Truth Be Told — Sarah Jones

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.

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…

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…

Some of the best things I’ve learned about living with ANCA vasculitis didn’t come from a journal article, a conference slide deck, or even a clinic visit. They came from you. From conversations. From comments. From private, patient-focused Facebook groups — messages that started with, “Does anyone else …”…

By the time this column is published, I’ll be a couple of weeks into recovering from a hip replacement. I am writing it in advance because I’m fairly certain I won’t have the wherewithal to write coherently after the surgery. I never imagined I’d need a hip replacement at this…

Valentine’s Day usually comes with a lot of noise. Flowers. Chocolate. Big romantic gestures. All of that is fine, but I want to offer a slightly different Valentine’s idea: one that feels especially right for those of us living with ANCA vasculitis. This year, let’s send valentines to the…

A hip replacement is not as “simple” as some people might portray it. As many of you know, I recently had a total hip replacement. Before the surgery, people kept saying things like, “Oh, those are easy!” or “My neighbor was walking in a week!” And every time, I…

Living with a chronic illness like ANCA vasculitis teaches us many things, often lessons we never asked to learn. One of the most powerful lessons I’ve discovered is the importance of holding on loosely — to the good days, the tough days, and everything in between. When I grip…

Recently, I was talking with friends about navigating life after an accident that left one of them with post-concussive syndrome. Both are, without question, among the smartest people I know — and I’m not being effusive. Yet that single event transformed their lives in ways that feel profoundly familiar to…

As I’ve been sharing, I’m preparing for a hip replacement. And, as is often the case with ANCA vasculitis, nothing about this process has been simple or straightforward. After a thoughtful and thorough conversation with the pre-surgery team, we made the decision to move my surgery back. Why should…