I insist on being seen as I am, not as someone else’s story

I can feel it before anyone says a word. It’s in the pause that comes after I mention Huntington’s disease. It’s in the quick scan of my body, my hands, my face, the way I shift my weight like they’re looking for proof. It’s in the softened voice, the head tilt, the “Oh wow. You’re so strong.”

I know what they mean. I do. They think they’re offering kindness. But the compliment often lands like a label, and the label sounds like this: tragedy.

People don’t always realize how fast they begin to write a story about you when they hear the words “Huntington’s disease.” They start filling in blanks they don’t actually know. They imagine a downhill slope, an ending, a life defined by loss. And then they place you somewhere in that narrative: the brave fighter, the cautionary tale, the inspirational survivor, the person they quietly fear becoming.

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Narratives of pity, inspiration, fear

And that’s the first thing I want to say plainly: I’m not a tragedy.

Pity has a particular sound. It’s the whispery tone people use when they think they’re being gentle. It’s the way conversations suddenly become heavy, like laughter isn’t allowed anymore. It’s the “I’m so sorry” that repeats itself until I feel like I’m supposed to comfort them.

Sometimes pity shows up as over-helping. Someone grabs my bag without asking. Someone insists I sit down. Someone speaks slower, louder, like my brain has disappeared just because my body moves differently.

Then there’s the other kind of projection: inspiration.

I’ve had people tell me I’m “so inspiring” for doing basic things, going to school, traveling, showing up to an event, advocating for myself. They say it as if my existence is a motivational quote. Sometimes they don’t even know anything about me. They just see Huntington’s and assume anything I say or do is heroic.

I am proud of myself. I have done hard things. I’m not denying that. But I don’t want to be someone’s feel-good moment. Because inspiration, when it’s not rooted in a real relationship, can be another form of distance. It says, You are different from me. It says, I could never.

And I’m here to tell you: You could. You would. Humans are built to adapt. That doesn’t mean it’s easy. It means we’re more capable than we think.

Fear is quieter, but it’s sharp.

Fear makes people avoid the conversation altogether. Fear makes friends disappear. Fear makes dates ask questions that feel like an interrogation: Is it fatal? Is it contagious? What’s going to happen to you? Fear makes people treat Huntington’s like it’s a curse that will splash onto them if they stand too close.

Sometimes fear shows up in the way people try to fix me: Have you tried this supplement? This diet? This miracle routine? It’s like they need to believe there’s a way to control this disease, because the reality that some things are uncertain scares them.

But I live with uncertainty every day. I don’t need someone else to panic on my behalf. When people react with fear, I remind myself that their fear is about their imagination, not my worth.

Reclaiming me

At some point, I came to realize I was exhausted not just from the symptoms but from managing everyone else’s story about my life. So I started reclaiming my own definition of strength.

Strength is also smaller than people imagine. It’s making systems for my brain when my brain feels stuck. It’s resting without guilt. It’s taking my medication on time. Strength is me going out in public on days when my movements are louder than I want them to be, and deciding I still deserve to be seen.

One of the biggest myths about disability and illness is that dignity is something you have to earn through bravery. No. My dignity is not dependent on how well I perform wellness. It doesn’t disappear when my symptoms are visible. It doesn’t shrink because someone feels uncomfortable. It is not up for debate.

If you want to love someone with Huntington’s disease, if you want to support us, here’s a better place to start: See us as complex. See us as changing. See us as capable.

Ask before helping. Stay present without making it dramatic. Learn, but don’t assume you understand. Let us be funny, and frustrated, and ordinary. Let us have a life that doesn’t exist for your lessons.

I’m not a tragedy. I’m living. I’m learning. I’m still becoming. And the strongest thing I’ve done, maybe the strongest thing I’ll ever do, is insist on being seen as I am: not as a story people tell themselves, but as a human being with my own definition of strength.

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.