Working With A Chronic Illness – Part 4: New Pathways

Accept It.

The key to dealing with anxiety is acceptance.  If you fight it, you will only make yourself more anxious about it and then, ironically, should you feel even the slightest hint of anxiety, you feel more anxious… about feeling anxious!  Humans can be very silly beasts sometimes.

Dealing with a chronic medical condition is hard enough at the best of times but trying to attend work when you’re sick is enough to make anyone feel anxious.  Once again, the secret to overcoming it, is acceptance.  Now don’t get me wrong, I’m not saying if you have epilepsy and you “accept it” that your seizures will miraculously stop and life will be peachy, I only wish it were that simple.  What I am saying is that if you, like me, have a condition that makes you feel sick sporadically and that makes you worried that you’ll be unable to work, then accepting your condition and your limitations may well be your ticket to freedom and happiness.

After a year of therapy with my psychologist and several months working with my biochemical doctor, we decided my gut problems might never go away entirely and although I could wait for my anxiety to subside before I went back to work, I wasn’t going to have any income until that day.  In addition, we agreed, the line of work I had been in was a very high-stress environment and possibly wasn’t suited to me.  The very notion of having to back to that job was making me feel anxious in and of itself so my therapist suggested looking for “new pathways” that suited my needs rather than trying to squeeze a piece of myself into someone else’s jigsaw puzzle.

So, what next?

So what next?  A different kind of law, perhaps?  It was what I was trained to do after all.  It seemed a waste to throw away 6 years of full time study (and a $30,000 HECS debt too, thank you very much Howard Government) but I wasn’t sure.  Law is, by its very nature, confrontational.  Law is generally about conflict and the clients who come to us are in states of high emotional distress.  Being the person I am, I can’t ignore that.  I want to help them.  I want to go above and beyond, bend over backwards and extend myself to help them, to ease the suffering.  This unfortunately at legal aid, resulting in me doing far too much overtime, feeling quite devastated when the cases weren’t successful and being especially crushed when my clients became angry and accused me of intentionally not helping them for whatever personal reasons they imagined I had.  My therapist said to me, “It sounds like you’re just not suited to being a lawyer.  That’s not actually a bad thing, you know.”

I tried to think what other kinds of law there might be that didn’t involve emotional clients.  Barristers didn’t have to deal with clients but they did have to deal with scary judges and even scarier, court.  It’s kind of funny; when I originally set out to study law I thought I would be a crash-hot barrister because I was a fierce and fearless public speaker, confident on stage and very quick at picking flaws in testimony.  But 7 years later, after 1 year in practice, the thought of attending court terrified me.  All of a sudden, it wasn’t about striding past the lectern, gesticulating wildly to a rehearsed and flamboyant speech about what we, as humans, can possibly ever truly “know”.  Now it was about real people’s lives and if I stuffed up, it wasn’t just my shame that would occur.  My clients could lose their homes, lose their families or go to prison.  The pressure was intense and I confess, I simply couldn’t handle it.  In a nutshell, I cared too much.

At this stage, my body was giving me grief.  Daily nausea and IBS do not make for a happy worker and trying to imagine a workplace where I wouldn’t be bothered by it was virtually impossible.  I decided to search for options working from home.

Working from home…

Anyone who’s ever tried to work from home will tell you, it ain’t easy.  First, there are no real opportunities.  I mean, what are you going to do?  You can set up your own online store if you have the know-how but so few of them are profitable, it’s a huge risk and you generally need financial backing to get started (I actually sell quite a lot on eBay but it’s only ever made just enough revenue to scrap by).  You can contract for someone else, there are typing jobs that can be done at home but you will need specialist equipment and software and the pay is low.  I actually decided to give that a go as I type fairly quickly, but after filling out countless application forms and online tests, never heard back from any agencies.  I decided this illness was my serendipity.  I had an opportunity to change my life, to start afresh doing something I loved.  Ok, so I’d studied law, big deal.  I never signed a contract saying I had to be a lawyer (and any lawyer would tell you contracts can be broken anyway) so why spend the rest of my life being miserable just ‘cause?  What did I love?  What was I inherently good at?  What would suit my needs now and forever?  Then it hit me; writing.

