Episode 17 – Rachell Smith

Episode 17: Faces

Introduction: Rachell Smith is a world-class photographer, and she lives with AXSpA. She tells us her amazing story today. Inflammatory!, with Debbie Wilson and Katy Pieris. Navigating life with inflammatory arthritis.

Debbie: Hello and welcome to Inflammatory! with Debbie.

Katy: And Katy.

Debbie: An important day for us today.

Katy: Yes, our first guest after, what is it, 15 episodes. Absolutely amazing.

Debbie: I know, it’s great. Just to put it into context, we met this lovely lady, Rachell Smith, at a parliamentary event that we went to with NASS, the National Axial Spondyloarthritis Society charity, which we spoke about in the podcast a couple of weeks ago. So, Rachell’s a leading portrait and fashion photographer. She lives with axial spondyloarthritis, often known as Axial SpA. It’s a type of inflammatory arthritis that affects the spine and the joints that connect the spine to the pelvis. She’s fronting a campaign called “The Faces of Axial SpA”, which is run by NASS. And Katy and I caught up with her earlier, started by asking her about her diagnosis.

Rachell: So, my diagnosis, it’s been such a journey. So, I was diagnosed officially with axial SpA. It was about eight years ago, so I was 31. And I mean, all the way throughout my 20s and my late teens, suffered from really severe back pain, hip pain, and I mean, lots of other symptoms, which I didn’t realize were all part of axial SpA at the time. And I mean, it was such a long time, but over a decade of being such a young person and having so much pain and not been able to, you know, you’d go to some festivals with your friends and, you know, you realise, I can’t, like I’m really struggling to stand up for more than a couple of hours. I mean, and all those things I still struggle with today. And I can’t tell you how many doctors and health professionals I went through over the course of, you know, like I said, over a decade. And then I remember I went to my GP this one particular day and I just burst out into tears, and I was like, there is something wrong with me. I don’t know what it is. You know, you try, and Google and you try and diagnose yourself, don’t you? And this GP just sat back, and I can remember it like it was yesterday. She sat back and she just looked at me. She was going, hmm. She was like, you know what? I’m going to test you for this particular gene, which is the HLA-B27, which I’m pretty sure this is a fact, but not everybody has it that has AS. You can, it’s still very kind of unexplained in a lot of ways, but the majority of, you’re more likely to have it if you do have that particular gene. So, she tested, so did some blood, she tested me and then I remember I was on holiday with my family, and she called me, and it was almost like she was in shock herself. She was like, oh, you’ve been tested positive. She was like, you know, you’ve probably, she said, I’ve been looking into it. I think you’ve probably got this thing called AS, which I can never pronounce the long term of it properly after all these years. I can’t spell it. Axial SpA, AS for short.

And yeah, I was really scared. I was like, wow, what, what, what’s life going to look like for me? You know, of course I did the wrong thing by Googling long-term effects of Axial SpA and you just think, oh no. But yeah, I mean, I, I just, soon as I got back home from holiday, signed up to the rheumatology department at the hospital and start, yeah, just started my, my after diagnosed, you know, journey from then. And yeah, I mean, even to this day, I’m still learning, I’m still learning so much about, about it and about myself. You know, I only know my, my journey and what I’ve been through and like what I’ve learned because I think it’s just so different for everybody.

Debbie: We’ve spoken about that on the podcast before that everyone with IA is, is so different. Their journeys are so different because all three of us here have different types of inflammatory arthritis and to hear your journey though, and that must have been so tough for you for your emotional health, going through your teenage years and your early twenties and then getting that diagnosis at 31. How did that actually then impact on your emotional side of it as well? Because obviously we know that it’s not just the physical disease. It is that emotional, mental impact as well.

Rachell: Oh my gosh, absolutely. And do you know what? It’s funny. I think I’ve always been, I’ve always been very proud of being a very kind of strong minded, confident person and I’ve never thought, and it’s not like I’ve, it’s not like I’ve ever thought my mental health is a bad thing. We all have our ups and downs but yeah, it really, it really, really did massively impact me. And I think probably just as much as the actual diagnosis itself because it’s weird. It’s like, I’m not trying to say that it doesn’t matter whatever age you are when you get diagnosed but I think being younger it really scared me because I’m like, oh, I’ve got many, many more years to live and I need to try and figure out how, what this means for me and how to manage it because I, because I don’t want to end up you know, making myself worse if I’m not doing the right things or not taking the right medication that’s right for me or the right exercise or diet and all these things.

