‘Just Show Up’: Accepting Support from the Huntington’s Community

For a time following my diagnosis as gene-positive for Huntington’s disease (HD), I avoided elderly people. The mere glimpse of a wrinkled hand was a reminder that I was going to develop Huntington’s someday, and that was something I was trying to forget.

Recently, my husband and I attended our first meeting for a local chapter of the Huntington Society of Canada, held in the community room of a retirement home — the sort of place that used to induce a panic attack.

Upon our arrival, we were greeted by the hosts with welcoming handshakes and hugs. We helped ourselves to coffee and cookies before sitting in the only vacant folding chairs next to the window at the back of the room.

That afternoon, we were graced with the presence of Yvonne Heath, a former nurse turned motivational speaker. She spoke about being there for our families and friends when they’re struggling. She told us that supporting a person through a crisis could mean shoveling their driveway, dropping off banana bread, or sitting down to listen.

“You don’t need to fix anyone’s problems. You need to just show up,” Yvonne said. She talked about the importance of making end-of-life decisions while we’re still healthy. She strode back and forth across the room, making jokes, putting on funny hats, and shaking a tambourine to lighten the mood. After her presentation, we watched a video detailing the latest scientific research aimed at finding a cure for Huntington’s. Then, we had a chance to socialize.

Erin and her husband, Daniel, with Yvonne Heath, center. (Courtesy of Erin Paterson)

My husband and I met a couple with a young family like ours. We chatted with a woman whose husband is affected by Huntington’s and who organizes nature walks to raise funds. We met a retired couple who had recently moved to the area. I stood in that room, unafraid to say, “I have the gene that causes Huntington’s.” It felt good to be around people who didn’t try to placate me.

My gene status was simply a fact. I was happy to see representations of families living with Huntington’s that were different than my own, which wasn’t always positive. I saw a daughter supporting her mother, a husband and wife who still loved each other, and a young man who fondly remembered his grandmother.

It was nice to be in a place where Huntington’s wasn’t a secret or a word whispered with a tone of disgust. To be in the same room as a young mom who had the bravery to say, “I feel like Huntington’s was a gift. This is the life we have been given, so we are trying to live it the best we can.” I had been living by a similar sentiment since I encountered it in a book written by actor Michael J. Fox.

I didn’t feel as if I wanted to cry during the meeting. I felt included and supported, and as if I belonged.

In the past, I couldn’t attend those types of meetings because I found it too difficult to be around people with Huntington’s. I worried that I would find out information I was unprepared for. But after putting a lot of emotional work into accepting my diagnosis, I am ready now.

I want to be around people who understand because they have been through similar experiences. I am ready to learn more about Huntington’s and seek hope for my future. Learning to be more accepting of my diagnosis has allowed me to let down my guard and receive the support of the Huntington’s community that has always been there waiting for me. I am now ready to just show up.

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