Originally published on the SanguineBio Patient blog
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A chronic illness diagnosis involves many more complexities than just the disease itself. It isn’t just about the symptoms and the impact on your body. Illness affects every aspect of life including our family relationships and children.

Today I want to talk about the challenge of talking to your children about chronic illness. I was diagnosed with multiple sclerosis (MS) at 12 years old. Since I was a child myself at the time of diagnosis, I can share unique insight about what can help a child process the news of illness. That said, each child is different and everyone needs to use their own judgment and intuition in finding the best approach…Not the best approach for you, the best approach for your child.

Why is it so important to center this around your child? Because every child is a unique individual. You might have one child who easily absorbs facts and science- teaching them about the physiology of what you are experiencing might be the best approach. Another child may be very hands on- the best approach for them might include creative scenarios in wellness management. And, you might have one child who is extremely sensitive, the kind of kid who feels your own feelings and pain- their best approach may look different than the rest.

With that said, I will do my best to provide some general tips on talking to children about chronic illness. With over 20 years of experience as a patient advocate, I have coached dozens of families through this moment so some general rules do apply.

Be Open

I have seen parents try to hide things from their children. It never ends well. Children know so much more than you realize and if you are hiding something, they will know. As a Marriage and Family Therapist, I sometimes work with an entire family. I always start a case like this by asking the youngest verbal member of the family why they came to me. Sometimes this can be as young as five, and they are always spot on. Children know so much more than we realize. They might not put it in the same words, but they know something is happening. Hiding it sends the message that what is happening is extremely scary. And they don’t interpret that as too scary for them to handle, they interpret that as too scary for you to handle. That kind of fear is very overwhelming for a child with potential long term traumatic impact.
Instead, choose to be open in the way that will fit your child’s needs best. You might have to be creative about how you share it, but the more you share and the earlier in the process, the better. If you are contained in yourself, your child will feel contained and as a result, this challenge won’t feel like something that will destroy their family. Being open is a way to model resilience.

Get Creative

Kids are much smarter than we think, but they usually need explanations to be in a language they can relate to. For example, when I teach children about MS, I use a frayed electrical cord to show them that the wires inside are like our nerves and the rubber coding of the wire is something we also have around our nerves in the body (the myelin sheath). When a wire in the house doesn’t have that rubber coating, the appliance might not work correctly. The same thing can happen in the body. I also give them thick rubber gloves and practice picking up paper clips with them to see how different it can feel for someone with MS to use their hands when experiencing symptoms. This exercise brings it to life for them. Finding a metaphor they can relate to is really helpful when talking to children about chronic illness. Using a video game they play, a show they watch, characters they like, or stuffed animals they love can make it a safer conversation for them to have.

Don’t Imprint Judgment on the Diagnosis

Children assign meaning to things based on what we teach them something means. When a toddler falls, you are supposed to look at them and smile and giggle. If you get scared, they will get scared. If you tell a child that the diagnosis is very serious and scary, they will think that. If you tell them that as a family you are very resilient, that you will do your best to explore the best treatment options, and that you trust that everything will be OK, even though things are going to change and be hard sometimes, they will assign that meaning to it. The healthiest meaning you can assign to diagnosis is the following:
Our physical bodies are the most advanced machines on the planet. We are running complex software and just like sometimes the phone or computer doesn’t work, our bodies can go through the same type of issue.

Introduce the concept of a New Normal

The way a family changes when a new baby joins the family and everyone adapts to a “new normal,” this too will be a new normal. Bring your children along for the ride. Let them know that things might feel a little different and that day by day, all of you will manage the transition to a new normal together. Let them know you will do your best to make it the best possible experience for everyone. Include them in creating the new normal by asking for their input. For example, “we need to help mom save energy so what ideas do you think could help with that?” “Dad is going to take a break from driving morning carpool. We already checked with Steven and Adam’s families and both could drive you, what sounds more fun to you?”

Allow them to respond in their own way

A child’s reaction might surprise you. They might be curious, they might need to be in silence, they might be happy, or….they might take it as a fact because they already knew. Don’t judge their reaction and give them plenty of space to react in an authentic way. For young children especially, it can be helpful to encourage a child to tell their doll or stuffed animal how they’re feeling or show you how the doll or animal feels. That is a reflection of their inner world.

Make it more than one conversation

In the initial weeks and months, it’s important to keep the conversation going and check in with your children regularly. At different stages of their development, they will need opportunities to express how they are relating to the diagnosis and the family member differently. Create an environment where they know it is safe to talk about it whenever they need. If it is still hard for you to talk about it, that’s OKAY- you can convey that in a way that doesn’t prevent them from expressing their needs or feelings. If this is the case, you can say something like, “this affects all of us and just as you have different feelings at different times, sometimes I don’t feel like I want to talk about it.” If you know there are particular times that you feel more sensitive, you can express that you want some advance notice that a conversation needs to be had.

Overall, the goals of sharing with your children at any age are to

  1. Share it in their terms,
  2. normalize the transition,
  3. create a safe space for each family member to relate in their own way.

Remember that your kids already know and understand so much more than you realize. The more open you are with them, the better. It’s natural to also be afraid for yourself, which is why it’s imperative to make sure you have your own emotional support. This translates to their experience as well by modeling that it is safe to address your emotions. It is healthy to seek support through this very big transition. On a final note, and a more personal one, I want to share that I have coached so many families through talking to children about chronic illness and it is usually much easier than parents anticipate. So be open to the idea that this might actually be easy and nourishing for your entire family.