This is My Story… Guest Post…

Here is a story from a friend of mine, it points out some very important issues that have been swept under the carpet by our oh so caring coalition… Errm not…  🙂 … Enjoy Dxxx

This is my story

Once upon a time I was a healthy working mum with a disabled child.  My daughter has now grown into a woman who will fight for her right to be included because she deserves to be treated the same as everyone else.  There have been many times that I wiped away her tears, when she felt too tired or too ill and wanted to give up, but she always impressed me by getting on with life, no matter what obstacle was put in her way.  Incidentally she has Joint Hyper mobility Syndrome and has to wear knee supports daily to prevent her kneecaps dislocating when she walks.  We’ve always lived on a least said soonest mended basis.  There were no problems only solutions.  Whilst her condition deteriorates, her ethos doesn’t and she is happy in her life   It doesn’t matter what a certain minister would have people believe, not all illnesses are curable, not all bodies heal, there will always be disabled people in this world and to deny them will not make them miraculously vanish from view.   Unless of course, one is purporting to be an expert in all matters of the body and mind and knows more than our own experts.  Even medical experts have their own fields of expertise.  Some know a lot about a little, and some know a little about a lot.  I believe that only those who have a disability know the true meaning of being disabled.  Disability does not discriminate against its victim.  Disability is not racist, religious or selective towards a certain group of people.  We are all fair game.  We are not all born to it, some of us inherit it later in life, some of us are victims of accidents, unfortunately, for most of us, there are very few elderly people who survive a life untouched by it.

I always thought myself to be strong too, nothing phased me, I worked full time, did the shop in my lunch break, tidied up whilst the dinner cooked, studied or took work home in the evenings, and if I wasn’t at the gym, I was ferrying my daughter about to her various interests.   Then I developed Fibromyalgia.  The worst thing about having this condition is the devastation it causes.  It crept into my life and within a year, stole as much as it could whilst taking its hold.  Long gone are my job, social life, friendships, activities, and most of all money.  I went from earning a good salary to being on benefits.  Fibromyalgia stole my life.
When Debbie asked me to do a blog for her page I initially said yes, but then I thought what on earth would I write about that would remotely interest people.  I’m nobody now, I’ve became invisible

I used to be someone, I had a great job working in a legal department for the local authority, always training for higher qualifications. I had a great set of colleagues, a good salary, all in all a good life. Then Fibro came.  I would wake sore and stiff, feeling like I had never slept. I had pains in the strangest of places, crawling feelings all over me.   At first I put it down to “coming down with something”, then “overdoing it”, then it must be “ lack of vitamins”, I could hardly lift my head off the pillow. Unfortunately, illness does not give you time off from paying the bills so I sacrificed my life for work and I went to bed as soon as I got home in an attempt to muster some energy for the next day.   I’m akin with most others with this condition, in that after a couple of years of doctors scratching their heads in confusion, a myriad of blood tests, and referrals for physiotherapy and the like, its only when you get referred to someone who has joined up thinking or are lucky enough to be seen by a Rheumatologist, that you are finally given this diagnosis.

You would think that when you get a name for it, relief would wash over you, well the first answer to that is yes, and then you find out that there is a lot of controversy over whether this condition actually exists in the first place.  That is where most of the problems come from.  Unfortunately by then, you have imagined yourself out of a job, a life, and put yourself into dire financial straits and you didn’t even know you were doing it yourself with your imagination. I felt a burden to my family, the rug was pulled out from under my feet so quickly, and it sent me spiralling into such dark places I never knew existed.

Then begins the battle, I can honestly say, these have been some of the worst years of my life.  I went from being paid off from my job, receiving sick pay, to battling for Employment and Support Allowance, which can I say in all honesty was the most undignified, distressing and utterly inhumane process I had the misfortune to experience.  I have more descriptive words for it but I won’t swear.   I fought to Appeal with the help of a benefits advisor, then, despite him obtaining copious amounts of medical evidence from my doctors and specialist, the panel refused to read the reports.  The benefits Advisor said to me that he had been to hundreds of appeals and had “never experienced one so aggressive”. He said it was obvious that my legal career had been held against me because the female lawyer for the DWP had been so completely rude and utterly confrontational throughout the entire hearing, and boy didn’t I know it.  I was depressed, drained and humiliated.  My advisor appealed on my behalf again on a point of law, which was allowed, and I had to through the entire process again. A slightly nicer panel this time. I even got the chance to speak.   I was placed in to the Contributions Based Work Related Activity Group under Regulation 29, it was accepted at this appeal hearing that it would be detrimental for my health for me to work as I needed to exist within limits or my condition worsened.  I thought it was over then, at least for a while, I managed to steady myself mentally again.

