Yes, I think first of all, I think when you’re in the diagnosis stage it’s very important to listen to your own opinion. While doctors and you shouldn’t disobey doctors anyway because they are medically trained and they understand it, you know your body better than anybody else. No one else can tell you what’s happening in terms of how you feel. A doctor is able to diagnose based on what you feel. So I think it’s very important to be persistent, you know, don’t take a doctor’s word as a hundred per cent necessarily. Maybe later on when you’re diagnosed with treatment, you know. That’s more important but in terms of diagnosis work actively because you yourself will be able to differentiate between arthritis and just bit of a strain with a muscle. There is a big difference and you will notice it. There is there’s no kind of foggy area. You will know.

In terms of treatment and the future, I think you can be a lot more positive now. I mean in before last ten twenty years, all they had was anti-inflammatories and maybe the sulfasalazine and past that, there wasn’t much there. So a lot of people were left in a bit of a situation with worries about the future and this, you know, some people might see this as just typical picture of a man slumped over with AS because of the fusion process but that is very rare now. That hardly ever happens. So don’t worry about that because this new TNF treatment is very effective and for people with AS specifically and it brings promise of such a, you know, of a future that’s hardly adapted anyway to arthritis. So people shouldn’t be worried in that case specifically.

With the library I mean there’s a restriction if I want to work with my friends. I mean there are facilities for me if I’m on my own like there’s special rooms that I can use but in terms of working together there’s the obvious, you know, restrictions because they don’t have the access to the things that I need in the general area. But in terms of jobs, the summer job that I had was in a fish and chip shop back home and that involved standing on my feet for nearly, you know, eight to ten hours a day and that now would just be impossible. You know, that couldn’t be done because I find it very difficult to stand on one place for more than kind of fifteen, twenty minutes. So in that respect yes, but with I mean with respect to jobs now, you know, with things like customer services and, you know, serving, that would be difficult because it involves, you know, standing and walking about. But in terms of the future, I’m not too worried about it because the kind of work I want to go into doesn’t really rely on that too much now. There’s a lot of kind of research and stuff and that doesn’t that doesn’t, you know, require that. It just requires you to, you know, have knowledge in the area and that’s, you know, my mental capacity is not affected by AS [ankylosing spondylitis]. So I don’t see it as a problem in the future but currently, it is a problem.

I mean with my friends at home, before I had the disease I was quite active. I used to play golf a lot but not with my friends at home, so I kind of got to know people at the golf club when I played with them and forever when I when I was playing golf I was always saying, Oh, come and play. it’s really good. it’s really good And they said, no, they don’t want and it’s not until after I got the disease, they go, quite recently they’ve started to play.

So now they want to play I can’t but when I wanted them to play, they wouldn’t play.

Okay.

So I guess that was one kind of obstruction but apart from that, unless it involves sports there’s not much restriction with the exception of going out, you know, clubbing. So those two things, they’re a bit of a hindrance but everything else is okay really.

The kind of… Do you generally feel like you’re missing out on anything or?

Yeah, I try you see I try to convince myself that it’s not much that you’re missing out on and it they understand that, you know, it would be nice just to be able to do things that they do without having any kind of obstructional barrier because, you know, you get you get access to experiences that you wouldn’t otherwise have. So and it’s on those things that, you know, friendships kind of strengthen and bonds create and but a part of me regrets it but I’d like to think because I’ve known those people for as long as I have that it’s not much of an issue to them. So that that’s my kind of solace in that really so.

Yeah, I think you, you know, really I have thought about that a lot actually. There are a lot of aspects to it. In terms of relationships, you know, a relationship means, you know, close proximity to an individual for long amounts at a time, you know, doing things together and part of me doesn’t want to put someone else through the strain that I have with this illness. Although they don’t have the pain, they have the emotional, you know, ramifications of being with someone and I’m not keen on putting someone else through that when they don’t have to be. Of course, people like family are automatically included because they’re your family and friends and so on but a kind of aspect, until it can be, until I’m given an efficient medication that confirms with me that, you know, that wouldn’t be a problem, it does put me off slightly. And in terms of children, I think it’s the same kind of reasoning but also AS has a strong genetic factor and the idea that I could, you know, bring a child into the world but it would have to suffer the same thing, I would I couldn’t live with myself with that because I know how difficult it’s been and to have put someone else through that unnecessarily, no I couldn’t I just couldn’t live with that, no.

