A personal way to collect quality-of-life data with vasculitis

Living with chronic illness is a team effort. It’s not just the person with the diagnosis who lives with the disease; spouses, partners, children, and close friends all live with it too, in their own ways.

With ANCA vasculitis, which I have, that truth becomes especially clear. The daily uncertainty, the fear of flare-ups, and the physical and emotional toll don’t affect just us; they ripple through the entire household.

A year ago, my wife asked me, “What is your quality of life like, really?” It’s not a simple question for us vasculitis folks. (My type is eosinophilic granulomatosis with polyangiitis, but there are others.) Every day is different, and it’s hard to track. But her question opened up a new kind of conversation in our relationship.

Since that day, the topic of quality of life has become central in our lives. We’ve always been good at talking openly —about dreams, goals, even fears — but this question was different. It forced us to be honest about how vasculitis had reshaped everything we thought we knew about the future.

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Truth be told, the prognosis with vasculitis can be uncertain. Treatments are improving, but there’s no going back to the way things were before our diagnosis. The disease requires a lot of change for us and our loved ones, physically, emotionally, and practically.

For us, that meant rethinking everything, from work schedules to what we wanted the next few years to look like. So we made a shift. And part of that shift was developing a simple, powerful tool: a quality-of-life tracker tailored specifically to what matters in vasculitis.

Creating our own resources

This tracker wasn’t about checking boxes for generic symptoms or filling out one-size-fits-all forms that miss the nuance of our experience. Those forms just make me mad. This tool — developed through our nonprofit, Eosinophilic & Rare Diseases Cooperative — helps me track what I care about: symptoms that actually affect my daily functioning, the activities I want to keep doing (or miss doing), and the small changes that signal something is off.

Basically, the tracker lets the user list symptoms on the left side, with four columns to the right topped by number values, meant to represent a range from your best-case scenario to your worst days. Once you identify where your symptom stands for a particular day, you can fill in useful notes on it in that particular column. Another page asks you to list the joys of your life, assigning them a value and your desired frequency of occurrence.

For example, I track when I’m too fatigued to cook dinner, when brain fog gets in the way of conversations, or when my sinus issues create pain and an inability to talk. I note these things not just for myself, but so I can walk into my doctor appointments with real data. It helps my doctors see a fuller picture, and it helps me feel more in control.

I’ve helped create a free, downloadable version of this tracker, along with a video to help others learn how to use it effectively. It’s a tool that can empower patients to advocate for their own needs and also help loved ones understand what’s really going on.

This disease still sucks. There’s no sugarcoating that, and as I promised from the start of this series of columns, I’m going to say it like it is. But that’s given my wife and I a new kind of clarity. Quality of life isn’t just a metric on a form; it’s how we measure the moments that matter.

So if you’re living with vasculitis — or loving someone who is — I encourage you to start this conversation and use this tool. What does a good day look like? What’s missing? What’s possible? What’s enough?

For me, the act of noticing was a step toward healing.

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.