When my daughter was diagnosed with fibromyalgia at age 13, my heart sank. Why did this sweet young being need to be saddled with an illness fraught with so many difficulties? Unknown cause, unknown future, and variable support in the medical community. I told her the news, and I told her how sorry I was for potentially genetically passing on the disease to her (my husband does not have fibromyalgia). She said, “Oh, that’s OK Mom, I know all about fibromyalgia (I talk about it alot), and I’m sure I will get better with the medicine you are taking. Wow–that is some kind of teen spirit. And you know, she has gotten better, as many children with fibromyalgia do when given the right individual treatment.
We try to be sensitive to our child’s needs but build courage and resiliency in them. In my experience, the children with fibromyalgia that seem to do best are the ones whose parents do not limit their lives and their dreams. As my daughter grows, I have transferred the responsibility of remembering to take the medication to her. It is part of my trusting her to take ownership of her illness. We discuss what is best for her body, and if a sleepover 2 nights in a row might be just too much for her to function well the next day. She needs to learn to listen to her body, and what it needs to be healthy. Then she can make decisions about how to take care of herself and her fibromyalgia, so she has the best chance to be a active and healthy adult, who just happens to have fibromyalgia. I do my best be a good role model, and to support her and love her deeply as I stay out of her way as she leaves childhood behind.