Then the law changed, the 365 day rule came in.  If you had been working before you became ill like I had, and been paying NI contributions, you were only allowed to be getting this benefit for 365 days in total.  After which you were not entitled to ESA any more.  I found this out, 11months and 2 weeks into my award, via a telephone call from the ESA department, advising me that in two weeks time my benefit would cease. It seemed that having a husband who worked, and earned over £150 per week, he would have to support me.  I asked her what could I do and was advised rather bluntly, nothing, the government says we don’t have to pay you.  That was it.  In a phone call, I was told in two weeks time, I would not be getting any money. Disbelief, forced me to contact a charity that advised me to write to the DWP stating that I wished to appeal and be put into the Support group.  This is when I found out that the Support Group, is for those people who are deemed unable to work, so, based on what was said at my hearing, I asked to be put into that group.  So for 11more months, they held onto my papers.  I got them a few weeks back, advising me that to appeal, I would have had to appeal the decision of the 2nd Tribunal hearing, but now that so much time had passed, I couldn’t do this, as the time limit was eighteen months, and they had my papers when the time limit expired.  I should have been told this when advised my benefit was going to cease.  Also I could have claimed JSA for six months, and because I hadn’t been advised of that too, the time limit to claim that was over.

Well, the JSA makes no odds, I don’t have any energy to sign on, I tried doing some volunteering earlier in the year and couldn’t get in and out reliably every time they needed me, so I know working is out of the question.  I’m open to suggestions, if it was possible to find a job that you could say, well I may be able to do a couple of hours, but when, I don’t know, you will have to work around me, but I can’t say what hours I could do till I know myself.  I’m unreliable.  So now what, I’ve paid into the system for 24 years, where’s my money gone?  Can I have it back?  Apparently not.  So what happens with people like me?  You can’t get ESA because you worked for a living before you became ill.  You are now the responsibility of your husband or partner.

So, what about my mortgage payments, how do I meet my half, or pay my share of the council tax, water charges.  I need the heating on all the time, I need a lot of hot baths to ease my pains.  How do I pay my share of the gas and electricity bills?  I need to eat, I need toiletries, and I need to pay for my prescriptions.  My little car, which is my only connection to the outside world without having to rely on another person, I use it to get to the doctors and hospital.  I have vertigo so I can’t get a bus, I live in a semi rural area so buses are few and the stop is too far for me to walk to.  How can I pay my road tax or insurance?  My depression is pulling me back to the dark times when I saw myself a burden.

So that’s me now, once a striver, now a nobody, whose husband is paying the bills.  We’ve had a few laughs about it, well my husband has, I’m usually smiling through gritted teeth.  The gas and electricity company don’t care where the money comes from.  I’ve been made a dependent.  Even a child dependent gets recognition.  Am I even included in the unemployment statistics.   I have to have my basic needs met somehow.  I still need my prescriptions, I can’t do without them.  I’ve had my dignity stripped from me. What happened to equality, when a disabled person lives equally with their peers.  Don’t we have the Human Rights Act to rely on?

I’m lucky enough to be in a loving relationship.  We all know the divorce statistics.  I worry about those women or men who are now in the same situation as myself, not in a loving partnership, as the saying goes “when there’s no money love goes out the window”, what about duress and abuse, it will be going on more and more, one partner will have power of the other, and add disability in to that mix. Someone who can’t defend themselves.   It’s wrong, we’ve all seen the results of people exploiting others, this is an open invitation to the unscrupulous.  My husband says much as he loves me, why should have to pay for me?  Just because he married me, its not the same as when you make the choice to have a child and decide whether to stay at home, the word “choice”, is always prevalent.  I have no choice, but he has a choice, he either picks up the tab or pulls out of the partnership.  He’s now paying the joint mortgage, if he doesn’t. We have no home either.  I was recently looking at a Fibro group webpage and there was a distressing message from a girl asking for help and advice, because her mother with Fibro had been taken off ESA under the 365 day rule and her mother had returned to her abusive ex partner because she didn’t have the means to live otherwise.

Now we have the DLA changing to PIP, the government expects to be reducing claims by 30%.  When I previously worked with solicitors and the local authority, there were many cases of people being exploited by friends and family because their disabilities enabled them to claim benefits.  What happens to those people when they have no financial use to anyone, that’s all they had in the first place.  Who is going to pick the tab up for their basic needs.  The government must think that lives are cheap.   As long as the aim to reduce payments is being met.  It must be worth the cost.  Is it?  After all, the government say that’s what was asked for, the benefits scroungers to be caught, is that not what this is all about.  Helping those of you who work, why should someone like me, who doesn’t work get any recognition for the years I have paid in. Am I a scrounger, I certainly feel like one, like a child who waits for pocket money when they’ve been good all week.  Those of us who are now at the mercy of others, that is after all what the country wanted, us on our knees.

