The reality of invisible symptoms and the myth of ‘you don’t look sick’

One of the most exhausting parts of living with Huntington’s disease isn’t always the symptoms. Sometimes it’s having to constantly explain them (or at least try).

There’s a phrase many of us with chronic illness have heard far too often: “But you don’t look sick.” People usually say it like it’s a compliment. They think they are being kind and reassuring you. But what I hear is something very different: “You don’t match my idea of illness, so I’m struggling to believe your reality.”

That gap between what people expect illness to look like and what it actually feels like can be incredibly painful, especially with Huntington’s disease, because symptoms can be visible one moment and less obvious the next. Some days, my body tells on me right away. Other days, I may look “fine” to someone passing by, but I’m actually fighting fatigue, anxiety, brain fog, and subtle movement changes that take every ounce of effort to manage.

That is the reality of invisible symptoms — and it can feel deeply isolating.

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Questioning myself

Fatigue is the hardest thing for me to explain. It’s not ordinary tiredness or “I need a nap.” I’m talking about the kind of fatigue that can make getting dressed feel like a monumental task, the kind that drains you before your day has even started. It’s whole-body exhaustion that can show up even after a full night of sleep. It affects my focus, mood, patience, and my ability to move through the day however I want.

Because fatigue is invisible, people may assume I am lazy, unmotivated, or flaky.

Cognitive changes with Huntington’s can be equally hard to explain. Sometimes my thoughts feel clear and organized. Other times, I lose my train of thought mid-sentence, struggle to find a word I’m certain I know, or feel mentally overwhelmed by tasks that once felt simple. That inconsistency can be frustrating for me and confusing for others.

People may think, “You were fine yesterday.” Yes, I may have been. That’s one of the hardest parts of Huntington’s disease: the variability.

Symptoms can shift from day to day, even hour to hour. Chorea may be more noticeable when I’m stressed, anxious, overstimulated, or tired. Anxiety itself can increase symptoms, which then creates more self-consciousness, which creates more anxiety. It can become a loop.

If someone only sees me during a “good” moment, they may not understand what happens when my body is having a hard day. If they see me during a difficult moment, they may assume that is how I am every minute. Both assumptions miss the truth.

What hurts most about “you don’t look sick” isn’t just the misunderstanding; it’s the way it makes me feel. It’s the doubt that can follow, from strangers and professionals, and people who think they know what Huntington’s is supposed to look like. Doubt makes me question myself, even when I know my own body and experiences. When symptoms are already hard to carry, being doubted adds a layer of loneliness that is hard to describe.

I’ve learned that part of protecting my peace is no longer overexplaining myself to everyone. Some people are genuinely willing to learn, and I’ll meet them there. Others are committed to their assumptions, and no amount of explaining will change them. I’ve had to learn the difference between the two.

I’ve also learned to honor my reality even when it is invisible to other people:

• If I need rest, I rest.
• If my brain is overloaded, I slow down.
• If anxiety is high, I use the tools that help me regulate.
• If my movements increase, I offer myself compassion instead of shame.
• That isn’t weakness — it’s wisdom.

I think we need to broaden the public understanding of what illness looks like, especially for diseases like Huntington’s. Illness isn’t always dramatic, obvious, or constant. Sometimes it’s quiet. Sometimes it fluctuates. Sometimes it’s hidden behind makeup, a smile, good posture, or years of learning how to cope in public.

Just because you can’t see someone’s symptoms doesn’t mean they’re not carrying something heavy.

So when someone says, “You don’t look sick,” I think a better response might be: “Thank you for sharing that with me. How are you doing today?”

Because today matters. This moment matters. Listening matters.

And for those of us living with invisible symptoms, being believed can feel like medicine, too.

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.