working with lupus- help and advice please - LUPUS UK


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working with lupus- help and advice please

Bellissimo profile image

hello lovely people , advice please

I’m trying to do a part time job with lupus / lupus nephritis, bit b12 deficiency, tender kidneys, muscle and joint pains , fatigue and re occurring kidney infection. I’m on mycrophenolate and steroids ... my energy levels are poor after my shift.

my employer is arranging a meeting with occupational health next Wednesday .

. my question is,

how do you manage working?, how many here have employment that occupational health and employer successfully made adjustments to allow you to continue working, Either in hours reduced or a sitting position job?. In a warmer location perhaps??

And... am I just better giving up this job to protect my health and quality of life?, I am 57 and do not qualify for means tested benefits.

Thankyou everyone in advance

21 Replies

I started a part time job back in April after resigning my last job summer 2019. We don't qualify for benefits either as our income is just over the threshold. I only work 12 hours a week at the moment which I split over 3 days with a day off in between each working day. So far this has proved manageable and I can even work the extra hour or two occasionally when asked. I know I'm lucky that my employer is very flexible but this working pattern might be useful for someone else too.

Hi I am in the same position I work part time but I have not involved my employers yet. They do know I have Lupus but literally that is it. I think they assume I am ok because I look ok and just get on with it but I find it so hard and my personal/home life suffers as a consequence as I ‘pay’ for working.

I have considered telling HR I find it hard but then I literally wonder what could they put in place that would help 🤷🏻‍♀️ I think if they ask what can they do I would say I’m not sure so we would be at stake mate.

I would be interested to hear what others say.

Good luck I hope your employers can help in some way.

I think they have a duty of care and legal obligation to put measures in place to help you, reduced hours, sitting etc.. I know law wise they cannot discriminate. I held a full time career until 7 yrs ago but no longer possible and I wish id said then. Best wishes

Thank you 😊 re the reduced hours though it would just mean I earn less so I’m not sure that’s possible for me.

Sorry to hear you are struggling. I was diagnosed with lupus nephritis last October and I am also on steroids & mychophenolate. I arranged with my manager and occupational health to work from home. I have recently started working some days in the office and occupational health arranged for me to get a new chair which is much better for the joint pain. I work for a university and they have good policies about adapting to staff needs. I'm aware that I am lucky but it still took a bit of discussion for my manager to understand the level of pain and exhaustion I was in . It's definitely reasonable for an employer to make some adjustments especially as it will hopefully be short-ish term. In my case OH listened to what I thought I needed so I recommend asking for what you think you need e.g. changed hours, more breaks etc. Hopefully you will respond well to your treatment and start having a bit more energy and less pain. Good luck with it.

Bellissimo profile image
Bellissimo in reply to rachelsca

Thank you.. I need to get used to working again but I definitely can’t be on my feet for long

rachelsca profile image
rachelsca in reply to Bellissimo

You know your own circumstances best. I would try asking for changes and if they can't/won't accommodate then consider leaving. Employers have an obligation to make reasonable accommodations. This can include giving you a different job that is more suitable for your needs, in your case something off your feet. Standing up for yourself can be difficult so try to do what will make you feel best in the long run, financially, emotionally, medically. If you can get support from a union or support group they can help you advocate. Good luck.

I was an academic with SLE and Class IV lupus nephritis. I carried on working until they carted me into the hospital. I was made redundant after that. That was 10 years ago. I now work 16 hours a week at home self-employed. I am broke (and will be even more broke when they discontinue tax credits because I don't qualify for UC) but my health is much better. I don't think I could have survived work.

You will be eligible for PiP if you can face the abysmal form filling and degradation of being presumed to be a liar until you can prove otherwise. As you are not dependent on other benefits I think you should go for it. You have nothing to lose.

Thankyou, I think I was better when I’m not working but it’s better for me mentally to mix .. I’m hoping OH can assist any my employer can give me reduced hours like 2 shifts a week Thanks again

For me, work is really important (to be engaged in something meaningful and social useful). For a while I did not work at all but that made me feel a bit pointless. I think reducing your hours (and/or taking on something that is less stressful) is a good idea. I wish you luck with your employer. OH should be able to help you.

Could you not have got ill-health retirement? I have an academic pension (no longer an academic) and am going through the hoops currently.

Bellissimo profile image
Bellissimo in reply to Treetop33

Thinking of all options, I’d like to mix again.. thankyou

In the end, they did give me my enhanced pension on top of my redundancy, but neither was very much. I had worked for years as a lone parent on fixed term contracts, and only got a permanent contract 4 years before I stopped working. I had had to take six months off, when the lupus was very bad, and they counted this as a break in service, so they only counted my length of service back for a limited number of years.

