Rheumatoid Arthritis and lack of awareness and just plain ignorance

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There is a new government in Australia and they are making some pretty unpopular cuts to welfare and increasing the cost of health.  This hits those with chronic conditions and on disability the hardest, and so I’ve been expressing some opinions on my personal page.  I genuinely will not be able to afford to keep living here if these changes pass, so I was upset.  And extremely stressed.  It caused flares, of course and a good dose of depression.

It also caused a few people in my social circle to reveal their true feelings. That they think I am lazy and a bludger and that ‘arthritis is not a disability’.  There will always be ignorant idiots, but a couple of these people really hurt me.  It took me right back to when I was first diagnosed and my husband didn’t believe I was really sick.  My friends laughed at me and bullied me and told me I was just depressed and had a low pain tolerance.  How all the people I depended on slowly (or quickly) drifted out of my life.  And those that stayed weren’t really ‘there’ anyway.

So it knocked me down hard.

This is what I posted to my wall:

While stating my views on the recent budget proposals, I’ve been accused of being a faker and lazy because ‘arthritis’ is not a disability. Through general conversations with people, it comes out that I have friends who think I should be working and not bludging.

Most ‘arthritis’ isn’t a disability.  Most arthritis is mild.  But 8 years ago I was diagnosed with Mixed Connective Tissue Disease, of which Rheumatoid Arthritis is a part.  Most people do not suffer severely, and most do respond to medication.  A minority, however, do not respond. A minority suffer ever increasing pain, joint deformity, organ involvement and do become disabled.  

I am not faking. I am not lazy.

I enjoyed my work, and it’s only in the last few months that I have had no work at all.  But for me to work there needs to be a job and an understanding employer. As a web designer and developer, with online marketing and social media skills, I was ideally placed to continue to work, despite a painful and disabling physical condition.  I worked for a small business for many years doing exactly that. That business closed. I haven’t been employed since.

I have freelanced, and work is hard to find. And when you’re dealing with the bottom end of the market, you get stiffed as often as you get paid. Or you get paid far less than the agreed price. Or you get nothing. It’s incredibly stressful.  Freelancers get work through their contacts and networks.  You don’t have networks when you are housebound and can’t go out at night to networking events or play golf. You can only compete on price, and the lower end of the market is often not the most ethical.  

So I signed up with CRS (Commonwealth Rehabilitation Service). They are a recruitment service who exist purely to get disabled people into work.  In almost a year on their program they sent me for exactly zero jobs. I had two separate work placemen officers, each more inept and disinterested than the other.  One arranged a voluntary placement at QBYN city council.  I worked there for free for 8 weeks in the hopes of securing a paid job.  I designed this website

 

http://library.qcc.nsw.gov.au/

 

and the logo that goes with it.  It’s nothing exceptional, but it’s good work. It’s professional. It demonstrates my skills.  But they had no paid position available. It was clear by the second week that they had no vacant position they were evaluating me for. But they did have a task that my skills were eminently suited for, that they would otherwise have had to contract out and paid thousands for.  It’s been a year and I’ve not heard anything from them, even though they promised they would ‘keep me in mind’. Many people have promised to ‘keep me in mind’. 

The CRS then declared me unemployable.

In order for me to work, there needs to be a job, and someone prepared to give it to me.  The government programs are incompetent and pay lip service to the problem. There is a government subsidy of $1500 that an employer will qualify for if they employ me for 3 months.  That’s not much incentive. 

It’s not as simple as calling me lazy.  Or a faker.  Why would I put myself into poverty?  Ten years ago I was a highly paid professional.  I enjoyed my career. I can document each event that led me to where I currently am, and can confidently and honestly say there is nothing I could have done differently to avoid the place where I am now.  Sometimes bad things happen to good people.  Exactly the same thing could happen to the sanctimonious bastard that told me I look perfectly fit and able to work to him.

It’s abhorrent for a government to keep increasing the cost of living and medical expenses for those who are disabled.  My medical needs are high, genuine and they are expensive.  Even though I am on a pension and have a health care card my medical expenses run into the several thousands every year.  There is no free healthcare in this country. The proposed changes are just the straw that will break many people’s backs. 

On the flipside the government provides no support to help people into work or programs for reskilling or retraining for disabled people. Or decent incentives for employers to employ disabled people.  Disabled doesn’t mean stupid. Or unskilled. Or lazy.  Disabled may just mean someone had some really bad luck. 

Our country may or may not be in a budget crisis. I’m not an economist.  But we are most certainly in a compassion crisis.

I received a lot of supportive messages. Although it seems like I was ‘fishing’ for sympathy, I was genuinely in need of help.  Those messages of support helped me start to get my head back together, and find my hope and positive attitude again.

Oh and 4 people de-friended me.  Bye-bye. 🙂

 

 

3 COMMENTS

  1. Loving you more with every word you write. I know what it is like, I was a respected Cardio thoracic and trauma CNS, with years of experience and knowledge, I ran my husbands business and am raiseing six kids- Then cancer, chemo caused me to have a stroke and left me with sever RA. My husband now works 77 hrs a week, fly in fly out, we do not qualify for even a health care card, no family allowance, and I have two sons with ASD!!!!. No matter how bad it is I still think we live in ythe LUCKY ( no not yucky) country, if we lived in the UK or USA we would be on the streets. I get my embrel for just $36 a set rather than $1700. there is always something positive, just sometimes you have to look in the hardest places to find it!!! I am retrianing by doing a masters in project management – not sure if I will get a job at the end, but its better than letting your mind rot.

    I think there comes a time when you realise those around you do not get it, no matter how much you love them or want them too. Unless you live with the bitch of a disease they just will never get it. Sometimes you have to accept that and move on, otherwise the anger will eat at you.

    Me i laugh at everything, always a quick remark, a sliiy comeback, a bounce in my limp!! a quick toss of a nipple tassel or RA bandit joke, but it is often so hard that I am cracking inside.

    We know what you are going through, you are never really alone. xxxxxxx

  2. Here’s my story. 20 years ago I was in uni working on a major in mathematics and a minor in physics. 15 years ago I had my bachelors degree and was working at an IT company full time, traveling nationally and internationally for work, and doing well. 10 years ago I was married and working full time as an IT consultant. 8 years ago I gave birth to my son and decided to be a stay at home parent for a couple of years to have children and raise them. 6 years ago I gave birth to my daughter and wondered why the second pregnancy had me so much more exhausted and achy than the first. 6 weeks after her birth, I had my first major flare. I quickly got the RA diagnosis and started seeing specialists. I eventually got the FMS diagnosis, too. I was still very optimistic that medicines and specialists would have me on track soon. Present day – I’ve gone from a full time worker, active athletically and socially, to a mostly home-bound stay at home parent who has to have my husband take time off work once a week to coincide with my worst day of med hangover when I can’t get the children to school myself. I nap most days while the children are at school so I have the energy to parent them again until my husband gets home from work. I almost never cook dinner. I’m happy just to survive with both kids in one piece until my husband gets home, cooks dinner, organizes what is left of homework for the kids, bathes them, and gets them to bed. I am a shadow of who I was. I don’t think many friends or family truly understand what my life is like.

  3. If the government wants us to retire when we are 70 then they are going to have to help us all. If they take away the drug that keep us moving we won’t be working. They need to think out of the box.

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