A vasculitis diagnosis changed my life, but it doesn’t define me

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by BNS Staff |

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Five photos showing people affected by ANCA vasculitis, who are sharing their real-life stories during ANCA Vasculitis Awareness Month, are hung with clips on a string above the words 'Community Spotlight.'
An older woman in a black-and-white striped shirt walks on a sidewalk with her walker in front of her. She's wearing dark sunglasses and smiling straight ahead at the camera.

Rachel Young learns to walk again in 2022. (Photos courtesy of Rachel Young)

This is Rachel Young’s story:

A woman in athletic clothing and sunglasses walks on a dirt path next to numerous cacti.

Young hikes in 2023.

If I had ever heard the term “vasculitis” before my diagnosis three years ago (ANCA vasculitis with kidney involvement), it wasn’t something that held my attention for long or affected my life in any way. Fast-forward to 2021, when I started losing my appetite, weight, energy, pain tolerance, and strength in general. I knew something was seriously wrong. It took weeks and an emergent hospitalization for my team of doctors to even suspect vasculitis.

Once I was diagnosed and began treatment, my world turned upside down. It was no longer a matter of trying to survive day to day in such a deteriorated state of health, but now I had a whole new identity. I might as well have worn a name tag that read, “Hello! My name is Vasculitis!”

A close-up photo depicts an older woman tilting her head and smirking at the camera. She's wearing a striped blouse, a maroon jacket, gold hoop earrings, and lipstick. She appears to be sitting inside her home.

Young has experimented with lifestyle changes since her diagnosis.

Fortunately, with each new victory, I took on yet another identity: “No more steroids! No more infusions! I’m in clinical remission!”

Whew! It’s a lot of work, this business of partnering with vasculitis and trying to figure out where I’m at in my disease. How tempting to allow vasculitis to define me and how well I conduct my life!

It has taken all sorts of experiments with lifestyle changes to give my mind the freedom to simply be who I am at my core. A kidney-friendly diet, exercise, meditation, fresh air when possible, consistent connections with family and friends, and invaluable support groups, among other things, are as vital as all the medications I’ve been handed.

And for me, the bonus is sharing my experience with so many who likely relate. If not for vasculitis, I’d never have had the opportunity to revisit my love for writing at the tender age of 89.

In recognition of Vasculitis Awareness Month in May, the ANCA Vasculitis Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by vasculitis, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #ANCASpotlight, or read the full series.