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The trauma of chronic illness and the DWP

July 14, 2016

In case you didn’t guess from the title, I’m gonna be talking about the process of engaging with the DWP whilst very ill and how badly it sucks. If you’re fragile around this stuff, take care when reading.

I’m currently in the process of my second application for PIP. I last applied in April 2014, and it took them until August 2015 to lie their way to deciding, despite all the evidence I gave them and the incredulity of everyone I’ve told about it, that I deserved zero points and no money.

This time I’m doing the whole application through my local Citizen’s Advice Bureau. I contacted them at the first opportunity, and requested a home appointment to fill in the form, but they couldn’t fit me in, so this morning I had to get up two hours before my normal wake up time, take two buses, and spend a very long time going through the most private, painful, and embarrassing details of my life to try, for the second time, to get some of the support I am entitled to.

So. Up at 8am. Lots of coffee. Out by 9.15. appointment at 10.

The appointment was supposed to take two hours. The occupational therapist I see at the CFS/ME service isn’t happy for our 45 minute appointments to happen without a 5 minute break in the middle. And I ended up being there until almost half past one.

Tom was able to be with me until 11.30am, but then had to leave due to our ongoing washing machine saga. (Seriously Indesit, it’s been three weeks. We have lots of dirty clothes!) By the time he left I had already had to move off the chair to sit on the floor due to fibromyalgia pain.

Shortly after Tom left I stopped being able to speak properly and had to start singing my words.

At 12.00 I was able to take additional anti panic medication over and above my standard daily dose.

That was also about the first time I burst into tears without really even knowing why.

At about 12.25 I started playing a number game on my phone to try and stem the rising panic. It worked for a while.

I was still singing my words. The CAB worker told me about his choir to try and calm me down.

Side note. He was really fabulous. Like, really good. Stayed remarkably calm for all the weird and ill I was throwing around all over the place. When I said I’d had input from rape crisis checked immediately if I wanted him to hand over to a woman. Told me about his choir when I was crying rather than get upset or annoyed or expecting me to be able to carry on before I’d stopped crying. So mega huge thanks to the CAB for being awesome.
But there’s only so much you can do to mitigate how awful this process is.

So yeah. Still can’t talk. Singing my words.

A little before 1pm I get another crying jag. After that I can’t even sing anymore.

I start pointing at previous paperwork, and typing on my phone.

We finally finish the form. It takes me a full two minutes to sign, print and date because my hands are shaking so much.

He goes to photocopy All The Things. I fall asleep leaning against the wall. When he comes back I slap my face to wake myself up and his mask of calm cracks for the first time. I’m too tired to cry again.

They call a cab for me and it comes. While getting in I fall. I felt the bruises forming on my knees, elbow and shoulder, but only noticed the ruinous tear in my top later. Tom met the taxi and after crawling and head butts from the dog, I am home.

So. Something like this, a day like this, is undoubtedly traumatic.

My care plan went out of the window. The support structures and carefully calibrated limits of everyday life as a seriously and permanently ill person just can’t survive contact with the intense requirements of the ‘How Your Disability Affects You’ form.

Today was awful. But it’s not unusual.

To be ill and in contact with the DWP is to be constantly retraumatised.

On Monday I got a text message reminding me to complete and return my form. As if I could forget.

When I got home there was a letter from the DWP reminding me to complete and return my form. As if I could forget.
This kind of thing happens again and again, and there is always another battle to fight. Trauma on trauma.

The ill and disabled are being repeatedly traumatised and made more ill in an effort to spend less money on them as a distraction from giving more money to people and organisations that can buy nice lunches for politicians.

I don’t even know what I’m trying to say with this post. Except that this is happening, all around you, ever​y day.

I’m so tired.

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