Before and After Rheumatoid Arthritis
My fight with rheumatoid arthritis began when I was a small child around one years old, and so my memories of this time are dim. A lot of what I know is based on what my parents have told me and looking at old photographs of me as a baby and toddler.
One thing that hasn’t changed is my smile! I was a grinning, happy infant and have thankfully carried that spirit on with me during my illness. My mom says I won a beauty contest as a baby. (But perhaps that is what all mothers say?)
To me it is the toddler photos that are telling. You can’t really see any joint damage yet, but in some of them I wear a look of pain and fatigue, despite the smile or child antics I am up to. Around this time my left knee swelled like a large fruit and I began limping.
I really don’t remember a time before rheumatoid arthritis and I don’t know what to think of it. Should I be glad to not remember a time before the disease or should I wish I had those memories? I suppose it doesn’t matter because it is what it is.
But I do remember the gradual decline in health and abilities from my aggressive, persistent RA. I remember running and climbing as a child, but these are now long lost abilities. I remember increasing pain, constant stiffness, and trying to keep up with other children. Although I lost motion in my joints, along with strength and physical abilities, I don’t remember them as discrete points in time.
However, what I want to explain is that although RA has been a long battle with the sadness of pain and loss, this is not the prevailing experience of my existence. I remember having fun as a child—getting the opportunity to be a goofy child and enjoy myself, while also living with a serious illness.
As I grew older I learned to take on more responsibility for myself and my RA. Even as a young child I had to do my exercises and often struggled with this and taking my medications. But it was always something that I had to understand and invest in so that I could take charge of my health as best I could. While my family was there to support, they taught me well that it was ultimately up to me to live with and manage my RA.
Now that I have lived with the disease for a long time as an adult, I am glad to have been well-guided by my early doctors and my family. They set me on the best possible path. But additionally, I was able to enjoy my life and be a person first (not just a disease). Although I remember lost abilities and pain, I enjoyed my childhood and youth.
My husband told me recently that one of the things he enjoys about being married to me is that I get him to do things he otherwise may not do—like go to baseball games, travel to London, and other adventures. He said he knows it is because I want to see and do things while I can, that he knows I think about the potential for declining health and abilities. He is right and even more—it is something I have been thoughtful about for my entire life, even as a young child.
Before and after RA is not really a landmark for me. I do have a few landmarks (such as my first huge flare, my first joint replacement surgeries, and my knee revision), but the most impactful part of my disease that I feel is the gradual loss. These changes spur me on to live life well each day, to savor experiences and time with loved ones. Life is what we make it and my mission is to enjoy as much of it as I can.
Has having RA put a hold on your ambitions?