We’re intentionally choosing happiness while dealing with HD

When my wife, Jill, was diagnosed with Huntington’s disease (HD), our world shifted. HD is a cruel, inherited, neurodegenerative illness that affects movement, cognition, and emotions. It’s a diagnosis that forces you to confront life’s fragility head-on. For us, it also became a wake-up call — a chance to reevaluate how we live and what truly matters.

Before HD entered our lives, Jill and I were people-pleasers. Jill often prioritized making others happy, even at her own expense. I, too, struggled to say no, taking on commitments that left me stretched thin. We both wanted to be liked, but at what cost? Jill’s diagnosis forced us to confront this question and make some hard changes.

Stress is particularly harmful for Jill because it exacerbates her symptoms, causing anxiety, involuntary movements, and other challenges. For Jill, reducing stress isn’t just about leading a balanced life; it’s about survival.

When we realized that constantly trying to meet other people’s expectations wasn’t sustainable, we adopted a new system. We now ask, “Will this make me happy?” Or, “Will this be good for me?” These two questions have become our bumper rails for some of our decision-making.

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At first, this shift felt selfish, but we’ve come to see it as necessary. Saying no to things that drain us means saying yes to what truly matters: time together, moments of joy, and preserving Jill’s health as much as possible. It’s not always easy, and old habits die hard. But each time we prioritize ourselves over external pressures, it feels like a small victory.

Living with HD has taught us the importance of intentionality. We no longer take time for granted. Instead of filling our days with obligations that leave us drained, we focus on what brings us peace and fulfillment. Sometimes that means spending a quiet evening at home instead of attending a social event. Other times it means taking a walk together or simply sitting and reading a book, appreciating each other’s presence.

This journey hasn’t been without its struggles. There are moments of grief for the life we once had and speculation about what lies ahead. But there are also moments of profound gratitude for the love we share and the lessons HD has taught us about living fully in the present.

If there’s one thing I’ve learned from this experience, it’s that happiness isn’t something you stumble upon; it’s something you choose. For Jill and me, choosing happiness means letting go of the need to please others and focusing instead on what truly matters: each other, our family, and the simple joys of life.

HD may have changed the course of our lives, but it hasn’t taken away our ability to find meaning and joy in each day. By asking ourselves what will make us happy and what will be good for us, we’re learning to live intentionally — and maybe even thrive — in the face of this disease.

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.