Truth Be Told — Sarah Jones

If you’ve been living with ANCA-associated vasculitis (AAV), irrespective of the type, you’ve probably felt both sides of hope: the side that feels good, and the frustrating side when treatments don’t quite get you where you want to be. Today, I want to focus on the hope of new…

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.

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…

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…

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…

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,…

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…

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…

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…

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…

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.