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.

You’ve said quite early on that you’re a bad patient…

Yep [laughs].

… and you’ve said that you’re not nice as a patient, you’re not easy as a patient. I mean what, with this condition what would a good patient look like?

I have no idea, but I just think it’s because I won’t just let things happen just because that’s what doctors should do. So, I think in terms of how doctors and nurses probably feel, they probably see me as a bad patient because I don’t, I go against the norm and what they want because I’m the expert in the disease and they’re not.

When I, like not long after I’d been diagnosed I was in A&E again and I think I coughed up a little bit of blood, I can’t remember, something had happened, and they kept me in, and I said to them, I said, “I want you to contact the doctor that I’m under in this hospital,” “We can’t do that, you’re under the medics now” they just absolutely refused to speak to the doctors that knew what was going on with me. I said, “Why should I have to go through to medics when I’m already under lots of different doctors?” and it got infuriating.

So it got to the point where I’d ask them, “Can you contact this doctor?” the times I’ve asked, “Can you contact [the major teaching hospital in England]?” and I remember one nurse going, “We can’t contact [them], it’s a hospital in London,” as if like you’re trying to get in touch with the Queen, and I’m just like, so I’d just send off an email the consultant and he’d reply and then I would basically be telling them what to do, and I’d have to show them the email to prove that they’re doing everything wrong, and it’s tiring, you know, and I just don’t see why they can’t listen to what people have got to say when they don’t know, you know.

Not all of them in A&E are that, are bad but a lot of egos need to be popped a little bit, and those, with some of the doctors have been quite interested about the illness because I remember one point one of the consultants coming in and going, with like a load of doctors asking if they could just have a chat and stuff and I was like, “Yeah, that’s fine”, because I’m happy to let, you know, for people to learn because they need to learn. But it’s when they just start ignoring everything that you’ve got to say and then not even willing to speak to someone that knows what’s going on, they need to acknowledge that they don’t know everything.

I don’t want someone coming along pretending to know everything when they really don’t. I have a lot more respect for the doctors and staff who will say, “Do you know what, I don’t know enough.” And I think that’s what helped with the first doctor I was with, the registrar, because he was open, he was like, “I don’t know enough,” but it was like a journey together, so he’s like, “I’m learning as well.” You know, so he wasn’t trying to say, “I know everything,” and I think that really helped.

And yeah, most of the doctors, like, well I think most of consultants I’ve got now we’re sort of on this good understanding, but it’s when there’s new people in the mix that makes it difficult because their egos get too much for them. And they have this bit of a complex about it.

Yeah. My illness is what probably covered like a page in a book, or barely that, so, I’m not expecting them to know everything. I’m expecting them to listen to me and speak to people who do know things if they don’t.

I’d also made a complaint to the health board as well, at some point in that year, due to all the misdiagnosis. Because obviously there was a lot of evidence there and, I was, again I was quite angry, and I needed to sort of get that anger out and also understand sort of where things went wrong. So, I’d requested all of my medical notes, so, I’m sure the postman was happy to be carrying a massive like pack about that big [gestures size] you know [smiles].

So I went through everything, obviously took me a long time to read through everything and I think there’s still some things that they’ve taken out because obviously they can take things out to [gestures quotation marks around ‘protect you’] protect you, which is obviously in my opinion is a bit bull, but you know, because obviously I know I’m not a nice patient at times, I’m not an easy patient even. And obviously I do you know, I’m curious to know what was written on those inpatient admissions when I was threatening to sort of discharge? So, and because those things were omitted from there? But there were other inpatient notes that were left in there, so. It wasn’t a case of they don’t do they don’t include those notes for any reason.

But that’s when I found out that I apparently, I had anxiety when I was sort of unwell and all this rubbish. But I did also find out that in 2011, one of the respiratory doctors, the cardiologist, he, they were sort of quite keen on sort of figuring out what was wrong, so there was like emails included between the two, sort of trying to you know, trying to figure out what was wrong, but I guess it was one of those things that, “Oh, well we don’t know what it was so we’re giving up” sort of thing.

