The power of telling the truth about your body

There is a quiet rebellion in telling the truth about your body, especially when the world would prefer you stay silent, polished, and palatable.

When I was diagnosed with Huntington’s disease, I didn’t know how to talk about what was happening inside me. I had learned, like many of us do, to smile through discomfort, to make others comfortable, even while I was unraveling. I was taught to downplay symptoms, to power through fatigue, to pretend I was fine even when I wasn’t.

But that didn’t work for long. Not with this disease.

Recommended Reading

March 3, 2025 Columns by Carlos Briceño

I’ll always trust my wife’s intuition, regardless of how HD affects her

My body started to speak for me. My fingers twitched. My balance shifted. My speech slurred. And for the first time in my life, the truth became impossible to hide.

Huntington’s strips away your ability to mask. It exposes you not just physically, but emotionally. And that exposure can feel like both a loss and a liberation.

For a while, I tried to manage how others saw me. I practiced “passing” — dressing a certain way, hiding my tremors, talking quickly before my voice could falter. But no matter how hard I tried, someone would eventually notice. A tilted glance. A whispered question. A stranger asking if I was OK. Or worse, assuming I wasn’t sober.

And so, I started to tell the truth not just to others, but to myself.

Reclaiming a part of myself

The truth is I live with a degenerative neurological disease. I live with anxiety that spikes when my body is scrutinized. I live with the fear of falling. I live with chorea that moves through me when I’m tired or overwhelmed. I live with the memory of doctors who didn’t believe me and the trauma of having to prove I was sick enough.

But I also live with strength. With presence. With a deep commitment to joy and authenticity. And every time I speak that truth, every time I say out loud what so many of us are made to hide, I reclaim a part of myself.

There is power in naming what’s happening in your body. It interrupts shame. It invites compassion. It makes space for connection. And it tells the world, “I will not be erased.”

Too often, we’re told to package our experiences in ways that make others feel better. To soften the edges. To say “I’m fine” when we’re clearly not. But illness doesn’t exist to comfort the able-bodied. It isn’t tidy or polite. It’s messy, and it’s real.

And when I speak that reality, when I say, “This is what it feels like to be me today,” something shifts. Not just in the room, but in me.

I remember the first time I spoke publicly about my diagnosis. My voice shook, and so did my knees. But when I finished, a woman came up to me with tears in her eyes and said, “Thank you. I didn’t think anyone else felt that way.” That’s when I realized that telling the truth about your body doesn’t just liberate you — it liberates others, too.

We live in a society that rewards the performance of wellness. That praises people for “looking good” even when they’re barely holding it together. I’m not interested in that kind of praise anymore. I want realness. I want people to know that I can be grateful and grieving at the same time. That I can laugh and still long for the life I once knew.

Telling the truth means saying: “This hurts. This scares me. This slows me down.” But it also means saying: “I’m still here. I’m still worthy. I still matter.”

It means walking into a room and letting my body be what it is, without apology. It means declining an invitation when I’m too tired to move. It means asking for support without shame. It means speaking up when someone says something ignorant, and educating instead of shrinking.

And yes, it means facing the risk of being misunderstood. But I’d rather be misunderstood for telling the truth than praised for pretending.

So I keep speaking. I keep writing. I keep showing up in my full, unfiltered reality not just for myself, but for every person who’s ever been made to feel like their truth was too much.

If you’re reading this and struggling to put words to your own experience, let me say this: Your truth is valid. Your body is not something to hide. Your voice deserves to be heard. Start where you are. Write it down. Say it out loud. Let someone in.

Because there’s power in your story.

There’s healing in your honesty.

And there’s strength in the simple act of saying, “This is what it’s like to be 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.