About three years ago, when I was responsible for managing chronic disease in our national health department, the CEO of Arthritis Australia mentioned (almost in passing) a project they were about to start. They were planning to showcase a series of everyday women with RA, who would each tell their story to a different female politician, in an attempt to raise awareness of the disease and its impact, break down some myths and misconceptions, and hopefully raise the profile of RA on the ever-squeezed national health agenda. "Interesting," I thought, and wished them well on their venture.
Fast forward a couple of years to June 2010 ... and I have just been diagnosed with RA.
The preceding six months of unexplained pain, swelling, stiffness and immobility had taken its toll - physically, emotionally and psychologically; particularly since it came just as I was surfacing after months of surgery and treatment for breast cancer.
When it finally came, the diagnosis was an unwelcome one, leaving me fearful of an uncertain future, but one which I was convinced would involve chronic pain and probable disability. And then after months of steroid treatment and limited movement, the weight piled on and the rotund body and moonface staring back at me from the mirror were barely recognizable.
In short, I was in a dark place. My life as I knew it seemed forever lost.
In my effort to understand as much as I could about this insidious disease that threatened to envelop my life, I spent a lot of time searching the web for snippets of information. That's how I came across this little gem, Women's Insights into Rheumatoid Arthritis. It was the very project I had been told about when it was little more than a pipe dream; now here it was published!
The book beautifully tells the stories of twelve women - young, old, rural, urban, mothers of young children, Indigenous, foreign-born, recently diagnosed, and those who've lived with RA for many years. For each woman, there's also a section which details the impact of her story on individual politicians, and in each case, the stories clearly had a profound influence.
Their stories spoke to me. They were the real-life experiences of real-life people - people like you and me. Although I was relatively new to RA at the time, I saw my own experiences reflected in their stories. Here were women who really understood and could clearly articulate what I had gone through. Like Elleke, who said "[I] promised to make a salad but my hands and wrists were so painful, I couldn't slice the lettuce. I felt so helpless. All I could do was stand there and sob." Elleke, I feel for you; I've been there and know exactly how you feel. And I sobbed too!
Importantly, the stories were also very powerful. In all cases, and often through incredible adversity, these women prevailed. They did not let their RA stand in their way. When life threw them a curve ball, they ducked, weaved, side-stepped and generally dealt with it and moved on to the next challenge. Again, I cried reading their stories, but this time it was because of their determination and true grit!
In the words of Despina: "All too often, people with a disability are judged by what they can't do rather than by what they can. Rheumatoid Arthritis has shaped and strengthened me as a person." Each and every woman's story is truly inspirational.
I came across this wonderful resource at just the right time. Looking back, I now realize that Women's Insights into Rheumatoid Arthritis, brimming with stories of such courageous women, was the catalyst for me to start to wrestle my life back.
Some of these women were diagnosed many years ago, long before the drugs that have revolutionized RA treatment in the last decade, and which have given newcomers like me every reason to believe in a disability-free future. I try to imagine their day-to-day battles as they struggle to raise young children. Like Judith, who was unable to pick up her children for a cuddle when they were young. I can't imagine the emotional pain, let alone the physical pain, that would rob a mother of this most basic pleasure. I had the joy of meeting Judith a few years ago, where she was speaking about RA to a gathering of national politicians, and I was blown away by her fortitude, energy and positive outlook - despite obvious disability from over 30 years of RA. As she says in the book, "When you get a disease like this, you can let it beat you or take charge and beat it."
These women are inspirational. And do you know what makes them inspirational? They are everyday women, dealing as best they can with RA.
And if they can do it, so can we!
Published On: April 10, 2011