What it feels like to have Multiple Sclerosis when the government takes your disability benefit away

The personal independence payment benefit is failing the sick and disabled.

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I have relapsing remitting Multiple Sclerosis. A week ago, I took my PIP (personal independence payment) claim to tribunal and lost.

This is pretty standard fare. Lengthy claims for the PIP benefit, which supports individuals with disabilities and incurable medical conditions, run into months and years.

The process of applying for PIP is neither transparent nor easy to follow, and is designed to encourage claimants to give up every step of the way. A person with a chronic condition such as MS, despite the fact it’s currently incurable, will struggle to fit within the remit of the benefit, and this is largely because fluctuating conditions are so hard to quantify.

Explaining how a fluctuating illness affects you on a day-to-day basis is like evaluating the career of Ben Affleck: there is no predictable trajectory.

It took ten months to get to the tribunal stage of my claim, though reports have claimants waiting significantly longer. Those ten months involved assessments with "medical professionals" at an Atos facility (it was actually a branch of the Physio World franchise), stating and restating the issues my disability causes me day-to-day, copious amounts of paperwork including 100 pages of court proceedings, and phone calls to and from the DWP.

If you felt like a human being before, you’re sure to feel like an incapable burden to society once completing the PIP paperwork, which entails listing everything you can’t do, as comprehensively as possible (already a contradiction in terms).

Having discussed these problems on paper, being questioned about the same topics at an assessment is degrading and demoralising. I get it: there has to be a way of weeding out the fakes and frauds. But putting a disabled or seriously ill person through an unnecessary and incredibly stressful process is inhumane. In addition to that, a fluctuating illness like MS is impossible to force into a rigid points system like PIP, whereby scores are awarded according to tasks a person needs help with.

As has been a common experience among claimants, the assessment stage of the process was stressful and unprofessional. My assessor, a former nurse without specialised knowledge of my illness, used the assessment as an excuse to talk about her family life. When she noted that I’d been working as a performer prior to diagnosis and that I taught creative writing, she spoke at length about her daughter who was writing a novel and hoped to be an actress, despite the industry being incredibly competitive. Her daughter’s novel was a Western but she’d also published poems and would love my classes, apparently. As tangents go, during a serious assessment, this wasn’t wanted or helpful (though I suspect it was encouraged by the assessor’s superiors as a way of establishing a false sense of security).

When the decision arrived, scoring me below the necessary points required to receive any support, I wasn’t surprised. The assessor had not understood how my condition affects me on a daily basis. She hadn’t accounted for the fluctuating nature of MS, and had pressed me to describe my condition over a two-week period, as opposed to the year required for fluctuating conditions. I had been summarised in a box on a computer screen, while my assessor chatted teen aspirations and bubble baths.

I saw my tribunal as an opportunity to set the record straight, correct misinformation recorded in the assessor’s report (she noted that my complexion was good and that I didn’t look tired, both super helpful sweeping generalisations when you are chronically ill), and to convey my problem with fatigue, the biggest barrier to my daily life.

The tribunal was held in my local courthouse, by an independent panel, and I was assured upon arrival that, despite being held in a courtroom, the process was informal. How, though, are you meant to feel calm and not at all like you’re on trial when you’re seated before a panel of three in an actual court room, with a real-life judge at the centre?

As legal aid and voluntary support are lacking or non-existent at present, many people like me are opting to represent themselves. Twitter user @notwaving, who is currently seeking help to prepare for her upcoming appeal, notes that spending £750 on legal representation for a tribunal is virtually impossible for a disabled or sick person reliant on benefits, for half of which they’ve recently been deemed ineligible.

As far as I can see, the PIP benefit has two major problems. The first of these is the lack of uniformity at every stage of assessment. People with the same conditions are treated completely differently depending on who carries out the assessment (Atos or Capita) and where they are based in the country. I’ve met people with the same condition as me, whose symptoms seem to mirror mine (though I realise this is a matter of opinion) who receive PIP in varying amounts. Which is not to say that I should be entitled to anything. It seems that, much as a piece of art is judged subjectively, the current benefit system relies on that all-important first review and there’s nothing objective about it. Plus there’s luck at play: if your assessor happens to have personal experience of your illness or disability, you’ll receive a fairer trial. Though, of course, no one is on trial, as we’re reminded repeatedly.

The second problem for those rejected from PIP is work. In order to claim Working Tax Credits, an individual has to work 30 hours. What if, because of a medical condition, you’re unable to hit those 30 hours? A person in receipt of PIP only has to work 16 hours before being able to access Working Tax Credits. Many disabled and seriously ill individuals rejected from claiming PIP are being trapped in this grey area in between, and as a result aren’t entitled to the extra help they might need; they’re being unfairly penalised for not working full-time, and there’s nothing they can do about it.

Those with chronic conditions aren’t the only ones to suffer at the hands of PIP, but a system that relies on being able to quantify unquantifiable conditions is failing the sick and disabled. Alongside misinformation and general misunderstanding of how auto-immune diseases affect the body, the system is subjecting disabled people to unnecessary stress, distress and significant financial hardship, and there’s not an end in sight.