As a parent, we want to do the right thing for our child. We do not want to make things worse. JSpA brings with it a lot of unknowns and new parenting challenges. Pain plays a huge role in patients with JSpA and disease activity. The last thing we want to do as a parent is bring up or remind our child of the pain, especially if they are not experiencing any issues with pain at the time. What is the right thing to do?
There are many theories and as you will learn, every day is different. Often there is too much pressure on the parent to know how to approach pain or the disease activity.
You will begin to notice signs that they are in pain, instead of asking “are you in pain”, you can cut to the chase and ask “what level of pain are you having on a scale from 1 to 10?” and then follow up with “what areas are having pain?” It is important to keep track of any issues or symptoms to share with your doctor at the next follow up.
As important as it is to track symptoms, it is also important to allow your child to feel ok and some days great! You do not have to ask about pain or symptoms every day. You know your child better than anyone else and I have found in our experience, it is better to only bring it up when we notice something is off or bothering our daughter.
What are your thoughts? The important thing is that there are no right and wrong answers on how to best communicate with your child. Remember you are the expert on your child!
Submitted By Emily Neu