So yeah, but it really did affect me mentally. I’m not going to lie but I think that I do feel very blessed that I have a really strong family and friends who I mean, you know, whenever anything happens in my life I always go to and you know, I can’t really ask for better support to be honest. So, I think that that really was they were really, they’ve been my rock throughout the whole thing and actually I must say that my mum has always suffered with arthritis issues and still to this day I’m still trying to get her tested for the gene because I’m pretty sure she’s got it. She does have arthritis and you know and other things but my sister she didn’t have it as bad as me I don’t think she’ll completely when she listens to the podcast she’ll completely disagree but I’m like no, my pain is worse than yours Becky my sister but she was like I have, I still suffer with back pain as well so she also got tested and she also got tested positive for the gene and is and now takes medication for her AS so it sounds awful in a way but actually having my sister having it as well we like really support each other so it’s kind of you know it’s not like I want her to have it but we kind of we kind of share that really helps the mental part of it.

Katy: And I guess you mentioned you were on holiday with your family when you got that call how did your family your mum react especially now knowing you’ve got those two daughters with being diagnosed with the disease how did she feel?

Rachell: Well my sister was a few years after me to be honest if I look back I think we were just all in shock I think I wasn’t really taking anything in because I was in a bit of a shock but also in a way a bit of relief and a bit of relief for my parents as well because I think they were also really concerned, so like why is our daughter you know going through so much pain, and it is so normal that I’m complaining about my back oh gosh like I’m feeling dizzy I’m like you know all these things. So, yeah they kind of like were very having through the same emotions sort of shock a bit scared but also a little bit of relief as well. But they you know they were really strong they were just like you know when we get back home you know well I think my mum came to the first appointment with me just for support and you know she’s learnt a lot as well throughout this process.

Debbie: So when you got home were you given a lot of information about it you mentioned you did Google and even when Katy got diagnosed, she Googled and it can be quite scary so was there too much information was there enough information or were you just overwhelmed with it?

Rachell: all I mean if I’m really honest and with all the respect for that GP which you know, I’m so thankful for them for actually you know getting me getting my bloods done and getting me to that point it was it was just me doing research on my own and she referred me to the rheumatology department so really the support that I had was through them. I was living in London at the time and my GP referred me to the rheumatology department and I really did get all of my support through them to be honest and I must say the helpline, the staff are kind of incredible you know even if you get a flare update you’ll have a helpline number that all really helped me. But yeah, to be honest I didn’t feel like I was very proactive actually in just doing my own research if I’m honest and really trying to listen to my own body and just being really in touch with the rheumatology department and the rheumatologist that I was assigned to. But I moved out of London a few years ago so I’m with a different department now but they’re still good. But yeah I definitely I didn’t really know where to look to be honest, so I just kept it all my communication through them.

Katy: It’s really really hard and at that point what kind of happened to your you know your dreams for what you wanted to do? Were you in the profession at that time that you’re in now and how did that sort of change kind of you know relationships work life balance what happened, and can you talk us through that a little bit?

Rachell: Yeah absolutely so for me actually my job helps which is crazy so I so for me being still is not good you know. I wake up every morning and I’m like really stiff and I’ve got to go through all the exercises and do all of that but because I am a photographer, and I have been shooting from such a young age. I mean I’ve only ever really lived and breathed photography ever since I was a kid so you know everything’s photography is a very active job and actually it really does help. I actually struggle more when I’m sitting at my desk all day trying to just do some admin it’s actually worse the one thing. That I will say though the only thing that I really had to change was how I’m holding my camera and what position my neck is in and just generally my neck and my back because I knowing what I’ve got and understanding it a little bit more just from my own research and the rheumatologists was that I was getting a lot of neck and upper back pain and stiffness. And I recognised this took me a year to figure this out but I realised there was a certain way that I was holding my camera and the way that I was looking up at the people that I was photographing that was actually causing flare-ups. And I remember after a certain amount of shoots I was coming home and I was really struggling to breathe because I was having a flare-up in the car on the way home and I was like what have I done and it was happening after shoots so even though I contradicted myself once I figured out that part of it the movement of doing my job being on set is way better than just standing or sitting still. So, I’m very pleased about that.

