How Huntington’s changes the mental filter between a feeling and a response
It affects how a person pauses, organizes a thought, and chooses how to respond
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Years ago, my wife, Jill, was at a party talking with a friend. The conversation turned personal, and her friend asked a difficult question. It was the kind of question people sometimes ask when they want to be reassured but are afraid to hear what someone who knows them well might really think.
Jill paused and then asked, “Do you want the hard truth, or do you want to hear from your supportive loved one?”
That question has shaped how Jill, who is gene-positive with Huntington’s disease (HD), talks to people in her life.
Many people would describe Jill as logically up-front, especially if you ask her to be. She does not enjoy pretending that a problem doesn’t exist. If you ask her a hard question, she believes you deserve an honest answer.
But her question is never meant to make someone feel badly. It is not an offer to lie. It gives the other person a chance to decide what they truly need in that moment.
Sometimes people need a direct answer, kindly but clearly. Other times, they are carrying enough already and need encouragement, perspective, or someone to sit beside them before they are ready to face every difficult possibility. Jill learned that truth matters, but timing and tenderness matter, too.
But now, as her rare disease progresses, she recently shared with me that she wonders if how she reacts to people is how she normally would have reacted or if HD is adversely affecting her responses.
Discussions without blame
Jill realizes that HD does more than affect movement. It also affects the parts of the brain that help a person pause, organize a thought, read a situation, regulate emotions, and choose how to respond.
There is no simple answer because HD doesn’t erase who someone is. Jill is still thoughtful, funny, caring, practical, honest, and deeply aware of the people around her. She still gets to have feelings and be frustrated.
But HD can change how easily someone can use the mental filter between a feeling and a response. Other symptoms can make it harder to stop, think, shift perspective, or soften words before speaking. It can affect impulse control, mental flexibility, emotional regulation, planning, and the ability to read the unspoken signals that guide everyday conversations. Irritability, anger, apathy, anxiety, depression, and disinhibition are more symptoms of HD, though they differ from person to person.
People sometimes call this losing a filter. But that can be unfair. It doesn’t mean a person with HD suddenly becomes unkind or stops caring. It means the mental pause between feeling something and saying or doing something can become harder to find. A frustration someone else might set aside may come out quickly. A comment that once would’ve been softened may sound more direct. Stress, fatigue, noise, conflict, and too many demands can make this harder.
The difficult part is not only the reaction itself. As Jill explained it to me, it is the uncertainty that follows. Was she too impatient? Was she too sharp? Was it really her, or was it HD?
Those questions can bring guilt, embarrassment, and fear. They can make someone second-guess a normal emotion or wonder whether loved ones are noticing changes they cannot see themselves.
Families need to discuss these moments without blame. A spouse, friend, or caregiver doesn’t have to excuse a hurtful comment, and loving someone doesn’t mean pretending nothing happened. But it does mean recognizing that a reaction may have more behind it than a bad day or bad manners.
It means taking a breath before answering anger with anger. It means asking, “Are you overwhelmed?” instead of assuming, “You do not care.” It means leaving room for an apology, repair, and better strategies the next time a difficult moment comes.
Jill’s question from years ago still offers an important lesson: “Do you want the hard truth, or do you want to hear from your supportive loved one?” For families affected by HD, the answer often may be both.
People deserve honesty and compassion. Someone can tell the truth without being cruel. Someone can offer support without denying reality.
It’s obvious that HD can make ordinary moments more complicated. But I know that Jill’s goal isn’t to lose her honesty. That’s one of the many things people love about her.
My goal is to protect that honesty with patience, understanding, and love.
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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