What the holidays mean when living with Huntington’s disease
Huntington's has sharpened my sense of appreciation
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The holidays have a way of magnifying everything: joy, grief, gratitude, exhaustion, hope, and the quiet ache of what we wish life still looked like.
For most people, this time of year is about traditions, gatherings, and the excitement of closing one year and welcoming another. But for those of us living with Huntington’s disease (HD), the holidays often take on a different texture.
Living with HD has altered how I navigate this season. I’ve learned that the holidays aren’t just about celebration; they’re about meaning.
Before my diagnosis, showing up around the holidays felt like an automatic response. I could attend endless events, stay up late wrapping gifts, help cook big meals, and jump from one gathering to the next without a second thought. Now, my energy comes with limits.
Some years, I can participate in the whole holiday rhythm: decorating the tree, sharing meals, and laughing loudly around the table. Other years, the best I can do is show up in smaller ways, by sending cards, FaceTiming loved ones, or sitting with a warm blanket and watching the lights twinkle from the safety of my couch.
What I’ve learned is this: Showing up doesn’t have to look the same every year.
The holidays permit us to evolve. HD may change how I participate, but it hasn’t changed my capacity to love, connect, or find meaning in the season. The form is different, but the heart is the same.
Changing traditions
Some families are navigating the uncertainty of genetic testing. Others are managing caregiving responsibilities that don’t take a holiday break. Some are missing a parent who used to carve the turkey or a sibling who used to light up the room. And some are quietly carrying the fear of what next year might look like.
This season asks us to hold both realities at once: the joy of being together and the sorrow of what HD has changed.
And yet, somehow, our community continues to find beauty in the moments in between. We learn to savor small things: the warmth of a hug, a familiar recipe, a holiday song that sparks a memory, or the comfort of knowing that even in the hardest parts, we’re not alone.
One of the biggest lessons HD has taught me is that traditions are supposed to serve us, not the other way around. It’s OK to simplify, adapt, and rewrite the script.
Perhaps that means celebrating earlier in the day when energy levels are higher. Maybe it means shorter gatherings or potluck meals instead of cooking everything ourselves. It might mean swapping a big party for a cozy night at home. Or celebrating twice — once in person and once virtually — so no one feels left out.
Traditions don’t lose meaning when they change. They become more meaningful when they reflect our reality with honesty and tenderness.
In many ways, Huntington’s has made my holidays more intentional. I pay attention to what actually matters, rather than getting caught up in the pressure to make everything perfect. I focus on comfort over performance, presence over productivity, and connection over chaos.
Living with HD has altered my perspective on gratitude. I used to think that gratitude had to be big — like big breakthroughs, big achievements, or big holiday memories. Now I find the deepest gratitude in the smallest, most ordinary things:
- A warm meal shared with someone I love
- The steadiness of a good day
- A moment of laughter that cuts through anxiety
- The grace of resting without apology
- The relief of being around people who don’t stare, judge, or question my symptoms
- The softness of being understood without needing to explain myself
HD has slowed my life down, but it has also sharpened my sense of appreciation. I’m grateful for the days I can move with ease, the moments when my mind feels clear, and the chance to start a new year with hope, even if that hope looks quieter than before.
This season, I’m giving myself permission to experience the holidays in whatever way honors my body and spirit. Some days will feel festive. Others may feel difficult. But both are OK.
If you’re reading this from the HD community, whether you’re symptomatic, gene-positive, gene-unknown, a caregiver, or a loved one, I want you to know this:
You are allowed to celebrate differently.
You are allowed to rest.
You are allowed to grieve.
You are allowed to feel joy without guilt.
And most of all, you are allowed to make the holidays yours.
May this season remind us that meaning doesn’t come from the picture-perfect holiday; we create meaning through love, presence, and the courage to keep going.
Happy holidays, from my heart to yours.
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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