Working with lupus.: Still trying my best to stay... - LUPUS UK

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Working with lupus.

Dan30cr profile image
8 Replies

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.....,

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Dan30cr
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PMRpro profile image
PMRpro

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

Dan30cr profile image
Dan30cr in reply toPMRpro

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 profile image
PMRpro in reply toDan30cr

Which is also important ... Good luck.

ameliavictoria profile image
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 profile image
Kevin53

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

fabwheelie profile image
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

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 fabienne@lupusuk.org.uk 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.

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 😄

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