Tom is 30 years old and was diagnosed with ankylosing spondylitis in just December of 2020.
Alex chats to Tom about how it felt to receive a diagnosis after years of pain, often put down to basketball injuries.
He also shares what the future holds and what adjustments he’ll be making as he moves forward with life with arthritis.
If you have questions about your condition, you can visit versusarthritis.org for more information.
[Alex]: Welcome to season one of the Versus Arthritis podcast. My name's Alex and throughout our first season here we're going to be speaking to different people with arthritis about their experience of perhaps one of the main things they all have in common - diagnosis. We know that diagnosis can bring everything from tremendous relief to some real mental health challenges. And we want to share as many stories as we can. We hope that our brilliant guests can use their stories to empower and support you in your own journey, whether you've just been diagnosed or you're reflecting on how things have changed since you were first told you have arthritis. Today I'm going to be speaking to Tom, who's 30 years old and was diagnosed with ankylosing spondylitis in just December of last year.
[Alex]: Alright Tom, hiya! Welcome to the podcast. Thanks for coming on.
[Tom]: Hi there!
[Alex]: Just a little note for the beginning of the episode, Tom's been kind enough to come on the podcast to talk about his experience, but we do actually know each other from the real world outside of this podcast. So that may come up, but just an important one to note at the beginning. So, Tom, before we get started, why don't you tell our listeners a little bit about yourself?
[Tom]: Well I'm 30 years old and I live in London. I'm studying for my PhD in psychology. My main hobby has always been playing basketball, which is how we both met in college. And I guess for this podcast, the most relevant piece of information about me is that I was recently diagnosed with ankylosing spondylitis.
[Alex]: And when did you get your diagnosis?
[Tom]: Very recently actually, back in December, so about four months ago. But I've been experiencing back pain, sort of, for the best part of a decade.
[Alex]: So we'll get onto your reaction shortly to that - about getting a diagnosis - but what was it like when you experienced that pain sort of interrupting your day-to-day lifestyle and, like you said, basketball and things like that, for when you had those sort of symptoms, but you had no idea what they were?
[Tom]: Yeah it was very difficult at times. I was always tired and prone to pain and injury in basketball. And I blamed that a lot on who I was as a person, rather than anything physical. So I would think I was weak or lazy instead of the reality, which was that I was fighting against some really difficult symptoms. And, so, before you know what's going on it really shapes who you think you are without you even realising it.
[Alex]: You know, we played basketball together and we've been around the same circles and there is this kind of really unhealthy attitude of having to, you know, work through everything and it being perceived as weakness to, I guess, listen to your own body.
[Tom]: I think ankylosing spondylitis kind of confuses things too because actually one of the best things you can do for it is exercise. So staying active, in some ways, was probably helping me. But in other ways I was feeling pain that I just attributed to the sport. So it was kind of a weird mix.
[Alex]: After all this time not knowing, what was it like when you were diagnosed?
[Tom]: That was a bit of a rollercoaster really. I'd gone to a physiotherapist about a number of, sort of, basketball related injuries. So, you know, my thumb and shoulder kept on dislocating and I had some problems with my knees and stuff like that. But I was only allowed to get two areas scanned at a time, or investigated at a time. So I asked for a scan on my thumb and my back, since I've had this back pain, sort of, every morning for, well, I've had back pain for like the best part of a decade, like I said, but you know, every morning consistently for about five years at that point. And I thought they were just going to say that my back was fine and I was just, you know, too tall and spent too much time at my desk. But the scans ended up coming back and showing that the joints in my spine were inflamed and that parts of my pelvis had fused, which led to the diagnosis of AS. Yeah. So, at first it felt like a real relief and I finally had an answer for why I was in pain and why I often felt so tired. And, all those things that I was saying about how it shapes the way that you think of yourself, I started to rethink a lot of them, which was really helpful. But shortly after that it started to set in that I would be dealing with this for the rest of my life, and the knock-on effects it would have. And I definitely went through a low point for a while after that as a result.
