Episode 51 Charlie Robards: Living with Axial SpA

Debbie: Hello and welcome to Inflammatory! with Debbie,

Katy: and Katy.

Debbie: Today we’re delighted to be joined by Charlie Robards who was diagnosed with AxSpA at 18. Axial spondyloarthritis is a type of inflammatory arthritis, and it affects around one in 200 adults. His dream was to become a professional sportsman which I can totally relate to, that was my dream as well. But as with life with IA has shown, it never goes to plan. And Charlie, I think is it okay to say you’re slightly older now?

Charlie Robards: Yeah, yeah, sadly I am. I’m 50 years old now, so I’ve had the disease for 30 odd years.

Debbie: Wow. And you’ve had time to reflect on your diagnosis and your whole journey with IA and how it has shaped you into the man that you are today because you’ve written a book about it, which we can talk about later as well. But to start off, can you just take us back to your symptoms and how did your journey to diagnosis unfold?

Charlie Robards: Yes, absolutely. So, I was fairly lucky in the sense that my diagnosis happened quite quickly. It was around about the age of 18, 19. I went on a rugby tour to Australia, played through the tour with tonsillitis and came back and started to experience a series of very strange symptoms. stiff lower back, felt like I was running a temperature, everything clicking, sharp pains in the rib. Thought nothing of it, went to university and was trying to at the time play professional cricket but just really couldn’t get on with it. Some days I’d feel good, some days I’d feel really bad, back spasms, all sorts of things. And then I finally managed to get to see a specialist in Birmingham on the recommendation of my girlfriend at the time actually and he diagnosed me with AS which at the time, 18-19 was pretty tough to take.

Katy: And had you heard of inflammatory arthritis or AS before your diagnosis?

Charlie Robards: No, not at all. mean, it transpires that my grandfather had Axl Spar and he had some treatment and suffered with it, but I wasn’t really aware. It wasn’t something we talked about as a family. So yeah, I’ve got the gene, but also, I have that sort of foreign body that sort of triggered off the reaction.

Debbie: So, did you actually see a GP, or did you just go straight into seeing a specialist?

Charlie Robards: I went to see a variety of people. I was down at university. I was down in Kent, which is miles away from my home in Rugby. And so I tried all sorts of things, osteopaths, physios. Obviously, the doctor on site at the university didn’t really know what was going on. I thought it was just the boozy lifestyle. But luckily my girlfriend at the time, she was an Olympic skier and she knew this rheumatologist specialist and she said, I think you should go and see him. So, I was very, very lucky because I know a lot of people, it does take a long time to diagnose. And looking back on it, I probably did have it at a younger age. I remember always being quite stiff before sport and after sport. So, there might’ve been some signs that I’d had it earlier.

Katy: How did it impact you initially, sort of being 18, 19, just started university? How did your life change from that diagnosis?

Charlie Robards: Well, I was absolutely devastated. mean, I just remember the guy saying to me, what do want to do as a professional? I said, I’d to be a professional cricketer. And he just shook his head and went, I think you probably need to think of something else. So, I left that with my dad driving back, pretty demoralized. I suppose I went through all the emotions, bitterness, frustration. I fought it for a long time. And then, you know, sort of realized that this was something I was going to have to live with.

Debbie: Wow.

Katy: Yeah.

Charlie Robards: I was better to try and find ways of living with it than try and beat it, if you know what I mean.

Debbie: Yeah, and did they put you on medication straight away?

Charlie Robards: Yeah, so I went on a slow-release anti-inflammatory straight away and I’ve been on one ever since really. And I do self-inject with an immune suppressor and that started probably 10 years ago. I was finding it just impossible to walk down the stairs after cricket matches on a Sunday. So that’s when we took the treatment to the next level and then, which has been very good actually. It’s given me that ability to keep playing sport.

Katy: Yeah. Yeah. And I guess sports has always been a huge part of your life. How have you managed to maintain that throughout diagnosis and the different treatments?

