The value of embracing vulnerability with Huntington’s
Society wants us to act heroic all the time, but that's just not reality
It’s been a hot summer so far, which isn’t the greatest weather for my wife, Jill, to deal with. She is gene-positive for Huntington’s disease, which causes her to have difficulty regulating her body temperature. But recently, a rainstorm was followed by a soft, summer breeze that cooled off the evening enough for us to sit on our porch. The low hum of the cicadas in the nearby woods made us feel like we were being serenaded by an orchestra.
At one point during the evening, Jill turned to me and said, “Being tough is just too hard some days. Can you remind me every once in a while that it’s OK not to be tough?”
This admission was a powerful reminder of the reality we face daily. Huntington’s is a relentlessly progressive neurodegenerative disease that’s been attacking Jill’s body and mind in incremental ways for some time now. Some days it feels as if we can manage her symptoms and find moments of joy. But on other days, I notice the progression, such as how slight, involuntary movements in her hands, called chorea, cause her to drop objects she’s holding.
Jill’s determination to fight Huntington’s makes her tough. But on that evening, her words were a testament to her strength in acknowledging her own limits.
Allowing ourselves grace
As her caregiver, I’ve made sure Jill knows how much I love her and that I’ll be there for her. But her request made me realize that sometimes the greatest support I can offer is simply reminding her that it’s OK to not be OK. It’s OK to have days when the weight of it all feels too heavy to bear.
It was a great lesson that fighting the disease doesn’t always look like a heroic battle. Sometimes it’s about taking a step back, acknowledging the struggle, and allowing ourselves the grace to rest and recharge.
Jill’s strength isn’t diminished by these moments of vulnerability. Instead, it’s amplified. She shows immense courage by admitting when she’s struggling, and that vulnerability is something to be honored, not hidden.
Her willingness to be less tough is a lesson for us all. In a world that often glorifies strength, there’s profound power in vulnerability. Admitting that some days are just too hard is not a sign of weakness, but of a resilient spirit. She reminded me that we aren’t defined by our toughest moments, but rather by how we continue to show up in spite of them.
As we continue this journey, I’ll be here to remind Jill that it’s OK to not always be tough. I’ll remind her that taking a break, asking for help, and allowing herself to feel the full spectrum of emotions are all part of this fight. And in those moments, we’ll find the strength to keep going, one day at a time.
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.
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