Systemic Vasculitis

[Sighs] I’m unsure about the primary healthcare, like your GP service. Because obviously, with hindsight, I can look back. And the amount of visits that I had between 2011, I don’t know the numbers, until I got referred to the nephrology department and the renal department. There was a recurring theme there, you know? Tired all the time, achy joints, slight trace of protein. Headaches, fatigue, just - but very non-descript. So, on one hand, I can understand that the GPs couldn’t pinpoint anything, but on the other hand, that’s also, I now know, classic symptoms of vasculitis.

But I think for a practice our size, we’re quite a small village, and the way that they work out the ratios, the GP would probably only see one vasculitis case every 15 years. So. I can completely understand why that wasn’t their first go-to, but that’s why it’s so important for the work that you’re doing, that it now becomes out there. In the mainstream of what they’re thinking. Because had we caught it - possibly - earlier, then the roller coaster might not have gone on for so long, with all my medical issues.

Because at that point, which was April 2013, even renal were quietly confident that this was damage that could be reversed, that they could get the ANCA under control, and that things were, were looking a lot more positive. But sadly, it wasn’t to be. But then there’s the flipside of that that I’m - the GP might never have referred me to renal, and you could, I could just have been tottered along for the full time, until something catastrophic may have happened.

And I appreciate rare diseases are rare, so I don’t expect them to know everything, but a rare disease will affect one in 17 people, and I think that’s also important to recognise because, if you think about the amount of people that will be in a hospital or even just an A&E waiting room at one time, a good handful of those will probably be experiencing some kind of rare disease, so.

I guess for me as well is when someone’s young? Not to just dismiss things just because they’re young or just because they’re female? because a lot of females will experience some element of discrimination because, “Oh, you know, you’re too, you know, you’re too young, you’re female,” and all that thing because women again, are more likely to seek help over men, so when men seek help it’s like, “Oh, well there must be something wrong then,” as if like, I guess comes, might come across as like women don’t, just go for any old thing when we don’t, we’re just more in-tuned sometimes with our bodies, and if someone is telling you that there is something wrong, chances are that there’s something wrong. Because I’ve got better things to do than be in and out the hospital and doctors’ surgeries all day. I want to live my life; I want to not have these things wrong with me.

So, if you had a magic wand that you could wave and tomorrow a 13-year-old girl is faced with the same thing as you were faced with, how would you, how would she experience things differently, what would make that happen?

I think her GP would recognise that even if they don’t think something is systematically wrong or seriously wrong, that they show a bit more empathy for her, and that she gets access to psychological help sooner. And in absolute ideal world if, I feel like it, in a way it’s necessary to go through sort of all those, at least some of those topical treatments to begin with because they do help a lot of people and, so things like oral ulceration aren’t straightforward and a lot of the time it is nothing serious.

But someone in that much pain and experiencing things to that severity, I think sort of this multidisciplinary approach is so crucial, and it’s only when you get that approach that people then start to join up the dots? And sort of put a whole system together and see that, “Yes, this person’s experiencing joint pain, that’s usually something to do with rheumatology, and yes, this person’s experiencing mouth ulcers and maybe they should see a dental hospital and oral medicine consultant,” when you actually put those two consultants together and they have a discussion then they can join up the dots. And rather than maybe giving you some oral anti-inflammatories for your joint pain and something topical for your mouth they can look at treatments that sort of treat this as a systematic thing. And, in my experience and in the experience of people I’ve spoken to who have autoimmune diseases, that’s what really makes a difference to quality of life.

Well say for a health or - I can’t dictate - for doctors, what I would say, based on the fact I went, I had ongoing issues with the sinuses, which seemed to - looking back now, I think it was relevant - what I was getting done was getting the sinuses drained, which, that turned out, that was a symptom of – or my symptom, if you like - one of my symptoms of the vasculitis.

What I would say is if it could have been diagnosed sooner, as in, the way it kind of was in 2018, potentially I could have maybe missed out on getting - well, I’d gladly have missed out on getting so many operations and exposure to, because I’ve now, I think, it doesn’t really bother me, but obviously I’ve got [points to nose area] you maybe can’t see too much now, but like my nose, because they’ve had to do bits of drilling, it’s kind of out of place and things like that, it’s just cosmetic things. But things like that, some people might get affected by that because it’s - I genuinely aren’t - but if they’d got on top of it sooner, which I believe is done from a blood test, although I’m not sure how readily available a blood test is for that, it’s, is it cost-effective? Is it as simple as just doing it? But I suppose if you blood test everybody it’s maybe, I don’t know how it could be done, but things like that, I would say, if they could get it – and I dare say obviously awareness and they’re learning sort of every day with the symptoms, you know?

I think it’s about really tuning in, so what, and so I’ve spoken to my GP about this since, so what he’s said struck him was that I felt a bit sick and there was, [sighs] it was like his gut feeling was telling him to take the bloods because he actually said, “I wouldn’t take bloods for what you came in with normally, for what you described. But there was something.” And then I think he also highlighted too that I was never at the doctor’s? So, you know, I guess he was suggestive of, “For you to come to the doctor’s was telling me that you really must have been feeling quite poorly and you must be feeling some, you know, extreme enough symptoms to come.”

Now, that wouldn’t be what would decide somebody to, you know, that wouldn’t be fair to be like, “Well, you’re here all the time so I’m not going to take you seriously,” I don’t mean that. But I think for him, I wasn’t using maybe strong language, I, because I was quite dismissive of what I was feeling, I was kind of like, “I’m just feeling a bit,” I mean that’s how I went in. Just like, “No, just not a hundred per cent.” But I think it’s about taking the whole picture into account, so looking at that whole holistic approach to it and really picking up on those smaller nuances that I suppose makes you think, “Hmm, maybe there’s something more here.”