Charlie Robards: Yeah, well, I mean, I’m sports mad I love my sports. I’m very competitive, so I’m not one to give up. I suppose sport sort of almost gave me the medium to just keep going. It taught me how to be resilient and, you know, that determination to, not give up. So, I’ve played to the best level that I can and thoroughly enjoyed it. You know, it’s been a lot of pain along the way. And at times I’ve given up, just thought this is too hard. then it’s always come back stronger. And the community of sport has given me a lot of support, I would say.

Debbie: Sport does give you that something. It’s a part of you as well. It’s that’s part of your identity, isn’t it? And you don’t want to lose it.

Charlie Robards: Yeah. And that’s what the book’s all about. Sport and A.S. probably define me the most. That’s who I am, you know. And it’s about sharing that story so I can try and inspire others to not give up. You can have a full active life. It’s not easy, but you can. And I’m still going for my dreams. I’m playing cricket at the age of 50 for Warwickshire and hopefully going to trials for England. So, you know, yeah.

Katy: Oh, wow. Because most people, by the time, don’t know, 30s, 40s, sport takes a step back due to getting older and that kind of thing. So, it’s amazing that you’ve continued and, past that sort of normal age of people maybe not playing.

Charlie Robards: Yeah, and it’s so popular. Over 50s cricket is just massively popular and great fun. as I say, it just gives me that something to aim for keeps me busy. You know, I’m swimming every day and I’m having to be active, which obviously is crucial for the condition anyway. And I couldn’t live without sport. It’s you know, it’s in my DNA, as it were.

Debbie: So, when you were flaring, what, did a flare look like? And then how did you overcome that to continue not to just give up completely?

Charlie Robards: Yeah, so I mean, I can remember it vividly, the first sort of real flare I had, was playing in a British universities tournament and I’d scored some runs the day before and batted for a long period of time. And I woke up in the dormitory where we were staying the next morning and I just had this excruciating pain in my left hip. I didn’t know what it was. I just remember going to the shower and just sitting in the shower trying to put some hot water on it to desperately understand what was going on. Took some painkillers and then went out and played again. But I think as time’s gone on, I’ve learned to manage the flares better, rest, you know, and just say, stop, Charlie, you can’t do anymore. And you know, whilst my friends were probably down the pub having a beer, I was sat in a cold bath, you know, desperately trying to bring the inflammation down. So, you just have to make sacrifices

Katy: And what if you find works best? Me and Debbie were having this chat the other day about hot and cold. what do you find works better? The heat or the ice? Or does it depend on the situation?

Charlie Robards: So, I tend to use heat before a game. So, I’ll generally have a hot bath in the morning before I go off to a game. And then immediately after a game, I go cold. Took me a while to work that out. I always thought it was hot that I should be doing, but actually I think with hindsight that was making me worse. So, I have a really cold shower after the game. So hot and cold, and sauna, cold shower, sauna, cold shower. I try and interchange it a bit. Whether that’s right or not, I’m not sure, but it seems to work for me.

Katy: Yeah. And I think it’s so individual anyway, isn’t it? So, it’s having that trial and error and working out what’s best for yourself.

Charlie Robards: Yeah.

Debbie: But then also do you find the way in the summer, because it is hotter and a lot more humid, do you then find you need the cold a lot more to help?

Charlie Robards: I’m a different person in hot weather. So, if I could live in a hot country, I would move tomorrow. If I’m on holiday in the sun, by a beach or whatever, a totally different feeling. You know, my body feels totally different, here in the winter when it’s cold and wet, it’s really, really tough. good weather is great for me.

Debbie: So, changing subjects slightly Charlie, because you were diagnosed so young. How did you find talking to, you know, prospective partners and going into relationships knowing that you had inflammatory arthritis?