I originally studied law not because I actually have any interest in law (I don’t) but because I had a gift with English and I wanted a guaranteed income from it.  Let me tell you now, if your parents ever tell you to study law because “you’ll always have a job at least” (thanks Mum) do not listen.  In fact, as I graduated, two other universities in Adelaide were cranking out law grad’s like a catholic rabbit makes babies and my grades were not the best.  To add fuel to the fire, I happened to complete my studies right smack bang at the crescendo of the Global Financial Crisis and also happened to possess the dubious honour of being a woman of childbearing years… read: risky.  I applied for literally over a hundred jobs, interviewed for about ten and still it took me twelve months to get my first job in law.  Actually, it’s a bit of a funny story… I eventually got that job not because of merit or even because I applied for it but because a man abused my father on a holiday in Borneo and then wanted to do him a favour to make up for it.  Turns out he was a lawyer, so you can put two and two together…  It’s like an episode of Seinfeld!

Anyway, the point is, I like words.  I am a wordsmith (or so I like to think).  Other people out there were “writers” so why couldn’t I be one too?  Now was the perfect time to try.  I had time on my hands and my hands on my keyboard.  It might not happen straight away, but nothing ever happened without somebody starting it.

I’m not cut out for novels (short attention span) and I’ve never been good at fiction (lack of imagination) so I decided to start a blog.  I wrote my political opinions, product reviews, film critiques and quasi-comedic commentaries.  It was a bit of fun but it wasn’t going to draw an income.  I needed an actual writing job.

How to be a writer

I wish I had the answer to this question; I don’t.  I guess in a way I do… just write!  But of course, the getting paid to be a writer part, I’m still kind of stuck on.  Ok, so that’s not entirely true.  I am actually a writer now and I do actually get paid.  BUT I only have one client and I get paid peanuts.  So how did I get my first gig?  Well that’s the hard part.  Waiting for your first big break can be what puts most people off freelance writing and I’ll be honest, had I not struck it lucky, my patience would have run out too.  Being a sickie and something of an internet-freak, I spend a lot of time on Facebook.  And websites.  And forums.  *blushes*  Yes people, I am a nerd.  Now that we have that out of the way, we can understand how it was that when one of my favourite personal finance websites posted in my Facebook stream that they were looking for guest writers, I pounced.  Within 10 minutes I’d penned an extensive (rambling) application letter explaining my history, my health and my ambition to write.  I don’t think I even proof-read it, I just typed and clicked “send”.  Within a day I had a response, they’d love to have me, and before I knew it I was negotiating a contract to write regular articles for a prominent savings site.  Not everyone will get an opportunity like this and I must say, finding the next one has been much harder than I thought (editors it seems, will simply ignore your emails if they are busy or don’t like you).  But a start is a start!

But what about the money?

Writing a few short articles a week does not earn me much.  I am not Sarah Wilson or Mia Freedman with an entourage of sponsors and followers.  I have neither the credibility nor fame to charge high prices.  It is something I am building upon gradually, week by week my portfolio grows and one day I hope my name will be one that a few learned readers will recognise.  In the meantime, I have to do something else to make a crust.

I extremely lucky that my partner owns his own business.  Well, it’s a mixed blessing actually because it means he’s extremely busy and if he worked for someone else, he’d be making double and probably wouldn’t need me to work.  But c’est la vie; we play with the cards we are dealt and I choose to consider this an opportunity, not an obstacle.

When I became ill and was home all day it seemed silly that I not help out with the business.  I’d previously worked in an admin role and knew vaguely what needed to be done.  I started keeping a register of all incoming mail, date stamping everything and the like.  I drafted procedural documents, office policies, employment contracts and more.  As time went by and my health improved, I was able to come to the office and assist with more and more things, eventually taking over the invoicing and the accounts.  I became the self -proclaimed “administration and finance manager” and excelled in my role.

Having a job to go to can feel a burden when you are feeling really sick but it can also be extremely rewarding.  Even a relatively banal job like admin can be self-actualising in that you are actually doing something with clear and obvious results.  It may sounds silly, but I get a little kick every time I post out an invoice or deposit a cheque.  And what I love about business is that while problems do arise from time to time, it is not intrinsically confrontational.  Most people I deal with are friendly and happy and trying to make an effort to get along.  We are focused on building relationships and construction systems (it’s an engineering business) not destroying people and cutting them down.  I’m confident in what I do and I know if I feel wretched I can generally still hunch over my desk and get my work done without over-hyped clients thinking I’m not really listening or managers breathing down my neck about billable hours.

