Columns

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.

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…