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Having RA As A Child Taught Me Some Very Important Life Lessons

Tina Tarbox shares her experiences growing up with RA.

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I have lived with creaky joints for as long as I can remember, since my rheumatoid arthritis (RA) symptoms began before I turned two years old. My first memories are from the period during which I was being diagnosed and of the treatments I underwent.

Back in the early 1970s, the treatments were quite memorable and consisted of interventions such as draining fluid from swollen joints and placing casts on my legs to ensure I wouldn’t develop contractures. Baby aspirin was the only medication available to me, and its efficacy was quite limited.

Despite how difficult and painful that sounds, I still had an enjoyable childhood. I developed interests based upon what I could do versus worrying about what I could not do.

And from the moment I entered my kindergarten classroom, I fell in love with school. It didn’t matter to me that my parents had to carry me inside and place me in my desk since my joints never loosened up enough for me to walk until later in the day.

The treatments were quite memorable and consisted of interventions such as draining fluid from swollen joints and placing casts on my legs to ensure I wouldn’t develop contractures.

I never took feeling well for granted, nor did I feel sorry for myself when I was suffering. I kept chugging along and making the most of my life.

Then, when I was a teenager, something amazing happened: COMPLETE REMISSION! The fluid fled from my joints just as readily as the tide pulls ocean water away from the shoreline.

I had some very mild residual pain, but it was nothing compared to what I had experienced. A whole new world opened up to me:  one where I could run, jump and pursue activities besides cerebral ones.

My pediatrician had told me that my arthritis would potentially "burn itself out" and not follow me into adulthood. His prediction was that if my remission period lasted until I was 18, I would be free of RA for the rest of my life.

My teenage years were filled with the activities I couldn’t participate in as a little girl. The closer I came to that magic number "18," the more hopeful I was. I looked in my life’s rear view mirror and waved goodbye to that little girl and RA forever. 

When I went off to college, I continued to embrace my new identity with a full social calendar, lots of dancing, and anything else I could think of to celebrate this glorious adult life I had earned after paying my RA dues.

My pediatrician had told me that my arthritis would potentially "burn itself out" and not follow me into adulthood. His prediction was that if my remission period lasted until I was 18, I would be free of RA for the rest of my life.

Unfortunately, my arthritis story had an unexpected second act. It seemed innocent at first. I somehow "sprained" my ankle. And then I somehow "sprained" the other one, although I couldn’t recall how I could have possibly injured myself.

When my knees transformed into what looked like pale, freckled grapefruits, I couldn’t deceive myself any longer. RA had returned, and I knew it would be with me for the rest of my life.   

How DARE this happen to me as a young adult after I thought I was in the clear! Hadn’t I been through enough as that little girl I desperately wanted to leave behind? It seemed like a cruel joke to allow me to experience such a complete remission and the hope of being RA-free as an adult.

I was at the lowest point of my life. I had built my adult identity upon being someone who did not have a chronic illness. Eventually, I had to make peace with my disease and that little girl I had been.

After taking some time to reconnect with her, I realized something: She had handled RA much better than I was dealing with it as an adult! I had to figure out how she did it. It took me several months, but she did finally divulge her secrets to me.   

nullFirst of all, she didn’t have any preconceived notions about what life "should" be like. When RA struck before her second birthday, she thought her experiences were completely normal. It actually helped that she didn’t have much to compare them to. Pain was a constant that was simply part of her life.

Second, she didn’t worry about the future. She wasn’t concerned with how RA might affect dating, marriage or childbearing, or what side effects medications might cause. She had no worries about health insurance. She lived fully and joyously in the moment.

Third, she wasn’t predisposed to the neurotic behaviors of her adult counterpart. She didn’t know being a cynical and skeptical curmudgeon was an option. She didn’t obsess about things she couldn’t control.  She had not learned these self-defeating behaviors yet. 

Finally, she never failed to make time to play. She would get completely lost in fun activities. It didn’t matter if dishes were stacked up in the sink or that there was laundry to do. Taking the time to enjoy herself was her top priority.

I am so thankful I reconnected with that little girl again and remembered what had helped her to live a fulfilling life despite RA. She laid the foundation I have built my adult life upon, and I will always be grateful that she shared her wisdom with me. 

She has empowered me to bounce back from bilateral knee replacement surgery, the additional diagnoses of ulcerative colitis and fibromyalgia, and a miscarriage that turned into a life-threatening ordeal.

She never failed to make time to play. She would get completely lost in fun activities. It didn’t matter if dishes were stacked up in the sink or that there was laundry to do. Taking the time to enjoy herself was her top priority. 

I apply her lessons on a daily basis, although it has been difficult to unlearn some of my adult behaviors and beliefs that complicate chronic illness.  I had a much easier time as a child since coping came so naturally back then. But her knowledge has given me the strength and courage I have needed as an adult.

I hope her insight will be as helpful to you as it has been to me.