Onwards and Upwards

While I write about money to earn money, it’s not the love of my life.  It’s not my true calling and it doesn’t fulfil me spiritually.  Further, writing for someone else is a good gig in that you get paid regularly, but if the business isn’t in your name, you can never build upon the reputation and more importantly, the profits.  I don’t even own the intellectual property rights of my own articles!  I decided to start a different writing venture… one I could update when I felt like but knew wouldn’t be too mentally demanding to require research for each post.  I started “Get Well Or Die Trying” as my own little way of telling the world (or whoever would listen) about my stories, my experiences and, of course, my recipes while I was getting better.  Every time I write I feel better and I hope, my dear reader, that some of what I say can make you feel better too.

I’m not sure what the future holds for my career.  One thing is for certain, it looks good.  My partner has recently decided to expand his business to include an online shop and I, with all my eBaying experience and the anally-retentive attention to detail (typical undermethylator), am to be the e-commerce manager.  It’s a little bit exciting and a little bit scary but working for the “family business” is kind of like being your own boss and I’ve come to the conclusion that if you suffer an invisible chronic illness, that’s the way to go.

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Working with a Chronic Illness – Part 3: the Insurance Debacle

Last time I spoke to you, I told you how I’d become sick and lost my job, tried to make a welfare claim from Centrelink and, despite reports from two medical professionals, had been rejected because: a) I lived with my partner (even though we weren’t sharing finances) and b) my condition wasn’t “settled”.  I’d like to now tell you how it all got better but unfortunately, that’s not what happened.

Having been rejected for my Centrelink claim, the panic began to set in.  What was I going to do for money?  How would I pay my rent?  How would I buy food?  And more importantly, how would I pay for my myriad of doctor’s appointments and medication?  Sucking up my pride, I raised the subject with my partner.  At first he was furious with Centrelink.  How dare they assume he should support me just because we are living together?  I reasoned that if they did not have that policy, many couples would take advantage of the system.  He seemed to accept that but then became annoyed with me.  Why had I let myself be fired?  How sick could I really be?  Why didn’t I just “tough it out”?  He opined that I’d never liked the job or even working at all, and this was all an elaborate ruse to get me to stay at home on some kind of lovely never-ending holiday.  Anyone who’s ever had an invisible chronic illness will know these accusations.  Chronic illness defies the usual pattern: get sick, get diagnosed, get well.  When doctors, in whom we put so much faith, say “we don’t know what’s wrong with you and we can’t make you better” the people around us, trained and lay alike, start to get suspicious.

This arguing went on for some time, putting a huge strain on our relationship, but to his credit, my partner said he would not see me out on the street.  We came to an agreement, I would pay 1/3 of the household costs until I was back on my feet.  Not daring to push my luck, I agreed.  The only problem was, with an income of zero, how was I going to pay a third?

Things went from bad to worse.  Shortly after my Centrelink rejection I received a letter from my employer.  The letter not only confirmed my dismissal but added that I had actually been overpaid in excess of $1,000 and that I would have to pay that back immediately.

Through tears of humiliation, I emailed my old manager.  A man I’d previously had a fun and friendly relationship with.  I explained my situation, that I had no income, that I couldn’t even get benefits and that I was unable to pay a cent right now but would be willing to pay by instalments.  It is a sickening feeling when you know someone who has previously liked and admired you, pities you.  I went from being a capable, confident and attractive colleague to being a charity case.  The only difference was that our clients were probably better off than me as most of them received Centrelink payments!

Word soon got around of my demise and I received a few kind and thoughtful emails from my co-workers, one of whom suggested I might be able to claim income protection insurance through my superannuation.  A brilliant idea!  It had not occurred to me.  I’d never taken out an income protection insurance policy (and if you are in any kind of employment right now, I strongly suggest you do so immediately!!) but I was a new member of the superannuation fund for South Australian Government employees and part of their plan was to automatically include all members in an income protection insurance plan.

