Truth Be Told — Sarah Jones

When living with vasculitis, we patients often zero in on our specialists, and the list can feel endless: rheumatologists, pulmonologists, nephrologists, otolaryngologists, cardiologists, and more. But what sometimes gets lost in the shuffle is our primary care physician (PCP). As I’ve settled into a new city and searched for…

“Make new friends, but keep the old. One is silver and the other gold.” If you were ever in Girl Scouts, you probably just started humming that tune in your head. I know I did as I typed it out, and it brought back such warm memories. Last month, my…

I’m a big fan of talk therapy. Always have been. I believe an outside person can offer perspective, honesty, support, and the chance for real healing. I’ve joked for years that every baby should have a “therapy trust fund” so that when they’re ready, they have the means to seek…

“Energy is your capacity to keep moving forward.” — author, entrepreneur, and speaker Suneel Gupta For those of us living with a rare disease like ANCA vasculitis, this quote may resonate deeply. Energy, for us, is limited. It’s precious, often fleeting, and sometimes unpredictable. Yet the way we choose…

When people ask about your bucket list, you probably think about travel, adventure, or experiences you’ve always wanted to have. But here’s something you might not have considered adding to the list: getting a medical second opinion, especially if you’re living with a rare disease. I’ve found it incredibly helpful.

Warning: If you’re someone who avoids anger like the plague, you may want to sit down for this one. But stay with me — because research suggests that allowing yourself to feel anger might actually support your happiness. I know this advice might sound strange coming from someone who…

Have you ever felt like your brain just won’t cooperate? Like you’re wading through thick sludge trying to think clearly? You’re not imagining it, and you’re definitely not alone. As someone living with ANCA-associated vasculitis, I’ve heard multiple doctors say that brain fog isn’t part of this disease. But…

Living with ANCA vasculitis or any chronic disease can feel like an endless uphill climb. The symptoms, doctor appointments, medications, and unexpected flares can take a toll on the body, mind, and spirit. Some days it’s hard to stay hopeful, let alone cheerful. But even in the hardest moments,…

Living with chronic illness is a team effort. It’s not just the person with the diagnosis who lives with the disease; spouses, partners, children, and close friends all live with it too, in their own ways. With ANCA vasculitis, which I have, that truth becomes especially clear. The daily…

Today I find myself thinking back to four years ago, when I was diagnosed with eosinophilic granulomatosis with polyangiitis. My father had died the year before, and once a week I’d spend the night at my mom’s. In part, it got me out of the house, as I was…

I’ve been thinking a lot lately about the word “grace.” It’s a word that stirs something in me every time I hear it — something that gives me hope and reminds me to aim higher. Living with chronic illness has given this word even more weight for me. Grace…

I’ve been reflecting lately on just how important — and how hard — it is to build a care team that actually works for you. It sounds simple, but it’s not. And if you’ve ever had to start from scratch or find a new provider, you know how unsettling that…