It was frustrating because no-one would listen to me. And I kept saying to them, “This isn’t hay fever, this isn’t, this is something that’s happening with my nose,” and, you know, I’m banging my head with pain every night and crying in my bathroom so my kids can’t hear me. In the nighttime, during the day time when you’re busy you kind of ignore all the pain, but during the night obviously when you’re trying to go to sleep you can’t breathe through your nose, you can only breathe through your mouth and the pain is there and none of the strong painkillers are making any difference.

And I could see my facial, like the symptoms and the face was changing my, you know, I looked like I had been punched in the face, my nose was swelling, and my face was swelling. But I just kept being told time and time again that I had severe sinusitis, which is why I had two sinus flushes.

As I say, and it wasn’t until I demanded the biopsy and my nose collapsed that someone listened to me. Which is why I find it so horrific that this is still going on. Doctors are still missing the basic signs. I know most diseases, you know, you have to go through a system, don’t you, of ruling things out, but I do think that doctors should listen to their patients a lot more, and I think, you know, I’ve got a whole list of the two years of every single appointment that I’d been into the doctor’s. They must’ve got sick and tired of me in the end but, as I say, it didn’t really have to take my nose to collapse until somebody would actually, sometimes it’s just finding someone that has seen, somebody who’s seen it before?

Some people are lucky, you know, a nurse or somebody has recognised the symptoms and got it straightway and of course the earlier you catch the disease the better it, you know, the less damage that is done.

And I think for doctors, on the whole, patients maybe, doctors think patients overplay their symptoms? But patients who have got a chronic thing that’s come on slowly actually underplay their symptoms because they’ve learnt to live with them?

So, you adjust your life, you know, over the period when I was ill, first of all I got somebody to clean the house. I gave up doing things, I cut my hours at work twice and then I gave up the highly pressured job to do one where I didn’t have to think, because I just didn’t want the pressure of it anymore. You let things go, you just don’t do things, you never go out at night, or do anything like that because you just haven’t got the energy. But then when the doctor says, “How are you?” you sit there and go, “Well, I’m all right,” because maybe that day you don’t feel too bad? Or just because you’ve just got used to living that way and you think, you’ve forgotten what living normally is.

I think that that would be the thing I would say to doctors. Don’t think your patient is making it up or exaggerating it; they’re most likely not telling you the whole of it. They mean to, but they’ve learnt to live with it and therefore they don’t. They’re not able to explain it.

And I mean, obviously, that’s a problem for doctors because if you say to them, “Oh, well, it comes and goes and I’m all right between,” you know? During the periods they were looking to see what I’d got, they thought maybe I’d got gout and then they thought a periodic fever, there are these conditions called Mediterranean fevers? Obviously, it was neither of those. The worst misdiagnosis I had was once when I had a very bad attack, it was right at the beginning when I didn’t really know that it was something that was repeating itself and being unable to walk and having to be carried to the car, I got taken to the out-of-hours doctor who diagnosed me with a chest infection [laughs]. He said he could hear a rub on the lungs, which was probably the vasculitis. But. You don’t get many people with a chest infection who go from okay to not being able to walk over the space of a couple of hours.

But the other thing that interested me was the OT didn’t read the information about what my condition was or anything, and I used to do that. I used to just rock up and do an assessment, and if it was someone with – I used to, you know, check what was wrong with the person, but if it was something I had never heard of, I used to think, “Well, they can tell me their experience, I’ll go with that.” But what I hadn’t realised was the professional – of course, you know, when you’ve got something like vasculitis, you’re having to explain it all the time, so actually it’s really, really tedious to have to say again, you know, “Well this is what it does to you, this is how it works.” So, I knew this OT hadn’t read up on it, whereas others had read up, you know, they made it very clear to me, “Oh, yeah, we’ve, you know, we’ve been, I’ve been reading about it, do some Googling.” The physio I’d sent information too and they read it, you know, so it was an interesting thing [laughs].

So, I don’t know if at any point you’ve had people who have discussed the wider impact on your life and asked you about that, even if there’s nothing they could, they felt they could do about it, has that formed any part of their, what they’re thinking about when they’re making decisions?

My experience is it depends who, it depends who the doctor is. It depends who that person is who is making the decision. I think that I felt that there are definitely a number of senior consultants that very much have taken a lot of things from understanding lifestyle and impacts and a lot of things that are going on, and really factoring that into their decision-making process but also discussing that at appointments. And those are the ones, and those are the doctors that stick with you, those are the doctors that you feel grateful to have met and feel the connection to and feel supported by, and you feel like you’re never going to forget them.

And then there is a very good chunk, and I would say – I’ll be honest - it would always be the less-senior doctors that haven’t developed that side. And I would definitely say there’s a whole rank of seniority. And, apart from a few that were incredibly good who were quite junior, I would say that the lower down my experience was of seniority and experience, the feeling that it was less, kind of something that was, I would say a focus? But also, I would say was encouraged by more senior people for them to think about during these consultations.

I think it’s quite a wide thing, in my experience, of different doctors within the local hospital that I’ve had here, and I think that there is a lot of pressure on younger, the younger doctors to very much have a very good procedural and clinical knowledge, and to be able to gain a lot of experience, both medicinally but also from kind of on a surgical standpoint.

But, from what I’ve seen and heard, there seems to be very little guidance, support and training around more of the personal side and more of the side of thinking about a patient more as the whole rather than as a clinical interest.