The invisible battle of staying present with Huntington’s disease
There’s a specific kind of exhaustion that hits after being in public
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The thing about being present in public is that people think it’s just a mindset. Like you decide to show up, take a deep breath, smile, and you’re there — grounded, confident, fine. But when you live with Huntington’s disease, being present in public can feel like a full-time job you don’t get paid for.
It’s not only about the event itself. It also entails everything that’s happening underneath the surface while you’re trying to look like you’re simply existing. It’s the hidden work of managing a body that may not move the way you want it to, a brain that may take longer to process things, and a nervous system that’s doing math every second: Are people staring? Do I look “off”? Am I safe? Am I making them uncomfortable? Am I making myself uncomfortable?
The hardest part is that it’s invisible labor. People don’t see it, so they don’t realize how much energy it takes.
Redefining success
Most strangers don’t know what Huntington’s disease is. They don’t know what chorea looks like. They don’t know what cognitive load can do to someone’s timing. They just know that something looks different, and humans are wired to notice differences. Some people stare. Others quickly look away. Some try to help in ways that make things worse. Some ask if I’m OK, as if my body is a public question.
I’m not referring to pretending I don’t have Huntington’s. I can’t hide it on certain days. Rather, I try to manage the social experience so that other people are comfortable. Sometimes I feel like I’m not just attending an event — I’m performing “normal.”
That performance takes energy, and the cost usually arrives later.
There’s a specific kind of exhaustion that hits after being in public for a few hours. It’s not just “I’m tired.” It’s the feeling of having held your nervous system in your hands the whole time, like carrying a bowl filled to the brim without spilling. The moment you get back into your car or your home, your body finally lets go. Your shoulders drop. Your face changes. Your brain stops working so hard to translate itself to the world.
And that’s when the emotions show up, too.
Sometimes I feel proud. Sometimes I feel relieved. Sometimes I feel angry that something so simple is so hard. Sometimes I feel sad because I miss the version of me who could run errands without having a strategy. Sometimes I feel embarrassed even though I know I didn’t do anything wrong. Sometimes I feel lonely, even when people surround me, because no one else is doing the hidden work I’m doing.
Presence in public isn’t just about focusing on the moment. It’s about surviving the moment with dignity.
I’ve learned that being present doesn’t always mean being chatty, upbeat, or brave. Sometimes being present means staying connected to myself while I’m outside of my comfort zone. It means noticing when I’m starting to dissociate due to stress and gently bringing myself back. It means permitting myself to sit down. It means stepping away to breathe. It means leaving early without apologizing like I committed a crime.
It also means rewriting what success looks like.
Success might be that I went at all, or that I asked for what I needed. It might be that I didn’t push myself to the point of collapse, or that I didn’t let shame run the show. I wish more people understood that.
When someone with Huntington’s disease shows up to a wedding, conference, family gathering, meeting, grocery store, school event, or doctor’s office, they may already be carrying a load you can’t see. They may be calculating every step, interaction, sensory input, facial expression, or pause. They may be managing both their symptoms and your interpretation of those symptoms at the same time.
So, when you see someone like me in public, the best gift you can give isn’t curiosity disguised as concern. It’s calmness, normalcy, space, and respect. It’s treating us like we belong there, because we do.
For those of you living with this disease, I want to say this plainly: If being present in public feels like work, you’re not imagining it. You’re not weak. You’re not failing at resilience. You’re doing something real. Something heavy. Something courageous in the quietest way.
Sometimes the bravest thing I do is walk into a room and stay connected to myself while the world looks back at me.
Note: Huntington’s 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 Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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