Debbie: Are you open about this with your clients though and how is it you have to be in before your neck and your back?

Rachell: I am very honest about it. Recently I’ve had uveitis and other issues with my joints and my fingers swelling up and really painful I was on a couple of shoots last week it’s not like I make a joke out of it because it’s nothing to joke about but if I’m struggling and need to put my camera down for a second it’s never going to leave me and I have mentioned it to people on a shoot before. And they’ve even been like do you know what my partners always had these symptoms I might actually go back and tell him they’ve never thought it could be a type of inflammatory arthritis. So, for me because I am very chatty as you know but the more words that I get out there you know you might help someone even if it’s just one person. So, I’m very open about it I’m not ashamed of it at all.

Katy: Now that’s amazing and I think that’s absolutely brilliant to kind of spread the word in a such a positive way and how the hell do you remain so positive because you’re so friendly open, honest how have you come to this point?

Rachell: My husband will probably disagree; he sees the moody wife that is trying to get some help. But no, I have always been quite a positive person, and I just generally just really love connecting with people. It’s probably why I am a photographer and what do today but yeah I mean. I think that, I just think personally that there’s no point me feeling really angry or down about it so and you know I am naturally really positive sort of happy person and I don’t really want that to change that so obviously when I’m having a really bad day it’s a struggle. And I might actually choose to maybe not have meetings that day. Obviously, it’s different if I’ve been booked on a shoot. And to be really honest sometimes maybe I have to do not switch it on as in I’m not myself, but sometimes I have to pull myself out a bit of a slug, if I know, I am where I am, I’ve got a shoot, I do need to, it is like a kind of performance in some respect. So, I am naturally positive and quite happy. I have my odd days where it gets on top of me and my husband gets all of this so it’s fine.

Debbie: We’ve spoken about Katy and her husband before, but how did your husband, were you with your husband at the time of diagnosis?

Rachell: Were we only together a year, we weren’t married then, but we were pretty certain that was going to be in our near future at that point. But I mean, my husband’s just the most supportive, amazing, I really couldn’t ask for a better partner. I could cry about it now and he, yeah, I mean, he was just with me. It was like it was happening to him and he was just with me. That’s why I knew that he was a keeper, to be honest, because he was just like, let’s figure this out together. He would help me exercise in the mornings, get me out of bed, rub my back. I mean, he’s just, yeah, he’s that great. So yeah, I think in a way it probably made me fall in love with him a little bit more because he really cared about, you know, it was going through some emotions, going through pain. I’ve just had this diagnosis and, you know, that’s not scaring him off, that’s bringing him to me even more. So, you know, oh, I could start crying.

Katy: That’s absolutely lovely though. It’s really nice because you hear lots of horror stories about that. And in terms of the diagnosis, do you think it’s kind of made you a better person? Do you find it defines you? How have you kind of defined yourself post diagnosis?

Rachell: It’s a really interesting question. And funnily enough, I have asked other people this as well, because I’m just really interested in it. It sounds so, because I don’t want to disrespect anybody that perhaps lives with it more severely than me, because that’s really hard. And I mean, obviously, you know, I have my ups and downs, but the short answer is, is I do actually think it makes me a better person because I think I’m more, I think I have more empathy for people that have got chronic pain. And I think that it’s that good old saying, don’t judge a book by its cover, even though you might meet me, and you think that she looks radiant and really healthy. Well, I wish people would think that I look radiant. Hopefully they do. I don’t know. Maybe they do, maybe they don’t. But it is like a hidden, it’s a hidden pain. You can’t, you know, unless obviously I’m obviously like, oh, you know, and I’m making those movements, you can’t see it. So, I think that I live my life now, meeting people, you know, just not seeing what I see on the surface. Everyone’s got their things in life. And I think that, yeah, just having that empathy for more empathy than maybe I did before. And also, for myself, what I eat really affects me. So just generally for myself, from a health point of view, I think if I didn’t have this condition at all, probably wouldn’t exercise and eat as healthy as I do now.

