Truth Be Told - a Column by Sarah Jones

I was doing the thing I swore I wouldn’t do at 8 a.m. — scrolling through a support group message board before having my morning coffee — when a post stopped me cold. A woman named Beth wrote that the U.S. Department of Veterans Affairs (VA) had just decided her…

Our sweet cat, Sammie Cooper, died suddenly a few weeks ago. So this is a sad column, but it’s also an ode to a particular kind of care partner: the kind with fur. She came to us 13 years ago from a shelter in Tucson, Arizona. We figured she was…

Living with ANCA-associated vasculitis forces us to redefine a lot of things, including our energy, our expectations, and our sense of normal. But one of the most important and sometimes overlooked things we have to redefine is what we consider “good enough.” Because when it comes to our health…

At a recent medical conference, a concept came up that’s worth unpacking for anyone navigating ANCA-associated vasculitis: minimal symptom expression, or MSE. It was presented as a way clinicians assess whether a disease is controlled or in remission. On the surface, it sounds promising — who wouldn’t want…

Note: This column describes the author’s own experiences with, or observations of, several medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I have eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA-associated vasculitis (AAV) that is not indicated…

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…