I’m Learning That It’s OK to Be OK, Even With Vasculitis

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 could imagine and I was proud of it.

While the nightmare situations rare disease patients face truly take a toll on our mental well-being, after more than 14 years of suffering, I think I’m doing OK.

Last October, I celebrated four years of remission. That’s the longest period of remission I’ve experienced since I was diagnosed in 2008.

As I approached the anniversary last fall, I desperately tried not to think about it, mainly out of fear. I worried that giving the milestone any power would cause the universe to somehow spite me. But as the day came and went, and my body didn’t rebel against me, I slowly started to believe that I would be OK.

At times, I never thought a life like this would actually be possible. Even after four years of remission, not a day goes by when vasculitis isn’t involved. But for the first time in almost 15 years, I feel like my disease doesn’t define me.

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What’s changed?

It’s not like I’ve been able to live a completely different life during this period of remission. But why does it feel so different from my life pre-diagnosis? That’s something I’ve been pondering a lot. Why couldn’t I have some of this peace when I was younger and so desperately needed it?

No stretch of time is identical to the last. My life has changed — and it’s not just that I grunt when I get off the couch now.

My ego wants me to say it’s all the work I’ve done on my mental health. My heart wants to say it’s my relationship with my partner, Ryanna. Common sense says it’s the connections that I’ve made with so many other vasculitis and rare disease patients around the world through my work with Vasculitis Foundation and our Victory Over Vasculitis campaign. My body wants to say it’s because I’ve hung up my track shoes and stopped chasing my childhood dream of Olympic glory. My soul says it’s because I’ve found a passion for helping people chase their running and fitness dreams with my coaching business.

The reality is that each of these things has made my life immensely larger and more fulfilling. For 13 years after my diagnosis, my life was totally about me. I was consumed by my goals, my feelings, and my health.

When you’re that self-absorbed, life can be miserable. I have no one to blame but myself. I experienced many great moments that I was barely able to enjoy, and many dark moments when I didn’t know if I was going to make it. There were times when I didn’t even want to make it.

Events that should have been celebrations became mere reliefs, and that hurts. For all the cool things I’ve accomplished, such as breaking the four-minute mile barrier and racing at the U.S. Olympic trials, I can’t help but think about all the awful moments it took to get there. Who does that?

So what’s the difference now? Life has gotten much fuller. It didn’t happen all at once. It can’t. But I’ve slowly opened myself up to the world and embraced more than just myself.

Yes, I’ve had some awful things happen in my life. Chances are, if you’re reading this, you have, too. For a while, I felt guilty when people asked me how I was doing and I could answer, “Well. Really well.” But what I realized is that I’ve been through too many tough times to let those experiences keep me from enjoying whatever life I have left. Because, as rare disease patients know, all of this could end very abruptly, so we better get busy living.

Cheers to filling up life with more people and experiences that make it worth living.

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.