"Just" a Form.

This article was published recently, and it made such a refreshing read. It relieves a sense of loneliness when you read that you're not the only people being thoroughly demoralised and beaten about by the benefits system. I mean, you know you aren't, but to hear someone else writing a piece that could be about you, is a welcome relief from the torrent of "benefit scrounging scum".

However, then I read a comment, which to some extent implied that it was "just a form". Let me quote it for you.

The second point is that the application (and justification) regime for benefits is too ‘tough.’  Again, money is not free, governments must rely upon tax receipts.  And it is right and proper that those tax payers see justification for where their money is spent.  It should be rigorous, it should be testing.  Money is supplied from a country that does not have any and from tax payers that also must budget and struggle to make ends meet.

This is not a radical concept.  As a civil servant, most of my day is spent justifying and reconciling where my work and money is spent.  I must write a report for every penny I spend, justifying how it is used in the pursuit of the aims of my job.  At the end of my 60 hour week, I too am left tired, exhausted, and questioning my career choices. 

Government money is not free, it is built on a currently unstable tax base.  Do not forget where it comes from.  If filling in a form is at the core of your complaint, I can recommend an investigation into the US welfare system, or indeed Afghanistan’s.

The scary thing is, I know this person. And hearing this from him made me realise just how oblivious he is to the truth we write about in this blog. Now, I know I haven't really gone into our battles with benefits, but the only reason is because it is so complex I struggle to know where to start!

The thing is, to a healthy person, a benefits form, be it IB, ESA, or DLA, is just that, a form. But to a healthy person, brushing your teeth is just brushing your teeth. A healthy person can just have a shower, or even just do a supermarket shop. When you're disabled, nothing is "just" something, and merely living becomes a job much harder than 60 hours a week. It's a 24/7 job to keep your self alive and functioning to some degree. It's attempting to barely exist - your hopes in actually living life are gone.

In the past 12 months, I have had to fill in an ESA form for my husband; an IB form for myself; and a DLA form for each of us. On top of this, we've had to fill in paperwork for 3 tribunals, plus an appeal for IS. Oh, so that's just a bit of paperwork? Maybe, if you're healthy.

Let me recall the latest, the DLA form. It's bringing tears to my eyes just thinking about it. We, a disabled couple, had 6 weeks to fill in the form. The DWP, a healthy organisation, had 8 weeks to process it (and they ignored half the information we gave, meaning we need to resend it). There are about 60 questions in the form, over half of which require essays for answers. It took the 2 of us about an hour to do a rough draft of each question. Again, that might not seem much to a healthy person. But that's 30 hours. Plus the other questions. And making it legible. And photocopying it all. Let me break it down.

My husband's brain fog and ADD means he has very poor concentration, often forgets words and cannot form sentences. His fatigue means he cannot focus on something without becoming so tired he needs to sleep. He cannot sit up for more than a few minutes. He cannot write or type for more than a small amount because of pain.

My anxiety means that each bit of the form haunts me constantly. If I know I have a benefit renewal coming up, or if I'm in an appeal (which can last for over a year) - just it's presence in my life stresses me so powerfully that my head crumbles. My brain fog means sentences are difficult to form coherently. My pain levels make writing and typing difficult, and I too cannot sit up.

We are both trying to recover from this horrible, horrible illness that is ME. And spending an hour each and every day trying to fill in a form to prove this made us too ill to cook, to wash ourselves... Anything. We had to have family round two or three times as much as normal because we couldn't cope, and afterwards we didn't leave the house for weeks as we had to recover. Mental energy effects our physical energy.

Can you begin to grasp the impact "just a form" had on our lives? What I haven't mentioned, is that we ended up doing both our forms in the same 6 weeks. We nearly didn't make it in time - then we would have been penalised. We had to give it to family to write up coherently. They also had to make copies of everything, "just in case".

We had to throw all our dignity out the window to complete that form, and realising just how ill we actually are, and how much care we need fought against all the positivity we try to keep in our lives. The depth of detail one has to give, and the things you have to say to cover yourselves is agonising - I honestly don't think you can begin to understand it unless you live it, day in, day out. I had to draw up memories of my most horrific nightmares to give them "examples" of times I've needed night time care - something I require every night. My husband had to recall examples of when an elderly lady offered him help because he had collapsed. You wouldn't mind giving this information if it was at least read, and then responded to with the realisation you are ill. Instead you receive refusal and have to head to tribunal.

We are fully aware that information has to be given to recieve benefits. But this process is soul destroying. And this is without even talking about the medicals. I'm not strong enough to right now.

And seriously? Don't even get me started on this person's understanding of "tired" and "exhausted". I'm sure he is still able to get himself out of bed after a 60 hour week - something we were unable to do after an hour filling in one question on that form.