Truth Be Told - a Column by Sarah Jones

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…

We all have things we don’t talk about with our doctors. The reasons are endless. Sometimes we feel rushed and don’t think there’s enough time to share everything. Sometimes we’re unsure whether what we’re experiencing is even relevant. Other times, it just feels too personal, too private, or too painful…

Note: This column describes the author’s own experiences with Fasenra (benralizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Are you on Instagram? I’ll admit it — my wife and I can’t stop watching those silly little dances. Our favorite?…

No one teaches you how to be sick. There is no handbook for how to gracefully give up what you once perceived as power over your life and body in order to find peace with a chronic disease like ANCA vasculitis. The world does not reward people who need…

As I look back on Vasculitis Awareness Month in May, I find myself grappling with a complex wave of emotions. On one hand, there’s undeniable excitement and a spark of validation. For once, the spotlight is on our disease, which usually lurks in the shadows. ANCA-associated vasculitis is a…

Spoiler alert: I think, in the end, only the person living with a chronic disease can soothe themselves. The other day, my wife, Pam, and I had one of our car conversations. You know the kind — where the road ahead somehow makes it easier to see things clearly. Sometimes…

I’ve come to realize that there is no single way to live with a chronic illness like ANCA vasculitis. There are countless realities and processes people use to navigate such a life-altering diagnosis. Some dive into research, anchoring themselves in science, facts, and clinical studies, finding comfort in…

Sometimes I think back to when I first got sick and realized that not only was my chronic illness not going away, but I could no longer do my job. I was running a large nonprofit serving people with Parkinson’s disease and other movement disorders. I loved it. We…