Truth Be Told — Sarah Jones

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…

What is it with us humans? It is a curious phenomenon that we generally deem situations, interactions, gifts, successes, or help from others as valuable only if they’re epic — dismissing the baby steps, small successes, and brief connections as if they’re not substantial enough to warrant celebration. Sometimes we’re…

We’ve all heard the phrase “what a difference a day makes.” That couldn’t be more accurate for someone with vasculitis or any other chronic disease. Some days can feel as if they last for weeks or months, or never seem to end. Other days fly by in a minute. For…

It’s hard not to compare ourselves with other people living with ANCA vasculitis who have benefited from medications and treatments. Comparing is human nature — and the cause of much suffering. It’s particularly hard when we’re experiencing a flare or side effects of our tough medication regimens. Seeing people…

This February marked four years since the day my world — our world — changed forever. For the previous 11 months, my wife, Pam Squires, and I had been stuck in a relentless loop, a medical maze with no clear answers. Fifty-seven different trips to the hospital or doctor’s office.