Embracing mindfulness and meditation in life with Huntington’s

For those of us living with Huntington’s disease, the idea of calm can sometimes feel like a distant dream. Between the unpredictable nature of our symptoms, the emotional toll of navigating a complex diagnosis, and the misunderstandings we often face from the outside world, finding even a moment of peace can seem impossible.

Yet in my journey with Huntington’s, I’ve found that calm is not only possible, it’s essential. And for me, it begins with mindfulness.

Mindfulness is often described as the practice of being fully present in the moment, aware of where you are and what you’re doing, without judgment. That might sound simple, but when you live with a condition that constantly challenges your physical, mental, and emotional stability, staying grounded in the now becomes a powerful act of resistance. It’s a way to reclaim control in a life that can often feel like it’s spiraling.

In the early days after my diagnosis, I was overwhelmed by fear. My mind kept racing forward to worst-case scenarios: Will I lose my independence? How will people see me? What will happen when my symptoms progress? I tried to push those thoughts away, but they only got louder. I felt like I was in a constant state of fight-or-flight — my body tense, my emotions raw, and my sleep disrupted. It wasn’t until I was introduced to mindfulness and meditation that I discovered there was a different way to be.

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Meditation wasn’t a quick fix. At first, sitting still with my thoughts felt uncomfortable. The idea of watching my breath or observing my emotions sounded simple in theory, but in practice, it brought up feelings I wasn’t sure I was ready to face. There were days when I’d close my eyes and all I could feel was frustration, or fear, or grief. But I kept returning to the practice, and over time, something shifted.

What I began to notice was that mindfulness gave me space. Not physical space, but emotional space — a gentle pause between what I was feeling and how I responded to it. Instead of reacting to my anxiety by shutting down or lashing out, I started noticing it as a wave that would rise and fall. Instead of judging my involuntary movements or emotional feelings, I began to meet them with curiosity and compassion.

That shift didn’t change my symptoms, but it changed my relationship to them. I stopped seeing them as enemies I needed to fight and started seeing them as signals I could respond to with care.

That care also began to extend to my body. Living with Huntington’s can make us feel disconnected from our physical selves. When our movements betray us or our coordination falters, it’s easy to feel at odds with our own bodies.

But mindfulness brought me back into a relationship with myself. Through simple moments of awareness, whether when meditating, walking, or just sitting quietly, I began to notice where I held tension, where I felt pain, and where I needed softness. That awareness became an invitation to treat myself with the tenderness I so readily give others.

The emotional impact of this practice has been just as profound. Huntington’s can bring with it a whirlwind of emotional changes — irritability, depression, mood swings — that are often misunderstood or dismissed. Meditation helped me begin to track those changes without getting lost in them. Instead of being consumed by a sudden wave of anger or sadness, I could observe it, name it, and breathe through it.

That doesn’t mean I always handle every emotional challenge with perfect grace. But it means I have tools now. I have a way to stay anchored, even when the waters get rough.

There are still days when I feel overwhelmed, when my symptoms flare, or when sadness knocks at my door. But now I have something to turn to that grounds me — not in denial, but in awareness. That awareness makes room for self-compassion. It reminds me that I’m doing the best I can in a body that’s doing its best to keep going. It gives me permission to rest, to breathe, to begin again — moment by moment.

Mindfulness and meditation may not be traditional parts of a Huntington’s treatment plan, but they’ve become essential parts of mine. They’re tools I use daily to create a sense of stability in a life that doesn’t always feel stable. They remind me that even when I cannot control what’s happening in my body, I can choose how I meet each moment — with grace, with curiosity, and with love. I hope more people in the Huntington’s community give themselves the gift of mindfulness.

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.