[Alex]: Thank you for sharing that. I suppose it's an ever-changing thing - the reaction to diagnosis - because you're going through a lot of different changes and processing those. It's now four months since your diagnosis, how do you reflect on how you felt in those first couple of weeks?
[Tom]: So in the first couple of weeks you're kind of optimistic, in that you feel like you've found some answers. But also you're at sort of the point where you have the least idea of what actually... you know... how serious the condition is and what's actually going on. So I obviously did what most people probably do, which is start reading a lot of stuff on the internet, and that kind of, I guess, is where... after a couple of weeks it started to transition from the sort of relief, to the sort of more doom and gloom side of things. You're at risk of reading too many, sort of, horror stories.
[Alex]: Yeah. So it's sort of a 'paralysis by analysis' after a certain point, but I think it's really interesting for listeners to hear that you will hit these different points. I think that brings us, sort of, nicely onto the next bit, which is the good elements of... I guess... going on the internet and finding out more. And a lot of people do find themselves in the situation that you found yourself in, if that's the right way of putting it? How have you found it - talking to other people with ankylosing spondylitis?
[Tom]: Yeah. I guess that was, you know, the next phase in that I'd spent probably too much time reading stuff online and getting buried in that. And I eventually wanted to just speak to somebody, you know, in person to understand what their experience was. And so I actually contacted a charity called NASS, which I think stands for National Ankylosing Spondylitis Society, but I might be wrong on that.
[Alex]: Yeah it does.
[Tom]: Yeah and I think that was really helpful. I think generally, for anyone with this kind of problem, it can feel incredibly lonely. And that's because people around you won't be able to feel what you feel and explaining the symptoms just doesn't really do it justice. It's a kind of... it's a different type of pain and, yeah, it's not like... sometimes it feels a bit like you've been in the gym too long or played too much sport, but it's the stiffness that gives it this different quality. And so that's where speaking to people with ankylosing spondylitis can help. They'll understand what you're going through. And with all the uncertainty that comes with receiving a diagnosis, I found it really helpful to hear from people - particularly around my age - who are sort of still leading relatively normal lives and have a positive stance to dealing with their condition.
[Alex]: Yeah, so you mentioned coming to terms with the uncertainty of things. I think that's probably something that a lot of people struggle with. Could you expand on that?
[Tom]: Yeah, so for me personally, I had plans of moving abroad, starting a family, and progressing with my career over the next, sort of, few years and the diagnosis, like, really made those steps feel less clear. So, for example, like an obvious one would be that if I move abroad, will my condition be covered by the healthcare system, wherever I end up? And it is really tough, and it does force you to sort of zoom in and take things one day at a time. But that, I guess, isn't necessarily bad or... yeah that's not... but that isn't necessarily a bad thing.
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[Alex]: Okay. Now this is the final segment Tom. We're doing this on every episode. It's always going to be a bit different, but it's all about asking our guests to reflect on their diagnosis and give any tips and advice. So, that really practical stuff. So you're perhaps a little different to some others I've spoken to - who've been diagnosed a long time ago - because this is also fresh in your mind. And as you've been saying, it's changing all the time. I guess I'll ask you two questions, but the first is 'what advice would you give for somebody still waiting for a diagnosis or what's your reflection on that?'.
[Tom]: Yeah, for those that are still trying to work out what's wrong, I'd say that you shouldn't try to convince yourself that things are okay - and that it's just you. That's kind of something that I did for quite a few years and with something like ankylosing spondylitis it's, you know, crucial that you catch it early because of the fusion that can occur if you leave it over a long time. Yeah. So, regardless of what's causing the pain, it has to be treated.
[Alex]: Yeah. I think what you say there about recognising there is something, but then actually... you know, seeing a professional about it and dealing with it. Because from my experience with you, if you don't mind me saying, we've spent a lot of time hanging out together as friends and it's sort of, it's very normal. Because I know you're somebody who knows their body very well, takes a lot of pride in their kind of... always has taken a lot of pride in your physical fitness and sort of knowing your body in that way. I picture you with a foam roller or doing a yoga pose to relieve some pain or stay limber in some way. But actually I think, you know, it's really important what you're saying - the concept that, just because you know there is something, that maybe that isn't enough.
