The art of listening to my body with ANCA-associated vasculitis

Listening to our bodies sounds simple, almost obvious. It’s the kind of advice we hear all the time: “Just listen to your body!” But for those of us living with ANCA-associated vasculitis, it’s not always that straightforward. In fact, sometimes it’s one of the hardest things we can do.

When we slow down enough to really listen, we don’t just hear what’s working — we also hear what’s not. We’re reminded of the things that don’t function like they used to, the things that have changed, and the things that, in some cases, will never return to what they once were.

For me, that often shows up in my breathing. When I’m really connected to my body, I’m aware that my breathing is different now. It’s not as easy, automatic, or reliable as it was before I got sick. The damage to my lungs has changed my breath in a lasting way. That’s not something I can think my way out of or push past. It’s real. And, honestly, there are times when I’d rather not feel that.

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There are moments when it’s easier to stay distracted, push forward, and focus on getting through the day without tuning in too closely. Because tuning in means acknowledging loss. It means facing the reality that my body has been changed by this disease. That’s a hard thing to sit with.

But at the same time, I’ve learned that avoiding that awareness comes with its own cost. When I’m not listening, I miss the early signals. I miss the subtle shift in my breathing that tells me something is off. I miss the quiet warning signs that my body is giving me — signals that, if caught early, I can respond to. I can rest, adjust, and reach out if needed.

When I ignore those signals, things have a way of escalating.

The importance of paying attention

Listening, then, becomes less about reflection and more about protection. It’s not about sitting in everything that’s wrong. It’s about staying connected enough to notice what’s changing in real time.

There’s a difference between judging what we feel and simply noticing it. When I am judging myself, I hear: “This shouldn’t be happening. I should be able to do more. Why is my body like this?”

But when I am noticing, I hear: “My breathing feels a little tighter today. I’m more fatigued than usual. Something feels different.”

One leads to frustration and disconnection, while the other creates space for response. For those of us living with vasculitis, that space matters, because this is a condition that can shift quickly and without notice. Symptoms can evolve, energy can drop, and systems can become strained. The earlier we notice those shifts, the more options we have.

Listening to our bodies doesn’t mean we like what we hear. It doesn’t mean we’ve accepted everything. I think that will be a lifelong process. It just means we are paying attention, which allows us to care for ourselves more intentionally.

Sometimes that means resting earlier than we planned, even if we don’t want to. Sometimes it means changing our plans in the middle of the day. Sometimes it means acknowledging that today is not the day to push through. Other times, it might simply mean taking a moment to pause and check in.

It helps me when I ask: “How am I actually feeling right now?” It’s not how I think I should feel and not how I want to feel, but what’s actually happening. Over time, I’ve found this practice can start to feel less like a confrontation and more like a conversation with a body that, despite everything, is still working for me, for us. Even when parts of it have been damaged, even when it doesn’t function the way it once did, I am grateful my body is still communicating.

This is not a perfect practice. I certainly don’t always listen. There are days when I disconnect, push too far, or realize too late that I needed something different.

Even though listening sometimes reminds me of what I’ve lost, it helps me protect what I still have. It helps me catch changes in my breathing before they spiral. It helps me stay a step closer to stability. It gives me a way to work with my body instead of constantly feeling like I’m reacting to it.

And with a condition as complex and unpredictable as vasculitis, that kind of awareness can make a real difference.

So, while listening to our bodies isn’t always easy, it is still worth it — not because it’s comfortable, but because it keeps us connected. And that connection helps us care for ourselves in ways that truly matter.

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.