The High Cost of Writing About Huntington’s Disease
I began this column about seven months after my wife, Jill, discovered she was gene-positive for Huntington’s disease (HD) in 2018. Every week since then, Jill and I discuss what I should write about, and this week was no different.
As we brainstormed, Jill asked me a couple of simple questions: Do you think this column is helping anyone? Is it worth the price to keep writing it?
I asked her why she was asking. She told me that the cost of thinking, talking, and sharing about her private issues was starting to take a toll on her.
I’ve talked about how private Jill is with most things in her life, but she was open to committing to this column because she hoped it would help others who might not have the knowledge she has about taking care of a loved one with HD. Her father had the condition, and now her daughter has it, too. She hoped the column could be a voice for the voiceless. If people felt less alone and scared because they read this column, she said, it would be worth it.
When I started writing this column in early 2019, Jill and I had many topics we wanted to share. As time went on, Jill started to realize that being transparent was harder than she thought it would be.
But she persevered. She kept workshopping ideas with me. She encouraged me to write about subjects she wouldn’t usually share with strangers, such as her mental health, her physical health, and the decline of both.
Then, last week, she came to the realization that thinking about Huntington’s on a weekly basis has been therapeutic, but also has its downsides.
She’s forced to confront her fears of what’s to come, which is not a great feeling. She also worries that her fears are starting to define her and that talking about her decline in such detail makes it hard to stay strong and carry on.
At times, this column has been difficult for me, as well, because I’d like to just enjoy my time with Jill. However, I’m also reminded weekly of her issues and the fact that she will suffer from the ravages of HD and eventually die from it, unless a cure is found.
I didn’t — and don’t — have an answer for Jill’s questions. But we continue to hope that this column helps others with Huntington’s not to feel alone, and that is worth the emotional toll of sharing our lives with others.
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.