Recently, my fifteen-year-old daughter Raeleigh asked me if we could go to the mall. Makes sense—she’s a teenager with her first job and a few dollars she was excited to spend. But that particular day, I was in pain and running on empty. My answer had to be, “Not today.”

Her face shifted with disappointment, and in that moment I was reminded of what she lost when I got sick. She must have felt it too, because she said quietly, “I love you, Mimi, but sometimes I wish your body worked better so we could do all the things we did when I was little.”

Parenting with an invisible illness comes with challenges like this—explaining limits, holding space for their feelings, and still building empathy without placing too heavy a burden on them. Over the years, I’ve had to learn how to talk about my illness in ways that make sense for each of my children at different ages.

Keep It Honest but Age-Appropriate

Kids don’t need every detail, but they do need the truth. When my kids were little, I used simple language like, “Mommy’s body gets tired faster than other people’s,” or “Sometimes my body works against me.” As they grow, those explanations grow with them.

One way I’ve explained it is like this: “You know how your body fights germs when you’re sick? Sometimes people’s bodies get confused, and instead of fighting the bad germs, they attack healthy parts of the body and fight against themselves.” My kids immediately got it, because they’ve all experienced being sick and understood how the body is supposed to work.

For younger children, it also helps to use comparisons they understand—catching a bad cold, feeling sore after sports practice, or needing a break after a long, busy day.

Preteens and Teens: Understanding the Bigger Picture

Preteens and teens are capable of understanding pacing, flare-ups, and recovery days—especially when they’ve lived alongside them. They know firsthand how invisible illness affects family life.

For Raeleigh, the difference is stark. She remembers the “before” me—the mom who played on the floor, juggled a packed schedule, and could always keep up. Her grief sometimes shows in moments like the mall conversation, where she wishes we could go back to the way things were.

Channing, though, has only ever known me this way. When he was little, he called Thy “Mom” and me “Old Mom.” While I am ten years older than her, I’m convinced it was less about age and more about how I move like an arthritic old lady most days. He never said it with malice. It was simply his observation, his way of naming the world as he saw it. And from that same gentle honesty has come his tenderness. Channing has always been careful with me, offering soft hugs as if he instinctively knows I’m fragile.

Focus on Empathy and Awareness

Invisible illness is often misunderstood because “you don’t look sick.” Kids can learn early on that health isn’t always visible. I remind mine that just because someone looks fine on the outside doesn’t mean they aren’t struggling inside. This builds empathy not only toward me but toward others they’ll meet in life who may live with invisible challenges.

Raeleigh, especially, has grown into this understanding. She knows that the day after a swimming trip, or one packed with doctor’s appointments, I will be tired, sore, and easily overwhelmed. Instead of pushing back, she steps in. She helps with her brothers, pitches in with cooking meals, and quietly carries some of the family load. When she cooks, I try to rest nearby on the couch so I can back her up, offer encouragement, or answer her questions. It’s not always easy, and it’s certainly not what I dreamed for her teenage years, but it shows how deeply she understands the realities of living alongside invisible illness.

But these conversations don’t land the same way for each of my kids, because their experiences with me are so different.

Closing: They Just Need Their Mimi

That moment at the mall stayed with me. Hearing Raeleigh wish my body worked better broke my heart, but it also reminded me why these conversations matter. She wasn’t being ungrateful or unkind—she was grieving out loud. And because I have chosen to be honest with her, she trusts me enough to share those feelings instead of holding them in.

The truth is, my kids don’t need a “perfect” mom who never gets tired, never cancels, and never needs help. They need the mom they have—the one who listens, who explains, who loves them deeply even on the days when her body will not cooperate.

So we keep talking. We keep adjusting. And we keep finding ways to love each other through the hard days and the funny ones, the mall trips that do not happen, and the evenings when Rae takes over dinner while I rest on the couch. Because whether I am at my strongest or my weakest, they do not actually need perfection.

They just need their Mimi. ❤️