The Pros and Cons of Writing About Life with Disease

Earlier this year, I heard of an opportunity to write a column for Bionews Services. As many of you know, my wife, Jill, was diagnosed with the Huntington’s gene. Before I applied, I wanted to discuss it with Jill.

I have shared in the past that my wife is a private person, so I wasn’t sure what she would say. When I asked her about it, her first reaction was a resounding “yes.” She said, “Of course, that would be awesome.” I was shocked by her quick, positive reaction.

Seeing my surprise, she said we should take a moment to think about the pros and cons. The cons came easily, as we had been thinking about them for years. It could affect both of our jobs. It could affect our insurance, now and in the future. The knowledge of my wife’s diagnosis makes Huntington’s a preexisting condition, which is frightening to think about, especially now. It could affect relationships with friends and family. It could affect our daughter’s future. So, yeah, the cons were there.

We had no reason to think of the pros before, but as we considered writing about her disease, they came easily: It could be therapeutic for both of us to share our journey. It could help give comfort to others in the Huntington’s community. It would help us face and talk about what’s going on in our lives. It would help us be more positive about it, or at least remind us to look at life with more humor. The biggest thing we wanted to do was help make a difference.

After I became a columnist, some potential issues emerged. How do we share our story and our journey but protect our daughter’s future? How could we ask people to get to know us and her while keeping her privacy safe? After she decided to get genetic testing for the Huntington’s gene, we felt it was important to share the results. I took great care in sharing everything I could, but also tried to keep her name and specific personal details out of the column.

After graduating from college in the spring, and before starting her new job in July, our daughter came home. One day I received an email from an editor at Bionews Services seeking others who might be interested in writing a Huntington’s column. When I mentioned the email later that day to my daughter, she said, “I would love to do that!” I thought she was joking — she got her sense of humor from me. Then I saw her face and realized she was serious. All the things we worried about were not the things that she worried about. All of our cons didn’t matter to her. She only wants to make a positive impact on the world. If sharing her story will help achieve that, then so be it.

So, I would like to introduce my daughter as a recent columnist to Bionews Services. Welcome to our wonderful, beautiful, kind, brilliant daughter, Alexus Jones, who also has Huntington’s. I know that you will love her and her writing as much as her mother and I do.

***

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 Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.