what is everyone else doing?: I have had SLE for... - LUPUS UK


27,271 members23,427 posts

what is everyone else doing?


I have had SLE for quite a few years but been off work for the last 2yrs and now i'm at the horrible stage of attending the job centre after having to do a medical assesment for benefits in which i scored 0 out of 15 !!

I was told i'm too well for employment and support allowance (yeh right), while at the moment i am too ill for the job centre because I don't think I can work more than 14 hrs a week (let me build up to that - fingers crossed I don't pick up an infection).

I didn't get any advice, group support or any help to get to the next step of trying to either get or keep a job while having Lupus (i lost two jobs because of being off work too long due to SLE).

So i suppose my question is: What does everyone else do? i'm struggling - I want to work but no-one seems to get the meaning of "good days" and "bad days". Any ideas gratefully received. The job centre even suggested i set up my own company - but "like what?" I asked and they said well that's up to me...

12 Replies

I am a pensioner and struggle all the time to manage.Lupus sufferers are apparently not classified a disabled.if only these people who supposedly make their judgements had Lupus.I would have thought that Lupus UK could advise you.I am actually dealing with a nasty lady from my volunteer centre who told everybody I had Lupus and that it was catching(action against her pending).How ignorant these people are.Your reumatologist or GP should help you.Have you checked with Lupus UK?Surely they can help.

This is a very hard one to answer,I can only tell you to appeal.and tell them how it is on your bad day,not how you feel when you are at the assessment

be sure to ask Lupus U/K to guide you in the right direction.

all the best 0-15 (dreadful)

Janx .


My employers got fed up with me having a lot of time off. I worked 34hrs a week 5 days starting at 7am finish at 3pm, for a year I was not very well old age I throught ( I'm 55),I was taken into hospital because I could not breath joint pains very high temp, after a week I was told I had sle. After 6 months went back to work could not do the hours went down to 24 after 6 months having had time off again my employer let me drop down to 12 hrs a week.I was luck, it took time for my job to understand what I have. I have lost a lot of money but I can not work any long hours. I enjoy my job (whats left of it) and it keep me going. I hope you find something soon will keep my fingers crossed.


Hi NiksB,

If you are unable to work then it is definitely worth appealing against the decision. Contact your local citizens advice bureau, as they have staff trained to give you advice on claiming benefits and they can help you fill in the forms etc.

Get in touch if you need anything else.

Hi NiksB

The system is all wrong, the Drs at EAS medical assesment are just there to look at you & in a way, it dosen't matter what you say, they make a judgement as soon as they see you. I went for a medical assesment for EAS & was awarded it for 6 months, I also had to attend 6 return to work appointments where they try to get you back to work, it was ridiclious, the first two I went to, the woman asked me to update my CV (I was self employed for 30 years & kept working for as long as possible, I'm sure they think that they think we're all shirkers!), then for the last four, another Lupus flare started & I just about made it to the appts (we just used to chat about everything except returning to work!!). Then I got Pneumonia & my health went down hill after that. My advice would be to talk to your Dr about EAS, DLA etc, I am very lucky, I have a wonderful Dr & he has supported me every step of the way, You need to fight my friend, they want you give up, I am now in reciept of EAS (long term) & DLA (higher rates, indefinatly) but had many medicals & even went to tribunal, it's very exhausting making so much effort as you know, but you must keep going, You could try Citizens Advice Bureau, they have people who can help & also help you fill in forms also, if you get lucky, some people from the benefits agency are very helpful.

Wishing you plenty of spoons


Hi, I would definately appeal against the decision. I've had so many problems with trying to claim ESA the past few years.I was also deemed fit in my 1st assessment because I could flail my limbs about! I appealed but the case got dropped when sent to somebody else to decide because nobody was doing anything about it. Hundreds of phone calls made and lots of hair pulled out.. Recently they told me on three different ocassions, four times, that I was on the other kind of ESA when infact on the contribution based. I never got as far as going to tribunal. Maybe something to look forward to as i have yet to go to the Medical Assessment appointed for this claim. You just have to hang on in there with it all and maybe get some help like the others have advised, they'll just end up running rings around you otherwise. Good luck :)

