Finding joy and purpose while living with Huntington’s

Some days, living with Huntington’s disease feels like trying to catch a butterfly in a storm. The winds of chorea, fatigue, mood swings, and forgetfulness push against the delicate wings of joy. Yet through it all, I’ve learned to reach for joy anyway. To find purpose in the present moment. To stand still, even when I experience symptoms.

Before Huntington’s, I was always planning. I was a list-maker, a goal-setter, a woman who believed everything had to go a certain way to be “right.” But my disease has rewritten the script. Slowly at first, then all at once, I had to surrender the illusion of control.

At first, it felt like a loss of identity, capability, certainty. But over time, something unexpected happened. In the surrender, I discovered an opening to live more fully, more truthfully. I began to ask myself different questions: What brings me joy today? How can I show up for myself with compassion? What is still possible right now, just as I am?

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Living in the moment

One of the most transformative shifts came through mindfulness. I don’t say that as a buzzword or a trend, but as a practice that saved me from spiraling into despair. At times my anxiety would climb just thinking about how the disease would progress, what I might lose next. Those thoughts would grip me like a vice. But when I began practicing mindfulness, noticing the present without judgment, I found that the weight of tomorrow grew lighter.

I started with something simple: watching the sunrise. I remember one morning when the sky turned from soft lavender to gold, and for a few quiet minutes, I wasn’t worried about anything. I was just a witness to beauty, breathing it in. That moment didn’t take away my symptoms, but it offered me a glimpse of peace. And sometimes, peace is enough to keep going.

I’ve also found purpose in speaking my truth. Being open about my diagnosis, especially as a Black woman in a rare disease space where we’re often underrepresented, hasn’t always been easy. I’ve had people doubt me, question my symptoms, or believe I “don’t look sick enough.” But sharing my story has become an act of defiance against stigma and an affirmation of my own worth.

There’s purpose in that. Every time I speak at a medical school or respond to a message from someone newly diagnosed, I feel connected to something bigger than the disease. I feel like I’m building a legacy of visibility, empathy, and hope.

Joy also shows up in unexpected places. It’s in the comfort of a warm meal I made for myself, even if it took more energy than it used to. It’s in the music that moves my spirit, even when I feel fatigued. These moments aren’t huge, but they matter. They’re proof that life doesn’t have to be perfect to be meaningful.

Living in the moment doesn’t mean denying the hard parts of Huntington’s. There are days when grief knocks me down when I miss the ease of old routines, when I mourn the version of myself I used to be. But I’ve learned that grief and joy can coexist. That I can cry and still believe in better days. That I can accept my reality without giving up on possibility. One of the affirmations I repeat to myself is “This moment is enough.” Not because it’s flawless, but because it’s mine.

Sometimes, the best way I’ve found to stay grounded is to slow down and breathe. When I feel overwhelmed by symptoms, expectations, or fear, I return to my breath. I put one hand on my chest, the other on my belly, and I breathe deeply, counting each inhale and exhale. That practice reminds me that I’m still here. I’m still alive. I still have choices.

Over time, I’ve redefined what purpose means to me. It’s no longer tied to productivity or perfection. It’s about showing up with honesty, kindness, and courage. It’s about creating moments of connection, whether I’m writing a column or simply sharing space with another soul who understands. It’s about loving myself, not in spite of Huntington’s, but alongside it.

I don’t have all the answers, and I still have hard days. But I’ve learned that joy is not something I have to chase. It’s something I can create, even in the smallest ways. Purpose is not a destination. It’s a way of being present, of honoring what matters, even as circumstances change.

Living in the moment isn’t always easy with Huntington’s, but it is possible. And in those moments when I feel the sun on my face or peace settling in my chest, I remember that life is still beautiful. I’m still here. And that is more than enough.

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.