The value of accepting vulnerability in Huntington’s

It’s been a hot summer so far, and that’s not exactly the best weather for my wife Jill. She’s positive for Huntington’s disease, which causes her to have trouble regulating her body temperature. But recently, a rain shower was followed by a gentle summer breeze that cooled the evening enough for us to sit on our porch. The soft chirping of cicadas in the nearby woods made us feel like we were being serenaded by an orchestra.

At some point during the evening, Jill turned to me and said, “Some days, it’s just too hard to be tough. Can you remind me every now and then that it’s okay not to be tough?”

This admission was a stark reminder of the reality we face every day. Huntington’s is an inexorably progressive neurodegenerative disease that has been gradually attacking Jill’s body and mind for some time. Some days it seems like we can manage her symptoms and find moments of joy. But other days I notice the progression, such as when she drops objects she is holding due to slight, involuntary movements of her hands (called chorea).

Jill’s determination to fight Huntington’s disease makes her tough, but that night her words were a testament to how strong she was when she recognized her own limitations.

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Granting 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 has made me realize that sometimes the greatest support I can offer her is to simply remind her that it’s OK if she’s not feeling well. It’s OK to have days when the burden of it all seems too heavy.

It was a great lesson that battling the disease doesn’t always look like a heroic fight. Sometimes it’s about taking a step back, acknowledging the struggle, and allowing ourselves the grace to rest and recharge.

Jill’s strength is not diminished by these moments of vulnerability. In fact, it is enhanced. She shows tremendous courage by admitting when she is feeling bad and that vulnerability is something to be respected, not hidden.

Her willingness to be less harsh is a lesson for all of us. In a world that often glorifies strength, there is profound power in vulnerability. Admitting that some days are just too hard is not a sign of weakness, but of resilience. She reminded me that we are not defined by our toughest moments, but rather by how we carry on despite them.

As we continue this journey, I will remind Jill that it’s OK to not always be tough. I will remind her that taking a break, asking for help, and allowing yourself to feel the full spectrum of emotions is part of this struggle. And in those moments, we will find the strength to keep going, one day at a time.

Note: Huntington’s Disease News is purely a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not a substitute for professional medical advice, diagnosis or treatment. Always consult your physician or other qualified health provider with any questions you may have about 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 stimulate discussion about issues related to Huntington’s disease.