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Turning the tide for rare disease

The healing power of storytelling

By Erin Paterson

When Erin Paterson discovered she was gene positive for Huntington’s, she was left feeling depressed and anxious. Finding the courage to tell people about her genetic status has given her a fuller, more authentic life. Erin has been empowered by sharing her own story and now she helps others to tell theirs.

The moment I stepped up to the speaker’s podium my nerves suddenly kicked in. I looked out across the conference room and adjusted the microphone in front of me. I was about to share my deepest secret with a bunch of strangers. I glanced down at my notes, clasped my trembling hands together and began speaking about the worst five and a half years of my life.

The healing power of storytelling

When I was 32 years old, I was diagnosed as gene positive for Huntington’s Disease (HD). I had no idea that a genetic disease ran in my family until my husband and I decided to have children. It was then that my parents revealed their suspicions that my grandmother might have had HD. Since my biological clock was ticking, I decided to go through genetic testing and found out eight months later that I was gene positive for the disease. HD is a degenerative neurological disorder that causes cognitive impairment, uncontrolled movements and emotional issues. Carriers of the gene will develop the disease but don’t know when the symptoms will appear.

After my diagnosis, I had knowledge about my future that most people don’t have about themselves. Discovering this information changed the person I was. I became terrified of my future. I was severely depressed and developed an anxiety disorder. I was afraid of being alone because that was when my thoughts would start racing out of control. I am going to get HD, I am going to get HD. I would sleep twelve hours a night but found no relief because I would have nightmares about my diagnosis. I had trouble getting out of bed in the morning and I could hardly function at work. I became terrified of answering the phone, fearing more bad news.

In the midst of those struggles my husband and I had a difficult question to answer. Was it morally correct to have a child, knowing that there was a 50% chance they could inherit HD from me? This was a question with no clear answer. Even within my family the opinions differed. I told myself at the time, my life has value as a person with HD and so would the life of our child if they happened to inherit the gene from me. So, my husband and I decided to conceive naturally despite the risk. This was far from a confident decision. I didn’t know if what we were doing was the right thing, but we had to move forward somehow.

One year later I was still not pregnant. We ended up seeking the help of a fertility specialist and endured years of treatments, including in vitro fertilisation, without any luck. Going through all those fertility treatments delayed the healing process for me because each month I was forced to face HD, as I had to repeatedly make the decision to risk my child’s health. The only thing I was sure of during all of that turmoil was that I wanted to be a mom. Since nothing else was working, we decided to try adopting a child even though we feared we would get turned down because of my genetic status.

Five and a half years after we had started trying to have a family, we finally became parents through adoption. The day that we met our daughter was one of the happiest and scariest moments of our lives. When we entered the room, she was fast asleep, bundled up in a soft fleece blanket and lying in a basinet that was gently rocking back and forth. We brought her home when she was just 10 days old. We were ecstatic to have finally become the parents we had always imagined. I spent most of my days sitting on the couch, holding my sleeping daughter in my arms and staring at her in awe.

Even after realising my dream, there was a lot of healing I needed to do. As I was going through those traumatic experiences, I had kept them a secret from most people in my life. HD and infertility had diminished my self-worth. I viewed myself as defective and thought others would too. I was afraid once people knew about my genetic status they wouldn’t want to be friends. I saw myself only as my disease and didn’t see anything else I brought to the world.

After my daughter was born, I was still in survival mode. I continued holding a piece of myself back in all of my relationships. I didn’t feel like I was fully living my life. Eventually I got sick of feeling this way and I made a huge decision. I made the choice to stop living in secrecy and fear. I decided I was going to start being open about my genetic status.

I started off with small things at first. Telling someone my gene status in my running group or mentioning HD to a fellow mom when my daughter started school. It was terrifying every single time. When I didn’t get rejected, I started doing more things. I participated in a video awareness campaign, I started guest blogging about HD, and I decided to write a book about my journey. I am great at expressing my emotions and I knew that sharing my stories would help someone else.

Over the past several years I have become an HD advocate. I have spoken at numerous live events and conferences. I have had over 25 stories published online and I have been on 15 podcasts talking about my experiences with HD. I am so proud to say that my book, All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness, was also released. People have reached out to me from all over the world. Some write to say thank you for bringing awareness to the disease and others write to say they felt less alone after reading my story. I am so grateful that I am able to make a difference in other people’s lives.

One thing that I was not expecting was how cathartic the whole process was for me. Writing and sharing my story has helped me to understand what I went through and come to terms with my future with HD. I feel as if a huge weight has been lifted off my shoulders and I am able to live a fuller and more authentic life. I want others to feel that way too, so I now help people share their own medical stories. I know it will empower them and people in their communities. 

If you had told me back on that day when I was standing at that speaker’s podium about to share my story for the first time that I was going to accomplish all of these things, I wouldn’t have believed you. Because as I stood there on the precipice of giving my speech, with my hands shaking uncontrollably, I was terrified of what I was about to do.

It has become easier to share the scary parts of my life, but it is still emotionally exhausting. I continuously put myself out there because I know it will help other people on their own journeys. I do it because I want to give a voice to the HD community and our shared experiences. If we don’t express how it feels to live with HD, how can we ever expect other people to understand and support us? How can we live a full life when we are only living half of it?

The healing power of storytelling

Erin’s book is available on Amazon: Good Things: A Memoir about Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness 

To find out more about Erin and Huntington’s, visit: 

www.erinpaterson.com


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