Tuesday, 31 January 2012
You may remember I was apprehensive about 2012? Well, a month in, I'm actually just torn. There are some excellent things afoot, but at the same time I'm being pummelled by a level of anxiety that threatens to defeat me if I'm not careful and conscientous. I seem to be feeling sick a lot more at the moment and I'm not sure if that's excitement, nerves or just general biliousness...
For the last year I've been doing some volunteer work as a benefits advisor. I work through the local mental health service providing expertise to other people in need of the welfare state. It's not quite the job I dreamed of when I was a nipper. In fact it's not even the job I dreamed of in 2010 when my trauma therapist referred me to an employment support service. Fearing the kind of money grabbing disinterest that A4E and its ilk offer, I went along sullenly to my first appointment. It was at 10am and I'd had to wrestle with getting up, getting dressed and out of the house and then wrangle with a bus at the tail end of rush hour and my anxiety levels were epic. And all to attend some pointless bullshit appointment about work. I mean, who the hell would hire me? Not only do employers have 2 million others to choose from in a recession, I didn't even have any work skills since I'd given up make up artistry and had been badly affected again by chronic fatigue so couldn't stand up long in retail type jobs. Why was anyone bothering to try get someone like me back to work? I was done. The scrapheap beckoned at 31 which seemed like the best of bad options for everyone involved.
I was greeted by a kind man who wasn't an employee of any of the big employment providers, but the NHS. The organisation specialises in helping people with long term mental health conditions back to work. I still thought I had as much chance of getting back to the workplace as I had of growing a third head, but I liked my lovely advisor so much I went along with his suggestions because I didn't want to let them down. I tried a few things and failed and was secretly thrilled to have my uselessness reconfirmed so that I could just go home and lock the door and get on with being me. Then in December 2010, my advisor sent me on a course about giving benefits advice. He'd quite reasonably noticed that I had a good knowledge of the welfare state due to using it, a fairly good brain for the minutiae of benefits rules and an excellent knowledge of all the ways life can go tits up enough to need benefits. I just saw something that I had to attend so as not to get told off. I staggered along on the day, had an almost complete meltdown on the Wandsworth Road at 9am in amongst the commuters and arrived shellshocked and ready to mutiny.
Within about 20 minutes, I was so distracted that I'd forgotten i was supposed to hating this and no good at it. I was utterly transfixed (and not just because I discovered at this point I could claim DLA) and the whole day of details and rules and 'passporting' flew by and I was fascinated. So when my advisor mentioned a collaboration with the NHS and the local mental health trust to become a benefits advisor, my interest was piqued. Next thing I knew I was getting up in the mornings and doing useful stuff one day a week. It took a while to find my feet. Racked with anxiety I used to lurk outside rather sit in the waiting room and have to talk to anyone if I was early. I avoided having to use the fax machine or the phone in case I got it wrong and starting panicking. I kept telling my supervisor it was very warm in our little room because even though he seemed like a lovely man, I was too terrified to sit in the room alone with him with the door closed. I struggled to get in on time for 9.30am, often having to cancel whole days or coming in after lunch as my mind played tricks on me and my body insisted on expelling its contents in solidarity.
But the one thing I never found hard or nerve-racking was filling in the forms and dealing with the clients. I rediscovered my skill at writing very very fast and oddly neatly that hadn't been called upon since my first year of uni. I found I was excellent with the jargon and benefits-ese and it became apparent that the many bad experiences in my life and the unrelenting grimness of the last as near as damn it decade gave me an affinity with clients undergoing a tough time and an ability to ask the right questions. Despite spending eight hours a week sitting listening to a litany of despair, misery, abuse and bad luck, I almost instantly found it life affirming because I could help them. I could help them to access much needed money, take back any amounts of control over their chaotic lives and I could make them feel valued by listening, taking them seriously and offering them a helping hand when everyone else seemed to be making their life harder. I could also help myself understand that what had happened to me was just too much for one person to experience and stay sane and rational and that I wasn't weak or a failure. Not only was I mentally ill, I was reacting in to events in a way that when these people in my office did too I thought was utterly normal.
I'm sure that this new insight in my own mental state is what allowed me to tackle my latest round of therapy better than before. And that this therapy is what's allowed me to thrive at work. Exactly a year after I started there I feel confident in my workplace, even braving the photocopier all by myself last week. I'm happy to talk cases with the social work team and I don't mind them knowing i've had mental health problems and used to be a client there. (It just means I won't stand out if I have a panic attack at work I guess.) i'm happy to have the door shut wevn when I'm alone with the clients. I've felt able to apply for a paid job and next week I start another period of work experience with the local council to help me expand my skills as oddly they are worried I'm too specialised. It's the opportunity of a lifetime and things are very positive. So why I do feel like the end of the world is nigh?