Elated, I downloaded the application form and began filling it out.  I discovered I already had all the documentation I needed from my doctors!  I checked the time periods and found that I had been a member of the fund long enough to apply and that if my application was accepted, I would be entitled to 75% of my salary for up to two years or until I was recovered.  I was thrilled!  75% of my salary would easily continue to pay my half of the bills and the relief of knowing I could take my time and heal without worrying constantly about money meant I would most likely get better sooner.  I was confident my application would be accepted, after all the insurance was intended to cover acute instances of illness, not “settled” conditions, like the Disability Support Pension I had been denied.  I posted my forms off and waited, quietly happy that my problems had been solved.

Then I got the rejection letter.  My application for income protection insurance, it said, had been denied due to “legislation”.  It did no further to explain what legislation, which provisions or why.  There was however, a name, email address and an invitation to contact them should I have any “further inquiries”.  I typed out my email, a polite enquiry as to which sections of which act/s were applicable and a reason for the decision to deny my application.

That afternoon my phone rang.  I can’t really explain what it’s like to be anxious to someone who hasn’t ever had the condition, but the notion of answering a phone to a private number when it may well be about something very serious, is terrifying.  The adrenalin racing through your body means you’re barely capable of constructing a coherent sentence and the likelihood of remembering anything that was discussed is slim to none.  Plus, being a lawyer and all, I prefer email over phone calls… I just like to have everything in writing.  I let it go to voicemail and listened to the message.  It was the lady from the super fund asking me to call her back.

I waited until the next day and wrote another email.  I thanked her for her call, apologised for missing it and asked if she could please reply to my query by email as I suffered from such severe anxiety at this time that talking on the phone was very difficult for me.  She did not reply.  I waited another week and emailed again, forwarding the previous message, and asking if she could kindly answer my questions by email.  Still nothing.  Two more weeks passed before I sent a third and final email asking if there was a reason no-one could email me?  This was a service for people who were unable to work due to whatever illness and I was surprised they weren’t more accommodating of each particular ailment.  If I was in a wheelchair, I said, they would hardly ask to me to walk up stairs to an interview room so why, with crippling anxiety, the very reason for my application, would they ask me to talk on the phone?  Still no reply.

At this stage, I was fuming.  I went in to law in the first place because I have a strong sense of social justice and this reeked of discrimination to me.  They knew I had anxiety, that was the symptom preventing me from working!  They knew I was uncomfortable with phone conversations and they knew how to very easily contact me by email or, heck, I would have even been happy with snail mail.  Society still has problems accepting mental health problems.  Those who have never had it or seen it first-hand seem to think its sufferers are either making it up, exaggerating or are “crazy”.  I was not crazy, my rational mind was functioning clearly.  I simply had adrenalin coursing through my body constantly and certain situations made it worse.  So why were they treating my ailments differently to “physical” ones?

Working in legal aid has taught me a few valuable things and one of those is to whom you complain when things aren’t going your way.  I wrote to the ombudsman about my situation, explaining everything in detail and declaring that I felt discriminated against.  They responded fairly quickly with a letter explaining that my application had been denied because I had not met the requisite time frame.  According to the legislation (which I had found on my own by this stage through research) an applicant had to be unwell for work for at least a week after their employer’s sick leave entitlements ran out, and only then would they be considered.  According to the ombudsman, the super fund was saying I had not met that threshold.

By this stage, I had been too sick to work for over three months.  I had no financial support from the government I’d happily paid my taxes to when well and now my own income protection insurance fund was trying to screw me- I was furious!  I wrote to them explaining in no uncertain terms that I most certainly did cross the threshold in that my sick leave had expired many months ago and since then I’d been living on sheer willpower.  Then the ombudsman started phoning me.

The second important lesson I have learnt from legal aid is to know when you’re defeated.  If you have already gone to the ombudsman, there is no higher authority to complain to, so if the ombudsman asks you to jump you either ask how high or get out of the contest. If they weren’t going to agree to email communications, I was at the end of the line.  Reluctantly, I returned the call.  Oh, now, I didn’t do it straight away!  No, that would be what a healthy person does.  I waited for a day or so, making notes of what I would say, outlining the relevant act and generally getting myself all worked up about it.  I dialled the number and hung up before it rang several times, like a teenager trying to call a cute boy.  Finally I worked up the courage to call and spoke to a polite young lass at the ombudsman’s office.

