Working with a Chronic Illness – Part 2: The Welfare Nightmare

When I last talked about this, I told you of the many trials and tribulations that anyone with an invisible chronic illness faces if they try to stay in the workforce.  I told you how I’d felt progressively sicker and sicker, to the point where I simply couldn’t go in to the office anymore and eventually lost my job.  Today I want to tell you what happened after that.

For the blessed few, money is not a concern.  For the rest of us, it poses an every-present peril, a perpetual sword of Damocles, threating to drop and impale us should we put a fiscal foot wrong.  Losing your job is a pretty quick way to tempt the dangling sword and once it starts to drop, you better look out because it’s hard to hang a sword back up again when it’s sticking in your heart.

Let me take you back a little way.  I have never come from a wealthy background.  My family weren’t badly off, but we weren’t rich either.  I was one of the kids who had to stay home when my class went on the ski trip and our holidays were more around the house than around the world, so I’m used to having an inextravagant lifestyle.  When I was 14, my family kind of fell apart.  It’s a long story and for another time, but save to say I’ve been living independently on and off ever since then and when all you have to live off is $50 dollars a week, you learn to be thrifty!

When I finally hit the ripe old age of 20 and decided I wanted to go to university I was living alone, paying commercial rent and working 2 part time jobs.  This continued for the next 6 years while I studied, often taking on extra catering or promotional jobs to add to the kitty.  Life is expensive, particularly here in Australia, and the bills kept rolling in faster than I could earn.  Law textbooks are not cheap and a series of emergency dental care, root canal therapy, finding I needed glasses and having to buy an iPod (no really) put me in serious debt.  I don’t know quite who authorised the decision to give me accredit card in the first place, but some darn fool did and I took full (dis)advantage of it.

With an excess of $5,000 in consumer debt, my first priority on attaining professional employment was to pay it off.  I’m proud to say I did and it only took me about 18 months.  The down side is, I’d only just started to make actual savings when I got sick.

Being sick is expensive.  Or at least, trying to find out why you are sick is.  I spent literally thousands having test after test, being sent to a seemingly endless parade of specialists, each more useless than the last, and even having a colonoscopy to eliminate the threat of bowel disease.  Of course, the medical insurance I shell out over $70 a month for would not cover any of this (apparently it was all elective or “alternative”) so guess where that money came from?  Remember those savings?  Yep.  All gone in the blink of an eye.  By the time my sick leave ran out and my employer was saying bye-bye, I had nothing left to my name.

We Australians sometimes forget how lucky we are to live in a welfare state but when you fall on hard time, it’s reassuring to know the “safety net” (aka Centrelink) will be there to catch you.  Unless you happen to be in just the situation I was in, it would seem…

The day I was told my job contract would not be renewed (which also happened to be Valentine’s Day, how lovely) I contacted Centrelink.  (I tried to phone them, but those of you who have ever attempted calling Centrelink will know this is a feat near impossible.)  I registered my intention to claim and waited patiently, relieved after my hysteria that I would not be out on my bum, but that the taxes I’d paid would support me in my hour of need.

When the application pack arrived, I discovered things weren’t going to be simple.  I’d applied for welfare before as a youth but things were now considerably more complex; I had a partner.  Centrelink consider that you are legally living in a de-facto relationship if you live with anyone you are romantically involved with.  It does not matter if you are hetero or homosexual, married, committed or even monogamous.  If you live with them and you’re more than just friends, it will affect you.  I guess if you are just friends you can be “friends with benefits” (Government benefits!)

I suddenly realised that after living with my partner for less than a year, Centrelink was now treating me like a wife.  They did not just want to know my income, my assets, my savings, but his also.  This was difficult for many reasons, none moreso than the fact that we simply weren’t at a stage of the relationship where we shared that kind of information with each other!  My partner and I had an arrangement whereby we split the bills 50/50 and spent the rest on whatever we liked.  He was trying to start up his own business, I was paying off debt and buying food.  For me to have to ask him to provide written evidence of all of his income and assets including his personal and business tax returns and the company’s BAS statement, was not just inconvenient but painfully embarrassing.

