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...