She apologised for making me use the phone but felt it would be “easier”.  I’m still annoyed by this statement to this day.  Of course it would be “easier” for her, that is what she wanted.  It was by no means easier for me.  In fact, considering the confusion regarding the facts and the laws, I felt it would have been much easier for any normal person to put the whole story in writing.  However, I had already done that and she still did not quite seem to understand the crux of my argument, so I suppose I must concede that for some people, written communication may not be very easy.  Although why they are working for the ombudsman in a quasi-legal role is another question altogether…

Anyway, the young girl I spoke to was very nice and genuinely tried to help, I’ll give her that.  The problem was, she’d never read the act and was unfamiliar with this kind of application.  The poor thing was probably new to the role and I had thrown her in the deep end.  We went over the problem again and again and she kept coming back with the same answer, you haven’t been sick for long enough.  I felt like banging my head against a wall!  I had been sick, too sick to work, and had doctors’ reports to confirm it, I said, for several months.  How on earth could that “not be long enough”?  Well, she looked into it and I looked into it and much to my dismay, one afternoon, I found my answer.  It was not in the relevant act itself, but the subordinate regulations… right down the bottom.  The way it was worded was unclear at first instance but after several readings it became clear, I was not entitled to any income protection insurance because I had lost my job.

I couldn’t believe it.  What on Earth is the point of income protection insurance if it doesn’t cover you in times of unemployment?  If I was still employed, I would have had an income and as such, would have no need for the insurance!  It was a complete catch-22.  If you don’t need help, you’re entitled to it but if you do, you’re not.  Ridiculous.  I was beside myself with anger but alas, that was what the law said and as I knew all too well, there is no arguing with the law.  I had lost and would not be getting any insurance payments.  I informed the ombudsman of my findings (I’m still not sure she really understood what had happened) and resigned myself to failure.  I was going to have to think of a new way to make money, something that suited my needs.

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…

Working with a Chronic Illness – Part 1

 

I haven’t posted every day this week and I do apologise.  I confess, I’ve been exhausted.  You see, I’ve been at work, pretending to be a normal person (shh, don’t tell anyone!) and juggling day-to-day living with the strict requirements of the GAPS Intro diet.  I’m not going to lie to you, it’s not easy!  I’m extremely fortunate to be working part time at the moment in a very flexible role… I really don’t know how or if I could cope doing this with a full time job, but it’s still a highly time-consuming lifestyle.  What with all the boiling of broth, peeling of vegetables, detox baths and dishes, dishes, dishes, GAPS ironically really eats into your time.  I can only imagine how hard it would be for those doing the daily enemas because of course that’s another hour or so in which you simply cannot do anything else and another hour of the day that you lose.  It is lack of time in this modern world that led to the consumption of all the over-processed convenience foods that made us sick in the first place, so it’s no surprise that making quality, whole foods, starting from scratch, is going to take a long time.  Truly, Being on GAPS could be a full time job in and of itself.

 

It’s a funny thing, but I have often said to people that having a chronic illness is a bit like the job from hell.  Your hours are very long and unpredictable.  You are always on call and your boss will and can ring you and demand that you do lengthy shifts at the most inconvenient of times with no notice whatsoever.  The job is dirty and hard and always leaves you mentally and physically exhausted but you get no regards or rewards for your efforts.  The only difference really is that you don’t get paid and you can never quite and that only serves to make it all the more frustrating.  My partner would say to me, after a long week at work, “you must have so much time on your hands, what do you do all day long?  Surely you can work part time at least?”  To which I would simply reply, “I already have a full-time occupation, I’m sick.”

 

When you have an invisible chronic illness, you face so many more trials and tribulations than just your physical ailments, you also have to deal with the constant suspicion and mistrust of the people in your life: partners, family, employers, friends, co-workers and even ignorant GPs.

 

When this whole saga began, I’d just finished studying a graduate diploma while working part time.  I was working full time as a personal assistant while searching for my first full time job as a professional.  A stomach virus hit the office and for some reason, knocked me around a whole lot more than anyone else, but it didn’t actually start having an impact on me until I got my first job as a professional, as a legal advisor for legal aid.

