The boundary that improved communication in our marriage
Huntington’s disease has deepened our understanding of each other
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The first time my wife, Jill, almost cried in front of me, Huntington’s disease (HD) was already part of our story, just not the headline yet. It was there in the background, like a low drumbeat under all the usual early-relationship excitement: new love, big plans, and a future we believed we could completely script ourselves.
From the beginning, Jill was open about HD. She told me her father had Huntington’s and described what that meant for her and her young daughter, Alexus. Those conversations were honest, detailed, and sometimes dark, but she always seemed stoically brave.
The moment that stuck with me, though, was not about wills, genetic testing, or symptoms. It was about something much bigger in her heart.
We were still early in our relationship, and I made a joke and then a teasing comment that brushed against a tender memory of hers. It was the kind of remark you expect to earn an eye roll, not a reaction. Instead, her eyes suddenly filled with tears and her smile faltered. She took a breath and said, “Hey, can we not go there? If we keep talking, I’m going to cry.”
It surprised me, because this was Jill, the woman who could talk about having a 50% genetic risk of getting HD as calmly as if she were reading a weather report. She never flinched at the big stuff. But this small, personal thing might make her cry, and she was gently steering us away from it.
At first, I misread it. I thought she didn’t want to be vulnerable, and I translated her words into toughness. To me, Jill was the strong one, the non-crier. That night, I let it go, but the image of her almost crying stayed with me.
Drawing the line
Years later, after she tested positive for Huntington’s at the age of 41, and then our daughter followed at 22, we had countless conversations about HD. We talked about neurologist appointments, clinical trials, what symptoms might look like, how to support our daughter, and how to live well in the middle of it all. Jill was still open about it. If anything, she was more so, including sharing in this column about Huntington’s to help others feel less alone.
Even then, every so often, something small would trigger that same look: the quick shine in her eyes, the swallow, the quiet request to change course. It was rarely about HD itself. It was about a detail, a memory, or a thought that brushed too close to a weak spot in her emotional armor.
One night, after a TV show unexpectedly echoed some of our fears, Jill began to cry and then immediately started apologizing for it, something she has done more than once. Later, I finally asked the question I should have asked years earlier.
“Help me understand,” I said. “You are so open about Huntington’s. You will talk about anything. But when it comes to crying, you pull back. Why?”
She took a moment and then said, “Because crying does not make me feel better. It makes me feel worse.”
She explained that, when she cries, she feels exposed and drained, like someone has wrung her out and left her on an emotional clothesline. The headache, the swollen eyes, the way her thoughts can spiral afterward, none of that feels cleansing. So when she asked me not to keep talking about something that would make her cry, it wasn’t because the topic was too big or important. It was because the fallout from the tears would cost her more than the conversation was worth.
That was the moment the earlier memory finally clicked into place: She wasn’t avoiding Huntington’s, life, or honesty. She was simply drawing a line at crying.
Since then, her request has become a kind of loving boundary in our marriage. Jill will talk about HD any day of the week: the science, the odds, the symptoms, the fears. But when she senses that a particular angle, joke, or memory will tip her into tears, she lets me know. My job is to listen, ease off, and maybe bring in one of my hilarious puns as a palate cleanser. Her openness about not liking to cry has actually made our communication more honest, not less.
Huntington’s disease has rewritten parts of our future, but it has also deepened our understanding of each other. Jill is not the tough one who never cries. She is the open one who knows herself well enough to say, “This will hurt more than it helps.”
Every time she trusts me with that truth, it feels like one more way we are choosing each other in spite of HD, sometimes by talking, sometimes by staying quiet, and sometimes by laughing instead of crying.
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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