Making progress in the face of setbacks of Huntington’s disease

When you live with Huntington’s disease, your world begins to shift in ways you never imagined. Things that once felt routine, such as tying your shoes, remembering appointments, or going for a walk, can suddenly feel like climbing a mountain. For many of us in the Huntington’s community, these changes aren’t always visible to others, but they’re deeply felt. That’s why I’ve learned to celebrate small victories — not just occasionally, but every day.

Those celebrations are my way of reclaiming joy in the face of uncertainty. It’s a practice I’ve adopted to honor where I am now, not where I used to be. These victories help me focus on progress rather than setbacks because in this journey, progress is everything.

Before my diagnosis, I had a different idea of success. It meant being productive, doing all the tasks on my list, and achieving big goals. I thrived on structure and accomplishment. But after I started experiencing symptoms of Huntington’s, I was forced to redefine my relationship with success. There were days when just getting out of bed was hard, days when my balance felt off, days when brain fog made simple tasks feel overwhelming, days when anxiety crept in uninvited.

I realized I had two choices: I could keep judging myself by my old standards or I could meet myself where I was. I chose the latter. And that choice has changed my life.

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Consciously moving forward

Now, I celebrate things like getting through a full morning routine without needing to lie back down. I take pride in preparing a healthy meal for myself, writing a blog post, or finishing a short walk. These may seem like small achievements to someone else, but they’re major wins for me. They represent effort, determination, and resilience.

Huntington’s is a progressive disease. That word, “progressive,” can feel heavy, but I’ve decided to reframe it. Instead of focusing on the progression of symptoms, I focus on the progression of my mindset, my coping skills, my ability to advocate for myself, and my commitment to finding joy wherever I can.

Progress is showing up to physical therapy, even when I’d rather stay in bed. It’s choosing foods that support my brain health. It’s reaching out to a friend for support instead of isolating. It’s remembering to take deep breaths when my nervous system feels overstimulated. Every one of these moments is a conscious step toward wellness.

Of course, there are days when I stumble, literally and figuratively. Days when I feel the weight of my symptoms more than usual. But I try not to dwell there. I acknowledge those feelings, allow myself to rest, and then look for the next opportunity to keep going. Because even a step backward can be followed by two steps forward.

One of the tools that’s helped me the most is my “victory journal.” It’s a small notebook where I write down at least one thing I’m proud of each day. Some days it’s “I made it to my doctor appointment even though I was nervous.” Other days it’s “I asked for help when I needed it.”

Keeping a victory journal has become a ritual that helps me anchor myself in hope. It reminds me that I’m still growing, still evolving, still capable no matter what this disease throws my way.

Celebrating small victories isn’t just a personal practice; it’s also part of how I connect with the Huntington’s disease community. When I speak at events or share my story online, I always emphasize the importance of noticing and honoring the little things. Because when you live with a chronic illness, the little things are the big things.

I’ve had people message me and say, “Thank you for sharing your wins.” When your energy is limited or your movements are unpredictable, taking a shower can be a full workout. So yes, that’s a win. That’s something to celebrate.

By acknowledging these small triumphs publicly, I hope to give others permission to do the same. There’s power in showing up authentically and saying, “This is what progress looks like for me today.”

Living with Huntington’s disease has taught me how to live with intention. Every action I take — every small victory I celebrate — is part of my decision to keep moving forward. I no longer wait for “someday” or “when things get better.” I celebrate now. I celebrate brushing my hair, staying calm during a stressful moment, or remembering to take my medication without setting an alarm.

I don’t need to prove my worth through hustle or productivity. I already have worth simply by existing, by trying, by being. The fact that I wake up every day and choose to keep going: That’s a victory in itself.

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.