RA, Dystonia and DWP have ruined my life

I have received my decision for my mandatory reconsideration still refused PIP. I am absolutely broken. I don't have enough money to live on, expected to work full time, I am going to lose my house and have nowhere to live. I am so worn out, ill, stressed, depressed (now have to go for coucelling), I really don't know which way to turn. I can't sleep, feel sick all the time. I won't be able to pay for medication. I am so frightened of what's to come. I hate these conditions they have totally ruined my life.

15 Replies

  • Can you ring the NRAS helpline? Are you in the UK? If not have you something similar where you are? There will be people who can support you. Sending you hope.

  • I'm not sure on the process however I probably will as applied for pip but can you appeal again?

    I'm sorry you are feeling so low. It's hard enough to deal with with out other medical conditions and financial worries. It sounds like you really need some professional support right now. We are all here of course too.

    Hope things sort out for you soon xx

  • Can you start a crowd funding on Facebook? Seriously. I am so sorry this is happening to you. Hard to function with all that is on your plate! Hang in there.

  • Thank u for ur reply, i joined a forum on Facebook and it's disgusting reading people's stories of what they are having to go through. I understand the government need to make cuts but surely not at the cost of people's health. Thank you again for your support, it really helps. Xx

  • Always. I have a flare that is only.affecting my elbows right now but it renders me pretty useless. I cannot imagine how I will cope later. Hang in there. And seriously maybe you need news coverage to get the story out there. Keep trying. Surely your luck will change.

  • Do please book an appointment with your nearest citizens advice bureau (CAB). They are probably best placed to help you work out what else you are entitled to, and how you can manage with what you have. For example I think there are schemes to cover prescription charges for those on a very low income.

    It must be so hard, especially when you are dealing with the disease as well, but please don't let it defeat you. Try somehow to find the energy to keep investigating options.

  • Thank you for your replies, it's comforting to know there's people out there that understand the difficulties with this disease and know that you are not lying. I'm at the lowest point I've ever been. My family n friends are being so supportive. The hardest part with this is someone who doesn't know me has named me a liar. I feel degraded, humiliated, judged and my constant struggle with this illness has been degraded. I have been in touch with welfare rights and they are going to help, I've also been to see my MP, not just for me but everyone who's having to go through such a disgusting process. I never thought I would be ashamed of this country as I am now, I thought we were a caring society and would protect sick people but I now realise money is more important. 😢

  • Hi I am sorry to hear that you are struggling with so many illnesses. I had the same issues many issues. I was diagnosed with hypothyroidism and ra and apparently the main reason for me getting sick was because I suffered so many ear infections and stress in my life as a child. The best advice I can give you and even though this is not easy to do face your illness head on and tell yourself every day if you have to your not gonna suffer and you will do what you can to get your health back or try and help yourself as best as possible.

    Please don't let over peoples comments get you down. Maybe just try and cut these peope out of your life.

    Can you appeal the PIP or talk to a lawyer and family members. Again I know this is easy for me to say but even though I know things are hard for you right now try not to give up exhaust all your options and ask for help. Be strong and find a way to carry on. Don't give up.

    I really hope you manage to find some peace and try to find a way to pick yourself up and carry on. Please don't let any disease or anything else defeat you. Look after yourself

  • Thank u so much for your reply, it really helps knowing people are out there supporting and encouraging you. I'm sorry to hear the struggles you've had in life. I have struggled for 20 years with this condition while bringing up 3 children on my own, worked the whole time, many days I've wanted to give up but the kids kept me going. I have tried to stay independent and the financial help I got from DLA and much support from family n friends has helped me do this but because I have been independent the DWP said I'm fit n healthy therefore Personal Independence Payment is not for independent people. I'm gonna fight but it is so difficult when u are in so much pain. Thanks again for the support. X

  • I think this is really disgraceful!So upsetting for you. I hope the counselling helps. Sending you some love x

  • Thank you for reply. I'm in shock today I rang CAB to explain my situation and if there was anything I would be entitled to and she said no nothing but she could arrange a food voucher to take to the food bank. I was mortified. I can't believe this country has come to this. I explained that if I lost the house I would be homeless and have nothing to cook the food on so I declined the voucher. Are we a third world country are things that bad. X

  • Hi Sharlynn,

    we are so sorry to hear about your situation. Please do call the helpline to see if there is anything that we can suggest that that you may not know about already. You can call us on:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    best wishes

    Beverley (NRAS Helpline)

  • If you have had Mandatory Reconsideration then it doesn't stop there. You are entitled to appeal to the Tribunal to appeal, the DWP should have told you this. It took 2 assessments and 2 appeals before I was successful and as a result of the 2nd one I discovered the DWP withheld evidence from the first one. If your have or can find your local disability rights office, then speak to them urgently, you only have so long to appeal the Mandatory decision.

    Don't let them get you down, they are heartless and behave like machines, "computer says no". It has taken me 3 years to actually get there, it didn't improve my health, I actually had a TIA during the process, as it took 4 years before I actually got a decision on what was wrong and I actually presented my own research, which took 2 weeks and diagnosis, Enthesitis, to the consultant, who agreed with my conclusions. I have accepted that it will get worse and other than painkillers with perhaps some surgery in the future, I really on my own endorphins and try not to reach the maximum medication until it becomes absolutely needed, after that I have nowhere to go and will just have to suffer, but not in silence with the gestapo, they used to be called the SS after all, trying to give me ulcers on top.

    Knock them back as 60% o tribunal hearings are successful and you will get all the back payments from the date on the form.

    Good luck


  • Thank you so much for your encouragement reply. I'm just overwhelmed with it all they give u no time to arrange other income. I've spent all day on phone to a debt charity, I'm not in debt yet but after this month I will be. I'm trying to sort out the tribunal, bills, work and hospital appointments, as well as trying to live. I'm exhausted which is making me worse. I'm sorry to hear you are going through health problems also. This government doesn't care how sick people are supposed to cope. Good luck with everything, hopefully this will all end one day. Xx

  • Hey for different reasons I have been in your situation. It is annoying when you are sititing around trying to call people and get stuff done but please try and hang in there and lets hope things work out for you in the end.

    I know it is a lot harder for people to claim these days but if someone is sick and you have medical evidence to prove it the government should not be turning people down.

    I really understand why you are getting so annoyed and frustrated.

    Have you spoken to a family member or a friend maybe they can help you with a few things.

    Look after yourself.

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