Now, you need to know that we weren’t rich.  My car was a 1996 Barina worth less than $5k and I had no assets whatsoever.  My partner had invested what small savings he had into his new business and while that appeared to be a significant amount on paper, the reality is that money needed to stay in the business just to keep it breaking even.  With his less than average income and my income suddenly gone, we were only just getting by.  Centrelink apparently felt otherwise, according to their scale, we were too well off and I was denied sickness benefits.

Simple sickness benefits aren’t the only option if you’re unwell, Centrelink also has the Disability Support Pension for people with long-term ailments.  The interesting thing about the DSP is that it pays a substantially higher amount than sickness benefits… almost double.  Both require medical evidence in order to be granted, the only difference is with the latter, Centrelink has to be satisfied that you are unable to work for at least the next 2 years.  I decided to ask my doctor.

At this stage, I had two medical professionals, my GP and a psychologist I’d been seeing.  I’d been referred to the psychologist after my previous GP could not diagnose my problems and thus concluded they must be “all in my head.”  My psychologist had, after a year of therapy, opined that he didn’t not think my problem was mental at all, and referred me to a different GP.  Both agreed that I was very unwell.

On discussion with my GP it became evident that it is not enough to be sick to get the DSP.  You need to have a medical condition that Centrelink accept as being disabling.  Irritable Bowel Syndrome, no matter how crippling, is apparently not enough to keep you from working, and Pyrroluria?  Don’t even bother, she said.  Anxiety was a symptom I was struggling with at this time so my GP suggested applying on the basis of that.  She certified that I was suffering from severe anxiety and that, in her professional opinion, I may not be able to work for the next two years.  My psychologist was happy to confirm this diagnosis, writing a complementary report.  I submitted these to Centrelink and felt confident that at last, I could relax.

It came as a rude slap in the face when Centrelink advised I would have to attend an “assessment” meeting.  I was to attend a local office where a mental health professional would examine me for 30 minutes and make a decision regarding my health.  Even in theory I find this practice outrageous.  It is hard enough for a person with severe anxiety to leave the house just to go and see their own, trusted health professionals, let alone be critiqued by a stranger.  Moreover, I wonder at the scientific validity of their findings.  I fail to see how the 30 minute consultation of a highly strung patient can compete with reports from a doctor who had been treating the patient for a year.  Nonetheless, I attended.

I remember being as tightly wound as a spring as I sat in the Centrelink waiting room.  I crossed my legs hard against each other, resisting the urge to run.  Anxiety is a perplexing condition, it makes you feel under attack even when no threat is present and I felt like a gazelle with a pride of lions closing in.  My heart was racing, my mouth dry and every muscle clenching so tightly it hurt.  I have very little memory of what was said when they called me in except that I was asked an awful lot of questions I couldn’t answer.  What was my diagnosis?  What was I taking?  What had I had in the past?  Who had I previously seen?  With all the blood in my body fuelling the thumping heart in my chest, my poor brain was running on empty and I think I actually cried for the shame of not knowing these simple things.  I felt put on the spot, examined like counterfeit tender, exposed, raw and ashamed.  Had I done enough to convince them I was feeling the way I was?  Who could say.  I tried to remain positive and hoped for the best.

Two weeks later, I received my rejection letter.  The reason for the decision, it stated in black and white print, was that I was well qualified.  With two university degree and recent employment history, the assessor felt I was capable of working.  At that moment, I could have punched him.  How on Earth does having a degree (or two, as the case may be) make a sick person better?  Would a man with cerebral palsy be able to continue working regardless of his condition, simply because he was well qualified?  I think not.  I felt discriminated against and ripped off.  I was genuinely sick, had the doctors’ reports to prove it and Centrelink still weren’t going to pay out because no doubt they have some money-saving policy that says if you can’t measure an illness, just say it doesn’t exist.  I cried a lot that day… that whole month actually.

