After a child has been diagnosed with juvenile idiopathic arthritis, the parents and the medical staff are faced with the challenge of explaining the diagnosis to the child in a way that is simple and easy to understand.
As a parent, you must keep your child’s age and developmental level in mind and tailor your explanation accordingly. Often, this means using simple words your child can understand and even pictures and resources provided by your medical team if possible. You must be honest with your child and let them know that their arthritis is not their fault or a result of anything they’ve done. It’s ok to tell them, “we don’t know why you developed arthritis,” but also assure them that doctors around the world are working very hard to find out the answer. You can also let them know that arthritis is not contagious, and they didn’t get their disease from someone and can’t give or spread arthritis to anyone.
Another point of discussion should be that arthritis is a chronic condition and explain that this means their disease will not go away in a few days or weeks. Tell them that although it may last for months or years, you and their medical team are ready to help and work together to help them feel better.
One crucial way to help kids feel better and help alleviate joint pain is to follow their medical team’s recommended medication regimen. Engaging kids in their treatment is a great way to gain cooperation and help them learn self-management skills from an early age. Parents can give children choices when possible – one idea is to allow them to choose which drink they would like to take with their medication or pick an alarm to remind them when it’s time for their pill. Encouraging your child to stay active and exercise and stretch their joints can be a fun, daily routine that helps alleviate pain and is good for both of you! So is eating a healthy diet and getting plenty of rest. Napping during the day is ok if your child is tired from normal activity. Plus it gives them the energy needed to continue playing with siblings and friends.
It may be hard for them to understand that there may be up or down days when you have arthritis, depending on how active their arthritis is. On a good day, joints do not hurt, and there’s lots of energy for playing with friends. In contrast, on down days, your child may feel sad or frustrated if they’re limited because of pain or low energy. Let them know it’s ok to share their feelings with you and explain that being sad, mad or grumpy is very normal. Tell them that you’re there to help them understand and deal with these feelings.
Encouraging your child to participate in all aspects of their medical treatment, understand their disease, and share their feelings can help give them the tools to confront this disease. Supporting both their physical and mental health is essential for all children, and will give your kids the self confidence to participate in school, sports, and life.
Elizabeth (Betsy) Roth Wojcicki, RN, MS, CPNP, is a registered nurse practitioner at Children’s Wisconsin where she specializes in pediatric rheumatology. She is currently a member of the American College of Rheumatology’s Committee on Marketing and Communications.