I have lived with Rheumatoid Disease for many years now, having been diagnosed at the age of twenty. Apart from the obvious symptoms – chronic pain andfatigue, flare ups, loss of mobility and joint function – there are a host of psycho-social issues that come along with a diagnosis of a chronic disease, especially at a young age, and I intend to blog about some of these in the coming days.
While my friends were establishing careers, I was already put out to pasture on the Disability Pension. While they travelled the world, I struggled to keep myself housed on a poverty-level income. While they had children, I miscarried repeatedly due to the toxic cocktail of drugs I take for RD. While they had careers, I was expected to go home and watch daytime television. I was told by doctors and social workers at age 24 that I should just stop trying to do things and accept that I ‘can’t have a normal life’.
I didn’t accept this. I went to university, earned a Bachelor of Arts and then a Master’s degree. It took me a lot longer than most people, but I did graduate, and at the time hoped it might help me gain freelance work I could do from home. I wrote and published poetry; I did short term contract jobs in community arts; I performed as a writer, and later as a musician and singer; I wrote articles and book reviews and tried to sell them to media outlets; I taught creative writing in schools, community centres and prisons. But all this work was sporadic as my disease activity waxed and waned.
The pension is way below the official poverty line and very difficult to live on. Especially for a lifetime. (Which, incidentally, in my case will be ten to twenty years shorter than someone without RD). Although I am grateful for the financial support, and the supports offered through Australia’s quite excellent health system, I have never been offered any assistance by the system to gain and retain employment. Never. Any work I have done I have found for myself. The system’s focus has always been on what I can’t do, not on what I can.
In fact, it is counterproductive for me to seek to gain employment, even if I did live in a utopia in which disability and illness didn’t see job seekers discriminated against by employers. Why? Because the allowable earnings for a pensioner are set at such low levels that taking some freelance work can see the pension reduced accordingly. Therefore, it isn’t worth my while to try to be a part of the workforce as the system is set up to remove supports as soon as I begin to earn. Having RD means that some days are better than others, and productivity waxes and wanes with the ups and downs of the illness. It seems better to lie low and not achieve too much or I risk being kicked off the pension, and that level of achievement will be expected of me full-time. Which will begin a cycle of my health deteriorating again and having to jump through all the hoops to get back on the pension. It’s just a pointless Catch-22 from which there is no escaping.
As with many autoimmune conditions, I have to balance periods of activity with periods of rest. For instance, I like to play music. But getting ready for a gig requires daily rehearsals of one hour only so my joints don’t flare (as opposed to a well person’s one five hour rehearsal), and after the gig I will need two days to recover. This is what people don’t see. They see me out in the morning shopping, looking quite well. But they don’t see me spending the afternoon lying down to recover from the effort of walking around the supermarket. They see me performing, but they don’t see me spending a week preparing, and two days afterwards recovering. They see me in the water exercise class, but they don’t see the pain medications I take both before and after the class, and the nap I need in the afternoon post exercise. They read my blog, but they don’t see my swollen hands after I have finished typing it.
Yet, every so often some tabloid television show will run yet another story about the malingerers on the Disability Support Pension (DSP). They’ll track down social media photos of someone smiling and enjoying something normal – such as an exercise class or a party – and claim that the person can’t possibly be disabled and must therefore be gaming the system. These turkeys refuse to accept that not all people with disabilities use wheelchairs or other obvious aids, and that in fact many disabilities are not readily visible. They also refuse to accept that it is not at all easy to access the DSP, and any ‘malingerers’ would have to be very good actors indeed.
All DSP recipients have already been through a stringent process of providing medical proof from both their own and the government’s doctors, and had their entire lives – income, relationships, medical history – recorded in detail by Centrelink staff. At the time of writing, it has become so difficult to get onto DSP that many genuinely ill people are struggling along trying to meet requirements for jobseekers while knowing their medical condition will make actually doing the job impossible. And that’s if the employer would even consider hiring a less-than-100%-healthy worker anyhow. In the past year there have been cases reported of DSP applicants with conditions such as terminal cancer being refused. So spare me the ‘malingerer’ stories. Television journalists are not doctors and shouldn’t claim knowledge in areas where they have none.
Being subjected to unfair judgement by people who don’t understand my condition and its impacts is one of the worst parts of being chronically ill. And the efforts of tabloid media to demonise people like me does take a toll, especially over a lifetime. I am quite accustomed to being disrespected, talked down to, treated like an idiot who can’t manage my own life, told I am just lazy and should get a job, and being recommended all sorts of snake oil remedies from well-meaning but gullible people.
I am accustomed to it, but that doesn’t mean it doesn’t hurt. It does. But the truth is I’m doing the best I can with the resources I have. I feel proud of the things I have achieved in life despite my illness, and I refuse to be minimised or judged by ignorant people.
I am still here. I am not in the wheelchair doctors predicted for me by age 26. I have worked hard to keep my fingers straight and my body moving, and am still walking after more than three decades of illness. Every day I do battle with debilitating pain and fatigue.
If you couldn’t see me before, see me now.
I deserve your respect, not your censure.
For I am a Warrior. A Rheumatoid Arthritis Warrior.
And I will not be minimised.
I will not be silenced.
I will not be invisible.