How do I explain how I feel to PIP

Hello, I have rheumatoid arthritis for 9 years now, and I still find it extremely difficult to explain/ fill in the endless forms for PIP benefit. Am I the only one who feels like you are not believed? I always feel like they think I’m making it up.


  • Tom
    Tom Moderator Posts: 387

    Welcome to the forum, @Nannyish . You have had RA for 9 years and feel diffident about getting involved. Let me assure you that this is a safe, welcoming place where you will find friendship, help and advice.

     You also report difficulties in filling in a PIP application form. I suggest that you contact our helpline on 0800 5200 520, or try your local Citizens Advice Bureau.

    Good luck,

    Tom, Moderator

  • Nannyish
    Nannyish Member Posts: 5

    Thank you very much Tom, I will give it a ring

  • scotleag
    scotleag Member Posts: 57

    Hello @Nannyish No, you're not the only one who feels they're not believed. I was the same and I expect many others feel the same way. My experience may be of some help to you. It's quite long but I think the more I say of my experience the more it may help.

    I was diagnosed with RA in 1994 and received lower rate DLA for care from 2000 onwards. I had no idea I qualified for it until my GP told me I should be receiving it. I also have epilepsy and glaucoma but the award was for RA specifically. Nothing else. In 2019 I was told my DLA was ending and I had to apply for PIP. Having looked at how PIP works I thought I'd be eligible for the lower care level there too - though financially it was the equivalent of middle rate DLA. I filled in the forms as best I could but my interview was an absolute nightmare. It was late afternoon and I got the feeling straight away the person doing the interview just wanted to get their day finished as soon as possible. There wasn't even a polite welcome or explanation of the interview process which might have helped me feel at ease. She was brusque and ill-mannered from the start. From the off the atmosphere was dreadful. I'm usually quite a confident person at expressing myself and interacting with others, not normally nervous at interviews but this time I was. I was asked what I thought were totally irrelevant questions like what kind of books I read. What was I currently reading and so on. I got so flustered I couldn't even remember the name of the book I had by my bedside.

    Afterwards I thought maybe I was just being paranoid but then I got the results of the interview. Zero points. It made me think the person interviewing thought I was a fraud. I felt absolutely terrible but decided to pursue it and ask for a mandatory reconsideration. This came back refused. I'd had RA for 25 years and recently been put on Methotrexate as it was getting worse. I thought how can I possibly have been eligible for DLA all those years and now in my sixties with it getting worse I was basically being told there was nothing wrong with me.

    I decided to appeal, reasoning that all I had to lose was my time spent preparing my appeal and half a day at the Tribunal. I wrote a detailed appeal, including my medical history since diagnosis (as best as I could remember) and said how it was affecting my daily life. At the Tribunal I basically related the same and answered questions.

    I won the appeal. In fact I was awarded higher rate care AND higher rate mobility (the latter had nothing to do with RA, the Tribunal considered the epilepsy and glaucoma neither of which I'd mentioned when making my initial DLA application). I walked out of the tribunal elated. If I'd been awarded enough points to qualify for middle rate care PIP after my interview I'd have been delighted. The absolutely horrible person interviewing me had actually done me a favour. Though I went through several months of feeling hellishly low after that interview.

    I didn't do anything special. I simply related the facts both on paper and in person as to how my daily life was affected by RA. The difference was that one person had decided from the start not to believe me but the three people on the appeal did.

    No one knows better than YOU how RA affects your life. Be open and upfront about it. Believe in yourself and others will believe you too.

    I hope this helps.

  • 1961
    1961 Member Posts: 4

    So glad you got a great outcome, yes I was made to feel as if I was lying, I am now on depression medication due to feeling so inadequate and not being believed, especially as I had all the relevant medical evidence, all because I was unable to verbally explain how I was feeling. Thank god for my daughter who was able to help me apply again , so yes I feel for you and anyone else who is made to feel this way all the very best

  • Spud63
    Spud63 Member Posts: 4

    I have spinal stenosis and have been suffering for about 14 years now. I am also dyslexic and can't cope with filling in forms and interviews. I have spent a long time working for college's and they have supported me to deal with working with my pain levels. It was due to COVID we decided to re locate to Pembrokeshire and take early retirement. I applied for some support and was turned down, made to feel like I was making it all up. Got angry when I was phoned and told of the outcome (didn't help at all).

    I now work 3 days a week on minimum wage and take the rest of the week resting and getting over it before starting again. I fully understand how you felt and I am very pleased you got it sorted. Dose make me feel like this is all that's left and that's just not right.

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