How to Start Discussing Polycystic Kidney Disease (PKD) with Your Kids

You've probably clicked on this article because you have some interest in speaking to your kids about polycystic kidney disease, but you're not sure where to begin.

Hi! I'm Ciara, and I'm a PKDer, mother, holistic nutritionist & wellness coach.

Maybe you personally have polycystic kidney disease like me, or your family member does, or your child does (or might).

Maybe you are the first one in your family to be diagnosed, or maybe the generations before you didn't talk about it much.

Either way, looping kids into our wellness conversations can help everyone feel more comfortable & empowered. Our kids are an important part of our family unit and they're curious, helpful, supportive and eager to learn.

I wrote this article because I am a mama of two living with polycystic kidney disease and including my kids in my journey has been a positive experience so far.

Here's a little bit about my experience sharing with my kids:

I live with ADPKD1 and have two little boys who are 4 and 5. They may also have PKD but I have not had them tested.

I'm trying to raise my boys to be generally health-conscious so that they are ready to tackle any challenge that comes their way, including a PKD diagnosis.

I have been discussing my own health with my kids since they were tiny.

My openness helped get us through a tough situation...

One year ago, I was taken away by ambulance due to a kidney cyst rupture. My husband was out of town and I was in A LOT of pain that evening. I was honest from the beginning with my boys since they already knew a thing or two about my kidneys.

I told them my kidneys were really sore and I needed to go see the doctor for help. I think having that knowledge helped reduce the panic in the house as we waited for help to arrive. My mother-in-law arrived and soon after, so did the ambulance.

I explained to the boys that I was okay but I'd probably be away for a few days in order to get better.

They went to school and told their teacher that I was taken to the hospital with sore kidneys but I'd be home soon; I knew I had gotten the message across.

So, here's what my kids know about polycystic kidney disease:

Mummy has spots on her kidneys (they've seen the imaging)
Mummy has a growing belly because of big kidneys
Mummy has frequent doctor's appts to check on her kidneys
Granny had surgery to get a new kidney because hers were sick
Mummy drinks a lot of water to be healthy
Mummy eats lots of fruits & veggies to be healthy

As you can see, we're keeping things light, simple and age-appropriate.

My boys are still very little so I bet you're wondering how I started talking about such a tough topic. It didn't just happen one night, it was a gradual process of introducing different concepts.

Firstly, try not to worry (because I know you are/will!)

If you're anything like I was, you're probably fearful of scaring your little ones with the ugly truth of this disease, but the conversations you have with them don't need to be negative, scary or even heavy.

I'm here to say that you CAN share with your kids in a casual, healthy way if you're careful with your narrative, and here's why I believe you should:

Good reasons to talk to your kids about PKD (if you need some motivation):

the way you live our life sets the example for your kids—they are already watching you, why not share your WHY for wanting to be healthier?
you will feel liberated when you stop hiding, and opening up to your kids is a great step
you will feel better supported - your family is your team
it will normalize conversations about PKD within your family and beyond
your kids will feel more confident + empowered, especially if they also have the disease
it will lead to better outcomes for the next generation
it will reduce the stigma around chronic illness
it will help raise awareness for PKD

Now that you're feeling convinced to have that initial conversation, here are some tips on how exactly to begin:

Be sure to pick a good time

check your mood before you start; do not start down this road if you're feeling sad, stressed or scared yourself. Take some time to process these emotions first.
don't wait until something BIG happens to your family to explain what's going on; get ahead of this

Start early + ease into it

you can keep it very simple when they're little; this will help build a solid foundation of knowledge for them
little kids enjoy learning about how the body works; if you're reading an anatomy book, be sure to introduce them to the kidneys and share some of your story at this time if you feel ready
don't explain things all at once; there are many opportunities throughout the day to "sprinkle" little tid bits of information into conversations around health & wellness

Always talk about yourself and what you are doing + why

this is more engaging for them and less scary when it's not directly about them
lean into story-telling and share what you're learning on your journey (ex. "I just learned that avocado will help make my kidneys happy so I'll be eating more of it!")

Make it a convo about HEALTH rather than illness

tell them that you eat/act/live a certain way to keep your kidneys happy
explain why you're always hydrating or why you try to get enough rest... it's all about healthy, happy kidneys!
ex. I've explained to my kids how I try not to eat too much salt so that my kidneys stay happy rather than saying "I can't have salt because I have kidney disease."

Keep it as positive as you can

find the silver lining, spin your story, stick to the enlightened perspective for them
share your "wins" and your excitement about positive changes in your health
help them to understand what it's like to be grateful for good health
remember, your mood and your attitude about PKD will directly inform your kids'

If they ask a question you can't easily answer...

explain that you're not sure but you'll find out
take some time to digest what they've asked and go back to them when you're ready to continue the conversation
don't fabricate information
don't share information if you're uncomfortable

Keep the door open (but set boundaries)

they'll have more random questions in the future and knowing you're there will bring them comfort
sometimes you may be stressed or not wanting to discuss your health, and that's okay! Let them know the truth: you'll find time another day to talk about it

I sincerely hope you've found this helpful.

My boys are still quite little, so I'm sure my perspective on this will evolve as they grow and begin to asking bigger, deeper questions.

I'll continue to share PKD/parenting insights as we move through different life stages because I know how overwhelming it can feel to be dealing with chronic illness in the family.

You are not alone.

If you have questions, please leave me a comment or contact on Instagram (@pkd.wellness)

XOXO