An Open Forum for Disibility and Invisibe Illness Awareness

Posts tagged ‘Multiple Sclerosis’

Disability awareness by @HCAuctionsUK

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. 

I am on my way to recovery now, but it’s been a long road – all year – and it’s not over yet. But I constantly have to justify myself because to the man on the street I look perfectly well. I have no idea how to change that but I can try to make people aware online. One of my problems is numb hands. I cannot control my fingers as well as everyone else. As a consequence I make a lot of mistakes while typing. I was always good at English and I hate bad spelling and grammar, yet I now have to deal with it everyday. I spend a lot of time correcting the mistakes I’ve made because I hate making them. It’s dull and extremely frustrating.

So I decided that one way to make you all aware of just a fraction of what I deal with everyday, is to stop correcting them. Only for a day, I don’t think I could bear it any longer than that.

On Friday, October 15th, I will not be correcting myself on here and on Twitter. I hope that it will give you some idea of what it’s like to be me.

 And these sites are just a few that everyone should read. They are sad, angry, frustrating and eye opening. Which is why they need to be read.