I’ve been sent this post by AnotherGoldfish, to host for the Carnival of differences. You might want to grab a cuppa, it’s a long post.
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I hate being on illness benefits, there’s a feeling that you are constantly being judged by other people. That you’re value is completely based on their opinion. When David Cameron speaks about people being angry at seeing benefit cheats sitting at home watching the telly while these upstanding citizens go off to work – he’s partially talking about me.
I look normal. I only leave the house a couple days a week, but when I do you’d never know something was wrong. To people looking through my window I’m a lazy arse sat in front of a laptop all day – too lazy to even clean and tidy my house! They don’t see the choices I make.
A life where I need to plan baths the week ahead because I don’t have the energy to have one on a whim. Where I pick my clothes based on how much they hurt. Where I can’t wear make-up because it takes too much effort to put on and take off. They don’t know how I traded my small efforts towards cooking and tidying for energy to write my blog. Every activity has a cost and my life is a constant game of deciding which of those costs is worth paying.
Looking back, I can now see that the problems were starting before I even left school. Between the ages of 14-18 I used to work in our auditorium after school; building sets for musicals, plays and shows. I quickly got a reputation for napping in unusual places. I didn’t think much of it, I was a busy person and teenagers are known for sleeping all the time.
While at University my mother started sending me to the doctor saying I was tired all the time. I thought she was being melodramatic. I was taking an intensive design course which required long hours in the studio, of course I was tired.
Things became more serious when I was 22. I was in the process of transferring to a UK university. I’d just been accepted and my mother and I were looking at flats to rent in the area. On the way back to the train my hip slipped slightly out of joint. It’s a really hard thing to describe: the joint starts to grind, it hurts and often you can’t put weight on it. Unfortunately in a strange town far from home I had no other choice but to keep walking another 30 minutes to the station.
The pain never left after that, in fact it spread to the other hip joint too. I hadn’t yet registered with a doctor, and life was so busy I simply didn’t have time. Instead I bought a walking stick and got on with it. Once I started university and could visit the university medical centre I was only offered lots of pain killers. After months of ever increasing painkillers, I finally found a GP who would listen. He diagnosed me with Fibromyalgia and Hypermobility. Even with the tablets, the forearm crutches I was using and the flexible working time, getting through university was a real struggle.
By this point I had great difficulty standing (a significant problem when your course requires you to use industrial power tools), or even sitting for long. So with IKEA furniture I transformed my bed into a computer workstation (unfortunately not really an option in the workplace).
After graduation I was referred to a pain clinic. There they took me off all my medication, which was probably for the best as they came with a long list of side effects. They also took away my crutches and encouraged us to stretch, which I’m sure is a good thing for most people…however as my joints are already loose this has caused me no end of trouble. I went into the pain clinic with 2 sets of bad joint (hips and heels), I came out with 8 sets (Shoulders, elbows, wrists, hips, knees, ankles, heels and thumbs) and no pain killers to help manage the pain.
It quickly became clear I couldn’t work. The pain I get from sitting in a normal chair builds and builds. I used to feel it climbing up my spine, and once it reached my chest it would even start affecting my vision. It wasn’t that my eyes weren’t working, but my brain was so overwhelmed with pain signals that it couldn’t process what I was seeing. Often I might see a car, but I couldn’t tell it was moving and so would step out into the street anyway.
In the end I was lucky, my doctor gave me a note that said I’d been ill for more than six months. So even though I was a few months past my 24th birthday I was able to qualify for Incapacity Benefit under the young person’s rules. Without that I wouldn’t have had enough National Insurance credits to qualify for any support.
These physical limitations made a huge impact on my life I went from being a proactive, hard working and busy person to someone who was exhausted and confined to a chair most of the time. I even lost the ability to do my own finances (I still know the process, but my mathematical answers can never be trusted). In the end these changes helped cause the failure of my first marriage. There were other contributing factors of course, but these changes meant I was no longer able to hold up my end of the relationship.
I was only able to get divorced because the benefit system was there to support me. It gave me the independence to escape an unhealthy situation.
In time I met someone new and we started dating. After a year we wanted to try living together. I was a bit skittish after my divorce and worried that my illness would be too much of a burden on any relationship. I wanted to give it a try before making any lifelong commitments. When you’re on benefits this is more embarrassing than you realise. With my housing benefit I was only paying £7 a week but when my boyfriend moved in I no longer qualified and my £7 was hardly an even share of the rent. I also lost my council tax benefit and, with two of us in the flat, he wasn’t eligible for the single-person discount. Not only was I not contributing, I was costing him more than it would for him to live alone. That’s an awful lot of pressure on a young relationship, and makes you feel quite worthless and beholden to someone else when you can’t pay your share. I was lucky that our relationship wasn’t affected by that, but it seems an unhealthy position to place vulnerable people in – especially when they are actually working towards a life that would get them off benefits.
Eventually we married, by now I’d stopped claim all the means tested benefits. While previously I had applied for DLA, I’d ended up in some internal review loop until time ran out on my appeal and I gave up because I didn’t have the energy to appeal. So now I just received the Incapacity Benefit because I was too ill to work.
Last year I was called in for review with the infamous ATOS. As we entered the room the doctor told us he was only doing a mental health check. I immediately stopped worrying as I don’t need the mental health points to qualify for Incapacity. Instead he did a full evaluation – he twisted my words and claimed I’d done things I hadn’t. It’s no surprise that I lost my benefit days later.
I couldn’t even face the appeal, the stress and anxiety left me paralysed. It was my husband that filled in the forms and defended my case. I had difficultly even reading the completed forms before signing them. My benefit had been stopped with no warning and we had to wait a full yet before my appeal was heard. The court appearance was like an interrogation. They asked me about actions I don’t do or have accommodated to suit my condition. At one point we were having in depth discussion about how big a bag of potatoes is! In the end I won my appeal and my benefit was reinstated and I was given back-pay to rectify the mistake…but that could easily have been too late. Again I was lucky; I had someone to support me, but if I’d have been on my own I’d suddenly have no way to buy food or pay my rent.
Even winning the appeal hasn’t given me a sense of safety though. Incapacity has been replaced with ESA, and there are significant changes for people like me. ESA has removed all the low scoring points. On Incapacity you could still qualify if your health was moderately poor across a wide-range of activities, on ESA you have one or two severe limitations (and they’ve removed the lifting and carrying all together). Looking at the ESA forms, it would be a hard fight for me to qualify – a fight I don’t have the energy to face. So once they try to switch me to ESA I’ll probably give up, not because I can work, but because I’m too ill to fight.
I’m still one of the lucky ones, there are plenty of people in worse health than me. These changes to DLA and ESA will have a huge impact on their lives. I’ve desperately needed these benefits in the past and I can’t imagine how I would have survived without them.
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