Using the spoon theory to manage my energy with chronic illness

Many of us living with ANCA-associated vasculitis become familiar at some point with the “spoon theory.” It’s a simple yet powerful way to understand energy as a limited resource — something we have to consciously budget throughout the day. For many of us, discovering this framework shortly after a diagnosis can feel like being handed a language for something we were already experiencing but didn’t yet know how to explain.

Created by blogger Christine Miserandino, the spoon theory helps us understand why everyday activities — things that once felt automatic — now require planning, intention, and trade-offs. It gives us permission to recognize that our energy is not unlimited, and more importantly, that it doesn’t have to be spent without thought.

When we begin to see energy as finite, our decision-making often shifts. We may find ourselves asking different questions: Is this worth the energy it will cost? What do we want to save our energy for? What actually matters most today?

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Take something as routine as grocery shopping. For many of us, it used to be a normal part of life — maybe even something we enjoyed. But with vasculitis, even that can come at a high cost. Grocery shopping isn’t just walking through aisles. It’s the physical effort of moving through the store, the mental effort of planning and choosing, and the emotional effort of navigating a public space when we may already feel depleted.

On a relatively good day, it might cost a couple of “spoons.” On a harder day, especially if breathing is more difficult or fatigue is heavier, it can take significantly more. And that’s where the reality of living with a systemic condition becomes clear: Every decision carries a trade-off.

If we spend that energy at the grocery store, we may not have enough left to cook a meal, connect with someone we care about, keep up with household tasks, or simply get through the rest of the day with some sense of stability. Even positive, meaningful activities require energy. There is no “free” effort anymore.

Recognizing this isn’t about limitation; it’s about intention.

Choosing how we spend our energy

For many of us, this leads to practical shifts that make a real difference. Something like ordering groceries for pickup or delivery can become more than a convenience; it can feel life-giving. It allows us to preserve energy for the things that matter most to us. Interestingly, one unexpected outcome of the COVID-19 era was the expansion of these types of services, and for people with chronic illness, this has been a meaningful and lasting benefit.

The same kind of internal shift can happen around tools like accessible parking placards. Many of us qualify for them, and many of us genuinely need them — especially on days when shortness of breath, fatigue, or pain are more present. And yet, it’s not uncommon to feel hesitation or even self-judgment about using them.

We may question whether we are “sick enough.” We may compare ourselves to others. We may carry old expectations from a time when our energy felt more reliable and abundant.

But the spoon theory reminds us of something essential: Our energy is precious.

Using a disability placard isn’t about taking something we don’t deserve; it’s about conserving energy so we can continue to function and participate in our lives. It’s not a failure. It’s a strategic, thoughtful decision that supports our well-being.

When we begin to see our choices through this lens, something subtle but important can change. Instead of judging ourselves for what we can’t do, we can start to respect the decisions we make to protect what energy we do have.

Living with vasculitis means that, in many ways, everything matters more. Every outing, every task, every commitment requires consideration. That can feel overwhelming at times, but it can also lead to a deeper sense of clarity about what we truly value.

We may begin to prioritize differently. We may choose connection over obligation, rest over expectation, presence over productivity. And while those choices are often shaped by necessity, they can also become a form of self-respect.

There is no perfect way to manage energy with a chronic illness. Some days will still feel unpredictable. Some decisions will feel harder than others. But frameworks like the spoon theory can help us move through those decisions with greater awareness and less self-judgment.

At the end of the day, this isn’t just about managing energy; it’s about protecting our ability to live our lives in the ways that matter most to us.

And that is not something to feel guilty about. It’s something to honor.

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.