Chloe's story: Why PIP failed me

Chloe Bowen, 25, was diagnosed with Juvenile Idiopathic Arthritis (JIA) as a baby and now suffers from fibromyalgia. Her first application for Personal Independence Payment (PIP) was denied and she says the process left her feeling disbelieved, degraded and demoralised. She successfully appealed and wants the application process to be more humane. 

Diagnosed with JIA

I was diagnosed with JIA when I was 10 months old so it’s all I have ever known. I had flares often and remember being in and out of hospital. When I was little I had regular steroid injections in my joints then, when I was about nine, they put me on methotrexate.
I also developed uveitis at around eight which was managed through steroid eye drops until, at 17, I was put on adalimumab which changed the quality of my life massively because I found the eye flare ups, the thought of going blind, really scary.

My arthritis was under control when I went to university at 18 but a year later I started having widespread pain all over my body including my back which I’d never had before. I thought it was arthritis, thought I was doing too much so quit my part time job but the symptoms didn’t go away. 

I went back and forth to the rheumatologist and my GP but they just kept telling my tests were normal, there was no swelling or inflammation. The pandemic meant more delays and it was really dark time mentally, I didn’t know what was wrong, I was frightened and nobody was helping. The pain was so bad I was reliant on my then-boyfriend, now my husband, to look after me because just getting out of bed, having a shower, was so difficult.

Personal Independence Payment (PIP) application process was ‘degrading’

I heard about PIP and applied in 2021 because the pain was affecting every aspect of my life and frequently left me bedbound for days with limited ability to look after myself. I wrote down what I wanted to say and the assessor seemed friendly and polite so I felt quite positive when I put the phone down.

Around six weeks later I got a letter to say my claim had been denied and felt devastated. They’d scored me zero points in every section even though I’d been clear I was bed-ridden on my worst days. The letter had inaccuracies and some information was omitted completely, I felt nothing I’d said had been reflected. I remember telling her I was doing a Master’s and that symptoms made it difficult to study and I’d relied on extensions for work but they used the fact I was studying against me.

I felt so disheartened, like they’d made me out to be a liar, someone trying to cheat the system. It was so degrading and it severely damaged my mental health at a time that I was already struggling.

PIP process needs to be more applicable to those with chronic conditions

I didn’t feel like I had the energy to appeal but my mum and partner said that’s probably what the DWP was banking on so I wrote a cover letter with additional evidence and picked apart every inaccuracy in their statement.

Just before the appeal I had an appointment with my childhood rheumatologist, at my mum’s suggestion, and she diagnosed fibromyalgia. I submitted that diagnosis with my appeal letter and a month or so later I got a call from the DWP, a different assessor, and she was really nice. She said I qualified for daily living but not for mobility, even though I have days I can’t get down the stairs.

PIP meant I could work part time and really focus on reducing my stress and improving my health. It also paid for private mental health therapy because I had an inkling a lot of symptoms were linked to trauma and the therapy has been quite transformative.

I had a PIP review in 2024, I didn’t reapply because I didn’t feel I needed it because, although I’m in some pain every day, I’m much better. That’s how it should be, help when you need it.

The whole process needs to be more humane and less degrading. Nobody should be made to feel like a liar when they’re asking for help. There also needs to be better training for assessors because many have no knowledge about the conditions they are assessing.
They also need reforms to make the process more applicable to people with chronic conditions that fluctuate because current questions are very binary.