The Arthritis NewsletterSpring 2014
Working and Living Well with RABy Lene Andersen
Nine years ago, I couldn’t imagine I would ever fulfill my lifelong dream of writing a book, and becoming an advocate for people with rheumatoid arthritis (RA). Nine years ago, I thought my life was over. But I get ahead of myself.
Growing up with juvenile idiopathic arthritis (JIA) in the 1970s in Denmark meant spending a lot of time in hospitals. There were no effective treatments for JIA and this led to my early disability. I received three “gifts” when I was 16. The first two were hip replacements, making it possible for me to sit up for the first time since my hips fused two years earlier. The third was a power wheelchair so I could go home after a four-year hospital stay. Finally free, I joined my friends in high school and tried having as normal a life as possible.
In the early 1980s, we moved to Canada. Here, I continued working towards my dream of helping others with RA and disability. While completing my Masters in Social Work, I discovered policy development, perfect for a young woman who wanted to change the world. I found a fantastic job in the employment equity and human rights field. My employer was wonderful, accommodating my RA with reduced hours and the ability to work from home. Unfortunately, the law changed and I lost my job, subsequently spending years exploring other parts of my life — finding a job when you have a disability is difficult.
In 2004 my life changed again. I had a huge RA flare, which inexorably destroyed my health while I was waiting for funding approval for biologic medication. It took eight months and by then, I had nothing left. Just before Christmas that year, I promised myself that if a solution wasn’t found by the next summer I would kill myself. I didn’t want to die, but needed the pain to end. In retrospect, I should have told my doctor as she would have found a way to help me. In early January 2005, I started biologic treatment, and for the first time in my life, a medication worked and I began to reclaim my life. Now, nine years after that first injection, it still feels like living within a miracle. Every day, I’m grateful for the advances in drug development that makes this a time of hope.
When I received this second chance at life I decided to honour it. This meant emphasizing emotional honesty, as well as focusing on things that I’m passionate about. I started a blog called The Seated View to explore my writing voice and to shine a light on what it is like to live with RA and disability. And I bought a digital camera.
This was the beginning of the path that led me to where I am today. In 2008, I began writing for HealthCentral’s RA site. It’s a dream job that blends writing and advocacy. Freelance writing works with my limitations — I work from home, adjusting my hours to fit how I’m feeling.
Three years ago I decided to combine my experience as a social worker and a writer and wrote a book. Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, the first in a series, helping people to live well with RA, was published in 2013. Last September, I also released a short e-book called 7 Facets: A Meditation on Pain.
Although my first love is writing, photography comes a close second. I have had two exhibits of my photographs and carry my camera with me wherever I go. In a wonderful moment of my two loves coming together, I also became one of the founding Directors of Show Us Your Hands!, an international awareness movement dedicated to uniting and inspiring the inflammatory arthritis community.
Through my work I advocate for people living with inflammatory arthritis and chronic pain. All these years later, I’m living the dreams I had as a child: I’m helping others and doing my bit to change the world and how it perceives inflammatory arthritis and disability.
A big part of living well with RA is finding a way to make your life meaningful and this includes work. One of the challenges of living with a chronic illness is adapting your work to fit your RA. Look at your skills and your passion and think outside the box. Do what makes your soul happy, in a way that helps your body stay happy.