Encouraging Difficult Conversations About Huntington’s Disease

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by Carlos Briceño |

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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.

Comments

Ellen B Eaton avatar

Ellen B Eaton

Sending a "Thank you" to Jill for allowing you to share...............

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Carlos Briceño avatar

Carlos Briceño

Jill is happy to share anything that may help someone.

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Pam Voss Westman avatar

Pam Voss Westman

I enjoy all your columns. I'm 64 ... or 65 ... born in 57 ... lol
I share many of your stories on my support group.
Just thinking after the fact, is that ok?
Pam

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Carlos Briceño avatar

Carlos Briceño

Hello Pam! You're like Jill, forever young.
I'm glad to hear you are in a support group and we are happy you are able to share. Our column is a place where we share, so we are happy to hear that we have touched your life. Our stories can be shared with as many people as you want. You can always direct them to sign up to receive the columns and other news from Bionews directly by going to https://huntingtonsdiseasenews.com/author/carlos-briceno/, at the bottom of the page there's a place where they can subscribe to our newsletter.

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M. Carlini avatar

M. Carlini

People talk about HD in the family, my son who was diagnosed at 48 with HD what a shock as there is no record of this disease in my husbands and my large families. This is hard for us and my sons family to digest we were not prepared for this genetic disease. How do you explain and deal with this horrible disease he is 6 years after being diagnosed and now resides in Sitrin Nero which deals with only HD he gets wonderful care.

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Carlos Briceño avatar

Carlos Briceño

Thank you for sharing your story. I can tell you from experience that there will never be the right words to make talking about Huntington’s disease easy. It is devastating to everyone involved and I wish that there was something that I could tell you to make it easier. My wife and daughter are brave to share the pain they feel and I am lucky that they let me write about it. Hopefully, this column helps you and other families feel less alone. I am very happy to hear that you have found a place for your son to get the care he needs.

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