Thank you to all of you for your kind comments, I think I was feeling picked on and not heard good to know im not alone but shame on them for making us feel that way. Lupus uk has offered a letter of support which would be great and my GP has offered to sign me off sick but as you all know it probably means going round the system again. The sad thing is i have tried voluneering in the hope to build my stamina up but I bearly made any of the days so gave up, I do dearly want to be working I used to work with 2-5yrs in a preschool and loved it but I was full time then to part time and then lost my job because they could not hold it open indefinatly, My specialist suggested a change in careers because I always pick up infections but also said what the law states about people with disability (I hate the words disabled or disabilities because I feel this is me not everyone is the same and not everyone should be the same or put in a column or box because it suits people, we are people not numbers)but I think always easier said than done. Thanks for your support I will fight the fight because I think there is no other choice other than dropping out of the system and its a loner life. So thank you again.

Hi NiksB

I know that this is the last thing that you wannna read but please let your GP sign you off sick & apply again, they can't keep ignoring you & your GP sounds like he'll support you all the way,.I think volunteering is a good thing,I also started doing this but never even made it inside the door! Also I think that volunteering to do things may be looked upon as you can work, all these things go against us.

As for the "Disabled" tag, I know it's awful, I hate it myself but, if it gets you the benefits youve earned thru your working life, then I would have to say sweetie, go for it, never give up



Hi NiksB

thanks for your posting was just looking for some advise myself and saw your in same position i have just had a phone call this afternoon stating they are moving me onto JSA instead of ESA in January. I was diagnosed with SLE and Anti Phospholipid Syndrome in 2004. My medical assessment i scored 6 out of 15. I feel so deflated, cant stop crying and this is the last thing i needed right on top of christmas. I have worrked all my life up until my diagnoses but my ex employers could not find me a different position to accommodate my condition. I have joint pain in my knees and can not walk long distance / or sit for long periods with my feet on the floor ( I have to raise them up for circulation) I have a bad memory and lose track of conversations.

I just dont know how they can make a judgement just by the way you look on the outside and a few leg movements they should try spending a day with you. I have said i am going to appeal just dont know where to start with it all and hope i can find the strength from somewhere as dont really have a great support network around me.

Sure there are lots of people out there playing the system but i am not one of them and have medical evidence i have a condition that affects me on a daily basis and its a awful feeling you are made to feel like this

kind regards good luck with your fight


Hello NiksB,

So sorry to hear of your troubles. It has made me feel very grateful that I haven't had to endure any of this over the last 4 years since I went on income support + sickness benefit. It may be because I sent copies of all my medical reports from when I was in hospital and from the specialist at the lupus unit at St Thomas' in London. I was also told by another lupus suffer to always complete forms as if you are having a bad day because people don't seem to understand the ups and downs or that the change can be instant. I'd love to work too when the children get older as most of my energy is spent on them etc. but I can't think what type of job would allow me to work when I can and at such short notice. How would all my benefits be worked out with fluctuating hours? I know, we all need to work at home and write books, plays or songs and sell a million copies - wouldn't that be nice. Good luck NikB!

Hi its me again, after mulling it over with all your comments we have decided to fight the fight against the desision to move me to job seekers, Ive looked at working if it is possible and college and setting up my own bussiness and one moment I felt yeh I can do this and then realilty hits and when you think what, when, how I could not at the moment hold it altogether.

I do want to suggest to you all if you dont do this already:- a treat a day... could be sitting having a cup of tea with the best biscuits, or watch your fav tv programme or film whatever works. The reason is for a few minutes/ hour you can forget whats wrong and enjoy yourself honestly I find it helps and the worse you feel the more treats it dosnt need to cost very much or buy something online so you have something nice to look forward to when its delivered. We can have fun but maybe our way ( to mark the week we try and have a nice dinner on friday and watch a film or something I have been saving makes me look forward to the weekend) all the best to you guys and good luck niksB

Hi NiksB

I'm so glad that you've decided to fight them, it's the right thing to do. I'm glad you know to fill in the form as if it's your worse day ever.

Best wishes


You may also like...