What People Get Wrong About Sick Kids (and Why Caregiver Month Is Complicated)

When people hear I got CIDP at 10 years old, they almost always say the same thing:

“Your parents must have been so worried.”

And listen… I know they’re trying to be kind.
But every time I hear it, my trauma brain whispers:

Well, fuck off Karen — maybe I was worried.

Maybe I was terrified that I could die.
Maybe I spent every day wondering what my life would look like now.
Maybe my entire foundation cracked because nobody could tell me I’d be okay.

When you’re a sick kid, you aren’t a side character in your own medical trauma story.
You’re living it.
You feel every second of it in your tiny, terrified body.

Here’s what I wish more people understood:

Kids notice everything.

They know when adults are scared.
They know when doctors don’t have answers.
They know when the fear in the room is louder than the truth.

I lost almost all my friends because I was constantly in the hospital.
This was 1994 — no cell phones, no Facetime, no group chats.
Just isolation, fluorescent lighting, and the sound of everyone whispering about you like you weren’t right there.

And the worst part?
I had to hide all my feelings to keep everyone else calm.

Imagine you, as an adult, learning your body is attacking itself, your nerves are failing, and you might not make it.
Now imagine being ten.

Night after night, I told myself:
“You will not stop breathing tonight.”
That was my bedtime ritual.
Every. Single. Night.

So yes — caregivers matter.
Caregivers deserve love and respect.
My husband Dan is the world’s best caregiver and you’ll meet him on the podcast.
Caregivers ALSO experience trauma.

But please — for the love of god and cats and Dateline:
Do not minimize the child’s experience by immediately centering the parents’ fear.

Children living through medical trauma are surviving it just as deeply — and often silently.

To every trauma survivor and every caregiver reading this:
I see you.
I honor you.
You don’t have to be silent anymore.

Because here?
Here we talk about the truth — even when it’s messy.