conclusive result for Lupus

My rhuematologist used my current and past symptoms and blood results from dermatologist to diagnosed me. He then sent me to do more tests . I am yet to get these results .

I hope everything work out for you and they give you more time. Get your Union involved or advice from CAB.



Had a similar thing when I was working, unless you have a diagnosis of a condition that falls within the DDA, you are just off sick. It's really difficult when you are midway between being diagnosed and not. I think you then have to have a diagnosis for 3 months before the DDA applies. It's becoming harder as funding for these services are being cut, making it difficult to get the support you need

Good luck


Im on 400mg of hydroxychloroquine,takes months to kick in,feel difference with the fatigue,also on 17.5 mg of methotrexatw injections,my body not as sore.


Hi Toastie-69,

I'm sorry to hear that you are stuck in this stressful situation. We have a couple of guides about lupus and employment which you may find helpful. You can download or view them at lupusuk.org.uk/working-with... alternatively, if you would like physical copies, just send me a private message or email paul@lupusuk.org.uk with your name and address and I'll get them in the post for you.

Is your doctor able to provide your employers with a letter, explaining your symptoms and giving a rough estimate of when they expect you may be fit to return to work?

If you need additional advice about your personal situation, I would recommend that you visit your local Citizen's Advice Bureau.


I'm in the exact same boat. I work in elderly dementia care on full time nights. It's so physically and emotionally demanding, I have been off work since June. I was diagnosed in November but before I was diagnosed I knew it was Lupus due to symptoms, blood results and family history. I got given a meeting day with my employer and to prepare I got every single blood result printed off by my GP. I also went online, Lupus UK I think, and printed off a booklet aimed at employers. My manager was thankful for the information as it gave her an insight to what was going on.

Good Luck X


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