Charlie Robards: Yeah, I think initially I was quite sort of nervous about talking about it and probably hid it for a while, particularly with, sports coaches and friends and things. The first marriage, I didn’t really discuss it. My second marriage is with a nurse, so she probably gets my situation. 30 years of nursing probably has prepared her for a life with me.

Katy: So, she had an understanding, yeah.

Debbie: Handy.

Charlie Robards: So, I talked to her openly about it and she, think, gets it. She’s a no-mess nurse, so, you know, unless you’re dying, you need to get on with it. So that’s really good for me because while she’s very sympathetic, it also makes me not sit and dwell and, you know, be too morbid about it. She tries to encourage me to go for a walk, but she helps immensely. she’s been very, I talk about it in the book, she’s been a massive part of, finding peace with the disease.

Katy: And how are you Charlie with like friends? Cause I know there’s loads of stigmatism, isn’t there, around men and how they talked to their friends about health or mental health. So how have you been with your friends and do they understand and get it?

Charlie Robards: So that’s been one of the most amazing bits about the book is my friends. Yeah, my friends just had no idea what I was going through and the mental side of it So that’s been really nice for them to come to me and say, gosh, I didn’t know what you were going through. I’m so sorry. So that’s been a really good thing about the book is saying, you know, it’s good to talk especially among men sports community. So I’ve had a really positive.

Katy: Yeah, especially in the sports community, because it can be quite, difficult, doesn’t it? So then open up and have those conversations. If you’re for sport as well, when you’re playing as a team, your health really matters because it can affect the whole team’s performance. How do you go about that scenario?

Charlie Robards: Yeah, so I mean, I’ve just been really honest. So, when they’re sort of doing a very intense preparation, just say, look, I’m just going to take it easy here. I’m going to save myself for the match. So I think just be honest with people. And when they know your situation, then it is fine, you know. And actually, I found the greatest peace comes when you share your story and, when you’re open with your loved ones and the people around you, because you need that support. It’s not easy at all living with a disease like this. The hardest part is, people look at me and think, well, I’m just a normal, healthy person playing cricket at a good standard. They don’t see all the battles that are going on internally, the mental side, you know, the hot baths, the cold showers.

Katy: Extra preparation isn’t it, that you need to do both to prepare for sport, but equally after sport to then prepare you for the next time.

Charlie Robards: Yeah. And it’s exhausting. It’s just this vicious cycle of trying to get yourself fit, then playing, then recovering, trying to get fit and playing. And I used to look at other players, and they were so fit and young and bouncing around and I just used to get angry. But actually, I am who I am, accept who I am and work with what I’ve got rather than fight and try and be something I’m not, you know.

Katy: Yeah, no, that’s a really good way of looking at it. Definitely.

Debbie: How long did it take you to realise that though? Because I think anyone who’s diagnosed you do just want to just say, I hate the world. Why have you done this to me? But then now realise actually, sharing your story, talking with people, getting them to understand what you’re going through, it really helps as you say that support network as well. But how long did it take you to get to that point though?

Charlie Robards: I think I’m still working on it, even now at 50 years old. I think the book’s been crucial. It’s the first time I’ve really stopped to look at how AS has shaped my life, how it’s affected my relationships, my mental health. So it’s been very cathartic writing the book. I was terrible as a youngster. used to be really angry about it and, you know, why me, why me? But it’s just not worth it. There’s also perspective, at least I can still play cricket, I can still move, I can still go skiing with my wife, although it was pretty difficult.

Katy: And going back to the book, what made you decide to write the book? What was the key trigger to wanting to put your story on paper?

Charlie Robards: Yeah, I’ve always liked writing and during lockdown, I just started writing a series of short stories. I showed it to a few friends and my wife and they said, this is great, Charlie, you need to write a book. Left it got busy with life, a new job, etc. And then I got injured a couple of seasons back, and I couldn’t play cricket. So instead of playing cricket, every Saturday, I’d write a chapter of the book. And I just thought, this has been such a big part of my life and you could look at it negatively, but actually I wanted something really positive to come of it. And that’s why I decided to work with the charity and try and raise awareness and funds. So yeah, I’m really proud of it. And it’s been quite a journey, but yes, it’s been good.

