Unintentional gaslighting is a real risk when a loved one has HD
When memory fails, who gets believed?
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Years ago, our daughter, Alexus, asked where her favorite “coat to steal” was. She described one of my jackets. I pictured my closet and came up blank.
“I don’t know what you’re talking about,” I said. She described it in detail: the color, the fabric, and how it hung on her. I denied ever owning it. I was sure she was mistaken. Memory is a tricky subject for someone like me, in the sense that I have accumulated a lot of them in my nearly 62 years.
Memory is also a sensitive subject for my wife, Jill, who is gene-positive with Huntington’s disease (HD). Cognitive changes can make it difficult for people with HD to remember conversations or details.
Alexus spent several days hunting for that jacket, not because she needed it, but because she knew I had it. I would have passed a lie detector test. I truly believed I had never owned it. Finally, she found it stuffed in the closet, exactly as she had described it.
“See, Dad? You do have it!”
I felt terrible for not remembering and for making her think she was the one who was mistaken, which had frustrated her.
Both of our realities are valid
For Jill, similar moments can feel heavier. HD affects movement, as well as thinking, memory, and communication. Many people with HD struggle to process information quickly, organize items or tasks, or recall details under stress. When your brain is changing, self-doubt comes easily. And it can deepen when someone close to you denies something that’s true.
I have repeated that kind of behavior with Jill more often than I want to admit. She will say, “You told me we were leaving at 3.” I will answer, “No, I said 2:30.” She will insist, “I remember 3,” and I will explain that she must have misheard. I am not yelling or trying to be cruel. I think I am stating facts. But what she hears is, “You cannot trust your memory. Mine counts more.”
Living with HD already makes Jill worry about her thinking and memory. When I rush to correct her, I reinforce that fear. That is how unintentional gaslighting happens. No dramatic manipulation. Just a pattern of one person’s reality being treated as more valid, especially when a diagnosis is easy to blame.
I used to defend myself by saying, “I honestly remember it differently.” That may be true, but impact matters. Jill does not need perfection. She needs me to hold certainty loosely. Instead of “That did not happen,” she needs: “I remember it differently, but I believe this is how it felt to you. Let’s slow down and sort it out together.”
As a result, I’ve been learning new habits. When Jill says, “You sounded harsh,” my old line was, “I wasn’t harsh, you’re just sensitive right now.” Now, I try, “I did not mean to sound harsh, but I can see it landed that way. I am sorry.”
When she says, “You promised you would come with me,” I now say, “I don’t remember promising, but I believe that’s what you heard. So I will be happy to go with you.”
I’m also learning that not every hard moment is “just HD.” Sometimes Jill is upset because the situation is upsetting. Sometimes she is confused because I explained poorly. Sometimes she is exhausted because living with a progressive illness is extremely tiring. When I blame HD for everything, I erase my role and her humanity.
When my memory fails me, no one tells me, “That’s your disease talking.” I get the benefit of the doubt. Jill often does not.
As you can see, I’m trying to be a different kind of husband and caregiver. When Jill and I remember differently, I want curiosity to come before certainty. I want her to feel that her reality matters as much as mine, even when HD is in the room.
Maybe that is the real jacket I need to wear now. Not the one in the closet, but the one made of humility that includes deep listening. The one that lets Alexus, and especially Jill, know that when they say, “This is how it was,” I do not immediately get defensive. I stop, consider they may be right, and say, “I believe you.”
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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