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I thank my lucky stars that I am retired,if I had a full time job I don't know how I would cope.Why oh why is Lupus not fully recognised?Who on earth makes these decisions about a person's disability with Lupus,they obviously do not have Lupus.I struggle to live on my pension so,how do people who have children and have Lupus manage.Come to think of it,how does any Lupus sufferer manage if they can't work?

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Actually Binkey I am better off now than I was when I was healthy, single and working, as I had to pay high rent and travelling costs in London. Now I have 2 young children (6 & 10) and I'm on my own because my husband wasn't very supportive of my condition - he's not a bad man.

I have been signed off from work for the last 4 years purely based on letters from consultants - I've not been made to endure a medical by a general practitioner to get benefit which is great because I look perfectly healthy. I didn't know what sort of financial support I would get but it didn't matter as I just knew I couldn't drag myself to work and look after the home and children anymore ( I dreamt I was hanging off the side of a cliff and I felt so tired that I just couldn't hold on anymore, I only hoped someone would catch me) I was so, so grateful when I found out that my rent and council tax would be paid, plus I'd get income support with sickness benefit, child tax credit, free school dinners and free music lessons for my daughter. My children have also been put down as Young Carers so they get some lovely free trips out as well.

I get more than I would if I were a single working mother so I can't complain at all. At the end of the day though I'd rather be healthy and working - lupus has changed my life so much. I do appreciated that others may be a lot less fortunate.


I am glad to see you are doing ok as a Lupus sufferer.I think,because it is not a recognised desease and because unless your GP;s and hospital notes are well connected,most Lupus sufferers just don;t get any recognition.i am a pensioner and struggle to make end's meet and have just been told that I now have to see a cardiologist as well as dealing with the Lupus.We are treated as unrecognised in general and something needs to be done about it.unfortunately there does'nt seem to be much help on the whole but,I am glad you seem to be one of the fortunate one's as far as assistance goes.


I had SLE diagnosed in 2005, after an ulcer repair op. Later I was told to apply for DLA by an advisor I rang to ask about the cold weather payments when I was nearly 60, and that was in 2006. They sent me the forms, I filled them and eventually they agreed to the smallest care allowance.

I'd been trudging to the job centre for several years, feeling more and more unwell. Job centre clerk said get your gp to sign you off, they didnt think I was well enough to be looking for work. My gps reaction? He was the expert and he didnt agree so I had to keep on signing on to protect my pension. I had one job interview in 15 years, didnt get it...

My biggest benefit is that the penion was then double the rate of jsa, add the dla and I feel much better off. I can afford better food. I got a grant to fix my central heating that hadnt worked for donkeys years, but had to wait till I was 60, so now the house is nice and warm. Am with Eon on a fixed rate for utilities, dont have to worry about paying those bills any more. Like you Guildford I cant complain either :) The pity is that I wasnt diagnosed sooner...


I am afraid,it seems that diagnosis does not seem to mean much with Lupus.GP's in general do not know much about Lupus.I keep saying this 'where do we go from here'?


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