Debbie: Yeah, it’s fantastic. And just to say, Charlie’s book is called Hitting AS for Six, and the money raises funds for National Axial Spondyloarthritis Society, NASS, who we work very closely with as well. They are great charity. I must admit, it is very hard to, go back and I suppose go through your journey. How has it shaped you, do you think, having AS?

Charlie Robards: Wow, what a question.

Katy: That’s a good question.

Charlie Robards: I think it’s made me who I am really. I thought life was straightforward. I was going to be this top professional sportsman, and I think it just shows you that life’s not straightforward and it’s going to throw you curve balls. But actually, I think it’s made me very aware, it’s made me very compassionate to other people who suffering. And yeah, I just think it defines who I am, rightly or wrongly, sport and the disease, but the books come out of it, so that’s great. So, I think it’s positive, although very, very painful is how I’d describe it.

Katy: Yeah, painful positive.

Charlie Robards: Yeah, painful positive.

Katy: Just going to say, did the writing process reveal anything new about your journey that you’d not really thought about? Because I guess when you’re going through something, you just try to get through it, don’t you? Was there anything new that cropped up that you’d forgotten about?

Charlie Robards: I think it just showed how much I’d suppressed a lot of the emotions that come with the disease and probably haven’t handled them very well, like with young children, bringing up a family, trying to hold down a job, playing sport. It’s pretty tough when you’re in pain and tired and you don’t feel happy. So I think it just showed me actually how far I’d come and reinforced that actually you have done a good job you know, your kids can look at you and say you can still have a full life with the disease. But yeah, it was pretty raw, actually, writing it. There were times when it really got to me. But as I say, it’s all out now. So it’s almost like you’ve let it all go. And I’m just,

Debbie: Yeah, it’s very a relief, But I suppose, just having that time to reflect though must be so invigorating to actually say, I’ve done all of this and I’m still going. And you’re still playing cricket.

Charlie Robards: Yeah, absolutely. And so that’s been the greatest thing about it really. And also sharing with, you know, the people around me who just weren’t aware and the reaction from, various people, reviews from people I’ve never met before, people with the disease, people not with the disease, sports people, non-sports people. and the charity had been wonderful. And I think, they’re getting good awareness and we’re trying to get some, funds. So that’s, yeah.

Debbie: But you mentioned, having your children and seeing them grow up. How did you explain to them when they were young about your condition or did you not?

Charlie Robards: Didn’t really talk about it much. they probably saw, know, dad was always stiff and moaning about how sore he was. I suppose they became quite aware when I was writing the book as well, you know, think my son read it and he was okay. Do I need to be aware of this? And I said, yeah, you do need to be aware of it. It’s not a given that you’re gonna get it, but you know, be aware of it. He plays a lot of rugby. He’s a good rugby player and not showing any signs of it yet. My daughter perhaps I think perhaps has signs that she might sort of be carrying it a little bit. We’ve never done the blood test for the gene, so I just sort of say to them you know keep fit eat well you know look after yourselves and we’ll just see where it where it takes us really.

Katy: And how was parenting for you with the condition, when they were young, how did you go about being, I guess, a dad, playing with the kids, especially on days where you’re flaring?

Charlie Robards: I found it quite tough really and there was quite a long period where I was on my own. So, I was looking after kids on my own. So, it’s really difficult because you’ve got no one to talk to and obviously the children don’t understand. And there were just times where I didn’t feel like going to the playground because I was sore and tired. But I think we managed it pretty well really. I had very good support from my parents as well. So, we’d often go around there and then they could take over for a bit, but both the kids look on it fondly, so that’s the best thing really, isn’t it?

Katy: Yeah, no, definitely.

