I'm sick of being sick.

I’m sick…..

I live in the UK and .......

I’m sick of being sick.

I’m sick of all the headlines that are cropping up almost daily about sickness and disability.

I’m sick of having to defend myself to people who haven’t got a clue, and don’t even want to listen, who have made their mind up – that "people who are sick are scroungers."

I’m sick of the indifference of supposedly intelligent people.

But most of all, I’m sick of people who have no empathy whatsoever.

Once again, we’ve had headlines designed to shock people, make them believe that benefit fraud is rife, and worse still, they have made fun of it.

Well, for those of us being caught up in the crossfire, with genuine illness and disability, it is far from “fun”.

The government has spouted spin that is quite frankly absolute bullshit. And yet, when I see others trying to get this rectified via the same media who have put out the information – I see nothing to dispel the headlines – because headlines sell papers. Who cares about the truth!? Not many people it seems.

And yet, everyone should be worried about what is happening. I didn’t ask to become ill. I have worked in my lifetime. In that respect I was lucky, because my illness didn’t stop me working for some years. But equally, there are those who are struck down at a young age and can never fully enter the workforce. Yet – it seems to be considered, if you’ve never worked, you’re a scrounger. Even, if like me, you’ve worked, people still eye you with suspicion and you know many are questioning your true entitlement.

But, as mentioned, we should all be worried about this because illness and disability can strike anyone – at any time. One day, you can be healthy living life to the full. The next, struck down and your world enters a tailspin.

When that happens, we’ve had a safety net in the benefits system. But today, the government seem to be using the weakest of us in society to hit with reforms that are dramatic and draconian in nature. But the most vulnerable will be safe they say….. Whereas the reality is far different, and few seem to be asking, “what about the significantly disabled and ill – not just the most severe?” We all have different levels of disability. It isn’t a one size fits all – and the current DLA allows for that flexibility.

But the government is about to remove that and make it a one size fits all – and use the “simplifying the system” mantra as the reason for it happening. However, it will mean a huge number of significantly vulnerable people will be left to fend for themselves, in any way they can – and that in turn will lead to greater poverty, and in some cases, homelessness. In fact, there are increasing numbers of stories that this is already happening. It also means amounts of help given is going to drop to a lower rate.

Not only are the people with significant disability going to lose out, the government again are trotting out figures that are simply exaggerated!

Now, many of us know that there are benefit scroungers out there, in all walks of life. And the worse of those are rightly prosecuted to the fullest extent of the law and I hear people cry “I know of someone who is cheating the system”…… okay – so do what I would do – report them, don’t moan about them. You also have to remember the ”big” headline cases are a tiny drop in the disability ocean. DLA fraud is low (between 0.5 and 1% are the official figures). Its also the one benefit that is the hardest to get, with really strict medicals to face. You do have to jump through numerous hoops - it isn't just given without a lot of effort, and notes from your doctors and specialists.

Funny how those facts and figures don’t get given out when the government wants to make a point about people’s entitlements.

We also have to remember, that DLA is a non-means tested benefit. It means that many people use it to keep in employment, but getting mobility component for example. It means they are still able to pay back in to the system. If that support were withdrawn – they would end up costing the state more! How is that going to help anyone?

Yes - I have a mobility car. I pay for it! It comes out of my benefit – a bloody big chunk of it as well…… I pay towards its insurance, upkeep and running – but I use an organisation to take away the hassle of having to do it all myself. I like being able to do that, especially when I have to plan even a task like making some phone calls……. Because of my illness. I have to plan every single second of my life these days, weighing up what I can and can’t do on any particular day. And yet, people don’t see that side of my life. By taking the decision to do it this way, its one less thing I have to worry about.

When asked, I say, “I’m fine.” But I’m never truly fine. I no longer have a life as you might know it……… but for a start, people don’t want to keep hearing about how bad my illness is today – hell, I would end up wanting to slit my own wrists if I kept saying it to people. Instead – I try to make the best of what I have got – and hope that people just see me with a smile on my face, and not the reality – because I know people don’t want to see that reality. Not really.

We have a great wide screen TV on our wall these days. – But it was a present. Up until then, our TV was 10 years old. Our computers are old, and we keep upgrading as we can, praying that they keep going as long as possible. We don’t drink, don’t smoke, and we’re lucky we have family in Cornwall, which means we can have a “holiday” once a year. If we couldn’t stay with family, the “holiday” simply wouldn’t happen, not just because of the financial constraints, but also because of my illness and disability, I need to have space and time to collapse and recoup energy. It means, even on holiday, I have to plan every single second of the day. My life is spent constantly planning these days. When to take my tablets, when to rest, when to try and flex my joints, when to use the ice packs, when to use the heat pack and each day, hell, each hour means it is never quite the same problem I face…… all of this and more is now what I have to think about. Let alone when my disease decides to hit the ground running without warning. That is when I’m guaranteed to cry, and yet people don't see that side (well except J, my civil partner).

I don’t write this because I want sympathy. I write this because I want people to understand – that many benefit recipients didn’t ask for this, and that god forbid, anyone could be in my shoes in years to come. If we don’t stand up and protect what little we have now, you might just find there will be nothing for you if the worse were to happen.

If I had a choice, I would be working today – without hesitation. I was far better off financially – I had employment options – I could choose what I wanted to do, and even if it wasn’t my “ideal” job, I knew I could keep looking until something better suited came along. I can no longer do that. It is yet another example of how my disease has taken a chunk of my life and tossed it aside. It took me a long time to accept that my life as I knew it was no longer. Now I fear that any life I have now is going to be taken and I have no idea what I will do if that happens – because I have no alternative, I have no other choice........ Neither do many others.

One day – I wish people could walk (or in my case, hobble) in my shoes for just one day. I sense that is the only way people can fully understand what disease and disability can do to your life.

But most of all, I wish people would have more empathy. It seems sadly lacking in todays society.