I am a thirty four year old woman who has MS. I was diagnosed in January after being hospitalised because my symptoms were so bad I couldn't cope any longer. I had to suspend my studies at university - in the hope that I would be able to return in September - and claim for Employment and Support Allowance. I also had to claim for Disability Living Allowance.
Anyone who has ever claimed these benefits will know how hard it is.
For ESA I had to go through a 45 minute phone call to a call centre, at the end of which I was stressed, humiliated and exhausted. And that was only the beginning.
I was then told that I wasn't entitled to it because I was still a student. I had a letter from the university which stated that I was no longer considered a student, that I wasn't entitled to use their facilities and I was no longer exempt from Council tax.
This wasn't good enough. So in effect, for one government branch I was a student, for another I was not. How do they figure that one? And why are they allowed to get away with it?
I appealed against the decision. They upheld their original one. I appealed again. By this time it was April.
Then I had another relapse. A bad one. So bad that I could barely get out of bed. I didn't want to eat, I couldn't bear noise or light, I couldn't even talk on the phone. When I did get up I had to go back to bed a few hours later. If I made it past 7 pm that was a victory. My head felt like it was being constantly assaulted and I was in so much pain I spent all day in tears. I wondered every day how much more of it I could take.
And I couldn't even cope with opening the post.
So I missed the medical assessment I was supposed to attend.
Two months later when I had recovered enough to open the post, I rang the Jobcentre and told them what had happened, and asked what I could do. The woman I spoke to was very unhelpful and said I should write a letter and tell them what was wrong with me so it could go on the file for the next time I claimed. And she had the audacity to assume I was suffering from stress or anxiety.
By this time I had had to drop out of uni completely as I couldn't tell them if I would be well enough to return in September. (As it turned out I wasn't)
And I faced the whole battle of applying for benefit all over again.
This time they were satisfied that I was no longer a student and processed my claim, dependent on passing the medical assessment. I don't know if you've ever been to one of these but they are awful experiences.
Even if you can barely walk and never leave the house you still have to go. I had to take my son with me to lean on as support.
The doctors don't know much about MS and I couldn't show them because it's an invisible disease. There are no scars, plaster casts or broken bones to show them.
So I was shaking with fear from the moment I got the appointment till the day the result came through. Why? Because someone who knows nothing about me or the disease was about to decide whether I was fit enough to return to work. I knew I wasn't, my neurologist knew I wasn't and so did my nurse, my GP, my physiotherapist and my occupational therapist. But their opinions mean nothing to the Jobcentre. After all, what do they know? They are only specially trained medical professionals.
I was lucky, I passed and was finally awarded ESA in May. It had only taken 5 months. I was placed in the 'potential to work' category which had me shaking with fear again. Was I going to be forced into jobhunting before I had recovered?
Again I was lucky, my advisor at the Jobcentre knows what the situation and assured me I wouldn't be forced into anything before I was ready.
I still can't help worrying though.
As for DLA, what a minefield. The form is 48 pages long. It took months to fill in. Or rather, it took my friedn months to fill in since I couldn't hold a pen. It's invasive, humiliating, exhausting and emotionally draining. How would you like to specify every single thing that's wrong with you, from your walking ability to your bodily functions? The only thing they don't ask is what your shoe size is.
I half expect that next time I have to claim. Because yes, despite the fact that my condition is progressive, the DLA, once finally awarded, lasts only for 2 years. Then I will have to do it all over again.
But at least it was all over.
Except it's not over. I now live in fear of it all being taken away. Because our 'coalition' government - and I say that in quote marks because it's less a coalition than a takeover of the Lib Dems by the Tories - have decided to cut the welfare bill by focusing on ESA.
There are too many cheats out there they say.
Despite the figures which go against this, and despite all the evidence that these benefits are so hard to claim that there can be very few people who slip through the net, the Government are determined to punish me and others like me.
They announced a new medical test would be necessary to claim DLA. As if it weren't already hard enough. The sheer stress of it is enough to put many genuine claimants off. I would have been one of them if I hadn't had a friend who'd been through the process with her ex husband and was able to help me with it.
People with MS, along with those suffering mental illnesses, will be among those groups who suffer most. Simply because you can't see what is wrong with us. And if you can't see it, it isn't there right?
I now live with the fear that I will end up with my benefits cut and nothing to live on because the Government is insistent on punishing those who are most vulnerable. And then what will I do? If I push myself too hard I make my condition worse. Can you say rock and hard place?
I want everyone to be aware of this, because disabled people are forever overlooked. Their issues are somehow never as important. And the Government continues to punish us. It isn't fair, it isn't right and it shouldn't be allowed to happen. They have to make cuts yes, but not by penalising some of society's most vulnerable people.
