I don’t remember a time before RA (rheumatoid arthritis).
Rheumatoid arthritis (RA) Is a debilitating autoimmune disease that affects approximately 1.3 million people in the United States, striking women three times more often than men. The disease causes the immune system to attack healthy body tissue, leading to damage to joints and organs. Patients with RA can experience fatigue, joint pain, stiffness, fever, and pain. The impact of these largely invisible symptoms on patients’ lives varies, necessitating lifestyle changes and ongoing medical attention. Despite the many challenges that those living with RA face every day, patients continue to strive to live full, meaningful lives within the “new normal” of the diagnosis. Here, women who live daily with RA share their stories and their experiences, hoping to inform and inspire others affected by the disease.
I was born and raised in Denmark, and the first symptoms of what was then called juvenile rheumatoid arthritis appeared when I was four years old. One wrist and one ankle were swollen and painful, and by the end of the day my parents often had to carry me because I couldn’t walk. Getting a diagnosis, however, was an uphill battle. My parents took me to see many doctors over the next several years, none of whom knew what was going on. One doctor suggested my mother see a psychiatrist because clearly it was all in her head!
Finally, when I was nine, we found a doctor who knew what was going on, and I got a diagnosis. This didn’t actually help much, as I grew up in a time when there were no treatments for RA. By the time I hit puberty, the disease went supersonic and I spent several years in hospitals. At 16 all of my joints had deformities, and I was a proud owner of two new hip replacements and a power wheelchair.
The next two decades included many adventures: my family and I moved to Canada; I went to university; I traveled; and, after graduating with a master’s degree in social work, I started working. During that time my symptoms were controlled by high doses of anti-inflammatories, and the disease was pretty quiet.
With the exception of doing my degree part-time and working at somewhat reduced hours, I didn’t have to do much to accommodate my RA and disability. It was a wonderful break after spending my childhood in and out of hospitals.
And then, nine years ago, the disease flared wildly again, and it changed my life. There was a time deep within the flare and pain and sickness when I considered suicide, but I was lucky. I got funding for a biologic, and for the first time in my life a medication suppressed my RA. Getting my life back was nothing short of a miracle, and I decided to honor it. It took years to get stronger—in fact, in some ways I’m still improving steadily—and as soon as I could, I started pursuing my lifelong dream of becoming a writer. The dream came true. I now make my living as a writer, and last year I released my first book: Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain (Two North Books, 2013).
Writing is the perfect career for someone like me. Although I’m stronger than I was last year and the year before that, I’ll never get back to where I was before the latest big flare. I’ve had a disability since my teens, but now, even with the benefit the biologics have provided, I am too disabled to work outside my home. I live with high levels of chronic pain that I manage with a complicated balance of medication, repeated (and mostly unsuccessful) attempts to pace myself, and a daily nap in the afternoon. In addition to my regular medical care and the miracle biologics, I also use complementary therapies, such as naturopathy, acupuncture, and B12 shots. Together they keep me going. I live and work around the disability, fatigue, and pain, working to keep them in the background while I focus on my life.
And for me, that’s the goal: To live. To find joy. To revel in the wonder that is life. Because if there’s one thing I’ve learned in my more than 45 years with RA, it’s that life goes on no matter what you do. Finding a way to be part of that life as much as you can is what will place you on the path toward finding meaning, love, and joy. Focus on what you can do, not what you can’t. Work with your body instead of against it. Once you forgive your body for not being able to withstand the autoimmune disease, you’ll become a much happier person. Love yourself but not despite the RA. Love yourself just the way you are: you have a beauty and a strength that you wouldn’t have without RA.
Lene Andersen is the author of the award-winning blog The Seated View at theseatedview.com. Her two books are Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain, both available on Amazon.com.