Truth Be Told — Sarah Jones

Sarah Jones, MPA, MS has 25+ years of experience leading non-profits and health care programs. She has designed programs and led trainings for local, national, and international audiences. She holds two Masters degrees: Masters of Science in Strategic Design Management from Parsons the New School and a Masters in Public Administration (healthcare).

Her life irrevocably changed when diagnosed with EGPA, eosinophilic granulomatosis with polyangiitis. Sarah and her wife bring their shared passion to improving access to treatments, care and provide Hospital Emergency Advocacy & Training kits for rare disease through their nonprofit – Eosinophilic & Rare Disease Cooperative.

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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.

Sarah Jones

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Redefining intimacy in life with chronic illness

For many of us living with ANCA-associated vasculitis — or supporting a partner who is — intimacy may not be at the top of our daily priorities, which is understandable. When we are managing symptoms, medications, appointments, and the sheer effort it takes to get through the day, connection…

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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…

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Even with ANCA vasculitis, we can be awe-struck by our own bodies

Living with ANCA-associated vasculitis often feels like a constant negotiation with our own bodies. Some days, our bodies are unpredictable, unreliable, or even working against us. Pain, fatigue, breathing challenges, and mobility changes make it difficult to feel at home in our own skin. But sometimes, during quieter moments,…

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The importance of rest in managing vasculitis-related fatigue

We need to talk about fatigue again. After my recent column about the different types of fatigue, I heard from many of you through comments, emails, and shared personal journeys, all saying the same thing: This part is hard. And it doesn’t get talked about enough. I wish I…

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Grieving the loss of retirement after going out on disability

Sometimes the hardest losses with ANCA-associated vasculitis aren’t the ones anyone can see. Recently, my brother-in-law finished his last day of work. He’s stepping into retirement, a milestone marked by celebration, reflection, and the promise of something new. I am genuinely happy for him. But alongside that happiness sits…

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Acceptance is an ongoing practice in life with chronic illness

If you live with ANCA vasculitis, you’ve probably heard the word “acceptance” more than once. It’s a word that can feel loaded and even frustrating. When people suggest acceptance, it can sound like they’re asking us to like what has happened, to stop fighting, or to quietly surrender to…

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Understanding the different types of fatigue that come with vasculitis

In our ANCA vasculitis community, the real F-word is fatigue. And I need to say something about it plainly: What we experience is definitely not the tiredness that healthy people know. Fatigue in vasculitis is not just sleepiness. It is not the grogginess after a bad night’s sleep…

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When talking with patients, we should use language that creates connection

In the world of rare disease and chronic illness advocacy, certain phrases catch on quickly. They appear in research papers, nonprofit materials, conference presentations, and patient engagement efforts. One phrase I hear constantly is “lived experience.” To be honest, I’ve never liked it. This may sound like a small thing.

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I often can’t breathe automatically due to lung issues and AAV

Before ANCA-associated vasculitis (AAV), I never gave breathing a second thought. It was automatic, like blinking or walking across a room. Then came a day when I walked from my bedroom to the kitchen and couldn’t breathe. There were actually many days like this, but I will never forget…

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Let’s do away with pity parties and start practicing self-compassion

If I could erase one term from the vocabulary of people affected by chronic or rare diseases like ANCA vasculitis, it would be “pity party,” closely followed by “sorry for myself.” Those words are cruel. Not dramatic. Not motivating. Cruel. When we say them to ourselves, we’re not being…


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