Kids Korner: Telling your friends about your immune deficiency

This article was first published in the Fall 2026 edition of the ADVOCATE newsletter.

Your friend asks, "Why do you go to the doctor so much?" or "Why can't you come to my sleepover?" For a second, you don't know what to say. If this has happened to you, you're not alone. A lot of kids with primary immunodeficiency (PI) take that same pause before they answer. The good news is that talking about PI with your friends is easier than it seems, and it can actually make your friendships stronger.

PI is just part of how your body works

Think of your immune system like a defense team that protects your body from germs. If you have PI, your team just needs a few extra players to do the job. PI isn't scary or something to be ashamed of. It's simply part of how your body works.

Paddy Clary, who is 12 and loves Star Wars, Minecraft, and playing drums with his friends' band, shares why it matters to him to tell people about his immune deficiency.

"Sometimes I am sick for weeks, and they want me to come and hang out, which can be hard if they don't understand," he said.

When friends know what's going on, they can be more patient and understanding.

Clary's mom, Rendi Clary, has good advice for moments like this: be open when you're not feeling good, and be honest if you don't want to push yourself to hang out. She also reminds kids to remember how important their appointments are, even when they make you miss things or feel different.

It's not just kids with PI who deal with this. Becky Lenning, a therapist who has worked with kids and families with PI for 15 years, points out that siblings face their own challenges. They have to talk to their own friends about it, and they have to be careful about bringing germs home.

"They go through a lot too, and sometimes get overlooked because of the attention that their sibling needs," she said.

You don't have to face it alone

Telling friends about PI clears up confusion, and real friends want to understand. It helps them understand why you might miss school, wash your hands a lot, or take medicine.

Lenning's son, Christian Lenning, who is now 22 and a college graduate, sometimes worried as a kid that he wouldn't get invited to things because friends thought, because of his PI, he couldn't come anyway. That worry is common. Kids want to fit in and be included, and sometimes they stay quiet about their PI because they're afraid of being left out. Talking about it, even though it feels hard at first, usually helps more than staying silent.

Clary found his own way into the conversation. One day he was joking around, pretending to cough a lot. It turned into a real conversation with his friends about his immune deficiency. "Yeah, that probably would happen to me," he told them, turning a silly moment into an honest one.

Lenning offers this reminder: "Kids are, by and large, very understanding. You don't need to know everything about your diagnosis to start talking about it.”

Just start building confidence, one conversation at a time. Clary agrees. He says the less bothered you are about having PI, the less bothered you'll be by how other people react to it.

What to actually say

Not sure where to start? Here are some simple ways to bring it up: “I have something called PI. It means my body needs extra help fighting germs. That's why I wash my hands a lot, take medicine, or miss school sometimes. It’s something I was born with, not something that’s contagious."

Pick a calm, comfortable time and place to talk, not in the middle of recess or a big group. If a friend reacts in a confused or awkward way, that's OK. Give them time, and ask a parent or teacher for help if you need it. Say something like, “I know it's really confusing to understand. It’s confusing for me too, but I trust my mom. If you want, you and your dad can come over and talk to my mom.” Handling a tricky moment like this can actually help you feel stronger next time.

Lenning suggests practicing with a trusted adult before the real conversation.

"It's huge in helping kids navigate these conversations that most kids don't have to know how to do," she said. “It's also normal to feel a little nervous about it. And remember, you don't owe anyone your whole story. Not everybody deserves all of the information. No one needs to feel obligated to provide more than they are comfortable with.”

Clary has his own timeline for sharing. "I would say, if you are just meeting your friends, don't tell them right away. Wait to let them get to know you, and eventually, if they are really good friends, they will understand." He also said waiting until people really know him helps him feel less nervous.

You are not alone

Having PI is something unique about you, but it is only one part of your story. It's not the whole story. As Lenning put it, "This is something my body deals with, but it is not who I am."

Talking about PI gets easier with practice. Real friends will still want to hang out and do all the same fun things with you. Whether you choose to share a lot or a little is up to you. "Our story is our story," Lenning said.

Most importantly, remember you're not alone. There are many kids out there navigating the same things you are, along with parents, doctors, and therapists who understand rare and chronic conditions.