Watching Huntington’s switch roles in our marriage was jarring

Some days, I view my life like a split screen. On one side is life before Huntington’s disease entered it. On the other is everything that’s come after.

Although our lives changed the day my wife, Jill, was diagnosed with Huntington’s in 2018, she hasn’t. Every now and then, I need a reminder of that.

The other morning, I mentioned that I needed to see the doctor for a routine checkup. Without missing a beat, Jill said, “I’ll go with you. It’s only fair, I’ve dragged you to enough of my appointments.”

Jill smiled, her eyes bright and almost playful. The offer lingered with me.

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Years earlier, Jill was in charge of everything health-related. She worked in healthcare and always knew what questions to ask, which forms to fill out, and which prescriptions to double-check. When we got married, I never had to think about any of that. She had it handled.

But since Huntington’s showed up, those roles have shifted. I’m the one now keeping track of appointments, prescriptions, notes, and insurance details. What I didn’t realize until that morning conversation was how much being “the one in charge” meant to Jill — not just as a role, but also as part of her identity.

That morning, she was eager to step into her old shoes again, even just for a day. We decided to turn my appointment into an outing with lunch afterward, and maybe a walk through our favorite park.

When we arrived, I dropped off Jill at the entrance, parked the car, and found her in the waiting room. She had already checked us in and was holding the new patient clipboard. But the form was blank. I couldn’t fathom what had upset her, so I asked about her not filling out the form.

“I just don’t feel like it,” she said sadly. “Besides, why are we still filling out paper forms at doctors’ offices? It’s 2025. Have they not figured out that computers exist?”

The nurse summoned me, and Jill, the clipboard, and I were ushered into an exam room, where Jill informed me that the clipboard was now my responsibility. In that instant, I recognized something deeper than sadness: the emotional weight that Huntington’s disease deposits into ordinary moments. Her sadness appeared without warning, one of those unpredictable waves that this disease often causes.

I didn’t push. I took the form and filled it out quietly. Later, in the car, Jill opened up. Her voice carried a slight tremor of anxiety beneath the steady tone.

“It’s funny. For years, I was the one who knew everything. Huntington’s has made me question how long that ability will last,” she said.

Her comment pierced me. Huntington’s rewrites the balance in a relationship — not all at once, but piece by piece. That day, I saw both the fearless caregiver she once was and the vulnerable woman still learning to make peace with what she can’t control.

Doctors’ offices have always made Jill anxious, and the one thing she could focus on to help her cope is now something that makes her anxiety worse. We both feel like we’re stuck in the middle of emotional minefields, and the artillery is disguised as a clipboard.

In that waiting room, I realized something simple yet profound: Although Jill battles Huntington’s disease every day, she is still Jill. Her compassion, her humor, her stubborn streak — they all remain intact. She might need a little more help filling out forms these days, but her heart, courage, and devotion to others are unwavering.

When strength changes hands in a marriage, it doesn’t mean one person becomes weak. It means both are learning to love differently — through patience, grace, and by being present.

That day reminded me that every time Jill shows up ready to help, advocate, or simply be with me, she’s proving that Huntington’s disease may chart new boundaries, but it doesn’t define who she is.

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.