Introduction: Holly Zappala, RN, was once a child with chronic pain. As an adult, when she received a formal diagnosis with a chronic pain disorder, she was already a nurse, a wife, and a mom of three children under the age of four. In the next decade, two of her three children were diagnosed with chronic pain disorders. We asked her to share her thoughts on raising kids with chronic pain. We hope that her perspective as a nurse, a chronic pain patient, and a mom of kids with chronic pain can help others as they walk the difficult road of parenting kids with chronic illness.
Rule #1 Understand that experts have limitations.
In my mother’s day in the 1970's, raising a child with the complaint of chronic pain was simpler—you deferred to an expert. You didn’t doubt or question doctors even if your “Mom Logic” had doubts. I was a child in pain. My mom was a good mom; she took me to the “expert” better known as my pediatrician.
He completed a comprehensive exam and made his pronouncement, expecting not to be doubted or questioned. Unfortunately for me, he pronounced me small for my age, overly tired, and an overly sensitive child, with normal growing pains. My mother was told that all children have growing pains. She was instructed that I needed an earlier bedtime, and tough love when I complained.
I said it was simpler — I didn’t say it wasn’t easier, especially if you were the 7 year old child in pain. I went home from that doctor's appointment still in pain with the perception that I might grow soon. My mom followed the doctors' orders. I was tucked into bed long before the streetlights came on and while my friends were still outside playing. As I laid in bed I prayed, “Please God, let me fall a sleep so I won’t feel the pain.”
Years later “The overly sensitive child theory” was completely debunked as I stoically endured a painful procedure. After the procedure the new doctor asked, “Which hurts more, the pain in your joints or the procedure?” I immediately answered, “My joints.” We all learned a lesson in pain that day. I learned that my pain was real and that I was the “expert” in feeling my pain.
My mom had always had some doubts about the pediatricians’ theory. She regretted forgetting she was an “expert” in being my mom. And the doctor learned to be an “expert” you need to ask the right questions.
We are all experts in something, but it's important that we recognize that all experts have limitations. We need to work as a team and seek to understand each other's perspective if we want to succeed.
Rule #2 Being the smartest and fastest are great qualities. But the real secret to persevering to win at life is based on your point of view, determination, endurance, and steadfastness.
If you have ever watched a toddler learn to walk you know it requires determination and a lot of falling down. Parents frequently offer a kiss and reply, “All better.” With a little encouragement, before you know it, your child is out trying to conquer the world again. My daughter didn’t just walk — she ran, climbed, and fearlessly took on the world. But at age ten something wasn’t right. Just like the generation before me, I scheduled a doctor appointment for my daughter. I came to the appointment armed with my perception, my medical pain history, determined to help her, and a steadfast belief that her pain was real.
The first doctor didn’t have an answer and sent us to the second doctor. The second doctor, a pediatric rheumatologist didn’t diagnose her with growing pains or hysteria. He stated, “The pain is all in her head, but it is very real.” I wasn’t 100% sold on his perception, but he was willing to treat her child size body for a pain syndrome that was in it’s infancy of being recognized in adults. He offered a plan of hope and a treatment that did not cure her, but did greatly reduced her symptoms.
Still, I had to face the fact that I couldn’t “make it all better.” Soon after her younger brother also received the same diagnosis. My two children with the same diagnosis were perceived by others very differently. If you asked her teachers perceptions, they would say, "she is hyperaware of her surroundings". His teachers would say, "he has attention deficits". In truth their condition was making them both highly sensitive and overwhelming their nervous systems.
Just like walking, I couldn't do it for them. Instead, it was my job to validate their experiences as being real. It was my job to offer encouragement, and to believe in them that they could succeed in the world. Lastly, it was my responsibility to be persistent in advocating for them in their schools and the healthcare system, even if those systems found my children's needs inconvenient.
In our family, my son is famous wrestling with his dad, definitely outmatched, but for saying defiantly, “Never give up, never surrender."
Rule # 3 You aren’t just raising a child with chronic pain, you are building the foundation of adulthood.
Building a foundation is not a spectator sport. It is hard, dirty work that parents do down in the trenches, and you may not see the results for years. If you are a parent, you don’t need to read about trenches. You are probably buried under laundry, multiple to-do lists, homework assignments (yours and your child’s), and have a calendar full of demands. Some days it takes all your energy just to make it to bedtime. This is especially true if you're a parent who also lives with your own chronic pain.
Take a deep breath. Step off your rat race hamster wheel and ask yourself, “What am I building long term?” All children (and adults) have limitations, some more than others. Your child’s pain is not fair. In order to become a successful adult, we have to learn that while the obstacles may vary, all people encounter unfair obstacles. What defines a person is how they overcome unfair obstacles.
Your child’s pain may keep them from becoming a celebrity, but it may make their compassion famous. Pain can teach empathy if we demonstrate empathy to our kids. Pain can teach endurance to push through hard tasks if we walk through the tough times together and don’t skirt around them. Pain teaches a parent to relentlessly seek answers for their child, which in turn teaches persistence to their children. Persistence sneakily turns into the most valuable thing of them all, hope.
Pain taught both of my children not to give up. Pain taught my son to be highly aware of the needs of others, which allows him to thrive as a peace maker and excel at customer service. Pain taught my strong willed, fearless wild child, to give people hope through physical therapy. When the pain can’t be eliminated, ask what positive lessons can pain teach you and your child?
My rules are simple and most definitely not easy. But a parents' love can make all the difference in overcoming life's obstacles.
Disclaimers: This article is intended for educational purposes and is not intended to serve as or replace individual medical advice from a healthcare provider. If you are seeking personalized medical advice, please contact our office to schedule an appointment with a licensed medical provider.