Centrelink has an appeal process put in place by legislation.  This is to ensure the rights of the weak are not trampled by those of the giant.  I know there are centres who assist people in situations like mine but my mixture of anxiety, pride and shame prevented me from calling them.  How could I say “I was a lawyer who used to help people, and now I’m just a person who needs legal help”?  It was all too embarrassing.  I began drafting a letter to Centrelink, demanding a review and explaining why I did not believe my qualifications or experience were relevant considerations.  I knew I had ample time and was in no rush to post it, fearing that it may actually go to the tribunal and that if this eventuated, there was no way my anxiety would allow me to represent myself in a quasi-courtroom.

It is an ironic flaw in the system that people who need help cannot get it.  The realities of anxiety and depression are oft overlooked by lawmakers who do not seem to realise that truly anxious and/or depressed people will not continue to fight even when the law is on their side.  The will back down at the first rejection, the stress of an ongoing battle is simply too much to consider enduring.  I wonder how many people with mental health issues have had to go without the benefits that rightfully ought be theirs simply because they were too mortified by the prospect of an appeal?  I would wager there’d be a significant few.

The more I thought about it, the more I upset myself and, after countless sleepless nights, I decided to just let it go.  I would simply have to find another way to support myself.  Shortly after making this decision, I received another letter from Centrelink telling me again that my application had been denied (way to rub salt in the wound guys) but this time for an entirely different reason.  According to this letter, my condition was not “settled” and it was a prerequisite of the DSP that any medical condition be as treated as it possibly could be before a grant of aid would be given.  In short, because I hadn’t tested every single treatment method possible, I was not entitled to anything.  Because I had not seen a psychiatrist and taken psychotropic medication, despite the fact that this was pyrroluria and not purely mental illness, I was on my own.  By this stage I had run out of tears.  I was going to have to come up with something else.

To be continued…



  1. Betsy Davenport, PhD said,

    August 22, 2012 at 3:49 pm

    Breathing every breath with you as I read the story. It its painful to me to know that my daughter would be in your situation if I were unable to help. And she’s been sick with Pyroluria since childhood, so never got to finish school. Not to mention my own stress response that turned on the Pyroluria Gene, adrenal exhaustion, Hashimoto’a. And what this had all fine to what was once a sing marriage. Its not even a case fit universal health care in the US, because establishment members has been useless to is.

  2. Em said,

    October 13, 2012 at 12:30 pm

    Your story sounds exactly what I went through less 2 months ago.
    I also suffer from anxiety, which has prevented me from completing my degree in the assigned time, I’ve been at uni for 7 years and have nothing to show for it yet.
    I also lost my job in August, so money was incredibly tight and I was so embarrassed having to ask my live-in boyfriend and my parents to loan me money so that I could pay my half of the rent.
    I decided I had no choice but to apply for Austudy, but they rejected my application because I’ve been at uni too long. So, I appealed on the basis of my anxiety. They asked for uni results, proof of the years I’ve been at uni, medical certificates, etc which I supplied.
    They then said they wanted current bank balances, pay slips despite not working there anymore, and the medical cert wasn’t proof enough… umm.. no shit! So because of their error, I had to make another doctor’s appointment, wasting my and their time, to get a medical history and current diagnosis report.
    They finally accepted my claim, but I have a feeling they’re going to cut it off in November, when uni finishes for the year 😦 Not sure how I’m going to pay rent for the 3 months uni isn’t happening.

    Anyway, persistence pays off. It’s known that Centrelink make it as difficult as possible to get a payment, so that you’ll give up at the first hurdle, so then they don’t have to pay you.

    Please don’t give up, that’s what they want you to do!

    • October 15, 2012 at 4:01 am

      Oh Em, I feel your pain! Bloody Centre-stink… mumble grumble. Welll done on continuing to study, which is hard enough at the best of times, but particularly with anxiety. That’s quite an achievement!
      I’m fortunate enough to be on the road to recovery now, so *hopefully* I won’t have to deal with them again but if I do, yes, I won’t take no for an answer.
      Are you enrolled for uni next year? I’m pretty sure they’re not allowed to cut you off for the Summer break if you are still enrolled to study the following year. We actually studied a case about that at uni, believe it or not! The same thing happened to some young lass and she took it all the way to the High Court! No idea how she paid for that, especially since her Austudy got cut off, but she set a really important precedent. So yeah, more appeals might be on the way for you…

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