The Importance of Sharing our Stories

When my brother learned he had Huntington’s disease (HD) ten years ago, I had no idea what that meant. I read online descriptions to learn about the disease’s symptoms and how it is inherited, and I watched YouTube videos of families describing how the disease has impacted their lives. I immediately felt a sense of dread. I remember thinking to myself, “This can’t be true.” How could we not have known that Huntington’s disease runs in our family? 

I didn’t want Huntington’s disease to be part of my family’s story, even though it explained so much about my dad and my grandpa. They both had telltale symptoms of Huntington’s disease but had been misdiagnosed with other ailments. I had a hard time coping with the number of family members who might have Huntington’s disease one day. In addition to my brother, who was already symptomatic, there were nine people in my family – including me and my kids – who could have inherited the genetic mutation that causes Huntington’s disease. I didn’t want this to be my family’s reality, but it was.

Anyone who belongs to an HD family understands just how overwhelming these early days were for me and my family. When I was coming to terms with this significant change in our lives, I wanted a single resource I could turn to that could help me make sense of this new world I found myself in. I wanted more than a clinical description. I wanted – rather, I needed – to understand the lived experience of Huntington’s disease. I needed a framework to make sense of my family’s past, present, and future. I needed to know how others lived with this disease. I pieced together my understanding of Huntington’s disease from a variety of sources, but I would have liked to have had one book that answered all my questions.

Huntington’s disease is a complex neurodegenerative disease that has a long list of physical, cognitive, and behavioral symptoms. It is a rare disease, so few people have heard of it. Since my brother’s diagnosis, I’ve had to explain Huntington’s disease and my experience many times. There is always so much more to tell than what I can share in a quick conversation, so I often feel like my explanations fall short, even after ten years of practice. I find myself wishing other people were already familiar with Huntington’s disease so I didn’t have to give a lesson in HD 101 before I could help somebody understand what it’s like to belong to an HD family. 

So, I decided to write the book I wished I had when I first learned about Huntington’s disease – a book that could answer my own questions and help people around me understand this very complicated disease. I knew that my own story, by itself, was just one part of a much bigger story, so I reached out to the HD community to find people willing to share how Huntington’s disease has impacted them. I talked to as many people as I could to capture a wide variety of experiences. Livable Lives: Conversations with the Huntington’s Disease Community is a forthcoming book based on those conversations. 

As I talked to people from around the world, I quickly came to understand the importance of sharing our stories. Huntington’s disease has a huge impact on families and individuals, so sharing our stories gives us some control over the narrative surrounding our experiences. In my conversations with the HD community, people talked about how sharing can be healing and empowering – it can help us connect with others and feel less alone. This type of sharing helps the person who is telling their story as much as it helps those who hear it and can relate it to their own experiences. People also talked about sharing their stories as a form of advocacy. In this case, telling our stories raises awareness of a disease that’s not well known and rarely spoken about. It is a step toward reducing the stigma and shame that are often attached to Huntington’s disease. 

But sharing our stories doesn’t have to be public, and it doesn’t have to be monumental. It can be as simple as having a personal conversation with the people around us to help them understand the challenges of belonging to an HD family. When Livable Lives is available, my biggest hope is that it will provide a starting point for conversations with family members, friends, doctors, therapists, and others – a starting point for conversations that can promote a better understanding of this complicated disease and its impacts on the HD community.

Stay tuned for updates on Livable Lives, which will be released this fall! And watch for future blog posts about what I’ve learned from my conversations with the HD community.