To those who work

[tjperfick]

Can I just how understanding how your bosses have been when they know about Lupus.

[tjperfick]

soory having a bad sppech and thinking day - missed a word out!

[chrissiij]

My company were brilliant, although my request for a diamond encrusted reclining throne was declined.

[lucyloo023]

My boss has been fantastic. I've been working with him for ten years and was diagnosed 18 months ago. I was signed off for two months and went back on a phased return but now only work part time. I still have the same position, responsibility and authority and he gave me a wage increase to counteract the reduction in hours. If I'm not well now there is no problem if I stay off although I have to be really ill not to go in. Think I'm one of the lucky ones though. Heard so many stories of horrible employers xx

[Ghogh77]

My managers are very supportive with all my appts and hospital stays but don't think they understand lupus exactly. Recently asked me to apply for a promotion fingers crossed I may just get it! X

[Koko12]

My manager has been incredibly supportive. The team I'm managing - less understanding. I believe it has helped that my manager has previous experience of managing someone with Lupus.

[twist1]

My companies mixed. They provide permanantely health insurance which guaranteed 75% of my wage so only working part time has been a bonus. But I got demoted and have only had a 2% pay rise in the last tens years and I keep getting overlooked for promotion and getting negative yearly reviews. I struggled bad with depression but have just gone on anti depressant, fortunately a small dose is making a big difference and I am feeling more optimistic every day, with the realisation that I work so I can have a better social life

[Zoezoe752]

I work at a hospital so u would think they would understand especially as its a cardio respiratory department but they find it hard my contract runs out in sept and I'm so worried about bein kept on and I'm off on the sick at the minute so that's not gd they are supportive with hospital apps n if I'm ill at work and say I'm exhausted my boss tells me to go home so I suppose I'm lucky no one has helped with my role thou

[lowicklady55]

My employer was not sympathetic. I was paid off with a lump sum. Too young at 52 to get my pension. Now working diabolic hours for what....this company gets round the min wage by paying me £5.93 per hour and getting 80p a call. Unfortunately for me most of my calls are for half an hour. Therefore my pay is £3.77 per half hour. I rarely have an hour call. I will be starting another job soon in the afternoon just to make my wages up. The 1st job is zero hour contract. I have only been allocated 9 hours for the whole of this week, between 7 -10 am

[tjperfick]

sorry to hear about that, mine was OK at first, but I think patience runs out and until diagnosis it seems that it is something different all the time. Someone said last week to me that it's always something. Hopefully when I get a firm diagnosis/answers I can request an occ health appointment, but just worried that they make me give up work or cut my hours. Are they allowed to do this?

[Delila]

Mine have been great and very supportive even got me a chair and footrest! Never have problems getting time off for hospital appointments so no complaints!

[caninecrazy]

hello, i have 5 managers (3 are understanding) and 3 supervisors (1 understands) i work my hardest and do my best to avoid going sick but it cant be helped living with the lovely lupus lol. i did give a basic short list of main things i cant control and they were ok but i do get comments and eye rolling when i cant lift potatoe sacks etc.

luckily my hosp appts are on a friday when i dont work or id have to use my annual leave for them x

[Rani23]

Hi I think its more or less same everywhere... at my work people talk about you behind ur back. only recently my manager compared my illness to someone else who has had a 4 back operations, he said to me look her she seem to be managing very well. My circumstances are totally different to hers I am a single mum of very energetic 2 year old boy and have no family or friends support. I tried to tell him what this lupus does to you but he was not interested instead he said if it is getting too much for u then u should think about reducing ur hours. If u ever call in sick they make u feel so guilty and make us aware the you are lucky to have a job in this current climate. x

[Hidden]

My manager is trying to find ways of not providing flexible working conditions as recommended by the OHS.

[Geordie-chick]

My boss was very supportive at first but because of the time I have had off and the fact I work in a school with an inspection due he has turned into a bit of a dick to be honest and is placing me in certain situations that are causing my stress levels to go up which is currently having an effect upon my health. At the moment I'm currently working ill because I'm affraid of staying of work due the the comments that have been made to me in the last few months. I currently hate Mondays but hopefully things will change.

[tjperfick]

Geordie-chick, I totally understand. I too work in a school, and spent easter feeling so ill, because I felt that I had to work and try to prove that I could go a full term without any sick, even if it meant coming home and getting into a habit of having a nap. Not great work-life balance with a family and home to run.

[redfive]

when I was diagnosed in 2008,I told my work colleagues who were brillant but didnt even bother to tell my bosses as they deemed illness,not matter how serious,a total weakness...I actually had a totally unrelated lupus serious illness that meant I was off for 10 weeks...how they made my life total hell for that!so I worked through everything lupus could throw at me.

I left in 2012,work part time and told my new boss,who didnt really get the jist!He does get a bit shirty when my hospital appointments clash with a workday as he believes I should change appointments for my days off....Luckily my manager is alot more savvy and understanding.

[Dumpypug]

My manager is beyond awful, says the usual things of 'you look ok to me' she cant understand why I need to go to consultant apts as apparently I have been fine!

I was very ill last year and was off for 5 months while I was in and out of hospital, I heard from her twic, once to see if I was planning to return any time soon and the other while I was in hospital with a suspected stroke to ask if I knew who fixes the works dishwasher!!!

I went to see OH to get help to return to work and they wrote in their report that none of the paperwork that my manager sent over to them logs any supportive measures and they feel I have been left to suffer with out any support from my workplace - because of this my manager now refuses to speak to me, wont even say hello or goodbye, its very petty and absolutely infuriating!!

I work for the council so I expected better from them

x

[bam1993]

Lupus is a recognised disability and as such we are all covered by the Equalities Act 2010, if anyone has any problems, and they are not in a Union then they can get in touch with ACAS -who will give impartial advice- don't let things stress you out and make sure you know your rights!!!x