How my gene-positive wife guards against the frequency illusion
We curtail talk about HD symptoms lest we see them everywhere
In 2018, in the months leading up to when my wife, Jill, was diagnosed as gene-positive with Huntington’s disease (HD), we kept our worries to ourselves about the symptoms she was exhibiting, including chorea and depression. We knew they were classic signs of HD, but it was difficult to admit that our worst fears might be true.
When she finally asked if I noticed any symptoms, my affirmative answer prompted her to take a genetic test, which proved she’d inherited the mutation that caused the disease that had taken her father’s life.
After her diagnosis, we had a heart-to-heart talk about how important it was to be open about what I was seeing and what Jill was experiencing so that we wouldn’t bypass any major issues that were sure to come up later.
But that approach has changed.
We now have an interesting way to keep track of any new HD symptoms she’s experiencing. I write down or keep a mental note of anything that may be a potential issue, and she does the same. And then, contrary to what we pledged in 2018, we don’t discuss it right away. Not only do we not have a deep conversation about what we think could be happening, we don’t even mention it until we’re 100% sure that it’s happening.
When Jill proposed this process in 2019, I told her I thought the idea was absurd.
Telling my wife that her words were absurd was not the best plan my husband brain could come up with at that moment, but it made the most sense. How could my very logical wife ask me to do something that was so outside the pact we’d just made a year earlier? The explanation that followed made me eat my own words.
Jill smiled and asked me if I knew someone in my family who’d just bought a new car. “Yes,” I said. Then she asked me to remember what had been happening every time I drove since then.
“I saw that exact make and model everywhere,” I said.
Jill nodded, pleased that I grasped her point. “Exactly,” she said. “It’s called the Baader-Meinhof phenomenon, or frequency illusion. Once you become aware of something, you start noticing it everywhere.”
She then explained that her fear wasn’t about the symptoms themselves, but our perception of them. “If we constantly discuss every little thing we notice,” she said, “we might start seeing symptoms that aren’t really there, or exaggerating minor issues.”
Why it works
I had to admit, her reasoning was sound. By giving ourselves time to observe without immediate discussion, we could avoid the pitfall of overanalyzing every twitch or moment of forgetfulness. It allowed us to distinguish between genuine symptoms and the normal variations in human behavior we all experience.
This approach also had an unexpected benefit. It gave Jill a sense of control in a situation where so much was out of her hands. By choosing when and how to discuss her symptoms, she maintained agency over her own health narrative.
Over time, I’ve come to appreciate the wisdom in Jill’s method. It’s not about hiding things from each other, but about creating a space for objective observation. When we do discuss new symptoms, our conversations are more productive and less anxiety-ridden because we’ve had time to process our observations.
Of course, that doesn’t mean we ignore urgent issues or suffer in silence. We’ve established clear guidelines for what constitutes an immediate discussion versus what can wait for our periodic check-ins.
The experience has taught me a valuable lesson about the importance of listening and keeping an open mind, especially when it comes to how Jill wants to manage her health. What seemed absurd at first glance turned out to be a thoughtful, nuanced approach to a complex situation. It allows us to live our lives without constant fear and speculation while still being vigilant about any changes.
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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