[Tom]: Yeah, I think you're right. Like, I was doing quite a few things that I should have been doing anyway, if I'd had the diagnosis, like staying active and mobile and, you know, doing yoga and spending lots of time on a foam roller. But there's a different side to it that the diagnosis helps. And I think that's kind of like what I was alluding to earlier with the mental side of it - in that I didn't understand why I was always tired. And the pain, I could try and tackle that with yoga or whatever but the mental side of it was difficult. Like another thing that lots of people with AS experience is; drinking alcohol, you know, will exacerbate symptoms. So, often I would go out and, you know, have a drink with my colleagues or friends, and the next day I'd be sort of really paying for it. And I wouldn't understand why. And I thought that's what, you know, everybody else would be going through. But you know, it wasn't, it was unique to... I'm talking about like one or two drinks here as well (not a heavy night). So yeah, I think there's certain things that you'll be able to react to, even without having a diagnosis, but there's all these extra things, like the mental side, and then the other sort of knock-on symptoms that you'll learn about once you get your diagnosis.
[Alex]: We are actually still in a lock down as we're recording this, so it's the middle of March, and your'e in a situation that many listeners will potentially have been in, in that they won't have actually lived with their condition in a non-COVID world. How are you feeling about, sort of, a semblance of normality and perhaps some of the routine from before returning? And then I guess, in a more practical sense, are there aspects of the routine that you already know you'll be changing?
[Tom]: I think the big one for that is access to healthcare. I got diagnosed in December and I've never seen my rheumatologists because of COVID. I went in person, obviously, to get my scans, but I've never actually seen a physician about this. I've been on... I think I'm on a waiting list for physiotherapy, but that's obviously going to be incredibly long now due to, you know, the strain on the healthcare system. And I'm not going to see my rheumatologist until... I think May. So I have to go, you know, I have a 20 minute conversation where I find out about this diagnosis and all the stuff we've been speaking about, mostly, I've, you know, had to go through by myself and, like I said, with my friends and family, you know, for five months before I even end up getting to speak to a physician about it. So yeah, it's pretty tough. And I imagine there's lots of people in that situation.
[Alex]: From what your experience has been so far, if you're speaking to Tom in December, what advice would you give?
[Tom]: Yeah, so I think the first thing is, for anyone who's just received a diagnosis, unfortunately the hard work doesn't stop at that point. And so my advice would be to sort of pace yourself accordingly. There's this temptation when you first find out that you've got this diagnosis to then, you know, amp everything up - book in a physio, start doing two, three hours of stretching a day, completely change your diet, look into medication - all of these different things. And, yeah you do risk sort of overloading yourself and, you know, you don't want to burn out straight away. It's going to be a long journey after that point. So I guess my advice would be to pace yourself. And secondly, I think the other important thing is not to let yourself get isolated. I think, like I said before, the condition is hard to explain to other people and, you know, one day you feel fine, the next day, you know, you can feel terrible and that can make you feel quite lonely. So just... I guess the other thing is to make sure that you don't let yourself get isolated, make sure you speak to somebody - whether it's a friend, family member or a professional. Yeah.
[Alex]: Thanks so much, Tom. That's great. And thanks so much for sharing your experience, I'm sure it's not easy. And thanks so much for coming on when you are still processing so much. But, yeah, that's it. I hope to buy you a lime and soda very shortly to say thank you. But, yeah, thanks Tom.
[Tom]: Cheers Greenan, talk soon.
[Alex]: Before we conclude the episode, I just wanted to let you know what to expect from the podcast as we go on. Throughout season one we'll be speaking to more people with arthritis about their experience of diagnosis. As we move forward we're going to be speaking with more of you about the topics and experiences that matter to you the most - from exercise and movement, fatigue, pain, lifestyle changes, sex and relationships - so many aspects of life. Subscribe to the podcast for all of that and more. Thanks so much for listening. We'll catch you soon.