Yeah, a huge side. I mean there’s so many aspects. There’s the emotional response you have to being first diagnosed. That can be quite acute, quite intense for a short period of time. And I think it’s really important to have support around you whether it be friends or family because trying to do it on your own is at first really difficult, but there’s no need for it because it doesn’t make you any stronger. Having done it by yourself, it just means that you’ve had to go through a lot of suffering, well, more suffering than you’d have needed to for no reason. So I think having that support around you, whether it be, not only family but having really good relationship with your doctors about any concerns you have is really good. There are time that if I’m going through a good time, so there’s not much pain, there’s, you know, coming out of a flare, I usually am quite positive, quite optimistic about the future. But then, if I go through a flare or, you know, something, you know, something that increases the amount of pain I have, quite quickly that can be completely reversed. I can become quite depressed, quite I have a quite short term view and think, quite a short term view in thinking, you know, I can’t live like this. I can’t cope like this But it’s a knock on effect because if you have pain, you know that your work is going to suffer. You start panicking about work. You start panicking that you can’t do as much with friends. So it’s a complete knock on effect and I think it’s really important to have a think through what the pain has in terms in affecting your life before like the emotions run through.

Do other people support you emotionally?

Yes, mainly my family. I don’t like to tell my friends about it, not that I’m embarrassed about it, but firstly, I don’t blame them for this, but I don’t think they really understand my condition such as I didn’t before I had to start researching it and things. I think for them, they just think I get a bit of pain sometimes, it’s nothing much but and also I don’t really to talk to them too much about it because, while they might be sympathetic, I don’t want to burden them with the obligation to help me and support me, you know. If they want to do, that’s fine, if they want to do so, but I don’t want to ask them for it because I know my family would do that if I wanted them to. But as I say, my family have been incredibly important and they’ve given me the kind of motivation to push through. I mean there were times where, you know, doctors weren’t listening and they gave me, you know, the support just to, you know, keep going and keep pushing because in the long term, it’ll be beneficial. So family have been absolutely fundamental to the fact that I am doing what I am today and I’m here today. Friends, not so much but that’s kind of my own decision, not theirs.

Up to the point of when I was eighteen, nineteen, I was a completely normal teenager. I was exercising. I used to run quite a lot and it wasn’t until then that I started to notice some symptoms of something I didn’t realise or didn’t know what it was, yeah. It started off with some neck pain, actually, and it started to get really stiff but well, I just thought it was growing pains or whatever, so I just ignored it. And then a couple of months later from that, it started to move so including my neck it also moved to the bottom of the spine. That would get quite stiff and over time, hands and feet and it was at that point I realised that was not really normal for growing pains. So I went to the doctor and they did the initial test for ankylosing spondylitis because automatically it triggered something and they did blood tests to check for inflammation and an x-ray to see if there was any fusion that’s characterised with ankylosing spondylitis.

And they were both they were both negative for any signs so they thought, okay, maybe it is just growing pains. So they sent me away and just to see how it goes and if it got any worse, come back and it didn’t get any better. In fact, it got quite worse, not particularly that it moved anywhere but it just intensified and to the point where it was actually starting to interfere. I couldn’t cope normally. I couldn’t function normally and so I went back and because they’d already done the test for AS they weren’t as keen to go down that route. So they started to go down different routes, maybe it was nerve pain, maybe it was something else that they hadn’t realised yet. So, they were they sent me to a consultant at a hospital and they did various MRI scans to see if I’d maybe slipped a disc in my back that could have triggered pain to other parts of the body.

Okay then and in terms of drinking alcohol. Is that also moderated?

Yes, very much so. I don’t at all. I try not to not that any of my medications are will counteract with it, I just think that with my fatigue as it is, alcohol tends to have the effect of exacerbating that even more so and when I wake up in the morning, the pain can be quite bad as it is, so if you have a hangover on top of that pain the combined affect is not very good. And it’s not very good for the wellbeing because if you feel even worse you know it’s going to make the pain even worse, so accelerate I think. So I try not to but, you know, I don’t forbid myself. it’s not a strict rule. If there’s somebody’s birthday, I’ll maybe take one drink just to just to be social because I don’t I don’t want to stick out like a sore thumb and people to try and change the way they are about me. But generally, I don’t choose to drink if I don’t have to drink.

