What 'Virgin River' Got Right About Huntington's Disease

“Do you feel the representation of Huntington’s disease (HD) is accurate on ‘Virgin River’?” a close friend asked me today. As I sat in my living room, drinking my morning coffee and scrolling through Instagram, I thought about her question. Funnily enough, I had just finished watching the series, so the timing of her question was perfect.

“Virgin River” is a show on Netflix and one of the characters was revealed to have Huntington’s disease in season four. In the show, we see him hiding his diagnosis from those around him. We also see him struggling to navigate the dating world. Is it really fair to get involved in a relationship when you know your future includes a terminal illness?

Situations such as these are often the cause of a tremendous amount of emotional strife and can leave people from the HD community feeling isolated and misunderstood. Young people, especially, are faced with many moral dilemmas about how to live their lives, struggling to find acceptable solutions to questions that have no right answer.

People are able to go through genetic testing to find out if they have inherited Huntington’s disease, but even that causes problems as people try to decide if they want to know what their future holds. It often consumes people’s lives.

People who have decided not to go through genetic testing often live their lives in constant doubt, looking for symptoms of Huntington’s disease, wondering if every twitch of the foot or angry outburst is the start of the disease. Worried they are going to follow the same path their parent took. Caring for their loved ones who have HD, afraid that the same things are going to happen to themselves one day.

People who test gene positive (meaning they inherited the gene and will get the disease one day) are suffering long before they have their first physical symptoms. It is mentally challenging living with the knowledge that you will get this terminal illness. People often experience anxiety and depression. They struggle to answer questions like, is it OK to have children knowing there is a 50% chance I could pass along the disease? Will people treat me differently if I tell them? How can I accept that I will need care from others when I get sick?

People who test gene negative often feel like outsiders within their own community. They are still there to be caregivers, but somehow they are not able to grieve all they have lost because they are meant to be “the strong ones.” After testing gene negative, some people feel terrified of their futures because a life shadowed by Huntington’s disease was all they have ever known, and they can have a hard time imagining a new future for themselves.

People are impacted by Huntington’s disease in so many different ways. I am certainly glad that “Virgin River” picked up on some of the sociological nuances of the disease. We are so often focused on the symptoms that you can see, such as chorea, but the fact of the matter is this disease impacts people’s lives long before that.

I look forward to watching the next season of the show to see how this story develops and how the community of Virgin River embraces a young man impacted by Huntington’s disease. There are so many questions about his diagnosis that have not been answered and so many directions that story could go.

No matter what happens in this particular storyline, I am incredibly grateful that the show put a spotlight on this rare disease. Not only are they raising awareness for Huntington’s disease, but they are also helping the people in the HD community feel supported and seen.