And my GP, was you know, there was a copy of her email to the doctor from before when I was diagnosed, the one that told me I was just stressed saying that you know, “A young person shouldn’t be having all of these symptoms, there’s something wrong and I want you to find out what it is.” So, I guess that reinforced my sort of faith in, you know, in some of the GPs in the surgery you know, because before I was diagnosed I was just told things like, “Oh, you’re unfit, you’re stressed, you’re anxious,” and all of this you know, and none of that was true.

That particular friend I guess didn’t realise how bad things were until we went on holidays together, a couple of years after I was diagnosed. It wasn’t, we weren’t doing anything too much, it was more just like laying in the sun type holiday, and one we could just having a wander round, but it was in Ibiza, Ibiza’s relatively flat so it was quite, easy to manage, we weren’t there, for the party sort of scene.

But I think that’s when she perhaps realised how much it affected me, because that’s when she got to see it every day, because obviously when you’re around friends they only see a certain amount.

One of my other friends was really helpful because she was going through her own issues with regards to her mental health, and even though what we were both going through was different, we both had similar experiences to some extent? With people not listening and just not knowing what’s going to happen next. That friend had to stop working because, she had a, has OCD and it got to a point where it was affecting her work you know, so having those worries about, “Am I going to be able to work?” you know, we both shared a lot of the same concerns about different aspects of our life even though it was about completely different things.

And I guess having to an extent a shared experience you know, was really helpful you know, I’d go to the house and we’d just sort of hang out with each other. We wouldn’t really talk, we wouldn’t really do very much, but it’s just sort of that company, as well, and again, with her I didn’t realise how bad her OCD was until I saw things getting really bad, I knew it was there but I, until you sort of see how, how these things manifest, it’s easy to sort of play down other people’s symptoms and what’s wrong with people.

It’s helped I guess reconnect with some other friends. So, one of my school friends has an autoimmune condition and I think, we never not, stopped talking as such but obviously, as things, as we grow up, we get sort of distanced but I guess it’s helped us reconnect a bit. And that’s helped as well having someone who knows what it’s like with like treatments, especially someone close to you and that even though family have sort of got rheumatology conditions, it’s not the same and I find that some family members will often just try and compare and you know, and it’s like, “Oh, this person’s worse than this person,” and it’s like I can’t be dealing with that sort of politics.

But then trying to find a new job was horrendous because I was hit by brain fog, and that’s absolutely horrendous, and I guess unless you experience it? You’re going to struggle to understand what it’s really like. For me it felt like my head was literally clouded, I felt like I needed to open up my skull, take my brain out [gestures] and give it a good scrub clean, like that’s physically how it felt.

I remember I had one job interview and I was just talking about something and then my brain just left me and then I was just so generic all of a sudden in what I was saying, and then I became aware of what just happened and it just made me feel really embarrassed. So, it took quite some time then to actually find a job, and then it’s also a case of finding a job that I can physically do you know.

I was, when I was, just before I was diagnosed, I was working in a supermarket and I’d left that because I was starting uni and I’d had another job, I was work, so I’ve been working two jobs at that, before uni. So obviously I made the decision then to leave one of them. And I wouldn’t be able to do that supermarket job anymore even in that, like leading up to when I was diagnosed when I was working in that supermarket, I was finding it incredibly difficult, just, just doing the job. I would just be exhausted doing some of the most basic things. You know, just standing at sort of self-serve checkouts was painful in my back, just use, [gestures] the repetitive movements of scanning was just too much.

So it was, it was a lot to try and find something that I could physically do? And trying to get a career in something that’s extremely competitive makes it a lot harder when again in an already competitive market you’re limited to sort of a lot less jobs because a lot of the jobs you wouldn’t be able to do, and that’s something I guess I’ve found hard, it’s still something I contend with and now with the coronavirus as well trying to find jobs more in line I guess and having the supervision with people that I need it with to get me where I want, want to be. Is that, do I leave a job where I’m able to work from home safely for something where they might not be able to accommodate my needs? And make those reasonable adjustments, how would that affect everything. So, it’s, so it leaves you in limbo?

