Why We Should Talk About RA With Kids

As a parent, you have likely collected peculiar (and sometimes niche) skills due to your parenting journey. Whether you're a master creative thinker and design the best cowboy costumes in the Wild West, or you’re the ultimate engineer capable of fixing any tiny toy with an absurd number of parts and pieces, your unique skills as a parent set you apart.

One of my special skills (and most practiced... I guess) is explaining chronic illness to my young children in a way they can absorb and understand.

My chronic illness hat trick

As a parent, I live with cystic fibrosis (CF), a genetic lung disease I was born with that requires a lot of unique and blatantly obvious treatment and management (i.e. a giant life vest that blows up and shakes me around, a port catheter that sticks out of my side, IV medication I infuse at home, etc.).

As a result of my CF, I also have CF-related diabetes, a whole other disease that sets itself apart (a continuous glucose monitor that beeps and chimes, candy for low blood sugar the kids can’t have, etc.). And lastly, I have rheumatoid arthritis (you know how that goes...) to close out my hat trick.

My kids would honestly have to be utterly clueless to ignore the chronic illness present in my life. It’s everywhere.

Why should we talk to kids about chronic illness?

As a result, I’ve had many conversations throughout the years explaining why Mommy does this or why Mommy takes that. Sometimes I get it incredibly right and I’m proud of the way I handled their questions. And sometimes — like all parents — I flounder, saying something I wish I didn’t, worried I upset them or made them afraid.

However, throughout it all, I still believe we need to talk to kids about chronic illnesses like RA, and there are helpful and healthy ways to do that.

The prevalence of chronic illness

An estimated 129 million people in the US have at least 1 major chronic illness.¹

That’s nearly half the population! It’s likely your kids will come across a loved one — grandparent, parent, aunt, uncle, cousin — in their life who is living with a chronic illness.

It’s also likely they will see loved ones taking medicine, going to doctor's appointments, and managing chronic illness in the face of work and relationships. There are so many valuable life lessons about caring for your body and mind, self-care, medication safety, and the influence of politics and our healthcare systems that come up when talking about chronic illness as a whole.

Moreover, they themselves might even live with a chronic illness one day. Frankly, having conversations about living with chronic illness just makes sense in the world we live in.

Making invisible illnesses visible

From my perspective, I think it’s vitally important we talk to kids about chronic illness upfront in an age-appropriate and normalizing way — especially if you’re a parent with a chronic illness, because you may be shaping how your kids conceptualize and think about chronic illness in general, as well as their understanding of invisible illness and disabilities.

I didn’t have the words to explain what I was living with when I was younger in the late 90s. I was sick, yes — but I also looked like a normal, healthy young girl. I grew up with an invisible illness, and that definitely made living with CF a more challenging experience. We just didn’t talk about those experiences as much back then, and my hope is kids today have a better understanding of the fact that you may not always be able to see the battle someone is fighting.

Building a more empathetic world

In the context of RA, it’s even more important to have open and honest conversations surrounding the idea of pain. Pain is so subjective to the individual and often invisible to outsiders, both of which are very abstract concepts for little minds to process and understand. It can be confusing to see Mom doing laundry one day, but then too tired or in too much pain to play blocks another. I never want my children to think something they did was a cause for my sometimes confusing behavior.

I think living with pain and helping young kids understand that experience are valuable empathy-building lessons for all parties involved. It goes back to the idea that, as humans, we can never fully know what another individual is dealing with on the inside, quietly, behind closed doors. When we bring these conversations to light, we can help shape a more compassionate and empathetic world.

Do you think it’s important to talk about chronic illness with kids? Share with us below!