The Not-so-Simple Task of Explaining Vasculitis

“Tell me about your disease.”

This should be an uncomplicated request, but it’s not.

Where do I start? What do I say that accurately encapsulates vasculitis but doesn’t confuse, mischaracterize, or bore?

On the surface, describing my condition is simple: It’s an autoimmune disorder that causes inflamed blood vessels. But anyone who’s been diagnosed with vasculitis knows there’s nothing simple about the disease. Multiple specialists, extended treatments, and a pivot to a lifestyle with chronic illness are all adjustments that take time and energy. The nuances of everyday life with vasculitis can get complicated.

So how do I decide how much information to give? I want to honor my conversational partner’s question with interesting, informative details. For the sake of awareness, I want to paint an accurate picture of my illness. And from there, the possibilities of where the discussion could go are endless.

But sometimes I’ve only got a few seconds to frame my answer. Ultimately, what I choose to say depends on my audience.

If I mention vasculitis only briefly, or there’s no time for an in-depth answer, I bring up elements that paint a broad picture. It can sound something along the lines of this: an autoimmune disorder, inflammation of the blood vessels, a lung hemorrhage, serious but controllable. It doesn’t take more than those key phrases to establish a basic idea.

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Sometimes I choose to share the symptoms and how they affected me. A systemic disorder affects the entire body, but may begin in one localized area. With blood vessels reaching every part of the body, vasculitis can manifest in various areas — kidneys, lungs, and skin being the most common. A lung hemorrhage and emergency blood transfusion, though not indicative of vasculitis in all cases, demonstrate my particular case in a forceful way.

A little more information

If the conversation continues and they want to know more, then it’s appropriate to get into some of the medical terminology. I may talk about the medications I take to control inflammation or how I need to visit the lab every month. There are also quick answers to share about disease maintenance, such as biomarkers that indicate a flare.

I might even share with them some of my health backstory and the terrifying ordeal when I was diagnosed. In fact, it’s common that among the first questions vasculitis newbies have is this: How did you know something was wrong? It’s a human-interest story, told by someone right in front of them who experienced it firsthand.

All the details

If someone wants a longer explanation, there are medical facilities with encyclopedias of knowledge. Centers for vasculitis care in the U.S. — such as the Cleveland Clinic, Johns Hopkins, Mayo Clinic, and the University of Utah — provide specific care for vascular patients at a higher caliber than the average hospital. Their websites tend to give information about the condition at a more involved level, since these institutions foster the doctors and researchers who know the most about it.

For a truly extended explanation, I’m not always the one to give it. I’m not a doctor or a healthcare professional, so for certain aspects of the disease’s workings, I refer to those with an education and a career that can describe it more succinctly. However, having lived with vasculitis for over half my life, I can talk about the intricacies of it for as long as someone has the patience to listen.

One aspect of this topic that comes up with young people is deciding when to bring up vasculitis with a potential romantic partner. This is up to each individual, but I find that the more someone cares about me, the more they want to know about my chronic disease lifestyle. Whether I like it or not, it’s a part of me — and they often accept that right away.

Of course, there are parts that I may not want to share, and that’s fine too. Everyone’s comfort levels are different. I now know that I don’t need to be particularly well spoken or have had a severe onset to be an advocate for vasculitis awareness.

Regardless of how the conversation goes, there is one part that only I can explain, and that’s my story. Vasculitis affects each patient differently, and my process of diagnosis, healing, and coping is mine alone. Whether I choose to share every detail or just a brief outline, it’s a story that has changed my life — and has the potential to influence others, as well.

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.