What Not to Say to Caregivers of Kids With Complex Illnesses

“I don’t know how you do it.”
“I could never do what you do you.”
“You are so strong.”
“I don’t know how you keep your head above water.”
“I hope you are finding time for self care.”

These top the list of things not say to your friends or colleagues who are caregivers to children with complex, chronic, life-limiting, or life-ending diseases.

I was talking about this very topic earlier this week while visiting with another caregiver whose daughter has the same awful illness as my daughter — and we were unpacking why these statements land and cause so much pain even while offered with an intention of kindness.

Here is the thing … We don’t “do it.” Of course you “could and would do it.” And we are not “strong.” We are not keeping “our heads above water.” And as much as we appreciate the confidence in our abilities — we just want to be seen and to share our feelings, especially when talking with our adult friends, family members, and colleagues.

From the outside it may appear like we are all of those amazing things you attribute to us, because part of parenting a kid with a chronic illness is holding hope and the appearance of strength for the entire family. But it’s exhausting, and scary, and really hard.

I am lucky enough to help run wellness retreats and groups for the caregivers of children and teens living with complex and chronic illnesses. Regardless of the caregiver age, ethnicity, race, or their child’s illness or medical condition — one of the unifying themes of the caregivers I work with are feelings of isolation and being unseen.

Over and over group members say to each other, “I see you, tell me more,” and then they listen deeply. There is power in listening. We cannot change the outcomes of the illnesses or the progression of the diseases that have hijacked our entire families and harm our children, but we can and do show up to listen deeply.

Below are the kind of things we as caregivers say to each other. And I want to invite those of you who have the privilege of parenting healthy kids to learn from us. And instead of telling us how we are or how we are doing, please consider asking us the following:

“How are you?”
“I don’t know what to say.”
“Is there anything I can do for you in this moment?”
“What kind of care do you need right now?”
“How are you feeling?”
“That has to be so hard — do you want to tell me more about it?”
“Can we find a time to talk more?”
“Do you have the support you need?”

And we may not have the answers right away, but keep asking us, because eventually we will know what to say. And as caregivers, we know it’s hard and scary for those of you who don’t live with the specter of chronic childhood illness to show up for us like this. And we so appreciate it when you do, because in doing so, you are caring for us with your listening.