Tips to ease my fear when thinking about future Huntington’s symptoms

Living with Huntington’s disease (HD) has changed the way I think about the future. Before it became part of my life, planning ahead meant the usual things: career goals, travel, relationships, finances, and the kind of life I wanted to build. Now, future planning carries another layer. There are practical conversations to have, important wishes to think through, and questions about how I want to be supported if my needs change over time.

That can feel heavy, which is why I have learned that there is a difference between preparing for the future and living in fear of it.

I call it “future tripping” when my mind gets too far ahead of me. I start wondering what abilities I may lose, whether I will always be independent, how my symptoms may progress, or what kind of care I may need someday. If I stay in that space too long, I stop living in the present and start grieving things that haven’t even happened.

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For me, planning has become one way to interrupt that fear. When I make thoughtful decisions while I am able to clearly express what I want, I feel more empowered. I don’t have to solve everything at once. Instead, I can ask myself one simple question: What would help me feel more prepared?

Sometimes that means thinking about who I trust to help communicate my wishes if I ever need support. Sometimes it means organizing important information so the people closest to me know where to find it. It can also mean writing down what matters most to me, having honest conversations with family, and making sure the practical details of my life aren’t scattered everywhere.

I have found that future planning feels much less overwhelming when I break it into smaller steps. I can choose one afternoon to gather important information in one place. I can write down emergency contacts, the names of people I trust, my healthcare providers, medications, insurance information, and anything else that someone may need to find quickly. I can revisit those notes from time to time and make updates when my life changes.

For me, those small actions create peace of mind.

It’s my journey, not someone else’s

My mother’s journey with HD has made future planning deeply personal. As one of her powers of attorney, I have seen how complicated life can become when someone’s needs change. Being involved in her care has shown me how valuable clear communication can be, especially when decisions become more difficult.

At the same time, I’ve had to work hard not to use her experience as a prediction of my own.

That is one of the most difficult parts of living with HD. You may have already seen what HD can look like in someone you love, and it can be difficult not to imagine the same outcome for yourself. I have to remind myself often that her journey is hers, and mine is mine.

That reminder helps me hold acceptance without giving up hope. Acceptance does not mean I am comfortable with every possibility HD may bring. It doesn’t mean I stop hoping for better treatments, better care, or scientific breakthroughs. For me, acceptance means acknowledging what is real today without allowing fear about tomorrow to take over my life.

That means when I think about planning for the future, I also make room for joy. I think about where I want to travel, the work I still want to do, the things I want to write, the people I want to spend time with, and the legacy I want to leave behind.

One thing that helps me is separating what I can do today from what I cannot control. I can organize information. I can communicate my wishes. I can ask questions. I can identify people I trust. I can continue doing the things that give my life meaning.

What I can’t do is predict every stage of my disease, and I no longer want to spend all of my energy trying.

For anyone struggling with future planning, I think it can help to start small. Choose one thing that would make you feel more prepared. Write it down. Have one conversation. Create one folder. Make one list. Then stop.

You don’t have to plan your entire life in one day.

I am learning to hold hope in one hand and acceptance in the other. Hope reminds me that there may be better days and possibilities I can’t see yet. Acceptance reminds me to honor the life I have right now.

I can’t control every part of my future with HD, but I can prepare with intention, live with purpose, and still leave room for hope.

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.