Well, firstly sheer practicalities. Will I be able to manage two whole days a week working and still be able to do stuff like do the shopping, washing, cooking and cleaning or will my fatigue go up a notch and I'll find myself barely able to dress in clean clothes and eating dry porridge oats to avoid the washing up? Will my anxiety allow me to start working in a big building full of people I don't know without me melting down spectacularly? Can I cope with the travel involved in this job role? It'll all be within the borough I live in, but even knowing it's probably the odd half hour bus journey to new places with someone else is hanging over me like a dark cloud and I'm preparing my excuses in advance. The people I'm going to work with know I'm ill, know my background and deal with people like me as a job and yet I'm still worried it won't work and they'll judge me negatively.
And if they don't judge me negatively, what about the great unwashed? So many of them already thought I was a liar, a scrounger, a pathetic weak piece of shit living high on the hog's back of their taxes who should be pulling herself up by the bootstraps when I was struggling to get out of the house at all. How will they react when i'm trying to work two days a week? That kind of hatred and criticism makes me just want to retreat back into the house like a nervouse turtle and never come out ever again. It also eats at my hard won self belief and I start thinking again that I'm not really ill, I'm just a failure who doesn't try hard enough.I find it hard to revel in the achievements that take me one step back to being 'normal' and just worry that each time I force myself into doing something just once in a week that I've said on my forms I can't do, I'm swinging the lead. I put unrealistic demands on myself and forget to pace myself and go at my own pace and remember that being able to do something once in a while doesn't make you fit for full time work. I panic more and this exhausts me and make it harder to control the extreme fatigue so that when I crawl to bed early in a stupor of exhaustion, the flashbacks and nightmares are harder to keep at bay and I sleep badly, waking tired and distressed and panicked and get quite the vicious cycle going.
Just as well I'm not going back to full time paid work huh? Just as well there's the safety net of the welfare state to support me and protect me huh? Except that precious safety net is getting smaller and smaller and further away. I'm due to be migrated from the calm waters of Income Support to the shark attack of Employment Support Allowance later this year and enter the roundabout of proving you're unfit to work even though people in comas or terminal illnesses are being found able to get up and do the 9-5. People on ESA get stuck on a roundabout of fear and reassessment and see those buff envelopes coming through the door from the DWP as akin to the judge bringing out the black hanky in death penalty trials. All security and sanity is abolished once ESA comes to your life. Add in the proposed to changes to contribution based ESA and the destruction of DLA proposed under the Welfare Reform Bill and I feel utterly panicked that I'm between a rock and a hard place that I will fail at this new work opportunity and end up unsupported by the welfare state, destitute and mortally wounded by the irony of a benefits advisor being brought down by benefits...
I'd say I'm going to try not to panic, but that's my day to day life anyway. I'm going to approach the whole thing with tentative steps, going very slowly from one tiny achievement to another and setting my bar low. I'm going to take a leaf out of the turtle's book and try to pretend the outside world isn't happening and that it's all sunshine and kittens and fake it til I make it since that's what's been working in the world of work until now. And I'm going to keep reminding myself how lucky I am to have fallen into a situation where I have employment support and work with people who understand the difficulties I'm facing, because without those things, I would still be on the scrapheap and not thinking about ever being able to work again. And not a smidgeon of stick from the government would change that fact. After all you can't bully ill health away again.
Tuesday, 17 January 2012
Last year, I wrote a piece about what life was going to be like for me in 2012. I'm republishing it here with an update after the runaway success of the Spartacus Report campaign which followed on from the Hardest Hit marches of 2011. Sick and disabled campaigners including Sue Marsh, Kaliya Franklin and Dr Sarah Campbell raised money, issued Freedom of Information requests and put their health at serious risk to expose the fact the government had lied, disseminated and abused their own processes to try and force through changes to Disability Living Allowance. Up to 98% of respondants, including Boris Johnson, oppose the change from DLA to Personal Independence Payment.
You can read the report yourself to get the details about money and economics. I'm not good with stuff like that. But I know a lot about life on benefits. That I can tell you about. It's a pretty bleak one and it's been even worse the last few months with a non stop drip drip of stories from the Coalition and the Department of Work and Pensions press office about 'scroungers' and fraud and the twisting of stats and reality to suit their agenda. We sick and disabled haven't just been fighting our usual challenges, we've been fighting for our reputations and our entitlements too.
But last week, the tide started to turn. The Responsible Reform report was the top trending item on Twitter under '#spartacusreport'. The Daily Mail published pro-Spartacus articles. Sue went on Newnight to debate Chris Grayling. The Lords defeated the government on 3 amendments in the House of Lords. The Express is printing unbiased articles about disability. Today's vote on PIP is on the BBC news channel. Flying pigs are not as rare as last week. Things are changing.
In fact things are changing so much that if the Lords cannot pass today's amendment according to this 'test yourself' piece on Benefits and Work, I'll lose my DLA completely. A third of my income will be gone in one sweep of a pen and all the things that add colour to my life to stop it being a picture of simple grey depression will be gone. Along with my very real chance to get better and get back to work. Some people see that as me being demanding, spoiled or the sole cause of the deficit or that most people on benefits are fakers. I think that's horseshit, but my previous post explains it better so it's below: