Illness from a Child’s Perspective
When I was a child, it was difficult to understand my illness. All I could comprehend was that I didn’t feel well and had to take medications and do therapies that I hated. It seemed like I was called out for a punishment that I didn’t deserve. Frankly, Rheumatoid Arthritis felt cruel and unfair.
I was an avid reader and my parents bought me a children’s book about the scientist Louis Pasteur who developed the concepts of vaccination and pasteurization. He was one of the first microbiologists. The book tells the story of how Pasteur developed the vaccine for rabies. In the illustrations, red blood cells and white blood cells are explained. The little white blood cells wear old-looking metal army helmets because they are the body’s warriors for fighting bacteria and other microscopic invaders. Pasteur’s vaccination boosts the strength of the white blood cells so they can fight off the rabies.
I couldn’t get enough of this story and asked it to be read to me a lot. But it took on another life in my imagination. I could see my white blood cells arming up and attacking my bones and cartilage instead of bacterial invaders. When I closed my eyes I tried to calm them down, telling them not to attack me. Be my friend, be my ally and not my enemy—I thought.
It didn’t help my Rheumatoid Arthritis, but this nerdy book helped me to envision the war being raged inside my body. With the explanations of my parents and doctor, along with this book, I could grasp that I was the victim of biology. A microscopic war was being waged with terrible results on my body. I started to understand the concept of an autoimmune disease that was attacking my joints, and hard as I may think or wish, I could not influence the outcome without medical intervention.
I eventually came to understand the more complex nuances of the disease, as research and knowledge grew. And I wanted to know more. I was always asking questions of my doctors so that I could better understand. What made the disease active? What started it and how could it be stopped? How did the medications work? Why did physical therapy make a difference? What were the blood tests and what did the results tell us?
Most of these questions didn’t have answers. Some still don’t. But to me the defining experience of RA as a young child can be boiled down to frustration and wonder. I was constantly frustrated—by my pain, increasing disability, and lack of understanding what was happening to me. And also constantly wondering how this thing had happened and why it happened to me. Could it be reversed? Would I ever understand why and what happened to spark my RA?
To be honest, it’s too much for a child. And I am thankful that my parents supported my questions, but also treated me like the child I was. They made sure I went to school, played, and had all the normal experiences of childhood. I may have been very sick, but I was too young to comprehend and handle it on my own.
It took time for me to grow up and mature in my understanding of my RA and life with a chronic disease. The journey was not easy and took a lot of work, but it was necessary for learning to live with it. Looking back, I think I did the best I could as a young child and appreciate the people around me supporting me through a time of difficulty and confusion.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?