M.E, the benefits system, and me

This post is based on my own personal experience with the UK benefits system. I'm not trying to speak for everyone, but I have heard a lot of very similar stories to mine. In my personal opinion, our system needs a massive overhaul because as it stands, it's failing more people than it's helping.

My experience with Personal Independence Payment (PIP) started in Feb 2015 when my Mum started getting the ball rolling. For some context, in case you're unaware, PIP is based on what you can or cannot do for yourself reliably and repeatedly on a daily basis. Things like washing, eating/drinking, managing toilet needs, dressing/undressing, communicating, decision-making and mobility. It has absolutely nothing to do with whether you work or not and instead is based on how impaired your daily life is regardless of your employment status.

In May 2015 my Mum had to fill in my PIP forms for me (all 40 pages). I didn't have the cognitive function to do it myself as my M.E affects the brain. In order to complete this lengthy form I had to admit everything I cannot do for myself. I also attached letters from multiple different doctors including an M.E specialist all backing up my points.

I had to admit in this form that my parents had to prepare every meal for me, but on a good day I could pour myself a cold drink (I couldn't lift the kettle). I had to admit that my Mum organised my pills for me weekly, otherwise I would forget and become confused on dosage - even though it's written on the pill bottles.

I had to admit I could only wash myself once a week, and that I required help to wash and dry my hair. I had to admit that sitting down and standing up from the toilet caused me great pain in my hips and knees. I had to admit that I couldn't do buttons on my clothes because of tremors in my hands. I had to admit that I struggled with following conversation, particularly with new people. I had to admit that on a bad day I only leave my bed to use the toilet.

None of this was a lie.

I had to repeat all of this in person at a "consultation" - read: interrogation, a month later. My Mum came with me to help answer for me when I could not, and to help translate what the government worker was saying to me when I struggled to understand. It was hands down the most degrading experience of my life.

I could sense my words being twisted, every movement I made was being scrutinised. It was like everything that was being said was in a foreign language I couldn't understand. I had to decline most of the physical tests she wanted me to do - stand up on one leg etc. I knew the pain payback would be too much afterwards. I told her so. I tried to do the mental exercises - spelling words backwards etc. I got it wrong. I couldn't spell the word "world" backwards. I was really trying.

My mum still gets upset if she thinks about it. She says it was like I was a monkey being made to do tricks. I was seriously unwell and we knew this. I had multiple diagnosis's of several serious medical problems ranging from chronic internal bleeding to M.E. It didn't seem to matter to them. As soon as I step foot outside the building I burst out crying. I mean really ugly sobbing on a busy street in the middle of Glasgow. I cried the entire way home.

The experience was humiliating, dehumanising, and demeaning. I left a broken person, as if I wasn't broken enough going in.

A week later they told me I didn't meet the criteria, and I wasn't entitled to anything.

Their reasoning went something like this. "You have said you have difficulties with X. I have decided you can do X unaided." Over, and over, and over again. For nutrition, for toiletry needs, for communicating, for decision making, and more. So I'm just a liar then? I'm lazy? Do you think I'm trying to scam you?

My Mum fought them on it, and wrote a lengthy letter requesting a review. She made points for each section, again stating blankly in black and white the things I cannot do for myself. A mortifying process. At the end of July they awarded me £21.55 a week. They had decided that the vast majority of the initial reasoning's were correct, but they had slightly increased my mobility score meaning I now qualified. It was better than nothing.

In April 2017 I was asked to come in for a standard procedure review. Another "consultation". The process was the exact same as the time before, and again I left in floods of tears. A few days later I received a letter saying they were taking my benefits away - I no longer qualified.

I cannot tell you how degrading it is to struggle with basic tasks day after day. I cannot express how humiliating it is to have to admit that to someone you don't know. I cannot convey how heart breaking it is to then receive a letter from someone you've never met saying they don't believe you.

I am not a liar.

I'm not lazy either, in fact I'm a naturally driven and ambitious person. I'm a naturally independent person who is trapped inside a dependent body. I'm sick. I'm a human being. And I deserved better.

I chose not to fight them on it, I just didn't have it in me. I was broken, they had beat me, and I think they bet on that. I think they bank on the fact that sick people won't have the energy to fight for what they rightfully deserve. And that's disgusting.

If you're not in this chronically sick community you maybe have no personal experience of PIP, or the benefits system in general. You get your information from what the media puts out, and the words of politicians. Please do not believe them.

Are you under the impression that the problem with the benefits system is that so many people are trying to scam their way in? Of course, there are people that do that. But that is not the primary issue. The issue at hand here is our society is obsessed with weeding out fakers, and as a consequence the disabled are being denied time and time again. We are paying the price for the misinformation you are being told.

A week ago it came to light that police have been sending photographs and video footage of disabled activists at peaceful protests to the DWP as evidence of benefit fraud. I don't know how they know which activists are disabled but I can only assume it's based on their use of mobility aids.

Our country is in turmoil and our political future is uncertain. The disabled (should) have every right to voice their opinion publicly on the matter and fight for what they believe in. They should not be facing the removal of their benefits for doing so. Obviously.

Gaining benefits is difficult enough, even if you have amble medical evidence that you are deserving of it. They can take it away with no prior warning. Now we're also being watched in public spaces as well.

If this is allowed to continue, where does it end? If someone in a wheelchair stands up to reach an item off a shelf, can a photo be sent to the DWP as evidence of fraud? If someone walks with a cane but hurries for 10 seconds to catch a bus, can a video of that be used?

Conditions vary and symptoms fluctuate. It isn't a particularly mind boggling concept. We live under the assumption that sickness looks like one thing and health another. That assumption is wrong. Sickness can look like anything, it can look like anyone.

Thankfully I have a doctor that believes that I am sick. I live in a country where the government does not.

We need change.

If you're a UK citizen (whether or not you currently live here) you can sign this petition to try to ensure that the police cannot keep sending these photographs of disabled activists to the DWP. You can help us try to keep our freedom of speech and assembly.


If you're in the UK, are an M.E sufferer, and have personal experience with the benefits system you can share your experience with Carol Monaghan MP for Glasgow North West. She is meeting with the Minister for Disabled People, Health and Work to raise the recurrent issue of access to benefits for those with M.E. Your email must be sent by the 14th of June to carol.monaghan.mp@parliament.uk

Our system is broken, but there are people out there trying to help us and they need all the support we can give them. We're being silenced and dismissed time and time again. As individuals we might feel broken but together we are strong, and they know that. I think it scares them in all honesty. They know they won't like what we have to say, and so they try to silence us instead. It's easier than simply listening apparently. We are worthy of more, and the fight is just beginning.