fed up lupy

hi just joined this site and love reading all the comments its great to know you are not alone with this infuriating illness!!!! just had esa withdrawn, also been refused dla had to give up work due to my sickness so what the hel do i now live on ??? seems to me that if you have always worked and paid into the system you end up worse off and get penalised for it !!!!! dont you just love this country and this government !!!!!!!!!!!!!!!!! (FUME!!!!!!!!!!!!!!!!!)

8 Replies

hi sweetie know how you feel, due to lupus and rhematiod arthristis, had to give up work in 2003, with very little help from goverment. i had to appeal everything DLA and sickness benefit, with alot of support from my doctors i did manage to get it all sorted out. so dont give up there are people out that can help with what you can and cant get if i can help you say shout



Hi NormaJean, I am in the same position as you, I have always worked and my ESA will stop at the end of this month! I think its disgusting when you have worked all your life and paid into the system, maybe we have the wrong attitude and should never have gone to work, sat on our backsides and pretended to be sick, at least then if you happened to get sick, your money wont be stopped cos you have never paid into it so! sorry for rant, but it does make me feel so angry!! I wish you luck and hope you can get through this tuff time x


hi thanks for your comments, pollyanna i totally agree with you i feel so angry that ive tried to do the right thing all my life and for what ????? so i can get slapped in the face by the system that i have paid into when now for the first time in my life i actually need just a little bit of help from them !!! it makes my blood boil and at the end of the day surely we are only asking for a small return of what we have paid into the system (GRRRRRRRRRRRRR !!!)


Hi, I know what you mean. I too had to give up work and have no income whatsoever. Lucky that we are financially ok. I have a friend who has M.S She had a call to tell her that her benefit was being taken away. She worked for the N.H.S. for 36yrs. The lady asked her was she a drug user, or an alcoholic?? This was the only way that she would be eligible for the benefit. Im sure that most drug users will never have paid a penny in national insurance! I rest my case!!! It makes me mad.x


hi,i have just had my esa refused so having to appeal,i am going to cab to get help with the appeal like you i was refused dla also . i worked and its so annoying when people get help that have never bothered with getting a job.

lidabrown commented about the medical people asking if a drug user or an alcoholic you would be eligible well my freind said i should of said yes to a drug user as us lupys have to take many different drugs,with side affects on top.

so dont give up and appeal get help from cab.

good luck x



I get the mobility component of DLA but it is up for review again at the end of this year, xx


Hi Normajean, Have you looked at this website?

It helped me a great deal with filling in my claim for ESA. It's well worth a look, I feel it certainly helped complete the capability for work questionnaire. X


It's all changing .... I am still on DLA but I had to go through the paper mill already. YOU have to understand it is not easy for Doctors to diagnose this illness let alone for non doctors to deal with the aspects of an illness that has so many faces and potential disabilities. I myself can hardly walk , so that is visible. But when you often struggle with pericarditis ( to name but one extreme inflammation) it is not clear to them how much help you need. The DLA is rated on your degree of self helplessness. EG if you cannot wash yourself, kook , get dressed or shop ... they give points. From a certain amount of points you qualify. They have criteria to balance the degree of care and mobility. ON top of that they now try to integrate disabled people with the intention to provide you assistance in getting an adjusted work environment and thus job instead of giving you money. Overall this process takes time and I know out of the donkeys mouth ( direct) they nearly always refuse the first application, meaning you have to re- apply. This procedure is to discourage those that don't really need it. I do not agree with this tactic, for it is wasting time and a fraud is usually more persistent than a true disabled person. So my advice is to consult the disability officer of your council. They help you fill in the forms and make sure you have it all correct. When refused apply again, until the third time hen they automatically send out a Doctor. ONly a doctor will understand the true impact and listen to your disabling symptoms. He'll get you through the process.

When you speak to this doctor and when you fill in the forms you always need to talk about the worst case scenario. They don't understand fluctuations and the process does not allow it either. YOu can either walk or not walk... you can wash yourself or not, don't say you sometimes can't .... sometimes is not a condition.NOT: I have days I can't even get out of bed, but I am ALWAYS stiff in the morning. NOT: I rarely can walk further than 50 yards...but in a flare up I CAN4T WALK FURTHER THAN 50 YARDS .... those kind of things. See the picture? and don't be brave like most of us... I once said to the doctor ... it's ok , if I can't get my socks on I don't wear any, and he told me off... he said if you can't get them on you need help ... thus points. ( I am always one step ahead you see... don't buy complicated clothes with difficult buttons, have an adapted shower with seat, wheel chair, and I can do everything... sort off) In reality I can't , but I have learned to overcome issues.... like we all do. YOu need to go back to the roots... how things are normally done, and from that starting point you have to say YES I can , or NO I CAN'T. and having friends and family helping you does NOT count as I CAN !!!

I hope this helps.

Good luck xxx


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