The ‘invisible’ symptoms of Huntington’s that people don’t see

When most people picture Huntington’s disease (HD), they imagine the outward signs — the chorea, the unsteady walk, the tremors. And while those symptoms are real, they’re only a small part of the HD experience. The truth is, many aspects of this disease can’t be seen by others, yet it’s those invisible symptoms that shape my day far more than any movement my body makes.

These symptoms live inside the nervous system, not on the surface. They affect how I think, react, communicate, and manage everyday life. They’re the symptoms people overlook, misunderstand, and misinterpret — the ones I wish the world understood better.

Today, I want to name them: irritability, cognitive fatigue, processing delays, and internal overwhelm. They are real. They deserve compassion. Sharing them helps me feel less alone, and hopefully it gives someone else a language for what they’re going through.

Recommended Reading

August 28, 2025 Columns by Tanita Allen

Navigating the invisible days when I don’t look ‘sick enough’

The symptoms that go unnoticed

I used to describe myself as patient. Grounded. Someone who could stay calm even when things were chaotic. But HD changed the way my brain processed stress, sound, interruptions, and unexpected changes. Irritability shows up fast, sometimes so fast that I don’t even recognize it until I’m already in the middle of that internal spike.

A simple noise repeating in the background, a sudden change of plans, or being asked multiple questions at once can send my nervous system into high alert. Inside, it feels like every sound or movement hits me 10 times harder. Afterward, I’m often left apologizing for reactions I didn’t choose and moments that didn’t reflect my character.

There’s tired, and then there’s HD tired. Cognitive fatigue is a type of exhaustion that settles deep in my brain long before it ever shows in my body. It’s not solved by a nap or a good night’s rest. It’s caused by the constant mental effort it takes to focus, plan, organize, speak, and stay present.

Some days, I can hold conversations, follow a schedule, and complete tasks without much difficulty. Other days, my brain suddenly feels like it’s shutting down, as if someone flipped the switch from “on” to “low power mode” without warning.

This fatigue isn’t laziness. It isn’t a lack of interest. It’s the neurological cost of living with HD.

Cognitive fatigue is invisible, but it affects everything: social plans, household tasks, school, work, and even hobbies that used to bring me joy. One of the ways I’ve learned to show myself compassion is by honoring my limits instead of fighting them.

One of the most misunderstood invisible symptoms of HD is slow processing. People assume that if I’m quiet or taking a moment, I’m confused or not paying attention. But that’s not the case.

There have been times in conversations when everyone is talking quickly and I’m still forming my first thought. It’s discouraging. It can make me feel “less than,” even when I know better.

Processing delays don’t mean a lack of intelligence. They don’t mean I’m lost. They simply mean my brain works at a different pace now, a pace that deserves patience and respect.

One of the greatest gifts someone can give me is to slow down their speech, pause before responding, or wait those few extra seconds. Those moments of patience make communication possible, and they make me feel seen.

If there is one invisible symptom that shapes my life the most, it’s internal overwhelm. I can be sitting quietly, appearing calm, while inside, tidal waves of sensations, emotions, sounds, and thoughts crash into each other all at once.

Crowded grocery stores. Airports. Doctors’ offices. Loud rooms. Fast-paced conversations. Bright lights. Unexpected changes. All of these can push my nervous system into overload long before my face or body shows anything at all.

Sometimes I push through it. Sometimes it brings me to tears. And sometimes it forces me to retreat into rest and quiet so I can reset.

Improving understanding

None of this is visible. And that invisibility can make HD incredibly isolating. People don’t realize how hard we’re working just to stay present.

Invisible symptoms matter because they affect our ability to connect, communicate, plan, and participate in life. They shape how we show up in the world and how the world responds to us.

To everyone living with HD: Your irritability, fatigue, delays, and overwhelm do not make you weak or difficult. They make you human. You deserve compassion — especially from yourself.

To everyone who loves someone with HD: Your patience, pauses, and gentleness matter more than you know. You help our world feel safer.

HD doesn’t always look like what people expect. Some symptoms are loud. Many are silent. All of them deserve to be seen.

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.