My gene-positive wife hopes to win a gold medal in vulnerability
It may be easier to say 'I'm fine,' but we know it could be counterproductive
I’ve always loved watching the Olympics. Seeing athletes in dazzling form and fierce competition compels my attention, and the 2024 Summer Olympics in Paris was no different.
Little did I know that watching one event would lead my wife, Jill, and I to have a profound conversation about honesty, vulnerability, and living with Huntington’s disease (HD).
As Jill and I watched Olympic footage together, I commented on Simone Biles’ remarkable performance for the U.S. gymnastics team. Jill’s eyes lit up, and I asked her what she admired most about Biles.
“Everything,” she said. “But what really stands out is her decision to prioritize her mental health during the previous Olympics, despite facing potential backlash.”
As we discussed Biles’ courageous choice, we realized how difficult it is for most people to put their well-being first, especially under immense pressure. Biles had done something quite admirable: She acknowledged her mental health issues openly and showed that it’s possible to balance ambition with self-care.
“Simone proved that it’s OK not to be OK,” said Jill, who is gene-positive for HD. “She showed how important it is to seek professional help and that dreams are achievable, but not at the expense of our health.”
We agreed that, when public figures speak about their struggles, it creates a ripple effect, making it easier for others facing similar challenges to feel less alone and more hopeful.
“That’s why we write our weekly column, right?” I said, smiling. “We want to create a sense of community for people dealing with HD, to help them feel understood and supported.”
Are you fine, really?
That led me to gently broach a subject I’d been contemplating. “Jill,” I said, “I’ve noticed that whenever someone asks how you’re doing, you always reply with ‘I’m fine.'”
Sometimes, however, she’s not fine. Sometimes she struggles with anxiety or depression or worry or feeling overwhelmed or finding the right words.
“Have you thought about that? That you’re not fine at times?” I asked her.
Jill paused. She acknowledged that showing her vulnerability is incredibly difficult, especially when she’s struggling. We’ve talked about it before, and she’s getting better about being vulnerable with me, but not yet with others, including friends or family.
I took her hand, saying, “I understand, and I want you to know that I’ll love and support you whether you feel able to open up or not. But I think it could be beneficial for you to share your true feelings more often.”
Jill nodded, agreeing to work on being more open about her experiences until Huntington’s progresses to a point where it becomes challenging for her to articulate her struggles.
As we sat there, I realized that our conversation had come full circle. From discussing an Olympic champion’s bravery in prioritizing her mental health to examining our own challenges with Jill’s rare and terminal illness, we had reinforced the importance of honesty, both with ourselves and with others. It’s a journey we’re on together, taking it one day at a time, inspired by those who have the courage to say “I’m not OK” when they aren’t.
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.
About the Author
Carol Perrott
Wonderful advice for everyone