I Don't Want To Be Left Out In The Cold #TBofBTT

This blog is part of our regular Talking Tuesday/Thinking Thursday Writers' Series, but written specially for the Left Out In The Cold campaign

by Helly Copeland (@hellycopeland)

I am someone who claims incapacity benefit but I'm certainly not a scrounger, or work-shy. I am in fact a young woman who has lived with a systemic illness for the last 36 years. I was born with a condition called juvenile idiopathic arthritis (JIA), sometimes also known as stills disease.

The JIA was very aggressive, attacking all my joints and causing deformity. It also meant I faced many years ahead with surgery and medication. It's also progressive, meaning that the disease will advance in severity, complexity, or extent.

Over the years I have come up against many hurdles and frustration, not only with my disability but also with the benefits I have claimed as well as relationships.

My first experience of disability benefit was when aged 7, my parents applied for care and mobility allowance. It was turned down straight away but on appeal was awarded for a year. Every year after that, Mum would have to reapply. Every year I would have a doctor come to the house to do a medical. Every year I would have to show how I walked up and down the stairs, carry out certain tasks and answer endless questions from how I got dressed to how I went to the toilet. For me as a child it was painful and confusing. For my Mum it was frustrating and hard, especially having to watch your child live like this.

Aged 10 and because of an admin error, my benefits got stopped. It took a year of fighting to get it back. The benefit had helped pay for various things, including a cheap car, my shoes which wore out quickly due to the way I walked, increased bills from having heating on all day and needing a warm bath every morning.

Aged 18 I took the decision not to reapply for the care component. I was struggling with my disability and the acceptance of it. It just felt that I was constantly being made to prove my condition, even though it was permanent and progressive.

I met someone, we set up home together and got married. I'd been working since leaving college. However, when I was off for major surgery the mortgage company said that payment protection would not cover me due to a pre-existing condition. This put immense pressure on us because my husband was having to work all the hours to pay the mortgage. At the same time I was quite ill, was dealing with a breakdown and needed support. I reapplied for DLA Care which was awarded and helped tremendously.

Sadly the pressure of having a long term condition meant that we split up 5 years later when I was off work again through illness. We had to sell the house to pay off arrears and I faced my 2nd breakdown. I registered as homeless and the search was on for somewhere for me to live.

It was at this point I discovered other benefits... Income support, which in turn meant that I received housing and council tax benefit. This took a huge pressure off me as it meant I could focus on getting ready for the surgery that was ahead. Its hard enough when a progressive illness affects your life but having a support network means you can keep your independence.

My next relationship had similar hurdles. Moving in together meant that the most of my benefits were stopped because they were income related. Straight away this put pressure on the relationship as I was still unable to work due to ongoing surgery. This meant that my boyfriend was now supporting me financially and while he already owned his house so was managing a mortgage, the council tax, electric, gas and food bills all increased even though my money decreased.

I returned to work and felt good being able to contribute to the home but soon needed more surgery and my depression returned. Through bullying I had to leave my job. I couldn't cope with the pressure put on me by my line manager. Being on incapacity benefit meant a considerable drop in income and just because you have a drop in income, doesn't mean you have a drop in outgoings. While you cut back on social activities, you still have to pay utility bills. Being at home most of the day, electricity and gas bills increase. Despite having a progressive condition that is severely affected by cold, I don't receive winter fuel payments. As I'm no longer entitled to incapacity benefit, I don't get cold weather payments.

The welfare reform that is going on at the moment has left me feeling more scared that I have ever been. My incapacity benefit will probably go over to contributory ESA... If I don't meet set requirements then it could mean the benefit is stopped. ESA will also have a time limit of 1 year and after that because my husband is earning, I will lose entitlement completely.

Personal Independence Payment (PIP), will replace the existing Disability Living Allowance (DLA). This will again use certain assessments and conditions, ones I suspect will go in favour of reducing the amount of claimants. I'm even expecting to lose my car...

The Government want to send out the message that work pays but at whose cost? It might weed out the small minority who fraudulently claim but for the genuine people it adds unnecessary stress. I would definitely lose my independence and most certainly my sanity. The difference these benefits make, the things that it pays for and without those, my life would certainly be different.

Its hard enough living with a permanent progressive condition, but now feel like I am being left out in the cold... and probably another marriage in ruins...