Personalizing my self-care routine in life with Huntington’s disease

Living with Huntington’s disease has taught me that self-care is not a luxury, but a commitment, an act of self-preservation, and a form of self-respect.

Before my diagnosis, I had a very different idea of what self-care meant. I thought it was about escaping life’s stressors with spa days or occasional treats. But after my body began to change and the invisible toll of the disease became a daily companion, I realized that a real self-care routine had to become part of the fabric of my life. It had to be integrated into the way I moved through each day, not as an afterthought, but as a foundation.

At first, it was difficult to know where to begin. The unpredictability of Huntington’s made it nearly impossible to rely on the type of routine I once kept. Some mornings I’d wake up with enough energy to move around with ease, but on other days, my body would be fatigued or my mood would be off. I knew I had to stop chasing a rigid definition of normal and instead build something that honored the truth of my own experience. That was the beginning of creating a personalized self-care routine that could meet me exactly where I was.

It started with listening — truly listening to my body, my emotions, my limitations, and my needs. I began to notice the subtle signals that my body was sending me, not just when things were wrong, but when something felt right.

I realized I felt more stable and alert in the morning, so I began shifting my most important activities to earlier hours. I noticed that even a short period of calm breathing helped reduce my anxiety before appointments or outings, so I started pausing intentionally before transitions. These small observations became guideposts for how I structured my days.

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I no longer forced myself to power through when I was struggling. Instead, I began to work with my body, not against it. That shift in mindset changed everything. When my coordination felt off or my balance was affected, I leaned into gentler movements like slow stretching or dancing around my living room to soft music. When fatigue hit hard, I gave myself permission to rest fully without guilt or shame. Rest, I learned, is a sacred form of healing.

One of the most empowering parts of creating my self-care practice has been adapting my environment to support me. I realized that a chaotic space often increased my internal tension, so I surrounded myself with calming colors, textures, and sounds that soothed my nervous system.

Emotionally, the weight of Huntington’s can be overwhelming at times, and for a while, I tried to carry it all silently. But my self-care now includes speaking my truth and allowing myself space to grieve when needed. I also found joy sometimes in unexpected places: a conversation with a friend who simply listens; a favorite song that stirs something beautiful in me; a moment outdoors where the sunlight hits just right. These are all part of my care, too.

Through this evolving process, I’ve learned to be gentle with myself. To forgive myself when I don’t meet a goal. To celebrate small wins, like getting dressed or making a meal, especially on the harder days. And perhaps most importantly, I’ve learned to hold hope — not as a naive wish, but as a quiet, persistent belief that I can still create a life that feels meaningful and whole, even with this diagnosis.

Creating a personalized self-care routine has been about learning who I am now, not just who I used to be. I’ve let go of the pressure to replicate old patterns and instead embraced the opportunity to write new ones. It’s not about doing everything perfectly; it’s about doing what feels right in this body, on this day, in this moment.

To anyone reading this who’s navigating their own journey with Huntington’s, I want you to know that your routine doesn’t have to look like mine or anyone else’s. What matters is that it honors you. Start with compassion. Follow your intuition. Allow your needs to evolve, and let your routine evolve with them. You are not broken. You are adapting — and that is a form of resilience that deserves to be celebrated.

Each morning I wake up and begin again. Sometimes I move slowly, sometimes I move with momentum, but I always return to the practices that remind me I’m still here, still capable, and still worthy of care. That, to me, is the heart of self-care. And it’s a rhythm I will keep dancing to — one breath, one step, one loving choice at a time.

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.