Ibiza was like the first time I went away on my own, but not, not my own, with a friend, but the first holiday I sort of went on since, from being diagnosed and it was, I guess a nerve-racking experience because obviously when you travel you’ve got to factor in, “Well where are the hospitals in relation to where I’m staying?” Obviously, the travel insurance, there’s a lot of things to sort of factor in, “Is, was the hotel, like is it on a hill, what’s the immediate surroundings like?” You know there’s a lot of things that I need to consider before I can agree to sort of go, go somewhere. We decided that we wanted to go on holiday somewhere and it took a long time to sort to settle and agree on a place to go.

I went away to Australia, for a couple of weeks, which was I guess the big test, and that you know, that did require a lot of planning, staying in places where, that was accessible. I stayed in hostels, I tried to make it as cheap as possible. I requested, because obviously you’ve to share in hostels, I requested bottom bunks. Most places did do that.

One place didn’t and the top bunk was the only one available and that was incredibly difficult, and I hurt myself trying to get up and down that, but the following day one of the people on the bottom bunks left so I took her bunk as soon as soon as I could, just threw everything off the top of mine [laughs] and just so I could, because otherwise I don’t know how I would have sort of managed that.

And again, in terms of Australia, where I went was quite flat? I went to Perth, that’s relatively easy to navigate, and because I was on my own, I could take my time. I wasn’t constrained to anyone else’s schedules, I didn’t have to do things that I didn’t want to do, it was all at my own pace and I think that’s what really helped me enjoy it a bit more because, after a couple of days with my friend in Ibiza I think we wanted to murder each other, because it was how we sort of are.

So yeah, I think one of the things I found difficult was I’d requested sort of, assistance with the airlines. So, I flew with the same airline throughout the whole trip so, because I went to different sort of cities and at Heathrow, you know, when I first left it was great, there was no issues. When I got to Perth, I, it was just a case of, that judgement of “Oh, right,” like, they look at you, see you’re young and be like, “Oh, why do you need help?”

Yeah. Well I mean if people are diagnosed with cancer there’s a lot of support for them and, with heart disease there’s a lot of support and money going into that, and there’s lots of money going into various things but then lots of things get missed out and I, for me that, I find that quite infuriating because in my life is being told things like, “Oh, well at least you can still do that, at least you can still walk, and at least you’ve still got your legs, and at least it’s not cancer,” and things like that, and that’s not helpful for people to say either because, yeah, you know, it might not be cancer but I’ve got a disease that could kill me.

I don’t know anything about it, that, to an extent that can make it worse because I don’t know if I will live, I don’t know if I will die. It leaves you with a lot of anxieties around that and there are things that people do say because they think it’s a way to cheer people up and make them feel better or, “There’s always someone worse off than you,” and it’s like of course there’s always someone worse off than us, there’s also people a lot better than us. It doesn’t take away what we’re currently experiencing, and I think a lot of people will try to be helpful but they’ll find that actually it’s not at all helpful, it’s, it’s making things worse. You know we want to feel validated; we want to know that, people just should accept that we’re struggling.

We don’t, we don’t necessarily need people who don’t have the, the expertise to try and fix things for us. Just listen you know, acknowledge when you can’t help.

So there’s like a resource centre nearby you know, obviously run by the health board and there’s like sort of a little gym area in there, so he helped me sort of build up some of that, that fitness in the muscle that I’d lost and because I’d gained a lot of weight? When I, when I was unwell I probably lost about four or five kilos, but when I started the steroids I put on about twenty – maybe a bit more – kilos and that’s a lot of weight and obviously it left me feeling very self-conscious, because suddenly I’d gone from being a nice size to a size I wasn’t comfortable in. It wasn’t physically comfortable either because the steroids cause a lot of sweating, and that was very difficult just sitting there literally feeling that sweat running down your back and knowing that there’s nothing you can do about it you know.

