Monday, September 06, 2010

Q.61 Please tell us anything else you think we should know about your claim

This is the actual answer provided on my current application for Disability Living Allowance for Q.61 Please tell us anything else you think we should know about your claim. This post should be read in conjunction with the part answer to Q.31 Do you need someone with you to guide or supervise you when walking outdoors in unfamiliar places in the blog Helping Hands, and the blog Page 18, Other Information IB50 form.

I was diagnosed with Ehlers Danlos Syndrome in 2004 after many years of being fobbed off and dismissed by medical professionals. After so long living with increased disability without knowing the reasons why I was relieved just to get an answer. Perhaps naively I hoped that diagnosis would be the first step towards getting better and regaining the many things I'd lost, friends, relationships, career and family. 

Day to day my life just is what it is, constant pain, dislocating joints, medications, falls, choking, incontinence, mobility equipment and many other indignities are always there but things I deliberately choose not to consider. I make jokes out of difficult situations, give mumbled half answers when people ask how I am, or just insist I'm fine even when it is patently obvious to everyone that I am anything but. I do this because to focus on the difficult things would make me incredibly depressed and to be blunt, I have enough problems already. Depression would just tip me over the edge. So instead I slap a smile on my face, no matter how hard or horrible the day. I smile because otherwise I'd cry and that just gives me a headache. I choose to be happy by focusing on how fortunate I am to have a roof over my head, to be able to see the sun shine, and to live in a country which still, just about, believes that looking after those who are more vulnerable is a collective responsibility. 

Filling out these forms has been a depressing and traumatic process for me. What I expected to be a straightforward task of explaining my disability has actually been a complex and difficult confrontation of the issues I face but choose not to think about on a day to day basis. Not only does it hurt my hands, but it breaks my heart to type the words I avoid saying out loud. That for the past six years I have fought every day; to gain an understanding of my condition, to take the correct medications, to eat the right food, to do the endless, painful, frustrating and incredibly boring physiotherapy exercises, to accept having to use a wheelchair, to learn to accept that the physical pain which is my constant companion will never go away, and will instead be joined by the emotional pain of a million tiny losses. 

It has taken me weeks to fill out this form as every time I try to answer a question I give up. How can I explain what it's like to have forgotten how not being in pain feels? That even the smallest movement can cause one or more joints to dislocate. What it's like to try and do even the simplest tasks with joints that won't hold themselves together, let alone do anything of practical value. When I dislocate my knee just rolling over in bed it's easy to swear a bit and refuse to think about the white hot pain, or subsequent tears, or the shoulder that's dislocated trying to relocate the knee, but that filling that information out on a form defeats me. All those individual dislocations and consequent lost opportunities I ignore in favour of those created, but to see them in glaring detail, not just once but the 53 different ways required by an official form is too much for me to bear. 


14 comments:

Veronica said...

xxx

Nemonie said...

"How can I explain what it's like to have forgotten how not being in pain feels?"

Just...yes.


xxxxxx

Molly Bennett said...

Excellent post. This is something I've noted so many times with constituents who are asked to fill in these forms - it makes them focus on the many negatives in their lives, when they tend to make the best of things the rest of the time.

Ironically, in my experience it's usually those who are making fraudulent claims who are comfortable "bigging up"their conditions, while those people like you who battle on against through extreme illness or disability tend to play down the whole situation, refer to "good days" etc, and sadly, often have far more trouble getting the benefits to which you are undoubtedly entitled than those who are less honest, and/or in far less genuine need.

alhi said...

I wonder are you being too emotional for a form? I can feel and understand all that you have written, but perhaps it should be a bit more cut and dry? Did you list somewhere all the medication that you take? I got DLA pre-hip and while it's a different part of the country etc and therefore different numbers claiming, I remember that I just was straightforward and factual. I'm happy to hunt out a copy of it for you if you want?

BenefitScroungingScum said...

Alhi: How are you? Thanks for that-I've filled out the other 52 questions in a straight forward factual way, DWP require it to be this way way, this was just for the 'anything else' bit. Xx

BenefitScroungingScum said...

Molly: I'm lucky to have done a degree that prepared me for a very formal style of writing so the forms are the one place I big up the bad stuff and in DWP approved language. Like I said on twitter, I'd go to pieces in front of a panel and insist I'm fit for anything!
It is an approach that is weirdly at conflict with the way most genuine claimants feel, and like you say plays right into the hands of the fraudsters...a point which seems entirely lost on both politicians and Daily Mail readers!

BenefitScroungingScum said...

Nemonie: It's a weird one isn't it!

BenefitScroungingScum said...

Veronica: Thanks Xx

Achelois said...