Most everyone who is disabled will have times when they feel less of a person, like they are too much trouble to other people, like they wish there could magically be some way where they did not get made to feel a burden.
Right now I feel so overwhelmed by what the Cuts the tories announced are going to do to disabled people like myself and those worse off than me that it makes me feel like I am drowning, so I have been trying to distract myself and do other things. But it is not working so I decided to register here and make a post.
In making the cuts they have the tories have devalued the lives of ever sick and disabled person in the country including those who work. They have set a wrecking ball ready to crash into the lives of all the people who had there lives sorted, who had a place to live, a way of feeding and clothing themselves, of getting washed, of brushing their teeth, of being alive instead of just living, having a car to travel in, keeping pets, being able to afford books, a computer connection to see the world from their living room, to have a feeling of independence and being themselves and not a burden to be put in its small place.
Maybe if we tell our brief stories it will help (somehow).
I had to give up work because my employer could not accomodate me as a wheelchair user, I would find the disabled parking bays at work taken by able bodied people, the wheelchair access into the building became designated as the main access to everyone and for several months the electronic door opener was switched off and I could no longer get into the building without asking for another persons help, the disabled toilet was often occupied by people who went in there for various reasons including: being to lazy to walk to the men's toilets, needing to blow their nose, talk to a girlfriend on the phone, change into motorcycle gear, the list goes on. In term of the actual work it was a call centre and I did both call work and email support. I would find my phone log ins randomly changed, I would lose email access and my computer system would be up and down. The coffee machine I used was moved to 5 minutes wheeling away to the other end of the buildling. IAccess To Work had given the compnay I worked for over £10 000 to install electronic door openers to the internal doors so i could get around the building but other people turned them off by way of a switch on the top of the door. they did this because they did not like the doors being a bit heavier for them to push. This list goes on too.
The stress, the feeling of worthlessness and humilation, together with the physical distress meant I had to leave. I did bring a grievance which was settled (poorly) but the whole process nearly killed me and I went to counselling to sort my head out.
My ability to work was always very limited but even that has not returned and so I went the ESA route. More humiliation and feeling like crap because its all about trying to tell them what I can't do and why. When I went to the medical the fact there was a two way mirror in the waiting room so they could watch you waiting was a bit freaky.
I was given ESA only of the lucky 5% (est) and put in the work related group. More worry about what was going to happen, but it went okay 6 interviews at the Job Centre over about 7 months and then I was told that is it until 2013 phew.
Then the budget comes and I realise I might lose out later when I am reassessed for DLA. Lose out because the assessment process of being seen by a doc for a brief amount of time tells them little about me except yes I can just about pick up a coin.
I was upset about it but then said to myself okay think about it you have over two years before anything else is going to happen.
I tried to settle in to my life with my partner who has bipolar and barely hanging onto his job, which means my small income from ESA and DLA goes towards our mortgage. My sister also pays a third of the mortgage because she loves me enough to do so and she and I (when I was working) managed to keep the house by getting a joint mortgage.
Lsst year after a three year wait a very large disabled facilities grant was finally sorted and the building work was done. No more using a comode and not getting washed properly because they put in wider doorways downstairs, made all the floors level, no more stepsand put in a shower room toilet. There is even a wheelchair ramp into the garden I felt so lucky but also broken because all that work meant I was not getting better. I would never be able to walk my dog in the local woods - pathetic a want I know.
I worked for what I have, with my effort, my sister, my partner and a wonderful Occupational Therapist I finally had some breathing space and my life was set for at least two years.
No comes the news of the cuts, I will probably lose my contribution based ESA which has propped up my partner's earnings which are often less than £700 a month because of sickness. My income form DLA has a big question mark over it. Since getting on ESA I tried to find voluntery work that would keep me in the habit of 'working' but no one around here wants someone as physically limited as I am, so what hope of finding a few hours of actual work.
My sister will continue to pay a third of the mortgage as long as she has a job, but she can't do more and I would not expect it either. This house is not just home it is a disabled access and adapted home, but if my loss of ESA results in arrears to the mortgage and we will lose the house. If we lose the house there will be other consequences because we are expected to pay part of the housing grant back if the house is 'sold' within ten years.
I will never be able to get the life I have now Back once it is gone. It took 7 long years to achieve after I left my family moved away to be alive and not just live.
I already said it's like a wrecking ball is posed to smash everything to bits and even in all this I will be one of the lucky ones because I already know there are a lot of disabled people who are worse off than me.