chronic illness

reaching out for financial help – PIP and ESA benefits

For those of you who live outside the UK, or who are not familiar with our benefits system, PIP is short for Personal Independent Payment, and there is another similar one called ESA (employment and support allowance), both of which you have to fill out a ridiculous 35 page form explaining how your illness / health condition / disability affects your day to day living, how it stops you functioning and being able to work like a normal human being.

Things have become so bad for me health wise lately that I am really unable to work barely at all, even just a few hours on my feet and I’m exhausted, and my brain just really struggles to process simple tasks and keep things together at all, let alone how unpredictable my energy levels are throughout the day. This makes working for other people seriously challenging as there is this constant sense of anxiety of letting them down and not being able to do the job well enough for their expectations.

So I applied for PIP to see if I would eligible to receive some financial help just to tide us over, with Dave being made redundant at the end of this week, there has been rising concern between us as to how we are actually going to be able to afford rent and pay our bills. Everything just feels completely up in the air right now and it’s difficult to not panic.

I have also been through the process in the past of applying for ESA when I first had to leave work back in August because my condition just became unbearable and the stress was too debilitating, and while I was granted help primarily, after my ‘work capability assessment’, it was taken away completely because they believed me suitable to go back to full time work, despite my evidence of being exhausted constantly, unable to think clearly, concentrate or stand up for any length of time without collapsing with weakness in my limbs, and struggling with chronic migraines due to sensory processing disorder. But yeah, by all means, I’m completely fine. In fact, what was the biggest kick in the teeth, was that in the report following the assessment, the nurse gave me a total of ZERO points, concluding that there was in fact, ZERO evidence pointing towards that I was even sick at all. This was actually very traumatic to hear when I finally got the call telling me the news, it was all I could do but to stop myself screaming down the phone crying how they had no idea what it was like to live in this body with this illness!

The actual assessment process seemed harmless enough, but I am so bitten from the result of my ESA that I was so scared to walk into my PIP assessment a few days ago. It was at 9.15am and a bit of a drive away, and I’m very much in the middle of a bad symptom flare right now, so my mornings are even worse than usual. At least I could just be myself and hope to God that she’d see that what I was saying was physically visible rather than being constantly invisible to others all the time, to the point that they don’t believe you are actually sick.

So the process was an hour of asking me pretty much the same questions as I had to answer in my 35 page booklet beforehand. The nurse assigned to me was genuinely one of the scariest, coldest women I have ever met, not warm or welcoming in any way, never smiled once, just sat there blunting asking questions and typing furiously away on her computer, never once seemingly showing any signs of humanity towards my obviously low and exhausted condition. It was strange, I could not read her at all and so never knew what she was asking. My brain fog was horrendous that morning and I was so anxious about how cold she was being, I could not relax at all and it made things even worse, feeling like she was constantly double guessing me and trying to trip me up in some way. When it came to the memory questions this was the most shocking, I genuinely couldn’t seem to do the simple tasks such as counting backwards in groups of 7, remembering simple word formations that she had asked minutes ago, how to spell certain words backwards. It was shocking that my cognitive function had depleted so badly, when there are days where my memory is kind of okay, especially my long term memory. In recent months my working short term memory has diminished to the point of ridiculous, so that wasn’t much of a surprise to see.

The whole thing was tedious, exhausting and very anxiety-provoking, considering you were there to prove just how sick you were, and that you were justified in asking for help. Of course this makes perfect sense, to weed out the ones who are just scrounging off the government for free money when they are more than capable of functioning well and earning an income, but for those of us who are genuinely sick, genuinely cannot cope with keeping up with life and have a limiting health condition, the whole process seems completely overwhelming – to ask you to travel to a new place, to sit there for an hour answering questions, filling out ridiculously long and detailed forms when you’re brain doesn’t function well or process things as quickly as you need it to. I am lucky enough that I can get around without aids or a wheelchair, simply by taking a lot of rest stops in between places and walking slowly, but this process is still the same for anyone in need of help, if they have a disability, illness or long term health condition.

Having someone analyse how ‘sick’ they think you are in order to judge whether you are in fact sick enough to justify any financial help is terrifying, your life and wellbeing is in the hands of people who don’t even know you, don’t see how you struggle every day, don’t see the sort of issues and challenges you have to face. All they have to go on is the report from a woman who spoke to you for an hour and bases their judgment solely on how that nurse saw you on for that one hour on that one day.

It’s exhausting and I’ve barely been able to get out of bed for the last 2 days since then. If only they could see THAT reality, huh?

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