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Hi, my name is itsalupuslife! How does the benefits system work, where do I start please?

itsalupuslife

Hi All,

It’s refreshing to see the supportive community on this site. I’m in a really bad , low and although surrounded by family, very lonely place.
I suffer from Lupus SLE. For years now I’ve gone Job to job trying desperately to hold down a job but I feel like I’m giving up now. I just am suffering so much with the fatigue and pain, so so many symptoms and every day is so different and unpredictable with lupus.
for first time in my life, I’m 49, im going to call CAB and find out if I can claim benefits- i feel so ashamed and a failure, I used to be a manager. Have tried and will keep trying to find a part time job but just cannot get one. Feel awful right now.
How does the benefits system work, where do I start please? #devastated asking this question. Can’t believe this is what my life has become:-(

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poppy123456

It's difficult to advise without any information. There's New style ESA but this is a contributions based benefit only and for this you will need to have worked at some point in the previous 2 tax years.

There's also Universal Credit but this is a means tested benefit. If you live with a partner you'll need to claim as a couple and your joint circumstances will be taken into consideration. If you have savings/capital of more than £16,000 you're excluded from claiming. You can use a benefits calculator to check entitlement.

Unless you're living in Scotland there's also PIP, which is a disability benefit. (ADP if living in Scotland) it's not means tested so other income/savings/capital do not affect the amount you maybe entitled to. It's not awarded based on any diagnosis. Whether there's any entitlement will depend on how your conditions affect you. https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/

https://www.gov.uk/guidance/new-style-employment-and-support-allowance

Jimm_Alumni

Hi @itsalupuslife, welcome to the community! You aren't alone here with your experiences. I want to start off though with one thing. You are not a failure for needing help or considering getting benefits. There is nothing to be ashamed about. The benefits exist for a reason, to help those who need help. I understand the shame around it. When I was first diagnosed with Crohn's disease I tried to avoid any and all help. That I had to deal with it myself or else I'd be a failure. It took me a long time to realise that it's okay to ask for and need help. In fact getting the help put me in a better place where I could then help others. Getting the help is actually what enabled me to get a job, because the help and support put me in a better place where I could work.

It took me thinking about it from an outside perspective. Would I call a family member who developed a health condition a failure because they needed some help? No, I wouldn't. So why was I calling myself a failure? I don't know if that perspective helps at all.

There are some people here who are very knowledgeable about the benefits system, I'd recommend starting off with reading some of our advice pages. https://www.scope.org.uk/advice-and-support/benefits/types-of-benefit

Cantilip

Hi! Tell from your name you're a fellow autoimmune disease sufferer. Mine's PMR, polymyalgia rheumatica. I didn't come down with it till after I'd retired, but that's not the point. The point is you are not well.

somewhere on this lovely site I murmur about a bit of freelancing I'm doing for a relative. I'm up for 4 hours a WEEK, not a day, not FTE. Being ill is tiring and can be painful and what are the side-effects of any treatment you're on? Surely the point when continuing to work will make you feel even worse than you do already is the time to stop. For the benefit of those who've never heard of it signs and symptoms of lupus may include - it's a very nasty disease.

Butterfly rash on the face
Appetite loss
Hair loss
Fever
Fatigue
Photosensitivity
Mouth ulcers
Unexplained Fever
Pericarditis
Pleuritis
Painful and swollen joints
Chest pain upon deep breathing
Swelling (edema) in legs or around eyes
Raynauds phenomenon
Chorea

Having this malevolent malady not for nothing called the wolf is nothing to be ashamed of any more than not being able to overcome it.