Debbie: Yeah, because for me, and Katy, you’re a parent as well. You don’t realize, until again, you look back and reflect a little bit. Oh, my gosh, I hope they don’t remember that time because when I was on steroids and I became very angry I remember I was just shouting at my kids so much and then and then just sitting in the corner crying because I just shouted at my kids. I remember that. But they don’t. And it’s just really interesting to hear what they think their childhood was like, it’s just like, well, it was great. But they also, they don’t know any different either, so.

Charlie Robards: No, no, I kids are very, resilient. And, you know, they have a different perspective on things. I think it probably affected my relationships more than anything else. Certainly in my first marriage, I found it difficult to expect, you know, they say I was grumpy or moody and actually I’m not, I’m just absolutely in.

Katy: Pain makes you grumpy, really grumpy.

Charlie Robards: Absolutely, if you’re living with pain day in day out, just eats away at you all the time and then finally you explode and that’s it. So I suppose that side’s been harder because that’s difficult to explain to a loved one and someone who’s equally coming home from work and is tired and wants some support and you’re just not able to give it. So that’s been the hardest part.

Katy: What’s been kind of key support network over the last 30 years?

Charlie Robards: My mum and dad have been fantastic. I have an amazing doctor who’s a close personal friend who just puts up with my continual requests and calls and blood tests and all.

Katy: That’s great. That’s brilliant.

Charlie Robards: Yeah, he’s very good. I play cricket with him as well, so that helps. And I’ve got a good friend network through sport. So, they are amazing, and group of us that on the WhatsApp group if someone’s struggling, we just go for a beer and we all get out together. So, I think that’s got better. I don’t think it was so good in the past, but I think nowadays people speak up and talk which is good.

Debbie: Yeah, and I think that you have to, because I think when I was diagnosed, no one ever spoke about that and I think this is where people with IA become quite feel ashamed of what they have because they don’t know how to talk about it. But actually, it is just starting to have those conversations that, especially with their close friends, like Katy had we had Kat, your friend on the podcast, she’d seen you struggling. And then when you’ve got that diagnosis, she was still there to support you, which is fantastic. And that is really what you need to get you through the ups and downs of life with IA because that’s what it throws at you.

Katy: Yeah.

Charlie Robards: Absolutely. And having a wife that’s medical, I think has really helped because she understands it and you can talk to her about the medication, you can talk to her about how you feel. And she just backs off because she knows, when you’re not right. Whereas if someone isn’t aware of how that condition makes you feel, perhaps they don’t understand, you know, they just look at you and say, well, you’re just grumpy or you’re tired or whatever. So that’s been brilliant. Absolutely brilliant.

Katy: Yeah.

Debbie: But Charlie, just getting onto your medication that you said you’ve only been on immune suppressants for the last 10 years. Was there any change around that time to get you onto these medications? Or did you just become aware of them? Right.

Charlie Robards: Yeah, no, I was really struggling. was really struggling. Pain wise, movement wise, it was just getting too much. I was still playing a high standard of cricket. And I was in so much pain all the time. So, I went to see my rheumatologist, and we sat down and looked at the options, and it was my mother really that convinced me to go for it. And she watched me coming down the stairs one Sunday morning after a pretty good match. stayed at their house and she said, you just can’t live like this. so yeah, I went on them and I think they’ve been, I particularly struggled with a uveitis, iritis in the eyes. So, I was getting these flare ups with really sore eyes. So, they put me on a particular strain that’s very good for that. And actually, touchwood since I’ve been on it, I’ve not had any problems with the eyes. So that was one of the big.

Debbie: Okay, is that a biologic that you’re on a biologic DMARD? But when did you then develop uveitis?

Charlie Robards: Yes, I’ve had it throughout my time with the condition. I would often get it if I had been doing a lot of driving, was stressed with work, a lot of screens, and then it would just flare up and I’d have to go on a course of steroids. And I actually had a flare up in the eye and the pressure went up because of the steroids and that caused a bit of problems with the eye. So yeah, that was a real…

Katy: And what are the key symptoms of uveitis?

