The Not-so-Simple Task of Explaining Vasculitis

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by Allison Ross |

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“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.

Comments

Don Staples avatar

Don Staples

For anyone willing to do a bit of reading online, this page from the UNC Kidney Center is the best combination of a simple yet complete explanation that I have found. Several doctors and NP's have even found it informative.

https://unckidneycenter.org/kidneyhealthlibrary/glomerular-disease/anca-vasculitis/

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James Victor Cross (Vic) avatar

James Victor Cross (Vic)

Can you tell me. Is there /Are there any equivalents to the Cleveland Clinic. John Hopkins. Mayo Clinic. And the University of Utah. In the UK?.
I was diagnosed with AAV MPO Jan 2017 and have yet to meet a doctor who specialises in AAV. I'm treated for CKD Stage 4. in the renal section of the local hospital and the rest of my symptoms, muscle aches and pains / NOT JOINT pains and fatigue etc. seem to be just ignored. I've yet to meet another person AAV and feel very alone. At the same time I have to look after my wife who had a stroke in July 2016. We are both 83 years old. I just need someone to talk to who understands.
Please help if you can. CHEERS Vic.

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Gretchen Booth avatar

Gretchen Booth

Thank you for your great articles! I have found people's eyes glaze over when I describe my disease because they had never heard of it, as I never had until I was diagnosed. If I was saying "I have cancer" or "I have rheumatoid arthritis", it would help people realize the gravity of the diagnosis.

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Christina avatar

Christina

Please check out the following website for Vasculitis UK: www.vasculitis.org.uk

Here are the phone numbers I found from their website. I think this would be a good place to start:
01629 650549 or Helpline: 0300 365 0075

You are not alone ... sorry you joined the club! I'm in BC, Canada diagnosed as MPO+ microscopic polyangiitis and find it challenging connecting with others going through the same. From what I have read the impacts are so different for us all it can be hard to connect with someone at the same stage, with same symptoms. My impacts are fatigue, sinus/eye/respiratory with peripheral neuropathy (likely from diabetes) and realize will always be on guard for lung, kidney and liver issues (re. meds). Hard to deal with emotional side that comes with the territory... lots of worry and planning. I find that overwhelming sometimes and am lucky to have small circle of friends I can overshare details with. Relieves the stress as all there for each other.

Good luck! I am sure you'll manage to connect with others in your area. We all develop coping mechanisms and I am hoping you are not feeling robbed of enjoyment due to all the real life pressures. Important we don't let diagnosis take over our lives completely. Hard to remember that somedays. Have to hang onto moments that do bring joy and laughter.

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James Victor Cross (Vic) avatar

James Victor Cross (Vic)

Thanks Christina. I'll have a look at your suggestions. I'm a bit knackered tonight as I had to take my wife to the hospital to get rid of some blood as she has a high red cell count. That left her and me a bit worn out today.
CHEERS Vic.

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