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

There’s a unique kind of pain that doesn’t come from having Huntington’s disease, but rather having to convince people the disease exists. Living with Huntington’s as a Black woman has meant constantly being disbelieved, questioned, and scrutinized. It has meant being invisible in plain sight.

My journey with Huntington’s has been long, complicated, and full of moments when I’ve had to choose between defending my truth or protecting my peace. And too often, I’ve had to do both at the same time.

When I first started experiencing symptoms in 2010, I didn’t have the language or support to describe what was happening. My fingers and toes would twitch involuntarily. I would stumble when I walked, sometimes falling without understanding why. I knew something was wrong, but doctors didn’t believe me.

After two long years of hospital visits, judgment, and tears, I was finally diagnosed with Huntington’s in 2012 via genetic testing. The diagnosis brought clarity, but it didn’t generate the understanding I’d hoped for. My symptoms were real. My DNA proved it. But the disbelief didn’t stop. Instead, it shifted. People began saying things like, “Are you sure it’s Huntington’s? You don’t act like it.” Or, “You’re so high-functioning, it’s hard to believe you’re sick.”

Recommended Reading

May 19, 2025 News by Andrea Lobo

Huntington’s patients see day-to-day variation in symptoms, function

Since my diagnosis, I’ve lived with all three types of Huntington’s symptoms: cognitive, motor, and psychiatric. I’ve had memory issues, concentration problems, and episodes where my emotions were so intense I could barely hold a conversation. I’ve battled chorea, those jerky, involuntary movements that come without warning, and a fear of falling in public spaces. I’ve fought through anxiety and depression, navigated medication changes, and spent more time in therapy than I can calculate. Some days were a blur of appointments, pills, and tears. But I kept showing up. I kept learning. I kept trying to make a life I could be proud of.

Over time, I found a rhythm that worked for me. I built a daily structure to manage my symptoms, prioritizing rest, nutrition, and mental health. I discovered practices like meditation and movement that helped regulate my nervous system. I sought support from a care team that respected me. And slowly, I began to reclaim my independence.

I now manage my schedule. I advocate publicly. I write about my experiences, speak to medical students, and show up fully in my community. I function at a high level — but I’m still symptomatic. That truth seems hard for some people to accept.

Invisible battles

When people say, “You don’t look sick,” I understand what they’re trying to say, but it still stings, because what they don’t see are the invisible battles. They don’t witness the nights I can’t sleep because my body won’t stop moving. They don’t see the medications, the recovery time, or the mental gymnastics it takes to stay grounded on tough days.

Sometimes I’ve felt an urge to prove my illness. To justify it. To explain every detail so that people will stop questioning me. But that desire comes from trauma, from years of being disbelieved. And I’ve learned that I don’t owe anyone proof. My life is the evidence. My presence is the truth. The fact that I’ve managed to build a meaningful, independent life while living with a terminal, degenerative disease shouldn’t make me an object of suspicion — it should be celebrated.

So I’ve started to reframe those comments. When someone says I don’t look sick, I remind myself that they’re seeing strength, not absence of illness. When they say people with Huntington’s don’t act like me, I recognize that they’re limited by stereotypes. I know who I am. I know what I’ve been through. And I know how hard I’ve worked to get here.

I celebrate my independence not as denial of my disease, but rather as a powerful outcome of living intentionally with it. I still struggle, but I’m also thriving in ways I never thought possible. If my thriving makes people question the legitimacy of my illness, then maybe it’s time we expand our understanding of what Huntington’s looks like. It looks like me: alive, complex, and deeply resilient.

So when you see me, don’t assume I’m fine just because I’m smiling. Don’t dismiss my reality because it doesn’t fit your expectations. Understand that some of the hardest battles are the ones we fight in silence. And on the invisible days — when I don’t look “sick enough” — I’m still carrying it all.

And I’m still winning.

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.