Practicing Mindfulness with HD: Learning to Be Here Now

Living with Huntington’s Disease has taught me many things, but one of the most important lessons has been this: presence is a practice. Before my diagnosis, I didn’t give much thought to the concept of mindfulness. I was busy planning, doing, pushing, and reacting like many of us trying to keep up with the fast pace of life. But when HD entered my life and everything changed my movement, my speech, my memory, and my identity it became clear that I couldn’t afford to live in the past or constantly fear the future. Mindfulness became more than just a wellness buzzword. It became a lifeline.

At first, the idea of mindfulness felt out of reach. How could I focus on the present moment when my body often betrayed me, when my thoughts raced with anxiety, and when my emotions felt like a storm I couldn’t calm? But through trial, patience, and plenty of grace, I began to find my own rhythm. I learned that mindfulness doesn’t have to look perfect or quiet or still. It can be messy. It can happen in the middle of a bad day. It can start with one breath.

One of the first things I realized was that mindfulness is not about erasing discomfort or pretending that HD doesn’t exist. It’s about noticing what is, without judgment. When I began to sit with what I was feeling instead of running from it, I discovered that even though some sensations were painful, they weren’t permanent. Some days my chorea is more visible. Some days my mind feels foggy or my energy is low. But rather than spiraling into shame or frustration, I try to bring a gentle awareness to those moments. I remind myself that I am not my symptoms. I am the one witnessing them, breathing through them.

There are moments when I lose my footing literally and emotionally. I’ve had episodes where my movements have drawn unwanted attention in public. My initial reaction is often to shrink, to disappear. But mindfulness has helped me reclaim those moments. When I practice grounding techniques, I become aware of the support beneath my feet, the air moving in and out of my lungs, and the fact that I am safe. I may not be in control of everything, but I can be in relationship with what is happening in my body. I can soften instead of tighten. I can breathe instead of brace.

Starting a mindfulness routine was not an overnight transformation. I had to unlearn the idea that mindfulness had to be formal or rigid. I began with short, simple moments: breathing deeply while the kettle boiled, noticing the colors of the sky outside my window, pausing before I reacted to a trigger. Over time, these micro-moments stitched together into something steady and soothing. Some days, I spend five or ten minutes with my eyes closed, silently repeating a calming phrase or feeling my breath rise and fall. Other days, mindfulness is more about being present while I stretch, or listening attentively to the rhythm of my steps as I walk. It’s less about how long or how perfectly I do it, and more about how intentionally I return to myself.

What surprised me the most was how mindfulness started to transform other parts of my life. My relationships became more connected because I was listening with more patience. My anxiety began to ease not because my circumstances changed, but because I was learning not to wrestle with every thought. And perhaps most importantly, I stopped fighting myself. There is so much internal pressure to “keep it together” or “stay strong” when you live with a chronic illness. Mindfulness invited me to be soft, to be human, and to be okay with where I am in each moment.

To those in the HD community who are curious about mindfulness but unsure where to begin, I want to say this: you don’t have to be a monk or a meditation expert. You don’t need silence, candles, or special pillows. You just need willingness. The first step might be as simple as noticing your breath right now, or placing a hand over your heart and whispering, “I’m here.” That’s it. That’s enough.

Some days, you’ll forget. You’ll get caught up in worry or frustration. You’ll judge yourself for not being more “zen.” But mindfulness teaches us that each moment is a new beginning. There is no perfect practice, only a return. Every time you choose to pause, to observe without judgment, to breathe with compassion, you are practicing.

Living with HD means navigating uncertainty. It means living with grief, change, and complexity. But mindfulness reminds me that even in the midst of all that, I can find peace in small pockets. I can choose how I relate to my reality. I can meet myself with kindness instead of critique. And that, to me, is a form of empowerment.

Mindfulness hasn’t “cured” anything for me. But it has helped me return to who I am, underneath the symptoms, underneath the noise. It’s given me tools to stay grounded, centered, and more at ease in my own skin. It reminds me, every day, that this moment is worthy of my attention. That I am worthy of my own care.

So if you’re wondering whether it’s possible to find peace while living with Huntington’s Disease, I hope this column offers you some hope. You don’t have to wait for the storm to pass. You can find calm in the eye of it. One breath at a time.