There is now in the media, a real negative view being pushed towards people claiming benefits.  It’s everywhere.  However, I noted how few column inches are dedicated to the fact that even those in Parliament have admitted to claiming benefits at times in their lives when they needed some support.  Why so shy, is it because some of them actually claimed benefits they didn’t financially need.  They bend the figures to make out that they are winning against the scroungers, well actually, its putting disabled people in danger, people are dying every day.   Its now seen as a disgrace for people  to seek the same help when they financially do need it.  There’s no escape from the benefit bashing stories of people living the high life, sitting in their rent free houses, watching their huge TVs.  They’re laughing at everyone going out to work, when the only work they do is having another child to add to their already massive brood, all in the name of the extra £13.40 per week in child benefit.  You do the maths.  People are being made redundant all the time, someone in a job for years, is now being ridiculed as a benefits scrounger, but you are all only a few steps from the same fate.

What most of all astonishes me, is that people think it must be true because it says so in the newspaper and on the TV.  And we all know they never tell lies.  Common sense tells us that if we really want to be knowledgeable on a subject we get the facts right, right?  Well actually no, I was just assuming that everyone is the same.  There are an overwhelming amount of people willing to be spoon fed data by the media, and to report it back in argument, actually taking the facts to be gospel.  They are the enablers, that means that buying in to the propaganda, enables others to carry out deeds that otherwise they would be unable to do.  So ask yourself.  Is this what you meant when you wanted benefits cheats caught.  For disabled people to be worthless, depending on the goodwill of others for their basic needs.  Don’t they deserve to live independent lives, to be on the same footing as others.  Is it worth turning a blind eye?  It will be too late when you hear another woman has been killed by an abusive partner, she had no money and became utterly dependent on her abusive partner, but because there was no money he became more and more abusive till he killed her.  There are a few casualties in every war, but this is not going to be just a few casualties.  Ask yourself if this is what you wanted.  You could email your MP right now to tell them to stop the benefits cuts.  The cost is too high. There is always a better way.

So say we all… Dxxx


5 Comments Add yours

  1. Dee says:

    thank you so much for posting this, in some ways your experience has mirrored mine so much, I think these sections can almost sum up the life of someone who finds themselves chronically ill. Whats that saying “Walk a mile in my shoes”.

    “The worst thing about having this condition is the devastation it causes. It crept into my life and within a year, stole as much as it could whilst taking its hold. Long gone are my job, social life, friendships, activities, and most of all money. I went from earning a good salary to being on benefits. IT stole my life”.

    ” I felt a burden to my family, the rug was pulled out from under my feet so quickly, and it sent me spiralling into such dark places I never knew existed”.

    and here re working, and being willing to try,

    “I’m open to suggestions, if it was possible to find a job that you could say, well I may be able to do a couple of hours, but when, I don’t know, you will have to work around me, but I can’t say what hours I could do till I know myself. I’m unreliable”.

    It seems all eyes and ears are turning away from the fact that people like us exist, we are not spongers, are not Lying.

    Keep strong, keep fighting, hug your hubby ,and here is a hug from me., I am alone and also feel like I cannot take anymore. I have yet to experience this, I am just at the start with the forms. and trying to find a one bedroom, but cannot concentrate on both, so for now its the forms. the fear of it is overwhelming me, I know that these hoops they want us to jump through, all while trying to show that yes we can sometimes make tea, carry our bag and coat, an empty box, a pint of milk or go and pay a bill etc but that also means, that the act of doing these things alone is much harder than it should be, and that doing them will affect us badly leaving us unable for days at a time to do anything else. Unable to do the basic things that we used to do without thinking.

    Thank you again for highlighting the plight of those like us, I really hope and wish things get better for you, for all of us xxx

    1. Patricia says:

      Dee, if you need some support please pass your details on and I will help if i can

  2. Marion says:

    Thank you so much for posting this, it must have taken courage&a lot of your valuable energy. I so identify with this and in so many ways, one is that I too was “healthy”(reasonably)with a disabled child until about 9 years ago and now have Fibromyalgia, Osteoarthritis(worsening&had 1 hip replaced at age 48-big shock)Scoliosis, Asthma, High Blood Pressure, Underactive Thyroid&more! Too tired and done in after hard weel last week to put togther what else I want to say, maybe another time, but thank you again, I so understand where you are coming from.

    1. Patricia says:

      Thanks for your kind comments, hopefully things will get better soon

  3. jo says:

    This is about to be me in three weeks Im appealing but only as the job centre advisor took one look and said why u in work related even her words were they have simply assessed u have a partner get her off benefit forget I worked before HMS took over I get on with it now dont bog down the NHS when there is little they can do but your right the DWP is a joke and Im now another dependant mother

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