Building a legacy: How Huntington’s disease changed my priorities

Before Huntington’s disease (HD) became part of my daily life, I thought legacy was something people created at the end of their lives. I thought it was about accomplishments, titles, money, degrees, or what people would say about you after you were gone. I thought legacy was distant, something I had time to figure out later.

Huntington’s changed that.

This disease brings time into sharp focus. It forces you to look at your life honestly and ask hard questions: What matters now? Who deserves access to my energy? What am I building with the days I have? What do I want my pain to teach, create, or transform?

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Sept. 19, 2024 Columns by Tanita Allen

My public journey since my diagnosis of Huntington’s disease

At first, my diagnosis felt like an interruption. It interrupted the version of life I thought I was supposed to have. It interrupted my confidence, plans, and sense of safety in my own body. It made me question my future in ways I never imagined. Living with a disease that has no clear timeline causes grief, as does watching symptoms appear, change, or intensify. There is also grief in knowing some people will never fully understand what it takes to keep showing up.

Over time, though, HD also clarified me.

It made me less interested in pursuing a perfect life and more committed to living a meaningful one. It made me less willing to chase approval from people who couldn’t see my value. It made me less tolerant of spaces where I had to shrink, endlessly explain myself, or prove that my diagnosis was real. It taught me that my energy, my peace, and my voice are sacred.

Purpose over perfection

Before HD, I cared deeply about being dependable for everyone else. I wanted to be the person people could count on, the one who fixed and managed things, rescued people, and carried burdens that were never mine to carry.

Now, my priorities are different. I prioritize peace over people-pleasing, wellness over appearances, and purpose over perfection. I prioritize relationships that feel safe, mutual, and life-giving. I prioritize rest without guilt and speaking my truth, even if it makes someone uncomfortable.

HD has also shaped my passions. I became more passionate about advocacy because I know what it feels like to be dismissed. That is why part of my legacy is education. I want medical students, doctors, researchers, families, and communities to remember that Huntington’s disease doesn’t have a singular face. It doesn’t belong to one race, region, family story, or stereotype. I want my life to challenge the bias that delayed my diagnosis and made my journey more painful than it needed to be.

I also want my legacy to be a type of hope that tells the truth, not fake positivity or pretending that this disease is easy. It’s not about wrapping suffering in a pretty bow. I want to offer the kind of hope that can sit beside grief and still breathe. The kind that says, “This is hard, and I am still worthy of joy,” and, “My diagnosis changed my life, but it did not erase my purpose.”

HD has made me more intentional about the work I want to create. Through my writing, speaking, coaching, and advocacy, I want to build something that outlives fear. I want people living with chronic illness to feel seen, not pitied. I want them to know they are not a burden. I want them to know they can still dream, set boundaries, ask for help, have style, laugh, love, and live with beauty.

My goals have become less about proving myself and more about serving from a place of truth. I still want success and abundance, and to build a brand, finish my education, create programs, write books, speak on stages, and open doors. But now those goals are rooted in something deeper. I don’t want success just to say I made it. I want it to become a resource, and to create access, support, wellness tools, and safe spaces for people who are often overlooked.

Legacy, I now believe, is not only what we leave behind. It’s what we practice while we are still here. It’s how we love, speak, advocate, and turn pain into purpose without denying that pain. It is how we make room for others to exist more freely because we refused to be silent.

HD changed my priorities, but it didn’t take away my future. It refined it. It reminded me that my life isn’t measured only by what my body can do, but by the truth I carry, the people I touch, and the courage I leave behind.

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.