Living with ANCA-associated vasculitis changes the way we understand rest
Rest isn’t optional, yet many of us struggle with it. Here's why.
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Before our diagnoses, many of us in the chronic illness world might’ve thought rest simply meant sleep — perhaps a good night in bed or a quiet day on the couch. But living with a chronic, systemic disease teaches us something very different: We can sleep for eight hours and still wake up exhausted. That’s not a failure. It’s information.
What we eventually learn, often the hard way, is that rest is not one thing. It’s many things.
According to the American Psychological Association, there are actually seven different types of rest: physical, mental, emotional, social, sensory, creative, and spiritual. Each one restores a different part of us, and if we’re depleted in even one area, we can still feel completely drained.
For those of us living with ANCA-associated vasculitis, this framework can be incredibly validating. It explains why simply “getting more sleep” doesn’t always fix the fatigue. Our exhaustion isn’t just physical — it’s layered.
When we’re managing a condition like vasculitis, our bodies are constantly working harder than they used to. Our immune systems, medications, inflammation, and symptoms all demand energy — often behind the scenes. That means rest isn’t optional. It’s essential. And yet, many of us struggle with it.
We may feel guilty for needing more rest than we used to. We may compare ourselves to our past selves — or to others. We may push through exhaustion, thinking we should be able to do more. But here’s the truth: Without rest, our systems stay under strain.
As one psychologist put it, without adequate rest, we’re like “elastic bands stretched almost all the way to capacity.” For us, that stretch can lead to flares, setbacks, or simply deeper exhaustion that takes longer to recover from. Rest, then, becomes protective.
Understanding the types of rest (through a vasculitis lens)
What makes this concept powerful is that it helps us identify what kind of rest we actually need.
- Physical rest is the one we know best: sleep, naps, and sometimes gentle movement like stretching or walking. But even here, it’s not just about stopping. It’s about recovery.
- Mental rest becomes critical when we’re managing appointments, medications, and constant decision-making. That brain fatigue is real.
- Emotional rest matters when we’re carrying fear, uncertainty, or the weight of a long personal journey with illness. It’s the ability to be honest about how we feel without filtering or minimizing.
- Sensory rest is something many of us don’t think about, but hospital environments, screens, noise, and constant stimulation can overwhelm our systems.
- Social rest reminds us that not all interactions give us energy. Some take it.
- Creative rest might sound less relevant, but it’s about experiencing beauty, inspiration, or simply stepping out of problem-solving mode.
- Spiritual rest is about meaning — feeling connected to something bigger, whether it’s community, purpose, or faith.
When we start to look at our fatigue this way, something shifts. Instead of blaming ourselves, we can get curious: What kind of rest am I actually missing right now?
Research on “deep rest” reinforces something many of us already know intuitively: When we truly rest — when our bodies and nervous systems are allowed to slow down — healing processes are supported, stress decreases, and our systems can begin to reset.
Deep rest isn’t just inactivity. It’s intentional. It might look like:
- Letting our body fully relax instead of pushing through
- Taking breaks before we crash
- Allowing ourselves to disengage mentally, not just physically
- Creating moments of quiet so our system can settle
For those of us with vasculitis, deep rest can mean the difference between constantly reacting to symptoms and creating space for recovery.
One of the hardest parts of this journey is redefining what “a good day” looks like. For many of us, a good day used to mean productivity: getting things done, checking boxes, keeping up. For me, it means:
- Resting when I need to
- Not pushing past my limits and listening
- Managing energy for something meaningful
That’s not giving up. That’s adapting. It is a kind of acceptance that helps build sanity and sustainability. And in many ways, it’s a deeper form of strength.
Living with vasculitis requires constant adjustment. But one of the most powerful shifts we can make is how we view rest — not as weakness or laziness, but as respect.
When I stop to listen, I begin to understand the different ways I can truly rest. I’m not just managing fatigue. Rest is respect.
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.
Vinod Sagar
My granddaughter passed away due to lungs infection by GPA(vescullits)
Anthony Smith
The article on rest hits very closely to home. My wife, Sue, was diagnosed with AAV, subtype GPA three years ago while we were in Florida. She receives Rituxan every 6 months now which helps her to remain in remission. Her rest factor has been the greatest change since diagnosis and this article emphasizes the importance of getting rest when needed. Thank you for a much needed review of the value of rest.
Rosie
I have been struggling with the fact that I don’t get to do things at home like before.
The information above helped me very much. Thank you