 

When you work in admin, if you’re feeling sick or in pain you can still do a pretty good job.  You can slink into your desk, slouch down in your chair, make yourself a cup of tea and just bang away at the keyboard.  When you work in a high pressure environment, trying to balance the department’s need for efficiency and the desperately high expectations of stressed out and emotional clients, many of whom have mental health issues, you really can’t be off your game.  Trying to listen to everything someone is telling you, taking note of the relevant parts, thinking which legal principles apply and how you’re going to solve their problem, all the while responding to the story appropriately is hard enough at the best of times.  When your body is screaming at you, it is near impossible.

 

There were times I was in so much pain it was all I could do to keep smiling and for a long time, I had daily diarrhoea.  My first office was mercifully close to the bathroom, so my frequent visits went unnoticed but when I was promoted to a bigger room, closed to the manager, that dash to the bathroom after every half-hour interview became my own personal “walk of shame”.

 

And then the nausea started.  I don’t know why the nausea started, nobody does.  I’d felt sick like this before since the dreaded virus and queasiness was a daily occurrence that accompanied the bowel issues, but all of a sudden I started getting violently nauseous every single day.  I would wake up feeling fine, get ready for work and then it would hit.  A hot, churning, gurgling like vomit rising up my throat.  Nothing made it go away.

 

I tried peppermint tea, ginger tea, ginger tablets, sea-sickness tablets and migraine tablets, both medicinal and natural.  I tried relaxation, meditation, eating crackers, even taking a walk, but it just would not ease up.  I tried ceasing and experimenting every variation of my supplements, even going off them altogether for a week but still the nausea would not stop.  My doctor was stumped.  On a couple of occasions I did actually throw up and that only made it worse.  Now I was anxious about being sick and as we all know, anxiety is not good for the stomach.

 

All this time I was trying to work, pushing through the discomfort and embarrassment but quite regularly having to go home early or call in sick.  It was embarrassing to admit illness in the first place and I felt people’s curiosity begin to grow as my absences continued.

 

To cut a long story short (yeah, I know, too late!) I ended up getting to a point where I was waking up nauseous every day and simply could not go on working.  I went on sick leave.

 

I cannot tell you the excrutiating shame, guilt, fear and worry that come from being on extended sick leave.  As every day passed and I did not recover, the level of curiosity from my employer increased and, I have no doubt, the frustration.  I knew I was sick, but did they?  Did they realised I was rocking back and forth on the bathroom floor, clutching my stomach?  Did they know I would run to the bathroom to dry wretch over the toilet only to have nothing come up?  Did they know the agonising pain that gripped my belly, like a demon’s claw, twisting my innards?  I told them, but more to the point, did they believe me?  I can’t say.

 

As time goes by, people expect things of sickness.  Basically, they expect you to either get better or die.  That is the normal pattern.  But chronic illness does not follow that pattern and therein lies the difficulty.  You get sick and you stay sick.  There is no treatment, no medicine and for me, there was not even a diagnosis at this time!  All of this makes your illness look dangerously suspicious to the outside world and most patients are perceptive enough to sense this.  It creates an ugly knock-on effect as the outsiders feel suspicious, the patient senses this and thus feels self-conscious and then the outsiders sense the self-consciousness and misinterpret it as guilt.

 

In any event, this went on for some time.  About 8 weeks in total.  And to add insult to illness, my contract was up for renewal.  I had only been employed as a 6 month contract which had been extended to 12, but that year was nearly over and it was time for my employer to consider whether to keep me or not.  When I was too ill to work with no proper diagnosis, no treatment plan and no definite return date, it was decided I was not a promising prospect and my contract was not renewed.  I do not blame my employers for this decision at all.  Yes, it was disappointing but business is business and for all they knew, I could have been on sick leave for another year!  It would not have been sound practice to renew my contract.

 

Embarrassed, ashamed, anxious and nauseous, I snuck in with my staff pass after hours to clean out my office, kicking myself over how many comforts I had brought from home.  I actually filled 2 small suitcases and a box with all my personal effects (Blankets, jumpers, snack foods and a whole drawer full of medication) which took 2 painstaking trips to the car to remove from the building!  I was invited to come in for farewell coffees and even an office lunch afterwards but the daily nausea still gripped me and I could not face the prospect of sitting white-faced at a table of my peers, shaking while they tried to engage with me, pushing them out of the way as I ran for the bathroom.  The very idea made me queasy and I am sad to say I have not seen those co-workers since.

 

What happened next was when I discovered I had no money and no way of getting any.