We all have different approaches to living with chronic illness

I’ve come to realize that there is no single way to live with a chronic illness like ANCA vasculitis. There are countless realities and processes people use to navigate such a life-altering diagnosis.

Some dive into research, anchoring themselves in science, facts, and clinical studies, finding comfort in the logic and structure that medicine offers. They consume every article, every statistic, and place their full trust in data.

Others take the opposite path. They look away, hoping the storm will pass if they just keep their eyes shut tightly enough. For them, the weight of understanding and constant engagement is simply too much, and they avoid treatment or even acknowledgment.

Then there are those who place their faith in something bigger: religion, spirituality, and prayer. For them, healing comes through surrender, trust, and belief in divine intervention.

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And then there are people like me — and perhaps many of you — who live somewhere in the middle. We learn, we go numb, we talk about it, we close in, we reach out. We balance knowledge with rest, hope with reality, connection with solitude. Even within this mixed approach, there are different flavors.

Some people in this group seek out only the inspiring stories — those tales of triumph that make us believe anything is possible. They’re moved by the Jimmy Chois of the world. (Choi, who lives with Parkinson’s disease, runs ultramarathons, has competed on “American Ninja Warrior,” and holds several fitness world records.) That’s how they find strength.

But me? I’m in the other camp.

Personally, I don’t need superheroes. I need real people. I’m inspired by those who wake up every day and just try. Those who tread water on the hard days, who look for slivers of joy in the midst of fear and fatigue. People who aren’t winning races but fighting invisible battles and still showing up. That’s the kind of courage that speaks to me. That’s where I live.

I don’t claim to know what’s best. The “right” way to cope is whatever feels authentic and helpful for you. What matters most is that it aligns with who you are.

In support groups, we sometimes talk about how to answer that dreaded question, “How are you?” It breaks my heart when I hear someone say, “I tell them I’m great because that’s what people want to hear,” right after they’ve opened up about a treatment failing or a new symptom that terrifies them.

I get it, I really do. But I’m trying something different: honesty. If someone can’t handle that, maybe they’re not ready to witness the grit, courage, and sheer stamina that we live with every single day.

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.