Debbie: It is amazing what the diagnosis can do to you. I think Katy and I have probably been through the same, but it does, as you say, it doesn’t define you. It’s a part of you and you’ve just got to learn to deal with it and kind of adapt your life with it. And obviously, you know, you spoke about empathy as well, and it does give us that greater, I feel that greater feeling of empathy. And obviously in photography, that is a huge part of your life as well. So, does it come out a lot more, would you say, in your photography?

Rachell: Yeah, probably. I mean, I’m the type of photographer that I really invest in the feelings of the person I’m photographing and their care and wellbeing because, you know, I mean, I’ve been on so many photo shoots, being in that type of environment is really normal for me. But even, you know, anyone that’s sitting in front of me, in front of my lens, yeah, I think also like now I’m a mother as well. So having AS being a mum, having all the emotions that come with that, you know, the empathy is like high. Yeah, for sure. I think, you know, just me being that slightly better person and, you know, being, like caring is really big for me. So, like, yeah, probably. It’s definitely heightened everything. It’s made everything, I wouldn’t say it hasn’t helped my job because I was kind of good before. But yeah, there’s definitely more of a sense of understanding and care there.

Katy: You just shared that you’re a mother and we recently did an episode about parenting with inflammatory arthritis and the extra challenges that that poses. It’d be great to hear how you found it.

Rachell: So, for me, my little girl just turned three. So, I think she doesn’t quite understand that mommy has Axial SpA. She doesn’t quite-

Katy: Can she pronounce it? I know. That’s the next job, isn’t it?

Rachell: Exactly, I know. So yeah, she doesn’t quite understand what mummy’s going through. I think for the moment, she’s all of a sudden got quite big and she still wants to be picked up a lot. Now I’m really struggling with that. So, I am trying to explain to her, obviously, it’s hard as a parent when your child wants to be picked up, you want to pick them up and squeeze them. So, what I’ll do now is I’ll pick her up for a minute and I’ll tell her that I love her. Mummy’s just in a little bit of pain, so I’m going to put you down. But I’ll go down to her level and then I’ll hug her at her level and kind of have that moment with her like that, because I don’t want her to feel like I’m rejecting her, but also I just want her to understand. She doesn’t understand fully, but I want her to understand that mummy’s got a poorly back. So sometimes she will tell people, oh, mummy has poorly back, or mummy has poorly eyes because I’ve recently got uveitis. So, I know that she’s taking it in, which is really, really sweet. So, I will just try to be the best parent as possible to look after myself that way, but then to not reject her at the same time.

Debbie: Yeah, I think we’ve been through the same with parenting. I feel it does make you a better parent as well. And for your daughter, she will grow up and she’ll have so much empathy for other people as well. So, there can be some benefits to having this horrendous disease. And obviously, she’s trying to stay positive with it all as well. I think your daughter will pick that up as well. Obviously, you’re here to talk about the national campaign that you’re doing with NASS. NASS is the National Axial Spondyloarthritis Society. And you have started this campaign. Can you tell us more about it?

Rachell: Yeah, absolutely. So, it was around about, no, not this time last year, because we’re already in May. So, it was probably about the beginning of last year or the end of 2023, I think. And I was having a really great professional year. And I just felt like I haven’t really done any work for any charities before then. And I really wanted to do something which was close to my heart and meant something to me. So, I reached out to NASS, and I said, this is me, this is who I am. I’ve suffered from axial SpA as well. I’d really like to create something amazing for you and use my craft, use my talent. Because I had noticed that I hadn’t really maybe done anything quite like this before. And I felt like from an artist point of view, that I could kind of really help raise awareness that way. So, we started chatting and it was just, I mean, it still is such an amazing collaboration with the NASS team. I mean, they’re so passionate about it. So, I came up with the concept. We all agreed that we didn’t want it to be doom and gloom, because it’s easy to do a charity campaign that’s not negative, but it’s all about the kind of negatives, if you like, and the pain and all that. So, we really agreed that we wanted to create something that was more empowering to empower people to listen to their body and to get diagnosed quicker. So that really is the kind of general idea, really, all the key factors around it.

