Living with chronic illness has taught me to hold on loosely
Like the weather, both calm and stormy days will pass
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Living with a chronic illness like ANCA vasculitis teaches us many things, often lessons we never asked to learn. One of the most powerful lessons I’ve discovered is the importance of holding on loosely — to the good days, the tough days, and everything in between.
When I grip too tightly, trying to control every twist of this disease, I feel myself being dragged by each unexpected flare or sudden drop in energy. When I try to cling to the moments that I feel OK, I end up fearing their loss instead of enjoying them.
But when I practice holding on loosely, something shifts. The emotional yanking eases. The ups and downs still come, but they don’t knock me over with the same force. I find myself more grounded, more present, and a little gentler with myself.
About a year into this journey, when my partner, Pam, and I were still figuring out how to coexist with this sudden, unwelcome, and permanent visitor called vasculitis, we picked up a book that changed the way we approached chronic illness: “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers” by Toni Bernhard.
I’m not Buddhist, and you don’t have to be for the book to resonate. It’s full of gems — small insights that make you feel less alone, more understood, and more equipped to face the emotional side of chronic illness. Bernhard herself became sick suddenly, and the way she navigated her own losses and constant change will feel familiar to those of us living with ANCA vasculitis. She leaned on her years of Buddhist study to create tools and practices that help people weather the storms of illness.
The ‘weather practice’
One of those tools has stayed with me, and I think about it often. She calls it the “weather practice.” Here’s how Bernhard described it in a 2012 interview for The Self-Compassion Project blog:
“I use this as a metaphor for life. It helps me hold painful physical symptoms and blue moods more lightly. I can’t predict when they’ll arise but I know for sure that they’re just blowing through, like the wind. It makes it easier to wait them out. It applies to what happened yesterday when I suddenly got that ‘sick of being sick’ feeling. I wasn’t expecting it to descend on me but it did. So I let it be there, knowing that it was an arising and passing mood. Sometimes, I do something particularly nice for myself — put on a movie — until the mood passes.”
This practice has shaped the way I face bad days, big emotions, and even moments of fear. When a flare shows up without warning or a wave of frustration washes over me, I try to remind myself: This is weather. It will pass.
Some days, the weather is calm — warm light, steady energy, maybe even a moment where I almost forget about vasculitis for a little while. And on those days, I try to hold on loosely, too. Instead of gripping tightly, afraid it will disappear, I try to enjoy it for what it is: a patch of good weather, a break in the storm.
Other days feel stormy: Fatigue settles in suddenly, joint pain flares, or I find myself facing a new treatment with fear sitting heavy on my chest. On those days, I return to the weather practice. I tell myself that this wind, too, is temporary. I don’t have to fight it, judge it, or panic because it arrived. I can let it blow through me, knowing it has an end.
Holding on loosely doesn’t mean giving up. It doesn’t mean pretending everything is OK. It means allowing ourselves to move with the reality of living with vasculitis instead of bracing against it every second. It means giving ourselves permission to feel what we feel, without letting those feelings define the entire day or the entire journey.
Most importantly, it means remembering that every emotional forecast eventually changes. No storm lasts forever. No streak of calm does, either. But both are part of living, and part of learning to live with a disease that asks so much from us.
So if today is a hard day — if you’re scared, exhausted, frustrated, or overwhelmed — try reminding yourself: This is weather. It will pass. And when a good day comes, breathe it in, enjoy it, and let it be what it is without gripping too tightly.
We can’t control the weather, but we can learn to move through it with a little more gentleness, presence, and grace.
Note: ANCA Vasculitis 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 ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.
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