Ulcerative Colitis doesn’t care about social calendars. It interrupts birthday parties. It shortens shopping trips. You notice the stares. The quiet confusion. Your child notices it too.
So what do you say?
Ask first, assume less
Gurwitch suggests starting simple. Ask them what they think.
Don’t guess. Don’t project adult fears onto small minds. “In their mind, its probably far worse,” she says. Getting it out in the open? That’s a starting point. A baseline.
Use the real words
Adults hate medical terms. They feel cold. Clinical. Wrong for a five-year-old.
Wrong idea.
“If you avoid medical terminology, they fill in the gaps,” Gurwitch warns. And guess what happens in the gap? Horror movies. Misinterpretations. Stories completely off the mark.
Be clear. Give the name. Ulcerative colitis. Or UC.
“My belly doesn’t work the same as your belly.”
Gerald Buldak tried something different. He used a frame of reference they knew. A tummy ache. Just one that never leaves.
“They know what a tummy ach is… pitch it as a tummy ache that won’t go away.”
It keeps things grounded. Understandable.
Validate the weird feelings
Anger? Sadness? Fear? Yes. All of it.
Let them feel it. Validating their emotion helps tremendously. But don’t hide your own struggle either. It’s okay to admit you’re upset too. You’re working with doctors. You’re preparing. You’re doing what you can.
Kids need to see how an adult handles stress. Not by pretending it doesn’t exist, but by showing the management plan. The reality check.
Stop the guilt trip
Kids are weirdly intuitive about blame.
They think they caused it. That their behavior triggered the flare.
“We need to reduce that perception,” says Gurwich. Tell them clearly. It is not your fault.
Buldak puts it bluntly. Even kids feel survivor’s remorse. Remind them: Just be the great kid you are. You don’t need to fix it. If you need help, you’ll ask.
Security matters
Hospital stays are terrifying. Not because of the disease, necessarily. But because of the separation.
“If Mommy goes… what happens to me?”
Answer that. Immediately.
There is always someone. A grandparent. A neighbor. Your partner. A trusted friend. Establish the chain of command before you pack your hospital bag.
“Young children need a sense of security.”
Buldak uses tech to bridge the gap. FaceTime. Zoom. Skype. It’s not the same as being there. But seeing their dad is alive and okay? That counts for something.
Let them loop
They will ask the same question.
Again.
And again.
Patience. It takes time for little brains to process. Or maybe they are just anxious. Or didn’t hear you over the TV.
“Children should leave any discussion knowing they can ask questions anytime.”
Don’t shut it down. Don’t rush the exit.
Be the model
You’ve explained the illness. You’ve validated the feelings. You’ve handled the hospital visits.
Now, live the response. How do you cope? How do you manage stress? You show them by doing. Not by saying.
