A gene-positive author shares stories of fellow HD heroes
Why it's important to keep sharing our Huntington's disease stories
A former columnist for Huntington’s Disease News, Erin Paterson, tested gene-positive for Huntington’s disease (HD) in 2006. She’s also the founder of Lemonade Press, a social enterprise focused on empowering people through storytelling. Through writing and speaking about genetic disease, depression, and infertility, she hopes to have an impact on people’s lives.
In honor of Huntington’s Disease Awareness Month this May, I wanted her to share what she learned from publishing a book this year called “Huntington’s Disease Heroes: Inspiring Stories of Resilience from the HD Community.” Excerpts of our email exchange follow, with light editing for clarity.
CB: What was the inspiration behind your new book?
EP: It came from the experience of writing my first book, “All Good Things.” That book is about finding out I was gene-positive for HD and how that impacted our decision to have children. Going through that was a traumatic experience for me, and writing about it was very healing. When I write, it helps me process what I am going through or look back on decisions I have made and understand myself better.
When [it] was published, I felt like an enormous burden had been lifted. I didn’t have to carry those experiences around anymore; they could live inside the book. I decided to put “HD Heroes” together because I wanted to help other people in the community experience those things, too. So I started reaching out to people to see if they wanted to share their story in the book.
What do you hope readers learn after reading it?
I hope that every person who picks up a copy of the book sees themselves in the stories and feels a connection to what people have written because I know this will help them feel less alone. I hope it empowers them to start speaking up about HD as well, whether that is talking to their families about how they feel, advocating for medical care, sharing on social media, etc. — whatever feels right for them. As a community, if we’re not talking about what we’re going through, it is extremely difficult for people to understand. I also hope that the book will give the medical community a better understanding of the real-life impacts of HD so that they can support patients (and their families) even better than they already are.
Why is it so important to keep writing about the HD community?
After I was diagnosed, I lived in secrecy and fear for a very long time. Living that way made me feel ashamed, and eventually I got sick of it. “There must be a better way,” I thought. I decided I wanted to live openly and not hide my diagnosis anymore. Writing and being public about HD was a terrifying step to take, but it was one of the best decisions I’ve ever made.
I keep writing about HD because I know a lot of people are in the same situation as I was. They are afraid of what might happen if they share their secret. I wanted to be able to support them by giving a voice to some of our mutual experiences. There is a lot of power in reading something someone has written and thinking, “Hey, I feel that way, too.”
Many in the HD community have found it difficult to talk about the disease with others. What’s a piece of advice you could give them?
It can be really scary to start being more open about HD, especially when you don’t get the reaction from people that you are hoping for. A lot of people in my life brushed it off because it made them uncomfortable and that felt incredibly hurtful to me. My advice is to keep talking about it. Eventually you will find the people who are willing to have those conversations and support you. You just have to find the people in your life with the capacity and understanding for it.
At the moment, there is no cure for HD. That can be disheartening. Did writing the book change your outlook?
The amazing thing about putting this book together has been seeing how excited everyone is about “HD Heroes,” now that it’s published. They’re grateful that, through these stories, the community has a voice, and they are happy for the awareness it’s bringing. Working on this book has made me feel more connected to the HD community, not only because I have gotten to know the fabulous people involved who bravely shared their stories, but because it’s given me that sense of connection with the community, too. It’s helped me see that we’re all struggling with something, and we’re all just doing our best. It has made me feel less alone, and I hope it does that for everyone else, too.
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.
My husband died of Hd 20 years ago. I am now in the dreadful position of watching my daughter deteriorate day by day. As a parent it is the worst thing possible to witness this distressing disease. I hate the illness but try to help as much as possible. It is the most destructive genetic disease not only for the patient but also for family carers.
I feel your sadness and I am so sorry for your loss. I know without a cure, my future will be a similar experience. I am sure your daughter appreciates your help and I wish you strength to keep going. Being a caregiver is not easy but it can be so much harder when you know what is to come.