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Living with a rare disease, by its nature, is isolating. According to the National Organization for Rare Disorders, a rare disease is one that affects fewer than 200,000 Americans. There are currently over 7,000 such diseases. I’ve lived with ANCA vasculitis, a subset of autoimmune diseases that affects…

When the world outside of your head becomes overwhelming and you need to cling to something for support, where do you find your center? With vasculitis, that world is an unfamiliar one. It’s full of new challenges, new details a patient is obligated to learn for their own…

“This isn’t the life that I planned, but it’s the life that I got,” an athlete friend of mine recently said as he sipped his latte. Now in his 70s, my friend was reflecting on a life he had worked hard for, but which wasn’t quite what he had imagined.

Those of you who have followed my column for at least a year might recall my annual January tradition, called Hibernation. I treat it as a mental and physical reset, and eagerly look forward to it after the bustle of the holiday season. I began Hibernating in 2016…

For many years, I lived with an anxiety-crippled brain from being a self-absorbed endurance athlete who had been diagnosed with granulomatosis with polyangiitis — a form of vasculitis — at a young age. That pain was almost a badge of honor. I had suffered more than most people…

Body image involves more than vanity. Though we often think of cosmetics and fitness as superficial, the reality is that they help us feel good about ourselves. We want to appeal to a mate, impress friends, and come off as professional to work colleagues. But everything about the physical body…

What do you do when life as you know it and as you’ve dreamed about ceases to exist? That was the question I had to answer at 21 years old. Six months before that late-evening “Are you sitting down?” call from two of my doctors, I would’ve never imagined that…

Sometimes the simplest things turn out to have an enormous impact. Vasculitis patients know the value in life’s beautiful details that others may take for granted, such as a stable routine, supportive friends, or a day of the week when our symptoms are quiet. Even though I’ve been…

Once you’ve lived many years with a disorder as stressful as vasculitis, it’s both harder and easier to endure routine medical procedures. A couple weeks ago, I encountered severe dental issues. I never had my wisdom teeth taken out as a young adult, and they were enacting their revenge.

You know the song. The obnoxious, catchy song that rings in your ears incessantly. “This is the song that doesn’t end, Yes, it goes on and on, my friend, Some people started singing it not knowing what it was, And they’ll continue singing it forever just because.” (Repeat…