That sounds incredibly like my answer to that question. Except I started mine by saying that I found it depressing to keep re-applying for dla for my inherited connective tissue disorder known as ehlers danlos bla bla when it is incurable, at the age of 46 has not got better and has in fact worsened due to the wear and tear etc. and that the thought of keeping on having to prove that my condition is lifelong etc. is depressing. I was then finally after all these years given an indefinite award - until this government comes in and it seems now at some point will have to become a circus freak at a medical for someone who knows F$%^ All about our condition! Something that scares and stresses me out so much. Its like a serious invasion of privacy. I also thinks its insulting to those who diagnosed me!

I hope they listen to you, those decision makers, I wonder if they get burn out and end up just not caring or whether they care but are just as much victims of the system as we are.

The last one rang me and was so very kind it did for a while restore my faith.

Take care BG - you have been very much in my thoughts of late. I know staring one's own illness in the face when the trauma/pain completing the form has taken so much longer than they give you because of the emotional and physical drain it puts on ones very limited resources.

xoxoxoxoxoxoxoxoxoxoxoxo

Arienette said...

:(
My DLA claim is currently based in my mental health problems (although by the time I have to re-apply in January it will be a fun mix of mental and physical. Want to place bets on them rejecting me and taking away my car? Because I'm already pretty sure I'm going to have to appeal. It's too much to hope that they could accept that in the three years since my last claim I would have discovered debilitating physical problems as well.) and I still remember the crying, hyperventilating panic attacks, the crying jags, trying to stay rational and functional while trying to explain to somebody what my life was like and to fit that into an impossibly small box. Trying to explain to someone the physical stress my body went through when I had an anxiety attack, trying to explain to them the stress of being alone at home with a neighbour who threatened me when I was too anxious to step foot out my flat for months on end. Trying to explain the way my husband would have to stay awake all night some nights (after and before a full days work) so that I wouldn't kill myself, drive me everywhere because I had paranoid delusions that I would be stabbed or raped again when I was out alone...the humiliation of sitting on the floor in the aisle of Sainsbury's, shaking and crying, unable to move or speak or breathe. And that was just the depression and anxiety. On top of THAT, there was the explaining that if my husband didn't make me food and watch me eat it, I would just not eat. For a week or two. That sometimes he had to carry me to the bathroom, that he had to clean me in the bath, that he had to be aware and awake anytime I got out of bed in case I passed out, or just fell over and hurt myself and needed to be carried back to bed.
I can honestly say that of all the indignities and humiliations, all the doctors who wouldn't listen or spoke down to me, filling out the DLA forms was one of the hardest things I had to do, second only to reading about 'scroungers' in the daily rags. If we weren't so desperately in need of money, I couldn't have done it. Those forms take the most vulnerable of us, the ones who don't already have help or who will be most affected mentally by the trauma of reliving the everyday hell we go through, and they drain us. They suck us dry and leave us emotionally wrecked.
This is why, in *theory*, I agree with the option of a less form-based assessment. But the theory of a compassionate, informed and helpful interview setting is so far from the reality of what would actually happen that for the moment, I know I just have to suck it up and deal with the heartache.

Mr. Nighttime said...

"How can I explain what it's like to have forgotten how not being in pain feels?"

This is very similar to a statement I used when I was sick with my liver disease, which was "I've felt bad for so long, that I've forgotten what it's like to feel good."

While I can't say that anymore, I just read this post and cried. I wish you all the best, and if they don't give you the living allowance, then they are a bunch of soulless bastards.

This may very well be the best blogpost I have ever read Bendy.

Anonymous said...

DLA is a funny old benefit, a person who has a Bunion, if that bunion affects them badly cannot walk, walks with pain needs help going out they get DLA.

Another person might be dying of HIV but gets on with life takes a view that it's better to smile walk with pain but does walk, they would be refused DLA.

It's not how serious or what drugs you take that gives you DLA but how that condition affects you daily.

The worse thing to mention on the DLA is that you get good days and bad days, because they put down has good days, Failed DLA.


It's not funny my wife has spina bifida, she has been refused DLA all her life, my friend has a stiff wrist after he broke it, he gets DLA high rate care and high rate mobility.

Maddy said...

No.

Fortunately, I can't even imagine that at all.

I'm very lucky like that.

Wishing you luck or at least some respite.

misspiggy said...

I cried too. Felt a bit like this today when talking to a new bendy friend about what's been happening over the years; it's not fun to face up to what one's lost and what one's suffered. But thanks to you I have been able to avoid some of the worst outcomes, and was able to seek useful help before it was too late. Hope the DLA process is over soon and has a positive outcome.