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.”

If you’re meeting somebody for the first time and they were to say to you, “I’ve never heard of vasculitis,” what would – how would you even begin to tell them [laughs] what…

Well, I do, I’ve got it all in my head, I’ve got a little recording [laughs] and I say to them, “Well, it’s actually, it’s an inflammatory disease of the small to middle-sized blood vessels, and basically it gets so inflamed because the body attacks itself. And the vessels become so sort of narrow that the blood doesn’t get through, and basically the organ just dies off, and if it dies off it won’t come back again. So, it really can, you know, be gone forever, whatever part of the body it affects.

However, if you’re caught in time, you know, there’s hope and there’s treatment there. You’ll never be cured but you know, given the right treatment, you can live with it and keep what I call ‘the monster’ at bay,” and I do call it a monster because it can rise out of, come out the blue at any time, but you can put the monster at bay and keep it in remission, for a while, but it needs treatment. And it needs the correct treatment, which is medication. And that in itself can have side effects.

But the drugs that – well, the drugs are still the same as they used when I was diagnosed, but they’ve tried, I think, to cut the steroid doses down a bit. I think the starting dose might be about [amount] now? And again, they very quickly taper – I mean, I was on a long time, for three or four months, and it was high. Whereas now they taper them quite quickly. So, treatment has changed over the years and they’re getting better at, dare I say it, the cellular activity and what the cells are doing, so that’s still going on.

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

So initially, when I got the diagnosis of vasculitis – now bear in mind it had all been focused round about my head and my face and my ears, my nose and my throat – now I’d heard of people who had sinusitis, tonsillitis, laryngitis, and when I got this diagnosis of vasculitis, I thought it was something similar.

Now I couldn’t have been further from the truth, because as soon as I Googled it, I realised just how nasty it was, that it was something, it just wasn’t a mild illness.

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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.

No. No, no. You don’t, you don’t expect it. The scariest thing, the thing that I still maybe haven’t really got my head round was how few symptoms I had. And how, you know, it must have, the damage must have been going on for months, maybe years, but how few symptoms I had in such a short space of time. I just can’t understand that and that’s the scary thing because I don’t understand how much damage could have been caused and going on inside my body, whenever I didn’t feel it was happening.

You know, it was only really, what, a Saturday evening when I started to have a wee bit of chest pain and a few breathing difficulties to the Friday, when [laughs], when it was, the aorta was absolutely bursting, you know?

And I think too, because it’s a disability, it’s not a, you can’t physically see it, it’s an invisible illness, you struggle with every person you go to see. If you’ve a blue badge, you know, you park in a blue badge parking bay, somebody walking past could look at you funny and you think, “Oh flip, they’re looking at me, thinking that I look healthy and normal, and what am I doing parked there?” [laughs]. But actually, you’re breathless walking from the car to the shop and you’re in complete agony walking from the car to the shop, but they can’t see, they can’t see what’s going on inside you.

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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.”

I think you referred to… when you’re talking about vasculitis you are saying “It,” and “Thing” …

Yeah.

… and you mentioned at one point like an animal.

Yeah.

It’s almost like it’s not part of you?

Yeah, that’s a good point. I suppose I do think of it as a kind of alien in me, or an animal in me, an invader. Yeah, I do think of it as an, I know it hasn’t come from outside the body because it’s autoimmune. So, by definition, it’s come from inside. But a bit like cancer I suppose, you know, cancer’s in the same category, it comes from inside the body, in a sense you could argue it’s quite a natural part of the way the body behaves you know, just cancerous cells dividing too quickly and out of control, autoimmune disorders are the autoimmune system going into overdrive and in a kind of a way doing its job too well.

So, you know, I know it is from the body itself that it comes, but you still think of it as a kind of unwelcome visitor that’s living inside you. I do feel distanced from it, I do feel it’s something else. I find that’s important because I don’t want to be def-, I know everybody says this, but I don’t want to be defined by it, I don’t want to be, “Oh, the guy with vasculitis, kidney failure and scarring in the lungs,” I want to be me, who happens to be living with this awful chronic illness.

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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.

How do you sort of refer to it?

[Laughs] well, I used, when I first got it, I used to write little plays and it would be Wegener’s. I’d call it Wegener’s because, like, I quite like, I mean, Wegener’s is the idea of it being vague, vagueness, but also a dodgy Nazi because Wegener, Doctor Wegener was a Nazi who first named the vasculitis, that’s why they prefer to call it GPA. So yeah, the Wegener’s, but I, the same doctor who talked, I think he said it being a bit of a beast, he comes out with lots of different ones. One of the significant ones, he talked about an oil tanker, it’s like an oil tanker, we’re just steering it, but we’ve not dealt with the big problem. And what I got from that was the volatility of it, that I actually had to be really, really careful to try and get it on track, you know? So, I had an image of a road oil tanker, like a petrol tanker that was a bit out of control. But a friend said, “Well, I see that as a ship, like a ship oil tanker,” so that opened-up a whole other world.

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

You mentioned somebody else’s metaphor for vasculitis. Do you have any of your own?

