Discovering how to move forward, even with limited energy
Capacity often looks different for those of us with ANCA vasculitis
“Energy is your capacity to keep moving forward.” — author, entrepreneur, and speaker Suneel Gupta
For those of us living with a rare disease like ANCA vasculitis, this quote may resonate deeply. Energy, for us, is limited. It’s precious, often fleeting, and sometimes unpredictable. Yet the way we choose to use it — and the grace we give ourselves when it runs low — can define not just our days, but the quality of our lives.
A few weeks ago, I had the privilege of representing the Eosinophilic & Rare Disease Cooperative at the Amgen Advocacy Summit, a gathering of advocates from nearly 90 organizations representing thousands of diseases. It was a fantastic space filled with passion, purpose, and people working tirelessly for the communities they serve.
Among these advocates were representatives from Amgen, which holds the rights to Tavneos (avacopan) in the U.S., where it’s approved to treat severe and active microscopic polyangiitis and granulomatosis with polyangiitis.
Yet even in such an inspiring environment, I was reminded of and humbled by my own limits. Living with eosinophilic granulomatosis with polyangiitis means that my energy comes in short bursts. At this meeting, I suspect I was the only person who needed to rest at least every two hours in order to keep going. There was no shame in it (though, truth be told, I’m still working through feelings of embarrassment); it was just my reality.
I often feel like I’m wearing a flashing light that announces, “ALERT: disabled human with a systemic disease.” But I knew I couldn’t simply “push through” without facing consequences of severe fatigue, brain fog, endless days of cognitive challenges, and a flare-up.
Moving forward — at my own pace
Gupta’s words helped me reframe that experience. Having “the capacity to keep moving forward” doesn’t mean we have to move fast or match someone else’s pace. It doesn’t mean powering through at all costs. It means finding a way to keep going — even if our “forward” looks like a slower walk, a shorter day, or a pause to recharge.
From left, Sarah Jones poses for a photo with Katelyn Snider and Lisa Schill from Amgen. (Courtesy of Sarah Jones)
One of the quiet truths about living with a rare disease is that there’s often a silent battle between what we want to do and what our bodies will allow. We don’t just budget our time — we budget our energy, including our cognitive energy. That can be isolating and create grief, especially when others around us seem to have reserves we can’t match.
But here’s the thing I’m still learning: Energy is not a competition. Those of us who have always been type A and had endless energy, competence, and capacity may find this hard to accept. For us, moving forward can mean showing up in the ways that matter most, then resting without guilt. It can mean making space for both advocacy and recovery. It can mean recognizing that saying “yes” to our health sometimes requires saying “no” to the pace of our world.
This summit left me inspired by what our community can accomplish when we come together — and equally inspired by the reminder that we each bring what we can, in the ways we can. I know my contribution wasn’t diminished by the hours I spent in a quiet room regaining strength. If anything, those rests gave me the clarity and focus to be truly present when it mattered.
From left, Sarah Jones smiles with Emily Sybrant from the Vasculitis Foundation. (Courtesy of Sarah Jones)
To my fellow patients and the care partners who live this, too: You are not alone if your body demands a different rhythm. You’re not weak for resting or for honoring your limits. You’re practicing the kind of self-awareness that keeps you in the fight — not just today, but for the long road ahead.
Energy is capacity, yes — but capacity looks different for each of us, and even for the same person from day to day or hour to hour. The goal is not to push until we break, but to move forward in a way that sustains us. That might mean advancing in inches instead of miles. But those inches add up.
So let’s keep moving — at our pace, with our needs, in our way. That’s not just survival. That’s strength.
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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