Okay then and that’s not something based on doctor’s advice. This is a personal choice?

Yeah, completely person choice because while I’m on sulfasalazine, which is a type of, it’s called a disease-modifying anti-rheumatic drug but there’s another form called methotrexate and that does interact with alcohol quite violently but with the medicine that I’m on, it has no affect with alcohol at all. I just choose not to.

Okay and being a university student, what’s that like?

it’s strange. it’s not as bad as last year because people tend not to go out as much because of the work they have to do and because the increased workload being, if you have a day off because of the recovery of the night before, you know, you start to mount up work on top of what you already have. So it’s not as common but I find it, with my friends that I go out with, we can maybe go to the pub occasionally and I don’t have to drink and that. I just have to, you know, I can take a soft drink or whatever. So it’s not, it doesn’t really cause much of a problem and quite a lot we go out eating. So that doesn’t involve drinking either. So it’s not so much as a problem for me but I can see it being a problem for someone with friends that who enjoy like drinking. That could cause, you know, quite a problem because if they like to go out drinking for a sustained amount of time, you know, you might get left behind. So I can imagine it’s a problem for some people, but for me in my situation it’s not that much of a problem at all.

As long as I’m not in a severe flare I try and exercise as much as I can because for people with AS exercise is absolutely crucial. That’s not to say that people must go and start running. it’s the use of low impact exercise, so it’s swimming, if you’re in the gym using a cross trainer, things that don’t enforce, you know, high impact to the joints. So that’s really important and also the stretching a lot and doing different mobility exercises, such as, even taking deep breaths because if you don’t take deep enough breaths, often enough, you allow the little joints in the rib case to fuse and that can really become a problem later on. So it’s a matter with AS, if you if you do not move you’ll lose, you can you can potentially lose the movement of different joints. it’s very important to keep active. Despite how much pain you’re in, you just need to keep moving.

And who pays for this exercise? Is this, do you pay?

Yes, I have I’m just a member of a gym but, you know, it’s just something that you have to. There’s no substitute to doing anything like that. I am offered physiotherapy services at the hospital that I go to and they just keep it, they just keep on track how my exercises are going, if there’s new problems or any adaptations that need to be done. But in the sense of financing the whole exercise, it’s mainly just joining a gym.

I think it depends; it kind of depends upon what you’re doing that day. I try and think of it as when you go to sleep you hit, you kind of fill this metre you have of energy okay and I if you do too much through the day, so if you do a lot of activity or a lot of thinking or writing, you use that energy up quite a lot. I think that’s the same for anyone with or whether without AS but I think for someone like me with AS, the metre is slightly smaller so it doesn’t allow for as much energy. So if you conserve that energy I think you could maybe go quite a long time. You know, you may be able to not feel tiredness until quite later on but if you do what I would normally do, someone of my age would normally do, I’d be very tired very quickly.

Yeah, well.

Yeah.

Thank you. So it affects university?

Yes.

What else? What else does it affect, this fatigue?

Because I mentioned earlier that exercise is very good for AS but it’s difficult because, although you’re trying to help yourself with the condition, if you exercise you use quite a lot of energy and I tend to try and exercise in the morning before I’ve got things to do during the day. So that means you’re using quite a lot of energy before your day’s even started. So it can affect your ability to do certain tasks later on. Not so much in actually doing them, but your performance within them, so they might not be as well as you’d like to have done them.

I try to eat well. Now when I say well, I don’t mean eat a lot. I try to I try to eat healthy because, although people that are tired might look for a quick fix, so such as a caffeine fix or a chocolate fix, I know that it’s very short term and within an hour you’ll have a huge crash and you’re often worse off than had you not ate anything at all. So it’s about eating sensibly. Not eating, you know, just vegetables, you know. Try and eat good meals, you know, and don’t leave too long between meals because if you leave, if you have a really early breakfast and a really late lunch, that can affect the performance for the rest of the day despite how much you eat. I try to take a lot of vitamins. There’s a few that, I can’t remember which vitamin, but some vitamins are quite good at making you energetic and I try to, there’s a few a few drinks. I don’t know what they are, but you can get these effervescent tablets that you drink and you mix with water and, you know, they can make you a bit energetic.

