Encouraging Difficult Conversations About Huntington’s Disease

Earlier this month, my wife and daughter, Jill and Alexus, respectively, participated in a panel discussion about Huntington’s disease (HD). The topic was difficult conversations.

Jill and Alexus are both gene-positive for HD, but they each had different reasons for accepting the invitation to participate. Alexus said, “I love talking about myself.” Jill, who is more private, said that as uncomfortable as talking about herself would be, she had agreed because she hoped that what she shared would make people feel less alone during their Huntington’s journey.

Some questions that were posed included: While raising your kids, how did you talk to your children about HD? Do you have any advice for families who are just learning about HD? Does your family talk about testing? What advice do you have for families who have different views or values regarding testing? Can you tell us about your dating experiences? How open are you about sharing about HD on social media?

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I share these questions because they are important topics for discussion among families affected by HD.

One point that Jill and Alexus made was the importance of being open to talking about the disease. A poignant moment during the discussion was hearing a man who had tested positive share how refreshing it was to hear people talking about HD so openly, because in his family, which included several gene-positive members, that was not the case.

I heard the pain in his voice. It’s difficult enough to have HD, but to feel as alone as he seemed to be must be crushing.

That was not the only time I felt sad during the discussion.

Who wants to hear that Jill didn’t like planning for the future when she was younger, before her diagnosis, because she always assumed she would die young from HD. Or that Alexus considered it normal when she was a child that her grandfather, who was gene-positive, got his nutrition through a feeding tube.

To some, talking about HD and acknowledging it as a deadly reality that will usually cause intense suffering is the equivalent of dipping their hands into a pot of boiling water. But not acknowledging or talking about it will not make the disease, or the great emotional and financial toll usually associated with it, disappear.

A major reason I am able to write about HD in this space is because Jill gave me permission to do so. She really does prefer her privacy. But she has told me that, as long as she has breath, she will continue to be open about sharing her experiences and emotions in the hope that she made just one person feel less afraid and alone.

I hope her mindset and courage inspire others to have the difficult conversations they have been trying to avoid.

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.