Anxiety in public spaces: what people don’t see when they stare

There is a particular kind of anxiety that can rise up when you live with Huntington’s disease and step into a public space. It is not always loud. Sometimes it is a quiet tightening in the chest before you even walk through the door. Sometimes it is the mental rehearsal that begins long before you leave the house. How far is the walk? Will there be stairs? Will people notice my movements? Will I have to explain myself today?

For many of us with HD, going out into the world is not always simple. Something as ordinary as a trip to the grocery store, the airport, a restaurant, or a waiting room can become emotionally exhausting before it even begins. People on the outside may only see a person standing in line, walking a little differently, moving in a way that catches their attention, or seeming flustered. What they do not see is the private storm that can happen inside.

They do not see the self-talk it takes to stay calm.

They do not see the energy it takes to hold yourself together when your body feels unpredictable.

They do not see the way a single stare can make you suddenly feel exposed.

And they do not see how quickly shame can try to attach itself to something that was never your fault.

One of the hardest parts of being in public with HD is feeling observed without being understood. People stare for all kinds of reasons. Sometimes they are curious. Sometimes they are confused. Sometimes they are making assumptions. In those moments, it can feel like your whole person hood disappears and all that remains in their eyes is whatever looks “different.” That experience can be deeply unsettling.

When people stare, they may think they are only looking for a second. But for the person being stared at, that second can feel much longer. It can trigger panic, self-consciousness, anger, embarrassment, or sadness. It can make you want to leave before you even had a chance to enjoy where you were. It can turn a simple outing into something you have to recover from later at home.

I think this is one of the most invisible burdens of HD. So much of the condition is discussed in terms of movement, cognition, mood, medications, and progression. All of those things matter. But we do not always talk enough about the emotional labor of being seen in public while feeling misunderstood. We do not talk enough about what it means to brace yourself for people’s reactions. We do not talk enough about how public anxiety can shrink your world if you let it.

I understand that feeling more than I wish I did.

There have been moments when I could feel people watching me and my whole body became even more tense. The irony is that anxiety itself can make symptoms feel worse. The more self-conscious you become, the harder it can be to regulate your breathing, your thoughts, your movements, and your sense of safety. You may start rushing. You may forget what you came there for. You may become overwhelmed. Then, if someone continues to stare or says something insensitive, it can push you over the edge emotionally.

What people often do not understand is that public anxiety with HD is not vanity. It is not oversensitivity. It is not weakness. It is a nervous system response layered on top of living with a disease that already asks so much of us. It is the stress of navigating a world that is often not built with compassion for visible difference.

And yet, even with that truth, I do not believe the answer is to blame ourselves for struggling. I think the answer begins with honesty. We need to say out loud that public spaces can be hard. We need to stop pretending that we are always fine when we are not. There is no failure in admitting that being watched can hurt. There is no shame in naming the anxiety.

There is also no shame in adapting.

Sometimes strength looks like bringing someone with you.

Sometimes it looks like using a mobility aid.

Sometimes it looks like choosing quieter times to run errands.

Sometimes it looks like stepping outside to reset your breathing.

Sometimes it looks like canceling plans without apologizing for protecting your peace.

And sometimes it looks like going anyway, even while feeling anxious, because you deserve to take up space in this world too.

That last part matters deeply to me. Because HD can already take so much. It can affect confidence, independence, routines, relationships, and the way we feel in our own bodies. I do not want staring strangers to take away our right to be present in public too. We belong in restaurants, in stores, on sidewalks, in classrooms, on planes, in churches, at celebrations, and in every ordinary place that makes up a life.

We belong there exactly as we are.

I also think there is something powerful in remembering that not every stare gets to define us. Some people may never understand. Some may be ignorant. Some may be unkind. But their reaction is not the measure of our worth. Their discomfort is not our identity. We are not spectacles. We are not inconveniences. We are human beings carrying invisible effort behind every visible moment.

So if public spaces have felt harder for you lately, I want to say this gently: you are not imagining it, and you are not alone. What you feel is real. The anxiety is real. The exhaustion is real. The vulnerability is real. But so is your courage.

Every time you leave the house and move through the world with HD, you are doing more than other people realize. You are navigating not only your body and symptoms, but also the reactions, assumptions, and silence of others. That is no small thing.

People may stare and still never see the whole story.

But we know the story.

We know the preparation, the fear, the effort, the recovery, and the resilience.

And maybe that is where healing begins. Not in waiting for everyone else to understand, but in finally giving ourselves credit for all they do not see.