So I was kind of where I started but with just this same amount of pain, which was quite annoying, but, so at that point, I decided maybe I should go to a different doctor because they they’ve kind of got an idea of what they think it is already. So I decided to move GPs and the first appointment at the new GP I told them all my symptoms, how long they’d last and quite fortunately, he’d just come back from a ankylosing spondylitis seminar and everything that I told him he thought was absolutely characteristic. I thought that was quite lucky in a way and he gave me a consultation request form to go to hospital to see the rheumatology department this time. And they were quite sure that they did tests. The blood tests were still negative, which was quite frustrating, but when they started to look at different aspects of the MRI scans and the new x-rays they could start to see signs and that was when I started to get a diagnosis of, it wasn’t originally ankylosing spondylitis but it was the more general term of spondyloarthropathy, which includes a lot of different inflammatory arthritis and they went on from there. And they just started, they started to treat me as if I did have AS because the treatment was the same for ankylosing spondylitis.

The musculoskeletal specialist gave a physical examination, so he just tried to find where places were tender in my neck and in my lower back and they did an MRI scan over my neck where the pain really started. But with rheumatology it was a lot different. While they still had tests in place of the blood tests and scans they had they weren’t so much concerned with physically finding where the pain was because they knew they could find that from scans a lot more and they knew it wasn’t just a mechanical problem. It was an autoimmune problem, so really having a physical examination was not as useful.

Did they tell you what was going on during the examinations?

In what sense?

Well, did you know what the consultant was looking for?

Oh, yes, they told me that they were looking for signs of inflammatory arthritis because that is the main kind of arthritis that would be characterised with younger people as opposed to osteoarthritis.

Okay then and do you think that what they deal with it well? I mean were you happy about the kind of advice that you were given?

Yes. I the rheumatologists at the hospital were really helpful. They tried every way possible to try and confirm a diagnosis as quickly as possible because they knew with the nature of the disease a long diagnosis is inevitable. But it was just making sure that that diagnosis period was as short as they could but in the kind of constraints.

So you’ve mentioned some of the tests that you had. I was hoping perhaps that you could talk about more about the kind of tests you’ve had done, a kind of general summary until we got to your diagnosis.

Yes and so they had a look for inflammatory markers in the blood. they’re usually present if there is inflammation there and they were always negative for me so that was the main reason why doctors seemed to go away from the idea of AS because it is an inflammatory illness and if there’s no sign of inflammation then you wouldn’t suspect it. X-rays, they were they were to look more for signs of fusion that would come around from AS but they were obviously no use because it was relatively early onset so there would have been no time for that yet.

And also I had contrast MRIs which were kind of the breakthrough for my diagnosis because they were able to kind of highlight on an MRI so they would just light up when you see them and it would just became clear to doctors that this was what was happening. There was inflammation.

Yeah, I am aware predominantly of NASS and, National Ankylosing Spondylitis Society and that’s a UK based support group. That’s why I focus a lot of my attention with them because it’s much more closer to home and I can relate to it more but there are there are a lot of strong groups in America. There’s, I think it’s called the Kick AS Society in America, which is directly involved with ankylosing spondylitis but there’s a, I think it’s called the Spondylitis Society of America, which deals with the broader spectrum. So that being the all, I think it’s called, All Types of Spondyloarthropathy, which is quite a long word, but it involves, it takes into account AS, psoriatic arthritis and other types of, so it’s quite general in that respect. So they can offer quite a lot of general advice but in terms of AS, my mainstay would be NASS in the UK because they do a lot to bring the awareness of AS, not just to the public, but to government because there’s a lot of problems with the diagnosis like time from the onset, which is about eight to ten years I think. And the funding for the TNF, which is which is potentially depriving a lot of people from medication that could change their life and halt progression, you know, entirely. And also, it’s the best thing you can get to meeting people with AS because they have forums, which you can talk to other people and they can share experiences such what they do to cope with their pain, how they find different medications, how to deal with the side-effects. More general things, talking about maybe family life, working life, so it’s very it’s very good for support and the people that organise NASS also they’re easily contactable. it’s not as if, you know, they’re in a corporation high above and they’re uncontactable. You can send them an e-mail and they’ll reply to you and it’s very open and transparent. it’s very nice.