Dancing with grief through the stages of Huntington’s disease
Grief, like HD, is as individual as the people experiencing it
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The other evening, my wife, Jill, and I were watching a YouTube show that explored how people cope with loss. As the narrator was describing the seven stages of grief — shock, denial, anger, bargaining, depression, acceptance, and hope — Jill clicked the pause button.
In our years together, especially since her Huntington’s disease diagnosis, I’ve learned that when Jill pauses a show to share something, it’s worth paying attention. She has this way of cutting through conventional wisdom with questions that make me realize how much I take for granted.
“Carlos,” she said, turning to face me with that thoughtful expression I know so well. “Are any two people on this planet exactly the same?”
I recognized this wasn’t a rhetorical question. “No,” I said, though I could sense she was leading somewhere deeper.
She nodded. “Then if people are so different from each other, why would they all handle grief the same way?”
That stopped me cold. Here I was, accepting without question this neat, organized framework for human suffering, while Jill was seeing right through to its fundamental flaw.
She wasn’t finished. “If everyone is different, how can we expect them to have stages of anything that are so clearly defined? And why do people think that once they get to stage seven, it’s all over?”
The seven stages of grief model suggests that people experiencing loss share the same road map and maneuver along a predictable path from devastation to healing.
But Jill’s questions exposed something troubling about this framework. We’ve turned grief into a checklist, a series of boxes to tick off on our way to “recovery.” Worse, we’ve created an expectation that there’s an endpoint — that reaching “acceptance” means we’re done, healed, and ready to move on.
There’s no universal template for suffering
Living with Huntington’s has taught us that loss isn’t a one-time event you process and complete. It’s ongoing, layered, and complex. Jill grieves the future she imagined, the abilities she’s losing, the burden she feels she’s placing on me. I grieve the life we planned, watching her struggle, and my own sadness about observing someone I love suffer in devastating ways.
But our grief doesn’t follow a neat progression. Some days, Jill cycles through anger and sadness within hours. Most days, she’s remarkably accepting of our situation and filled with gratitude for life’s little joys, like taking long walks or being on vacation. It’s like we are dancing with grief, and each day is a different dance.
What struck me most about Jill’s insight wasn’t just the observation itself, but what it revealed about how we process difficult truths. We’re so desperate to make sense of pain, to create order from chaos, that we’ve convinced ourselves there’s a universal template for human suffering.
This reminds me of how the medical community often approaches Huntington’s disease — and many other conditions — with rigid timelines and expectations. “You have 15-20 years,” they say, as if every person’s journey will unfold identically.
We’ve learned better. We know that each person’s experience is unique, unpredictable, and deeply personal.
Maybe grief deserves the same recognition. Maybe instead of stages, we need to acknowledge that grief is as individual as the people experiencing it. Maybe “acceptance” isn’t a destination but rather a state we visit and revisit, sometimes staying briefly, sometimes longer, sometimes earlier than we expect.
Jill’s questions reminded me of why I fell in love with her mind in the first place. Even as Huntington’s disease changes her body, her ability to see through societal assumptions and ask the questions others don’t think to ask remains razor-sharp.
That night, we didn’t finish the YouTube show. The subject matter was too heavy. Instead, we decided to listen to music and started dancing together. In the end, even a dance shaped by grief can feel like a gift, because we’re still here, still moving, still together.
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.
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