How to Talk About RA With Kids

It is a remarkable (and stressful) responsibility to shape young minds' understanding. As a mother, I don’t take this job lightly as it pertains to many topics, pearls of wisdom, and even the behavior models I am setting for my kids. My kids are watching me and absorbing me like the little grimy sponges they are. Therefore, I have put a lot of thought and consideration into determining what message I want to communicate to my kiddos about life with chronic illness. I don’t always get it right, but preparing has helped me talk about chronic disease in the presence of children healthily and positively.

In a previous article, I discussed why I felt talking about RA with kids was an important step of being a parent (aunt, uncle, parent’s best friend, etc.). In this article, I would like to share how I explain to my kids about living with chronic illness, specifically RA. What information did I share? How do I explain complex concepts to little ones? How do I answer tough questions they might have?

Parental and chronic illness credentials

You might wonder what credentials I have made me worthy of sharing my experience. And let me tell you, in terms of chronic illness: too much. I live with cystic fibrosis (CF), a progressive genetic lung condition, as well as diabetes related to my CF. In addition, I live with RA and a bunch of less consequential issues such as kidney stones, high blood pressure, sinus disease, managing a port-a-cath, continuous glucose monitor, etc, as a result of CF. I have a lot going on medically that is obvious to all kids and adults.

Offspring count: I have two curious and wild boys, ages 7 and 3. They love to figure out how things work, constantly are getting into things, and require a lot of energy.

My boys know my “normal” as someone who manages health issues daily. They have seen me on a spectrum from very sick to fairly healthy, and everything in between. To them, I’m not an out-of-the-ordinary mom, but as they have gotten older curiosity has led to ask questions about my health and the treatments I do.

My three dos for talking to children about RA

When I started talking to my oldest son about my chronic illnesses at a young age, I wondered if the conversation would pan out the way I wanted it to. My goals were simple: be honest, ensure he felt safe and cared for, and welcome open communication far into the future. Ensuring these hopes were met, I set three strict “dos” to follow in future conversations.

Use age-appropriate truths

I always aim to use age-appropriate truths when explaining and answering questions about RA (and other illnesses). It’s a delicate balance between being honest and not overwhelming or scaring your child with information they aren’t old enough to process. For example, I might explain RA to a 3-year-old as a boo-boo in my hands that makes me sleepy. In comparison, I might say RA is caused by aching pain in my hands that comes and goes to my 7-year-old. For an older child, I would include a snippet about the immune system and so forth. I don’t give too much information, but I also don’t deny the fact something is going on. Short, sweet, age-appropriate, and informative,

This is the most helpful tip I discovered when explaining chronic illnesses to children. As a parent, you know your child best. You know their level of understanding and how well they process complex subjects. Tailor your explanation to their level and personality to help them understand better while being honest and they’ll be sure to thank you.

Circle back to positive framing

During a time when I was very sick and declining with CF, I tried to always circle back my explanations for my son in a positive light. Potentially for my emotional health and to protect his little mind from worry, I discovered this was a powerful tool for dealing with life’s harshness. Now, I make it a point to end these types of conversations on a positive note. I don’t ignore the difficulty, pain, or grief chronic illness can bring but I try to highlight the bright side of what I have learned, the small joys I can focus on, or the time it’s given me to slow down and spend time with my kids. I might say during a really bad flare, “Mom is having a hard time right now with her hands and body hurting, but I am so happy to be cuddling with you and watching this movie.” Gratitude is a muscle and I hope modeling this type of exercise proves to be a powerful skill for my kids in the future, as well.

Welcome questions

Always, always, welcome questions from kiddos about RA and your experience. It doesn’t matter how tired or busy I might feel, it’s so important to me to show my children I welcome all their questions. I want the lines of communication to remain open now and into the future, so if something is bothering them about mom being sick or otherwise, they know they are welcome to come to me and share. Like a seedling, open communication needs to be delicately tended to, too much meddling and the seed is waterlogged, and too little and the seed is starved. That’s my motto at least.

How have you handled talking to young children about RA? Do you have a game plan or strategy that works for your family? Please share with us below!