[Sighs] Any of my own? I don’t know. I don’t think I have any of my own regarding vasculitis. It’s just…I don’t know. I, metaphors make things easy for me, you know, and they make, they make me understand things, that’s why. [Sighs] I don’t know, has, as a metaphor in like having vasculitis is like being in prison. You know, you have to find a way to cope with that environment. Right, you’re going to live in that environment for a while and you might, I don’t know, you might get the good behaviour and be moved to a better cell with more benefits. You might go to an open prison and things might get better. So even in the prison, there is room for improvement. It’s the same with this illness, you know? Yes, it is what it is, this is the environment, you need to, you’re going to wake up every morning, regardless. What you make of that day, you know, it’s up to you. So yeah, you have hard times, you know, when, like in prison, you’re in solitary confinement, yeah you have those as well, yeah. But you also, I told you, have good times. When you have privilege, you get a TV, you get your own room [laughs]. At some point you might go for an open prison, right? You might get outside, go out for a job.

So, there’s always room for improvement, but this is it, this is the environment you’re in from, you know? It doesn’t matter how you got there, that’s not important. You need to focus on what to do – the ‘why’ in life is not important, the ‘what now’ is important. That’s the only, if you, if you stick to the ‘why’, that’s not going to help you, you know. You can, of course, you’re going to have times when you’re going to be like, “Why did this happen to me?” That’s not, that’s not relevant at this, at this point. What is relevant is what now, what I’m going to do next. That’s how I see things, that’s how.

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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.

Well, it’s strange to begin with. I mean which illness do you, the symptoms are, you know, late onset asthma, lumps on your arms, polyps up your nose, you know, it’s just, you would never join those dots. So, it’s no wonder that people didn’t recognise it.

They are weird quirky things the immune suppressant illnesses are. I don’t think we fully understand, you know, about how our cells do this, that and the other. You know, it’s just like coronavirus, you know, we’re learning daily different things about that. And there’s still some huge question marks that people can’t answer, why it attacks certain groups, you know, and you start to ponder on that, why it attacks old people but not kids.

This world has some very strange ways of manifesting things and the way I look at it, there’s coronavirus and vasculitis and anything else would, very, very difficult to understand it, you know, even with the amount of knowledge that some people have and the amount of research that’s being done. These are things that are changing all the time.

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

You know it’s a bumpy road, lots of things can go wrong along the way and sometimes doctors aren’t sure, it’s incredibly complicated as well, you know, it’s autoimmune diseases particularly are incredibly complicated things and then when you gain other things wrong with you, it becomes even more complicated to then figure out what, what’s what, what things are causing what symptoms, throw in a bunch of medication that has some really strange side effects as well, and it becomes very difficult to understand what’s going on sometimes and the doctors as well, you know, they don’t know everything, I mean they can’t know everything, it’s impossible to do so and there are times when, you know, especially in the last year and a half I’ve become much more unwell in the last year and a half and there’s been times where I’ve been to an appointment with my consultant and she’s literally said to me, “I don’t actually know,” you know, she said, “I don’t know what’s wrong here, I,” seemingly everything’s fine in terms of blood work and things like that but that sometimes is limited as to what it can tell you and it’s difficult hearing that going to an appointment with someone who’s, especially someone who’s a very good doctor, who’s a specialist in some very complicated things and then saying to you, “Actually I don’t know, I don’t know what’s wrong, I don’t really know what to do here” yeah they can refer me to other people but sometimes it’s not that easy, you know, it’s not, it’s not that easy to just sort of give an answer as to what’s wrong with you.

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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.

Yes, and I think it’s very individual in that me, if. I am a different person. Without a doubt than I was before my vasculitis came along. I am different in many ways – physically, mentally. And that’s because I have vasculitis and the effects of vasculitis in me. So yes. I am, I am Peter Vasculitis and, you know, that could be Fred Vasculitis or Avril Vasculitis. I think it’s fashioned me as a person and shaped my body and my mind for the future, yeah. It’s always there.

The, the thing that I have come to terms with now, which I didn’t initially, again, which may have, certainly did contribute a little to my depression, was the fact that because I lost it, you know, when I, when I came out of hospital and I started to realise where the hell I was and what was going on, I started to lose things, you know? We were talking about my motorcycle, and I couldn’t do that anymore. And there were other things.

And I blamed vasculitis for all my woes, all my, I could have a cough, a cold, sore throat, blocked nose, could be anything at all. I could have an itch on my leg and vasculitis would be responsible for it, I blamed vasculitis for everything. Because it was easy to do that [laughs] and I didn’t know any different anyway.

I don’t do that now, of course, because I understand it more, I understand what it has done to me, I understand. I don’t, I don’t think even the people that treated me understand exactly where it came from. They know how it arrived, and – because they themselves the vasculitis community, the medical community, would probably have more questions than answers – [mm] I felt almost comfortable in that, eventually thinking, “Well, if they don’t know, then, you know how can, how can I suddenly start putting the blame on vasculitis for everything that’s happened in my life,” you know, for ‘There is no paper at the corner shop, it’s vasculitis’ fault.’ I mean almost literally that.

So yeah, I’ve grown out of that. Gone past that. I accept it. I even accept it when it comes back and gives me a slap, for some of these reasons that it has over the years. But I still accept it, and it has changed me, there’s no doubt about that.

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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.”