Now that I’m healthier, I better see what vasculitis has taught me

As I approach the 15-year anniversary of my vasculitis diagnosis, I’ve started to contemplate the lessons that battling this disease has taught me. There are many, though some stand out.

As an athletics coach, I’m always looking for ways to learn from experiences. My own coach for my decade-plus as a professional athlete used to say that something’s only a failure if you fail to learn from it. While I wouldn’t call getting diagnosed with a rare disease a failure, it’s an experience that you can learn from — if you’re healthy enough to listen.

Maybe it’s age (I just turned 36), or maybe it’s that I’ve been in remission for almost five years, but I’ve now been afforded the mental and physical health to start to heal from so much of the trauma associated with living with a rare disease. With four vasculitis battles in the first 10 years of my illness, it was hard to catch my breath. I had some incredible highs and some disturbing lows. The polarization of my life was extreme. There really was no stability at all.

When my health was good, I never felt like I was truly on stable ground. What’s so wild is, there were times I thought I was happy or stable. Looking back now, I can almost feel my body vibrating from the stress of it all. It’s scary.

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Much of that stress was self-induced. After being diagnosed with vasculitis at 21 years old, I should’ve given up on my dreams of becoming a world-class runner. But I didn’t let the prognosis intimidate me. For reasons that I truly can’t understand, even now, I don’t know why I refused to walk away. Was it not stressful enough to battle for my life?

I was hellbent on accomplishing some of my childhood dreams as a professional distance runner, and I never once stopped to smell the roses of good health, to enjoy one moment of it.

For all the amazing highs I had during that time, you couldn’t pay me a million dollars to go back and relive any of my experiences from those 10 years. I wouldn’t even want to relive what was perhaps the best moment of my athletic career — competing at the U.S. Olympic Trials in 2016 — because it would mean time in my anxiety-crippled brain. How sad is that?

Before I got diagnosed, I was already an anxious and reckless person, but the fear of leaving this world early drove me to live even harder. Now I’m settling down and realizing that none of these accomplishments or traumas truly define who I am. I can’t let them dictate my happiness.

I wish I’d been capable of learning this lesson much earlier. It would’ve saved me a lot of trauma. But that’s not how life works for most of us, is it? As much as I want to say “Learn from my mistakes,” we all have to make our own. One of the worst things you can do is fail to learn from them.

That’s why accountability is so important. If I could impart one lesson that’s helped me more than any therapy session or self-help book, it’d be this: Find the people in your life who hold you accountable to yourself. Treasure them. Love them. Listen to them. If you have more than one, even better. Their critical feedback can provide you with the tools to make your life more fulfilling.

Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.