You Are Not Powerless: Reclaiming Control While Living with Huntington’s Disease

Living with Huntington’s Disease (HD) often feels like a series of quiet, and sometimes loud goodbyes. We say goodbye to the way our bodies used to move, to the stamina we once took for granted, and to the roles we once held in our families, careers, and communities. We say goodbye to the comfort of certainty and predictability. For many of us, HD can feel like life is being taken out of our hands. But I want to pause and gently challenge that belief. Because even amid change, confusion, and loss, there are still ways we can reclaim pieces of ourselves. Power might look different now it may come in the form of rest instead of hustle, or small daily choices instead of grand achievements, but it still belongs to you.

As someone who has walked this journey through diagnosis, through doubters, through periods of deep uncertainty I want you to know that I see you. I’ve felt the weight of stigma, the exhaustion of advocating for myself, and the inner shift when my life changes direction. But I’ve also discovered something beautiful: the more I leaned into what I can do, rather than fixating on what I’ve lost, the more strength and clarity I gained. This column reminds you that your voice matters, your choices matter, and your well-being is worth fighting for every day. You are not alone, and you are not without options.

Here are five empowering reminders and tools to carry with you, no matter where you live or where you are in your HD journey. These are not one-size-fits-all solutions but gentle invitations to honor yourself, your needs, and your capacity.

1. You Have the Right to Set Boundaries

One of the most compassionate things we can do for ourselves especially when living with HD is to set clear, loving boundaries. This isn’t about shutting people out. It’s about protecting your time, energy, and emotional well-being. When your nervous system is already managing a lot, it’s okay to say, “I need a quiet day today,” or “I’m not able to take on that task right now.” Boundaries help us prioritize rest, minimize stress, and stay connected to what truly matters. You are not being difficult. You are honoring your health. And that is a powerful, courageous act.

2. You Deserve Culturally Competent and Respectful Care

Every person living with Huntington’s Disease deserves to be seen, heard, and taken seriously no matter their background. Unfortunately, we know that bias exists in medicine, and many of us have been dismissed or questioned because we didn’t “fit the mold” of what doctors were expecting to see. That’s why I encourage you to trust your body and your intuition. If a provider isn’t listening, seek someone who will. Keep a journal of your symptoms, bring a trusted support person to appointments, and don’t be afraid to say, “I need a second opinion.” Your health is not up for debate. You deserve to be treated with dignity and cultural respect, always.

3. Daily Rituals Build Confidence and Calm

Something is healing about returning to small daily practices that remind us we’re still here. Routines can offer a sense of safety and rhythm in the middle of doctor’s appointments, tough conversations, or

unpredictable symptoms. It could be making a warm drink in the morning, and taking a moment to breathe deeply before the day begins. It’s stretching, journaling, lighting a candle, or playing your favorite song. These rituals aren’t about productivity, they’re about grounding yourself. They are small but mighty ways to build trust in your body and your ability to care for it, even when things feel uncertain.

4. You Can Ask for Help—And Still Be Strong

So many of us grew up believing that being strong meant handling everything ourselves. But let me tell you there is incredible strength in asking for help. Whether it’s emotional support, practical assistance, or someone to sit with you while you rest simply, you are not a burden. You are a human being living with a complex disease, and you deserve support. Letting others in family, friends, community groups, or professional caregivers can lift some of the weight off your shoulders and remind you that love still surrounds you. You don’t have to do this alone. You were never meant to.

5. Your Story Has Power

Your story matters deeply. Whether you’re someone who’s newly diagnosed, living with symptoms, carrying the gene, or caring for someone with HD, your experience is valid and worth sharing. There is power in your voice. Sharing your story publicly or privately can be a way of processing, connecting, and healing. You never know who needs to hear that they are not alone, and your words might be exactly what someone else needs to keep going. Whether you journal, speak, write, or share with one person you trust, know this: your life has value, and your voice carries wisdom.

Final Thoughts

Empowerment doesn’t mean denying the complex parts of this journey. It means showing up with tenderness and courage, even when things are messy. It means learning to rest without guilt, speak up when necessary, and create space for joy in the middle of everything else. Every time you set a boundary, ask for help, find a moment of calm, or share your story, you are reclaiming your power in a world that often tries to take it away.

You are not powerless. You are powerful in a different way now. And that deserves to be honored, celebrated, and seen.

In Gratitude,

Tanita