The tiredness and the fatigue was difficult. Like when I was in uni I’d have to sort of put my head on the desk partly because I felt light-headed but also to, just to shut my eyes for two minutes because like I was struggling because they were long days as well. Hopefully the lecturers didn’t [laughs] notice that. I mean I didn’t fall asleep but I just needed to sort of try and shut down my body a little bit just to sort of relax.

I was also diagnosed with osteoporosis as well, because of the steroids, so that obviously adds extra problems you know, and then they’re like, “Well you need to do weight bearing exercises,” but then when you can’t walk it’s very difficult to do that you know so.

What did getting the diagnosis, what did that give you that you hadn’t had before?

A sense of relief because I’d been back and forth to doctors for so long, been referred to different consultants, no-one would tell me what was wrong, it felt like no-one was interested in finding out what was wrong, and it was like, “Well finally there, there’s proof, there’s evidence and I’m not going mad, it’s not inside my head you know, I was right about everything.”

And I think as well like when I looked at my hospital notes and things and before, I remember before one of my appointments in [the major teaching hospital in England] I’d asked one of my, the respiratory registrar to go over all the blood tests with me so I could sort of obviously have a more informed conversation with the rheumatologist and he was able to go, to like my first lot of blood tests in 2008, and there was a lot of signs that things weren’t right, but they were never followed up.

The consultant at the time, like I said, like he didn’t really seem bothered, but things like my ESR blood test, which is a test of inflammation, was really high and I think they did try doing another test, but I don’t know if they took enough blood or there was something wrong with the sample, but then they never tried again, so there’s no, sort of no record of that.

My CRP, which again, is another level of blood test to sort of test inflammation and can be a sign of infection as well has sort of always sort of been consistently high? And above normal.

And when I was sort of misdiagnosed for the first time they done things like rheumatology screening to make sure there was nothing like that because I’ve, there’s rheumatoid arthritis in my family? So, they checked things like that. But then the generic sort of tests like ANA, which is sort of a generic rheumatology type sort of you know, not specific to rheumatology I don’t think, but is a sign of you know, things aren’t right – that was positive?

So again, there were lots of different signs that things weren’t right but no-one was putting the pieces together? It was just always as if everything was very separate. And then because of obviously I’d had this diagnosis of a blood clot, it was all centred around that.

And then, so I think it was like the Monday I went into the hospital, the scan was on the Tuesday, and it was the Tuesday evening a doctor came to just say that it wasn’t a clot. And then on the Wednesday they’d referred me to respiratory and no-one came to see me until the Friday? And [laughs] the doctor that came, he’s a registrar and he was really lovely. He explained that you know, “We think it might be something called vasculitis? We want to do some bloods tests. We’re not going, we don’t want to say it is that, but we don’t, we want to check that it’s not?”

So again, he was sort of relatively calm, and they also gave me some treatment for an infection in case that was sort of the cause as well. On the CT scan it showed sort of, nodules on the lung, what’s, something called a cavitated lung infarct? Which I think is basically just a gap in your lungs maybe? I’m not entirely sure about that, and granulomas? So initially they thought it was, GPA? Granulomatosis with polyangiitis I think that is? So, they were doing things like ANCA blood tests at that point, which obviously had to be sent away.

So he discharged me, he was like, and it was fine you know, I did a little bit of research on vasculitis and I went on the vasculitis web page and there was a couple of things that I felt could be relevant you know, not just that particular one, that I thought could be related, what I could be experiencing, but I didn’t do too much research at that point because I didn’t want to get too bogged down by it.

And then a couple of weeks later I had a phone call from, well it might’ve been a week or two, I can’t remember, I had a phone call from the registrar and he was like, “Oh, we want you to start some treatment so we’ll need to be, to come down to the ward just to sort of pick up a prescription and things.” At the time I was working in the hospital anyway. So, I was working in A&E with a charity, so I was on shift when I went down. It was one of his colleagues, he was off, so one of his colleagues met me and she took me into a room and she was like, “Okay, this is what we think you have,” so she gave me a document on Takayasu arteritis, which was printed off the vasculitis page, so essentially I’d already read that stuff, but that was the information she gave me, she couldn’t really say much about it herself.