A Teenage Brain Has a Difficult Time Dealing With Chronic Pain
My youngest son, Caeleb, is a sophomore in high school. He lives with severe hemophilia A, along with the complication of antibodies that inhibit the infused factor’s ability to stop bleeding episodes, and chronic pain is proving to be a significant issue for him.
Caeleb’s right knee and ankle are target joints that have endured trauma from numerous bleeds when he was younger. While regular bleeding is not an issue now, he struggles with his mobility because of this chronic pain.
Winter is a difficult season for Caeleb. The cold temperatures cause his joints to hurt. While I know his pain is real and he is not “faking,” I don’t always know how much to push him. Every morning I open the door to Caeleb’s room, unsure how he will feel. Will his ankle and knee be in excruciating pain today? Or will he roll out of bed and begin to get ready for school?
When he is in pain, I often strongly encourage him to get moving, brush his teeth, and get dressed. I push him so that he will not miss school. Unfortunately, there are mornings when his pain is so great that getting out of bed is impossible, and he doesn’t get to school. While he can keep up with his assignments via the online school portal, remote learning is more difficult than in-person learning for him.
When I urge him to get ready, I do my best not to raise my voice first thing in the morning. I know that’s not a great way to help him start his day. I try my best to be empathetic, but there are times my pushing comes across as shoving. The last thing I want is to argue, but I worry that he might think I am being cruel and insensitive.
I am frustrated and angry that Caeleb lives with chronic pain. A diagnosis of hemophilia with an inhibitor should be more than enough for a 15-year-old to have to contend with, but I encourage him to keep moving out of necessity. If Caeleb gives in to his pain every time he hurts, he will miss out on class instruction and the joy of being in school with friends and participating in band rehearsals. Then the pain wins.
I also try to explain to him that when he is an adult and working in the world, he will need to live with pain and push through it to meet deadlines, travel for business, and do the things that make him happy. But most 15-year-old kids are unable to grasp a world outside of the here and now, so I know trying to get him to think about his future might not be that effective right now.
Parenting a child with a chronic illness is challenging. While the nuts and bolts of dealing with an illness can often be straightforward, having to deal with the emotional side of things — helping a child to deal with the effects of their condition and make sense of it all — can be difficult.
I will continue to push, nudge, encourage, support, and, I hope, even inspire my son. We will make the best of what life offers, despite the pain.
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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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