When I think back to the moment when my wife Jill was diagnosed with Huntington’s disease, I remember how the room seemed to shrink around us. The words hung in the air, heavy and inescapable. In that instant, we both knew our lives would never be the same.
What I didn’t anticipate was how differently we would each begin to process the future.
Jill’s approach to coping
Jill has always been the stronger one — at least, that’s what most people would say. She’s positive, thoughtful, and remarkably composed. When we got the news, she didn’t break down. She didn’t ask endless questions about the future or obsess over what might happen.
Instead, she focused on the present: the emotions, the fears, the hopes that bubbled up inside her. She started seeing a therapist, someone who could help her untangle the complex feelings that come with a terminal diagnosis. Through talk therapy, Jill found a way to express her grief, her anger, and her sadness in a safe space.
Outwardly, Jill is stoic. She rarely lets her guard down in public. To friends and even to family, she appears calm and collected, as if she’s already made peace with the diagnosis.
But I know better. I see the moments when she’s quiet and stares off into the distance, lost in thought. I know she’s struggling, but she’s determined to face each day as it comes. She doesn’t dwell on the future. She looks forward, not back.
My experience with anticipatory grief
I, on the other hand, am an open book. I feel everything as it happens, and I can’t hide it. If I’m happy, I’m beaming. If I’m sad, my face reflects my sorrow. And if I’m thinking about how much Jill is likely to suffer in the future, I am like a balloon slowly losing air.
The term to describe how I feel in those moments is called anticipatory grief — and it fits me perfectly.
I grieve the future we will lose, the moments that will slip away, the life we imagined but will probably never have. Sometimes, it’s all too much. There are days when this grief overwhelms me, when the weight of what’s to come feels unbearable. And in those moments, it’s often Jill who ends up comforting me, holding me as tears stream down my face.
It’s a strange reversal, and it’s not lost on me. I’m supposed to be her rock, her support, but sometimes I’m the one who needs holding. It’s humbling, and it’s also a reminder of how much we need each other. We’ve learned to lean on one another in ways we never expected.
Finding our own way
People sometimes ask, “Who handles it better?” At first, I thought the answer would be Jill. She seems so strong and so composed. But the truth is, neither of us handles it “better.” There’s no right way to face a terminal illness. We’re both just trying to survive, to find a way forward that works for us.
For Jill, it’s talk therapy and looking ahead. For me, it’s feeling everything in the moment and letting it show. Neither approach is wrong. We’re both doing the best we can, and that’s enough.
I’ve come to realize that dealing with an illness — especially a terminal one — should be about what works for you. There’s no manual, no step-by-step guide to navigating the emotional rollercoaster that comes with a diagnosis like Huntington’s.
Holding on to hope together
Some days, it’s about finding joy in the little things: a shared laugh, a quiet moment together, holding hands while taking a walk. Other days, it’s about allowing yourself to feel the pain, to acknowledge the grief that wells up at times when I see the progressive decline of Jill’s cognitive functions.
We’ve also learned the importance of communication. We talk about everything — our fears, our hopes, our frustrations. We don’t shy away from the hard conversations. We’ve made a pact to be honest with each other, even when it’s uncomfortable. It’s not always easy, but it’s necessary.
At the end of the day, we’re both learning to live with the unknown. We don’t know what the future holds, but we’re determined to face it together. We’re learning to cherish each moment, to find meaning in the everyday, and to hold on to hope of a cure, even when that hope feels elusive.
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.