Charlie Robards; Just like a really bright red sore eye and then, really uncomfortable, really sore. But I had a very good eye specialist who I’d just literally ring up and say, it’s happened again. And he put me on the steroids, but he said, you can’t keep doing this forever. So that’s why we sort of went down the route of the biologicals. Yeah.

Debbie: Yeah, it’s a shame that you had to go through that to get to that medication, but it seems to be working now, which is fantastic.

Charlie Robards: Yeah.

Debbie: But Charlie, just trying to sort of finish off now. I was just wondering, if there any advice that you would give your 18-year-old self when you were diagnosed?

Charlie Robards: Yes, don’t fight it, accept it, find out as much information, look for support, actively go out and find out where you can get support and talk openly to the people around you because they’re the people that ultimately are going to also feel the impact of the disease. So yeah, I would change it completely really. I wish I was so sort of proactive in the early days as I am now, but it’s always easy to say with hindsight, but yeah, you know, definitely get a good community, rheumatology, friendships, work the system, definitely. NASS is a brilliant charity, that sense of community. There’s someone to talk to, can talk to other people who’ve got the disease. So, I found them really helpful. Yeah, that’d probably be it, really. Easy to say when you’re 50. Yeah, exactly. Write a book.

Katy: 30 years in, you know what you’re talking about though.

Debbie: Yeah, I must admit your story has been absolutely fascinating.

Katy: It’s inspirational that you’ve continued to be, to play sport at a really high level because it’s not easy to do that when you’re the healthiest person in the world, let alone with a health condition like AS. So, it’s incredible.

Charlie Robards: Thank you, I appreciate that. It is very hard work and people don’t see what goes into it. But that almost makes it more rewarding because you know what you have to go through to get to where you want to. And other people don’t have to go through as much as you, so it does make it even more worthwhile.

Debbie: So, thank you so much for your time today it’s been absolutely fascinating, and a really powerful story of inspiration and resilience so thank you so much

Charlie Robards: Absolute pleasure. Thank you so much for having me.

Debbie: Please do rate and follow the podcast from wherever you get the podcast from. You can download the episodes as well, we are on social media. We’re on Blue Sky, Instagram, Facebook and LinkedIn. Please do continue the conversation as well. You know, it’d be fascinating to hear what sports you play or just generally how you keep yourself fit. sign up to our regular newsletter, we are at inflammatoryarthritis.org and until next week, Katy, it’s goodbye.

Katy: Goodbye.

This week, Debbie and Katy sit down with the brilliant and endlessly determined Charlie Robards, who was diagnosed with axial spondyloarthritis at just 18 – right as he was chasing his dream of becoming a professional sportsman. Now 50, Charlie reflects on three decades of navigating pain, ambition, parenting, relationships, and the emotional weight of a lifelong condition.

What unfolds is an honest, funny, and deeply human conversation about resilience, identity, and the surprising places we find strength. Charlie’s story is a reminder that life doesn’t always go to plan, but it can still be full, joyful, and meaningful.

“I am who I am, work with what you’ve got rather than fight to be something you’re not.”

Key topics:

• Impact of being diagnosed at 18
• Sport as a lifeline
• Flares, pain & the hot/cold debate
• Weather, mood & mobility
• Talking to partners, friends & coaches
• Parenting with AxSpA
• Mental health & suppressed emotions
• Biologics & uveitis
• Writing Hitting AS for Six
• Advice to his younger self

Resources & Links

• Hitting AS for Six — Charlie’s book supporting NASS
• National Axial Spondyloarthritis Society (NASS)
• Inflammatory Arthritis UK (IAUK) — resources, stories, and support
• Newsletter sign-up: inflammatoryarthritis.org
• Find us on BlueSky, Instagram, Facebook & LinkedIn

This episode was funded by UCB, who had no involvement in the development of the content or any associated materials.

Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content.

For more information, head to https://inflammatoryarthritis.org/