Thoughts on what systemic vasculitis is

This page covers how people with vasculitis understand their vasculitis:
  • Thoughts about what systemic vasculitis is
  • Comparing systemic vasculitis to something else
  • Learning that medical knowledge of systemic vasculitis is always moving on
  • Feeling different as a result of having systemic vasculitis
There are different kinds of vasculitis (see the overview). This website is about the many types of primary systemic vasculitis.

Thoughts about what systemic vasculitis is

The people we spoke to had rarely heard of vasculitis before their own diagnosis. They had to learn what it was and what treatment would be needed.

Mo describes vasculitis as a disease you can live with, given treatment to keep “the monster at bay.”

Pete hadn’t heard of vasculitis before he was diagnosed, but quickly realised it was very serious.

Even once people understood what vasculitis was, it could be difficult to make sense of it.

Diane says it’s hard to get her head round the damage vasculitis did to her body without her knowing.

Grant still finds it scary that vasculitis “can just happen. Just like that.” Steve and Holly mentioned that anyone can be affected, whatever their lifestyle. Roberta has learnt that vasculitis is not curable but can be managed; being aware that it can relapse leaves her “on edge.” Isabel also knows that vasculitis can be serious but feels “all right” because hers is under control with medication.

Likening systemic vasculitis to something else

Several people made sense of vasculitis by likening it to something else. As with Mo’s reference to “the monster,” there were striking similarities that emphasised an unpredictable, invisible and sneaky force inside the body, ready to attack at any time of its choosing.

Thinking about vasculitis as an invader or unwelcome visitor living inside him helps Steve “to be me.”

Claudia also likes to think of her body as a host for vasculitis, following a suggestion from someone else living with it. It keeps her alert and fights with her, but “I have to better myself and I always have to win.” Isabella thought that vasculitis had been “biding its time” in her system for many years. Katy described it as “almost like a demon was in my body,” and said the skin symptoms could make her look like an alien. Gail referred to vasculitis as being like fictional character The Hulk, getting angry and coming out if she reduces her medication. Steve said it could be like facing “an animal that you don’t know how it’s going to react.” For Pete, vasculitis is always “looking for another opportunity to hit you hard,” while healthcare “keeps the lid on it.”
Using a slightly different metaphor suggested by her consultant, Wendy likened vasculitis to an oil tanker which is difficult to steer and could feel out of control. Claudia thinks of it as a prison, where the question of ‘what now?’ is more important than the ‘why?’

To make sense of her vasculitis (“Wegener’s”), Wendy and her consultant liken it to other things.

For Claudia, vasculitis is like being in a prison and making the best of every day in that environment.

Learning that medical knowledge of systemic vasculitis is always moving on

Part of making sense of vasculitis was learning that medical knowledge changes over time and there are always uncertainties. Lynn pointed out that, while understanding of vasculitis “has moved on massively,” a lot remains unknown. Dean, Claudia and Holly talked about the extra challenge for doctors given their circumstances – Dean has a very rare type of vasculitis, Claudia had an atypical response to treatment, and Holly has developed further illnesses.

Given how “strange” vasculitis is, Karen is not surprised that it’s difficult to recognise and understand.

Holly says autoimmune diseases and treatments are complicated. Even specialists don’t always have answers.

People who had been diagnosed for some time had often experienced a change in how their vasculitis was labelled. Dawn, for example, was at first told she had “limited” vasculitis, which then became known as Wegener’s, then as granulomatosis with polyangiitis (GPA). Lynn discussed how the medical research focus has been on whether vasculitis affects small, medium or large blood vessels, but “the lines between all of those are blurring.”

Feeling different as a result of having systemic vasculitis

Making sense of vasculitis often involved people making comparisons with how they were before.

Peter no longer blames vasculitis for everything but says there is no doubt it has changed him.

Steve noted that he feels different, has different choices, has to do different things and has different life possibilities because of vasculitis. Nicola remembered, “That person before was really robust and healthy, had never been in hospital except to have children, and never was at the doctor’s.” Sharon now has more empathy for people who need extra time to do everyday activities, “because that’s me.”