Mindfulness and meditation help me cope with Huntington’s disease
My practice has taught me I do not have to fight myself every moment of the day
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Living with Huntington’s disease has taught me many things, but one of the most important lessons has been learning how to stay present.
When you live with a progressive illness, it’s easy for your mind to travel into a future that hasn’t happened yet. I call it “future tripping.” I can find myself wondering what my symptoms will look like years from now, whether I will remain independent, or what abilities I may eventually lose. If I allow myself to stay in those thoughts too long, fear can quickly take over.
Mindfulness has become one of the ways I bring myself back.
It doesn’t make Huntington’s disease disappear. Meditation doesn’t stop my chorea or erase difficult emotions. What these practices give me is space. They help me pause between what I am experiencing and how I respond to it.
Sometimes mindfulness is as simple as paying attention to my breathing. When I feel anxious or overwhelmed, I use the 4-7-8 breathing technique. I breathe in for four counts, hold for seven, and slowly exhale for eight. Focusing on my breath gives my mind somewhere to go besides fear. It reminds me that I am here, in this moment, and that I don’t have to solve my entire future today.
Meditation has also become an important part of my self-care. Some days I sit quietly and focus on my breathing. Other days, I use guided meditation, calming music, or a sound bath. I have learned that meditation doesn’t have to look “perfect.”
That realization has been especially important for me because no two days are the same.
Lessons on living with Huntington’s disease
Living with Huntington’s disease means I may not always be able to sit completely still. My thoughts may wander. My body might have involuntary movements. There was a time when I thought meditation meant sitting perfectly still with an empty mind. Now I understand that it’s not about perfection. It’s about noticing what is happening without immediately judging it.
If my body moves, it moves. If my mind wanders, I gently bring it back. That practice has taught me something much bigger about living with Huntington’s disease: I do not have to fight myself every moment of the day.
Mindful movement has helped me in the same way. Yoga, stretching, and walking allow me to connect with my body with appreciation instead of frustration. Huntington’s can make it easy to focus on what my body is doing wrong. Mindful movement reminds me of what my body is still capable of doing.
Sometimes I take a walk outside and intentionally notice the air against my skin, the trees around me, or the sounds of nature. Other days, movement may look like gentle stretching or simply slowing down enough to listen to what my body needs. The goal is not performance. The goal is connection.
Journaling is another mindfulness practice that helps me process the emotional side of the disease. Writing things down allows me to name what I am feeling instead of carrying everything around in my head. Sometimes I write about fear or frustration. Other times, I focus on gratitude.
Gratitude doesn’t mean pretending that everything is wonderful. I can be grateful and still acknowledge that living with Huntington’s disease is hard. Both things can be true. I can have a difficult day and still find something beautiful in it.
Self-compassion has also become part of my practice. Instead of asking myself, “Why can’t I do what I used to do?” I try to ask, “What does my body need from me today?”
Sometimes the answer is rest. Sometimes it’s movement. Sometimes it’s meditation, therapy, prayer, laughter, or reaching out to someone I trust. And sometimes I simply need permission to have a hard day without trying to fix it.
For anyone who wants to explore mindfulness, I believe starting small is enough. You don’t need to meditate for 30 minutes. Start with a few slow breaths. Sit outside for five minutes. Write down three things you are grateful for. Try a short guided meditation before bed. Pay attention to one peaceful moment in your day.
There is no perfect way to practice mindfulness.
Huntington’s disease reminds me that there are many things I cannot control. Mindfulness reminds me that this moment still belongs to me.
I don’t know exactly what my future will look like, and I’m learning that I don’t need to live there today. Today, I can breathe. I can move. I can notice joy. I can offer myself compassion. And sometimes, returning to today is 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.
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