So, through the NASS members, we chose, we really had an overwhelming response. And actually, this would be a really good opportunity to say thank you so much for everybody that wanted to be involved. Obviously, unfortunately, you can’t include everybody, but we chose four amazing people who obviously all suffer from Axial SpA. And they told their stories. So, we did a short film. So, we’ve done a short film of each of them, where they’re kind of talking about their journey. Obviously, it’s had to be edited to fit with the film. But it’s just supposed to be a very kind of quick, impactful kind of art film for each of them. And then we’ve got a photograph of each of them as well.

It’s very simple. But we wanted to keep it simple because we just wanted them to look like they’re kind of, you know, not owning their lives and their condition, but they’re really showing that empowerment that comes with being after being diagnosed.

Katy: And what’s the kind of key thing that you’re looking to achieve with the campaign?

Rachell: So we’re really trying to achieve, apart from just generally raising awareness, for people to understand that the quicker that you can get diagnosed and that you understand the resources and the support that’s out there, mainly through NASS. I mean, they’ve got their symptom checker on their website, which is brilliant. So, anyone can go on there. So, if anyone’s listening or sees the campaign, they can just go straight to NASS website and think about their own symptoms and to check that. I wish I had the actual statistics, the stats in front of me. But if you can remember at the event, the amount that the NHS could save financially for people that have issues with arthritis or Axial SpA is quite astounding, to be honest. But also, just for, it really does upset me to think that there’s so many people like myself, because it took me such a long time to get diagnosed, that are just living with this pain and they’re just, you know, perhaps their friends and family just don’t understand and they don’t, they’re scared, they don’t understand themselves. Where is it coming from? Why is it happening to me? You know, for them to actually have an answer and to have that understanding and support. I mean, yeah, that’s what we want. We want people to live their life, well, not in pain, hopefully.

Debbie: Yeah. Well, it sounds like a fantastic campaign because I know, obviously, I think the average time for diagnosis is around over seven and a half years. And that’s just such a long time. Obviously, hearing your story as well, for you, it sounds like over 13 years to get that diagnosis. And, you know, for women as well, obviously, we know that men are more likely to be diagnosed with Axial SpA, but we need, you know, for women and for anyone who’s that kind of in pain, as you say, go to the NASS website and find out more about it. And yeah, and look out for this campaign. It sounds fantastic. But is there any way that we can find out more information about you and the work that you do? And do we go to the NASS website for the campaign?

Rachell: Yes. So, it’s World AS Day on Saturday. It’s the first Saturday of every May. If you go on the NAS socials or their website, or you can link into their socials through their website, then all of the information will be there. And the website is nass.co.uk. And then I’ll obviously be posting about it. So, mainly on my Instagram, which is Rachell_photo. So, that will be all shared through there. And yeah, I mean, let’s just hope it just keeps getting shared and we just keep raising that awareness because I generally believe a lot of people have no idea about Axial SpA. They haven’t even, even when I even mention it to a lot of people, they’re like, oh, what’s that?

Katy: Yeah. Yeah. I haven’t heard of it until I was diagnosed with rheumatoid arthritis and met other people in this sort of inflammatory arthritis world. I’d never come across it before.

Rachell: Yeah. It’s crazy, isn’t it? So, yeah. The amount of times I’ve had to explain to somebody what it is, is a lot. It’s a lot of times.

Debbie: I can’t thank you enough, Rachell, for hearing your story and hearing it all about the campaign. I think you are such an advocate for people living with axial spondyloarthritis. So, thank you so much for your time. And we will do everything that we can to share the campaign, and everything will be in the show notes as well.

Rachell: So, thank you so much. Thank you. Thank you so much for having me. This has been so, so great and I’ve really enjoyed it.

Katy: Wow. That was amazing, wasn’t it? I couldn’t believe her story, especially that she’d been having some of the symptoms from her late teens and it took so long to actually get that diagnosis.

