The things people say when they don’t know what to say

Something I never expected about raising kids with medical conditions is how much people rely on appearances to decide who is “sick” and who isn’t.

Before rare disease became part of our family, I’m sure I did this, too, without even thinking about it. Most of us do. We think sickness should look a certain way. But living with my girls has taught me that health and illness are much more complicated than what we see on the outside.

Caroline, my younger daughter, has late-onset Pompe disease. It’s a rare genetic condition that affects her muscles and body from the inside out. It’s serious and lifelong, and it’s something we think about every single day. But if you saw Caroline at the playground or in the grocery store, you’d probably never guess. She’s usually smiling, playing, and laughing. She looks like any other kid.

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Evie, my oldest, has alopecia universalis, an autoimmune condition that causes her to lose all her hair. But unlike Pompe disease, alopecia doesn’t make her sick. She’s healthy, strong, and full of energy. Her body feels good.

But visually, people often assume the opposite. And that dynamic can be surprisingly emotional to navigate.

One of my girls looks healthy while quietly managing a serious disease inside her body. The other looks sick to some people just because she looks different, even though she’s completely healthy. Living between those two realities has completely changed the way I think about illness and health.

It’s also changed how certain comments feel when I hear them. Most people mean well. I really believe that. But when someone says, “At least Caroline doesn’t look sick,” or quietly asks if Evie is OK, it reminds me how hard it is for people to accept that illness doesn’t always look the way we expect.

Sometimes those comments are just awkward. Sometimes they sting in ways I didn’t expect. And sometimes they just show how much we’ve all learned to connect health with how someone looks.

There have been times when people worried more about Evie, just because they could see something different about her, not realizing that Caroline was the one whose body was quietly fighting a serious disease every day. That emotional contrast is hard to explain unless you’ve lived it yourself.

No perfect thing to say

There’s a strange tension when one child’s diagnosis is invisible and the other’s is visible but misunderstood. One gets concern she doesn’t need, while the other sometimes doesn’t get enough understanding because her illness is hidden.

As a parent, I find myself always translating, always explaining, always trying to help people see that visible and invisible conditions both deserve compassion, even though they aren’t the same. And, honestly, sometimes it just feels exhausting.

It’s not because people are unkind, but because families like ours spend so much emotional energy managing both the conditions and everyone’s reactions to them: the assumptions, the questions, the uncomfortable pauses, the attempts to say the “right” thing.

I think one of the hardest parts is that there often is no perfect thing to say. When people don’t know what to say, they tend to reach for reassurance. They say things like: “But she looks great.” “At least she seems healthy.” “You’d never know anything was wrong.”

And while those words are meant kindly, they can feel complicated when you’re living with a disease that is very real, whether anyone else can see it or not.

At the same time, watching Evie move through a world that reacts to visible difference has taught me something else. I’ve seen how quickly people make assumptions based only on what they see. I’ve watched strangers stare. I’ve felt people trying to figure out what’s wrong before they ever see who she really is.

The truth is, there’s nothing wrong with her. She is healthy. She is beautiful. She is fully herself.

Both of my girls have shown me, in their own ways, just how unreliable appearances really are. Illness can be invisible. Health can look different. And people are almost always carrying things we can’t see right away.

Realizing this has made me gentler, slower to assume, and much more aware of how powerful words can be.

Sometimes, the most meaningful thing you can offer a family like ours isn’t perfect advice or polished reassurance. It’s simply the willingness to listen, to learn, and to let go of the idea that you can understand someone’s story just by looking at them.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.