Money, Health/Welfare Advocacy and Dr. Karl part one

by Claire

I am slowly reading through the latest Dr. Karl* book, Game of Knowns: science is coming… (His book titles are as daggy as his ridiculously colourful shirts, but it’s a good read.) Chapter 23 is titled Money Magnets: the Science of Economics.  I want to share with you some excerpts from that chapter as they have brought together some thoughts of mine about money, welfare and the current political situation in Australia concerning the recent budget.

Part One: Money

Money is rarely mentioned in the chronic illness blog community. Nobody wants to complain as we all know of someone worse off than ourselves. There is a stigma attached to admissions of doing it tough financially – we don’t want money considerations to colour how our friends see us, and we certainly don’t want pity from anyone. For those fortunate enough to be supported by a spouse or parents it seems in bad taste to discuss money when you are one of the ‘lucky ones’ living in comfort and without fear. But the truth of the matter is that money is of small concern in the face of debilitating illness. Most of us can afford food; the real issue is that we don’t have the physical capacity to go out shopping for it, or to cook it when it gets home. It seems tawdry to discuss money when the best things in life are free (walking, running, swimming, gardening, chatting) and we can’t do any of them. The chronic illness advocates are (rightly) putting the emphasis on showing the world what it is like to live with an invisible illness, creating awareness and hopefully motivating funds for medical research. However, having an illness that limits your working capacity has an impact on your financial situation. This is an issue that affects all of us, and one that I would like to investigate further. The following quotes (in blue) from Dr. Karl’s book Game of Knowns give an insight into this important social issue.

“The evidence is overwhelming that poverty brings with it poor health – as well as crime and other social ills. This litany of woes includes alcoholism, heart disease, suicide attempts, chronic obstructive pulmonary disease, premature death and so on.”

As I have found, there is also a correlation the other way; that being in poor health can lead to poverty. In my case, I was previously able to work for three days a week. I was able to support myself and was financially quite comfortable – any large investments such as one day owning my own house would be difficult, but I could afford a social life and the occasional holiday. When my symptoms worsened in 2013 I could no longer work. I lost my job and became reliant on the Disability Support Pension. At $22,800 per year I am far from poverty. At only $10,000 less per year than I was making as a primary school teacher the Disability Support Pension meets my needs adequately. But I happen to be particularly fortunate in the support I have around me. I don’t pay rent and my generous parents pay for my medical bills and equipment (even with the Medicare Safety Net this is still a large amount of money). I can easily see how someone living on welfare with no further financial support systems in place to help could become very financially stressed.

“Another factor is the persistent stress of trying to survive as a poor person in a hostile world. In the short term, the “Stress Response” is a powerful and appropriate survival mechanism. It sends extra glucose through the bloodstream, and increases your breathing rate, heart rate and blood pressure. All of this combines so that your muscles can work really well in an emergency. And to protect you from losing too much blood in case you’re wounded, the clotting chemicals in your blood increase and the blood vessels shrink. But in the long term, the “Stress Response” can make you unwell. You suffer an increased risk of diabetes, high blood pressure and blood clots – and your immune system can weaken. And this leads to earlier deaths.”

There were a few months where I had very little to no income. Once my paid sick leave ran out at the end of March 2013 my earnings were unpredictable as I was working between one half day and two days a week. Some weeks I would earn $75, and there were a few weeks where I couldn’t work at all. At the end of June my contract ended and I was officially jobless. It took about two months before I was mentally prepared to start the fight for the Disability Pension, and another two months before I got through all the red tape and started getting a secure, regular income. Those months were just awful. Centrelink is a bureaucratic nightmare and difficult to negotiate at the best of times, let alone when you are physically and mentally handicapped. All the while, the “Stress Response” was overwhelming. Asking your boyfriend to pay for your share of the bills is mortifying. Not knowing if you are going to be accepted as ‘disabled enough’ to qualify for the Disability Support Pension is soul-destroying. Watching your savings dwindle away and knowing that there is no way to earn more money is terrifying. It was like having a constant looming presence in my chest that pressed on my heart and constricted my throat. This was despite the knowledge that my parents would never let anything happen to me, that if the worst happened, I could move back in with them and be taken care of. (In fact I did move back home for a few months.) I couldn’t imagine the consuming fear and panic I would have felt had I not had a parental safety net, but I know that this is what many people in the chronic illness community face.

This is why I feel it is important to advocate for health and welfare systems. Not everybody has a safety-net of friends and family to help them, especially as so often that help (financial or otherwise) is needed on a long-term or ongoing basis. The chronically ill are some of our society’s most vulnerable citizens and advocating for the systems and structures that support them is important. As users of these systems and structures it behoves chronically ill people to champion welfare and health initiatives and speak out about their experiences. This seems like a big ask when fatigue is a factor in most of these insidious illnesses. We are coping with so much, to add any other consideration to our plates can seem like too much. But by sharing our stories we can shine a light on how important good healthcare and welfare systems are.

In my case, I hope my story shows the value of the Disability Pension – without it I would not be able to maintain myself as an independent person and would be living solely on the charity of my parents. I also hope to show how unfriendly and unnecessarily difficult Centrelink is to deal with – their ineffectual management systems are cumbersome for customers and staff to use, and they make the process of applying for unemployment and disability services harrowing.

If you have an opinion or a story to share, please write in the comments or post a link to your blog.

*Karl Kruszelnicki is a scientist who holds degrees in mathematics, biomedical engineering, medicine and surgery. He has also studied astrophysics, computer science and philosophy. He is perhaps best known for his weekly radio appearance on Triple J (Thursdays between 11 and 12). He has an interesting collection of brightly coloured shirts.