Planning for the future is complicated with Huntington’s disease

Planning for the future while living with Huntington’s disease (HD) requires me to hold two truths at the same time. I understand that HD is progressive, and that my needs may change. I also believe that my future can still contain purpose, joy, growth, relationships, and meaningful work.

Hope and acceptance are not opposites. Acceptance does not mean that I have stopped believing in possibilities. Hope does not mean that I am denying the reality of my diagnosis. For me, balancing the two means preparing responsibly while continuing to live fully.

When I was diagnosed with HD in 2012, I was given a frightening picture of my future. I was told that by 2024, I could be in a nursing home, unable to walk or talk, and completely dependent on others. Those predictions affected how I imagined my life. For a time, it was difficult to make plans because I didn’t know how much time or independence I would have.

However, 2024 came and went. I was still walking, talking, writing, traveling, attending school, and advocating for myself and others. I have learned that no one can predict the progression of HD with complete certainty. The disease is real, but a prognosis is not an expiration date. I refuse to allow someone else’s prediction to become the only story I tell about my future.

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Preparing for possibilities

At the same time, I don’t want fear to prevent me from having important conversations. Legal and financial planning are forms of self-advocacy. Creating a will, choosing powers of attorney, completing advance directives, organizing insurance information, and documenting financial wishes can help protect both me and the people I love. These decisions are not always comfortable, but making them while I can clearly express my preferences gives me peace of mind.

Medical planning is equally important. I want my care team and family to understand my values, not only my diagnosis. I think about who I trust to make healthcare decisions if I am ever unable to speak for myself. I consider what treatments, living arrangements, and levels of intervention would align with the quality of life I desire. These conversations should not happen only during a crisis. They should be ongoing because preferences and circumstances may change.

Future planning also includes practical questions. Is my home safe and accessible? What mobility aids might help me maintain independence? Who can assist me with transportation, appointments, medications, or finances if needed? What community resources are available? Preparing for possibilities does not mean that every possibility will happen. It means I am creating options before I urgently need them.

Personal planning may be the most meaningful part of this process. I ask myself what I want my life to represent. What relationships do I want to nurture? What stories do I want to tell? What work feels purposeful? What experiences do I want to have while I am able to enjoy them?

HD has encouraged me to become more intentional about how I use my time. I returned to school, became a writer, shared my story publicly, and continued building Thrive with Tanita, a platform for people affected by chronic illness. I have traveled, spoken before audiences, advocated within the HD community, and challenged harmful narratives about what life with this disease can look like.

These accomplishments do not erase the difficult days. I still experience symptoms, uncertainty, and fear. Sometimes planning for the future feels empowering. Other times, it brings grief. I allow myself to feel both. I do not have to be positive every moment to remain hopeful.

I have also learned not to postpone living while waiting for a cure or treatment breakthrough. I remain hopeful about research and the future of HD care, but my life is happening now. I want to participate in research, follow medical developments, and support progress without placing my entire sense of hope in something I cannot control.

My hope is also rooted in smaller things: a meaningful conversation, a peaceful morning, completing an assignment, helping another person feel less alone, or having the energy to do something I enjoy. Hope can be found in progress, but it can also be found in presence.

Planning ahead gives me peace because it allows me to make choices from a place of clarity instead of fear. Acceptance helps me acknowledge that my needs may change. Hope reminds me that change does not eliminate my value.

I cannot control everything HD may bring, but I can prepare, communicate, advocate, and choose how I live today. My future may look different from what I once imagined, but different does not mean without meaning. I am planning for what may come while still making room for everything that remains possible.

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.