Working with lupus.

[Dan30cr]

Still trying my best to stay in work. Had a flare recently and I went to see the doctor. He gave me two choices, either he signs me off or I take a course of steroids. Because I can't really afford time off, i chose the later. But even so I had a few days off and so returned, dreading the inevitable return to work meeting as my boss is already concerned about my level of sick.

When I did have my meeting I was pleasantly surprised, because my manager just focused on what he could do to keep me employed and how he could support me, even reducing my workload. For a target driven service industry this is a big thing. He also mentioned about other areas in the company that many be less physically demanding and that he'd look into this for the future.

Got to say I was surprised by all this.

Curious to hear other experiences of working with lupus.....,

[PMRpro]

Perhaps he's discovered he gets brownie points for employing a certain proportion of "disabled" staff?

[Dan30cr in reply to PMRpro]

Well if that is the case I'm glad. Because otherwise no one would employ me and I'm too proud not to earn a living. Funnily enough I make up for my poor productivity with the other kpi's. I lead my team for customer satisfaction.

[PMRpro in reply to Dan30cr]

Which is also important ... Good luck.

[ameliavictoria]

Wow, that is good of him. I work as a housekeeper and also have lupus, but I didn't mention it to my employer as I was worried that they wouldn't take me on if they knew my health is variable. However, it is on a medical form in case of emergency. I don't find the disease effects my performance, despite the physical nature of the job. Maybe I could complain of muscle tiredness and joint pain after doing a lot. If I was to have a flare up or rough day, I'd hope my employer handles it similarly to how yours did. But I will certainly be looking for non physical work in future, housekeeping is only temporary for me.

[Kevin53]

Mutual respect is always positive; you have a very good boss who is happy to work with you for the best outcomes.

[fabwheelie]

Lupus UK have this info on working with Lupus lupusuk.org.uk/working-with...

For me personally I kept trying to work but could not manage it, and I ended up taking ill-health retirement. I really struggled to accept that I could not work, and I have had to adjust to having a reduced income.

However for me not working allows me to pace my activities, to get the sleep I need, and in hindsight has been one of the best things I did to help keep my lupus under control

[Hidden]

Hi there,

It is really good to hear that your workplace is being so supportive and that helpful adjustments are being offered to make sure that you can remain employed.

Anyone concerned about work-related issues and how to liaise with employers might find these two leaflets that can be accessed or downloaded on our website useful lupusuk.org.uk/wp-content/u... and lupusuk.org.uk/wp-content/u...

Alternatively, if anybody needs physical copies posted to them they can send me a private message or email [e-mail] with their name and address.

The second publication might be especially useful to give an employer a better understanding of the condition and how they can support their employee.

[Hidden]

Hi, I am not yet diagnosed, still working four days week, I was working five but struggled and told my manager need a day off. Anyway he gave me Tuesdays off and it has made things easier, but still when I get home I am pretty much good for nothing. Totally exhausted. My manager is understanding, we are a small firm so we pretty much have to get along. I am waiting for an MRI and I pray it shows up something and then maybe I can just cut down to three days a week, they know I am ill but to prove it would be better. Its great that your boss is understanding. I have just had a week ofg and went back Monday. ... mistake after mistake, wrong paperwork to the wrong Solicitors, mis filing! Forgetting what a have and havent done. Lets just say it was very long day

Wish the wizard of oz could give me my brain back 😄