Basically I was royally stitched up, and my union rep worked in the same department as me, and wanted to get my hours (which he eventually did). So I ended up with a very inexperienced union rep, who worked extremely hard on my behalf, But could not win. The lawyers said that the university was within the law.

Morally wrong, but within the law.

That's rubbish, so sorry. I used to be a union rep and always went all out for people. And you have to research to outsmart HR. It makes a lifelong difference.

tabjw1 profile image
tabjw1 in reply to WinterSwimmer

Hi Winterswimmer. Your response to PIP is so true it's difficult to attain and you are made to feel like a liar because according to them you look well. However I had help in filling out my forms from a local charity and my PIP was back dated. I was not eligible for UC. tab

What about earnings related Employment support allowance which is not means tested but you have to jump through hoops to prove you deserve it. I finished in January because Lupus nephritis joint pain and angina. I was a self employed Decorator for many years and had a client list as long as my arm but just couldn't face it any more so packed up. Claimed Esa at basic rate which has helped. I retire in 14 days time but moneys going to be tight. I'm going to try find a little driving job probably delivering prescriptions locally and just do half days.

I wish I could help you more but good luck.

Bellissimo profile image
Bellissimo in reply to Royf

Thank you... I did 2 shifts last week and couldn’t function next day so longterm I cant see it working but thanks for replying.

Hello there. I’m sorry to read about your difficulties. I was diagnosed with SLE in 2008 and the following years saw me diagnosed with number of other related autoimmune disorders. I like us all get the exhaustion, the pain, the debate of is it worth it etc. I work pt doing a 3 days and then 2 days over 2 weeks in management in children's services. The good things are I sit and have managed to maintain my position, but I have had to be a courageous self advocate and utilise my union and legal advice over the years.Lupus UK have published two booklets for our situation and employment. One is for the employer so I would get hold of these from Nat office. Then you need to ensure your employer recognises the equality act. Mine didn’t back in 2012 nor did they recognise disability. So check things like that in their attendance management policy, to see that they do. Then remind them and Occ Health that their duty of care as an employer to you extends to utilising the equally act to enable you to be able to carry out your role the same as any other employee for whom the equality act does not apply. Then you get into the world of reasonable adjustments. Request an assessment under the DWP access to work scheme. You initiate it but you need to let your employer know, because the ensuing assessment forms part of your reasonable adjustments. They may visit you in your work place. Reasonable adjustments may include seating, work station eg keyboard, mouse etc, screen, monitor, lighting, voice activated software, a support person to assist with tasks and also adjustments to your working day. My agreement with HR is I can start as late at 9:30. My agreement with my manger is that it can be far later should I be unwell on that morning (pain). This occurs infrequently (far later) but it is really supportive for me. I have to work the hours I am paid for but I work it out and am trusted to do so. Recently my employer has agreed different quantities of days permitted for sickness absence for me. They initiated this conversation and because my manager pointed out how SLE and my other conditions work, HR have agreed that I can have double the quantity of days off sick in any rolling year, compared to colleagues who don’t have the same health needs. It took years to get to this point for me and I accept that to work, which I love and require the funds as well, has a cost. The cost is more acute exhaustion. So on my working days I don’t plan anything for the evening and the morning after my working days is the same. Sometimes like this past week, I find I am just exhausted. I have learnt to try to accept that and slow my pace of life so I am better and more like me. I’m sure it’s the weather that isn’t helping just now.

I think this is a bit of a ramble and your work needs may be very different to mine, but I have shared my experiences to assist you/others as an example of what you can achieve. I have had some awful experiences re work and have had to use legal to advise that if a doesn’t happen, then to court we go re disability discrimination. I plan to remain where I am for as long as can, doing what I love with children and young people, but like us all accept that a point may come where it doesn’t work at all.

I hope you get sorted but make sure you claim the powers that the law gives us but i get it’s really hard to do that, especially if you aren’t feeling great. All the best to you 😊

Hi ! Talk to you our employers. I work full time from home . I was based in an office before Covid but now we have the option of both I chose permanent working from home. I declared Lupus/SLE when I joined the company. I recently had a flare which totally floored me . Immediately health risk assessments and meetings with occupational health happened. I couldn’t have asked for more. My working hours have been adjusted to suit me and I have also been provided with full new office equipment .

I would hope that your company treat you as I have been treated !

Good Luck 🤞

Bellissimo profile image
Bellissimo in reply to 445600

Thankyou, it’s a fast pace retail arena role so working from home is not possible with this employer. I may look for alternative roles Thankyou for your thoughts

We had a re-organisation and I asked to work four days instead of five, Everyone expected me to have Monday or Friday off, but I have Wednesday off, work two, one day off, work two, two days off. My husband works Wednesday so I can really use it how I like, sometimes sleeping, sometimes catching up on chores, sometimes just doing things I like sometimes a mixture of all of them.

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