Debbie: I know. I think it was absolutely fascinating. And I think it has shown that this is why, there is this campaign to really try and get that diagnosis down because it even, as I said in the podcast, isn’t averageable at seven and a half years.

That is such a long time. And just think of the damage that can do in your spine that most of us would take for granted every single day. And actually, I think it’s just shown that if you feel that there is something wrong, just go along to your GP.

Katy: No, definitely. And I just think the other key thing for me was just how positive she is. And I know that that can sometimes be interpreted wrong by other people that just think you’re doing okay. But her positivity, her complete enthusiasm and the fact that she’s then taken that through, to developing this campaign I think it just shows that if you want to do something just give it a go.

Debbie: Exactly and this is what we are all about as well, and when she was saying they didn’t want it to be all doom and gloom, exactly why we set up this charity is because there are extremes, we get that and there are people that suffer so badly with these diseases and you know I don’t think we can’t be taken away from anyone. But there is also that, there is that positivity in life, life is hard enough, whether you have a disease or not, and actually taking that on board, then bringing that as you say that positivity shines through and with her. I have been through her Instagram, I have looked at her photography, it is amazing, and it comes through there as well.

Katy: Some of the people she has photographed, it is absolutely incredible. Kind of her day to day, is so, don’t know what the word is, but is so amazing then in the background she is living with this as well.

Debbie: Yeah, also what got me as well is she didn’t feel shame in it and she is open about talking so these people, that most people might be, oh what’s the word,

Katy: Scared of, intimidated

Debbie: but to be so open about it I think is so fantastic, it has taken me so long to not feel shame about having inflammatory arthritis and she didn’t straight away. But also, her support network sounds fantastic.

Katy: yeah yeah, she has such incredible support. Her mother sounds amazing, the fact that her and her sister are going through a similar thing it allows them to be able to have someone so close to talk about it.

Debbie: Yeah completely. That kind of hit home to me, that my daughter is going through it as well and it does bring you closer together because you just see straight away in their eyes what pain they are going through and you get it, and you fully understand it. So, I think her journey is absolutely fantastic and we will be following her and the especially the campaign as well.

Katy: Yes, the campaign is already out, so make sure you are heading to the NASS website to find out more.

Debbie: All the details will be in the show notes. Thank you so much for listening. Please do follow us on social media, we are on Bluesky, Facebook, Instagram and LinkedIn. Please also comment and the review the podcast from wherever you get your podcast from. Sign up to our newsletter at inflammatoryarthritis.org, and till next week it is goodbye

Katy: Goodbye  

In this week’s episode, hosts Debbie and Katy welcome their first guest, Rachell Smith, a leading portrait and fashion photographer who lives with axial spondyloarthritis (axial SpA) and is behind the new national campaign “Faces of Axial SpA”. Rachell opens up about her deeply personal journey, from experiencing symptoms as a teenager to finally being diagnosed over a decade later.

She discusses the vital role of family support, including her sister who also lives with axial SpA, and how the condition has brought her even closer to her husband. Rachell also shares how she navigates motherhood with a young daughter, emphasising the power of honest communication and emotional connection.

Rachell speaks candidly about how her diagnosis has increased her empathy, for others and for herself, and how this has come across in her photography. She also explains she is open with her clients about living with inflammatory arthritis and unashamed of her condition.

Most importantly, she talks about her impactful collaboration with NASS (National Axial Spondyloarthritis Society) on a national awareness campaign. Her mission: to empower others, shorten diagnostic delays, and break the silence around axial SpA.

Rachell’s story is one of resilience, creativity, and advocacy. Tune in for a moving conversation that highlights strength, vulnerability, and the importance of raising awareness.

🔗 Resources & Mentions:

• For more information about “Faces of Axial SpA” please visit: Faces of Axial SpA
• NASS website NASS.co.uk

• Learn more about axial SpA and access the symptom checker: symptom checker
• Follow Rachell on Instagram: @rachell_photo

This podcast is in collaboration with National Axial Spondyloarthritis Society

Disclaimer: 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/