I have had sle for almost eighteen years although it took seven years to be diagnosed. It is only the past two years that I have been unable

to work and am now claiming ESA I am in the support group which means I do not have to go to the job centre and be looking for work which I am grateful as that must be stressful however as much as I could not possibly work right now I am feeling depressed at the thought of is this it? and just getting by of the little income which I do not know how long I can claim for. ? I should have been retired in two years but I now have another eight years to go. I am wandering if there is any training I could do or voluntary work that would not affect the benefit I am on. Although I am not well I would like to think there is something I could do to get me out of this depression and feeling useless. This is the first time I have joined something like this and been intouch with other lupus sufferers. I have not gone into my health problems as we all seem to have the same mainly the fatigue and could go on forever about symptoms.

6 Replies

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  • Hi doti, I really am not up to speed with ESA or benefits in general, but I'm sure there would be untold voluntary work, that you could do. It could be the start of something new which could lead to training. Especially on a counselling level. I'm sure your local council or similar would have lists of organisations in your area that could do with your help.

  • Hi 6161 Thank you for replying and suggesting I check with local council for voluntary work especially counselling as I have already felt interested in this area but not had the confidence to apply myself thanks again for the encouragement.

  • Hi doti

    I do understand how you feel about being in the ESA Support Group and feeling written off. You can do some voluntary work and it won't affect your money. Have you a computer?. If you google voluntary work a good website should come up that lists all voluntary work in your area, worth a look. Even if you did something like I do one morning a week it would make you feel good. Ironically I'm in the ESA WRAG so have to do it and it's been hard.

    Did they give you a time limit for getting ESA and say when you will have to re-apply?. Might be worth asking your local Citizens Advice Bureau about it and they'd sort it for you. You must be very ill as it's tough getting into the Support Group!. Hope I've helped. X

  • Hi misty14 Thank you very much for replying and suggesting I check with the C.A.B. I have not been given a time limit on the ESA benefit. Sorry to hear you are in the ESA WRAG (not sure what WRAG is) but I can imagine how stressful it is. I do not feel I am any more ill than anyone else who has SLE and therefore think that everyone should automatically be put into the Support Group especially when stress is one of the main triggers in my experience , and I do feel it was just pot luck that I am in the support group. The point I am making here is the person who interviews us and makes the decision on our capabilities has not got a clue of how we are affected by this condition and therefore should not have the power to decide what we are capable of and when. Thank you again for your reply.

  • Hi doti

    I couldn't agree with you more that everyone with Lupus should be put in the Support Group to avoid the stress! I missed it by 1 point, tried an Appeal but was advised how risky it might be so I didn't do it. I'm in the work related activity group which means volunteering and having regular interviews with a Jobcentre Mentor!. In some ways it's been good like I said to you for my self esteem and confidence, just hard to do when ill. Your so right to say the assessors are making judgements when they don't have a clue what it's like living with the illness!. All the best X

  • i was on routes 2 work for 1 year now they have put me on support group i had 2 claim again for e s a and i got it again without seen the doctor i was happy with that for they total do my head in

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