I am a writer, and as such, I like to think of people as books. Either you are an open book or a closed one. Let me explain.
My wife, Jill, and I have so many things in common that sometimes I forget that we don’t have a few things in common. When we met, we spent hours talking about everything. There was nothing off limits. She was open about her family, her friends, her past, and her hopes for the future. To me, she was an open book. I would later find out that the “to me” part of that sentence would eventually become an important part of how our relationship grew, and eventually how we dealt with her positive diagnosis of Huntington’s disease.
I am open about my emotions. I was raised by a Cuban mother who was a walking, talking, human emotion. She was what I can only describe as an “oversharer,” so I have to assume I inherited some of her affection for sharing.
When we started down the long road to Jill’s diagnosis, I shared our story. I shared it with people at work, people I work out with, people I go to church with, friends and family, and now, with readers of this site. I share because it is who I am at my core. It gives me comfort to know that people are supporting us and praying for our family. It gives me a sense of peace when I need it the most.
Over the years, it has become clear that Jill was not raised by a Cuban mother. Jill is not always on the same page as me with all of the things I am open about. I’ve written about her keeping her worries to herself in the past regarding manifesting symptoms. This is common, but Jill did more than that. She didn’t tell anyone that she was getting the genetic test. I was the only person who knew. Eventually, she shared this with her mother, but for weeks she didn’t tell another soul besides me.
Part of that was because we didn’t want our daughter to find out, as she was away at college when the genetic tests came back. This is not something you want to share over the phone. But the biggest reason is that Jill is a private person. It makes her uncomfortable to have an outpouring of sympathy. She appreciates people asking her how she’s doing. She is always open and honest when others ask about her, but she will never bring it up or be OK with talking about it for long periods.
As you read this, I’m sure you are thinking that our differences might be a dangerous mix. Or that we are so opposite with the way we react that there are bound to be issues in our relationship. You would be right if we were not the couple that we are. Jill asked me to pull back on talking about it, which I have, and she has worked on being more open with all that she’s going through.
We have both come to the decision that this is something we are both going through, and a big part of being supportive of the other’s need to be an open or closed book will be how we deal with life in a healthy way.
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.
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