Learning how to grieve my life before Huntington’s disease

There is a type of grief that isn’t always discussed in the Huntington’s disease community, even though many of us live with it every day. It’s the grief of losing versions of yourself while still being very much alive.

I have grieved the loss of some of my abilities. I have grieved the ease with which I used to do things. I have grieved the way I used to move through a room without having to think about balance, fatigue, or whether my body would cooperate that day. I have grieved the version of me who could make plans without calculating energy, symptoms, medication timing, and recovery time. I have grieved the woman I was before Huntington’s disease became part of every decision.

And yet, here is the part that took me years to understand: Grieving the pre-Huntington’s me doesn’t mean I am rejecting the woman I am now. Both things can be true at the same time. I can miss who I was and still respect who I am becoming. That has been one of the deepest lessons I’ve learned on my Huntington’s journey.

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When people talk about grief, they often think about a single event, such as a funeral or a farewell — a moment when life clearly splits into the before and the after. But with Huntington’s disease, grief can come in layers. It can show up quietly and repeatedly. It can be triggered by something small, such as forgetting a word, feeling unsteady in public, needing more rest than I used to, noticing that a task now takes twice as long, or realizing that I no longer navigate the world with the same confidence.

I think many of us try to rush past this grief because we are told, directly or indirectly, to “stay positive,” “be strong,” and “focus on what you can do.” I understand the intention behind those messages, but sometimes they leave out space for honesty. Sometimes strength looks less like smiling through it and more like telling the truth: This hurts. I miss parts of my old life. I am still learning how to carry this.

For me, healing doesn’t mean pretending I don’t grieve. It means learning how to grieve without disappearing. That distinction matters.

The current me isn’t just a list of losses. I’m not defined solely by my symptoms, appointments, medications, and the adjustments I have to make. I’m also resilient, thoughtful, self-aware, and deeply compassionate. I’ve lived through things that would’ve broken many people. I’ve learned how to advocate for myself. I’ve learned to listen to my body in ways I never had to before. I’ve learned that dignity doesn’t depend on productivity, and rest is not laziness. I’ve learned that life can still be meaningful, beautiful, and purposeful, even when it looks different than I imagined.

I honor the pre-Huntington’s me because she is part of my story, carrying my dreams, strengths, and innocence with an ease that I don’t take for granted. I don’t need to erase her to move forward. I can remember her with tenderness.

But I also honor the current me because she is the one living this life right now.

I think layered grief can make identity feel complicated. There are days when I feel like I’m introducing myself to me all over again. What do I enjoy now? What do I need now? What pace is sustainable for me now? What does success look like now? Those “now” questions have become sacred for me.

If I compare myself only to who I used to be, I will always feel like I’m falling behind. But if I meet myself where I am today, I can build a life that actually fits — a life with accommodations, boundaries, and joy that isn’t performative. A life that makes room for both sorrow and gratitude. That, to me, is what honoring both selves looks like.

If you’re grieving the person you were before Huntington’s disease, I want to say this gently: You’re not doing anything wrong. That grief doesn’t make you weak, negative, or ungrateful. It makes you human. You’re allowed to mourn what has changed. And you’re also allowed to build a life you respect from where you stand today.

This life may look different from what you had planned. It may require more support, more patience, and more adjustments. But it still belongs to you.

I’m still learning all of this. Some days I manage better than other days. But I return to this truth again and again: I don’t have to choose between honoring who I was and loving who I am now. There is room for both. And in that room, I am still becoming.

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.