Episode 23 – Support Act

Introduction:Having IA can sometimes feel like walking on quicksand, the right support can really prop you up. Inflammatory with Debbie Wilson and Katy Pieris, navigating life with inflammatory arthritis.

Debbie: Hello and welcome to Inflammatory with Debbie

Katy: and Katy.

Debbie: Good week Katy, surviving the hot weather?

Katy: I am. I absolutely love the hot weather, but I do seem to have a bit of a niggle, which is it my inflammatory arthritis? Is it exercising too much? Always sort of have that little conundrum. Yesterday, I was cleaning the bathrooms, doing the hoovering, cleaning the floors like a good little wife and my ankle, I don’t know what’s wrong with it, but I’ve got a bit of a sort of funny niggle, and I’ve been for a run in the morning. We’d done a family bike ride for Father’s Day. I mean, it was more like a frog hunt than a bike ride, but anyway, you know, we peddled between locations. And I do get issues with my Achilles, but there’s something like, I don’t even know which part of my ankle it is, but I don’t know, just a bit when I put my foot onto the ball, it just hurts a bit. And I think I’ve got a potential sort of flare wanting to come on in my wrist, but again, it’s that conundrum of, is it my osteoarthritis or is it my rheumatoid arthritis? I’m not totally sure. So, I think I probably need to get a little bit more sleep.

Debbie: Yeah. Do you find sleep helps?

Katy: Yes. I do notice a difference if I’m, and I think it’s always hard as a parent. I don’t know what you were like when your kids were little. If bedtime takes about 300 years, once you finally escape, you want to have that bit of alone time. So, I will tend to then, I think we’ve spoken about this before, but I will tend to stay up late watching crap on TV when really, I should be getting myself to bed. So, it’s something I think I could learn from Adam last week. I know he gets up super-duper early, but he also compensates with going to bed super-duper early.

Debbie: Yes. I must admit his interview was absolutely brilliant. His story is so powerful and so inspiring and how he continued doing that 24-hour bike ride and having these pains come on, it was like, you know, fair play to continue. But yeah, it’s always that balance, isn’t it? I think we’ve spoken so much about how life is always a balance and for him it was that balance of continuing. People have kind of paid for the fundraising to keep him going, but also as he was in so much pain, I hate to think how much pain he was in, but hats off for him for, you know, for continuing. But then getting his diagnosis so quickly, that was really shocking. Yeah. He’s got the same near enough condition that Rachel has. Hers was what, 13 years diagnosis? But yeah, great for him.

Katy: And is that the men, the male female gap or is it just that he was lucky?

Debbie: Well, NASS, who, you know, that we’ve worked with, the National Axial Spondyloarthritis Society. It’s always a pain to say that word. Probably why they just call it NASS. They have done some research and actually they have found that women are more unlikely to get diagnosis quickly, probably because I think if it’s a woman and you complain that you have back pain, they put it down to your periods, you know, the time of the month and just, you know, general, but just being a woman, I think. And actually, but for men, they don’t have those issues. So is it quicker and easier for them to get that diagnosis? Obviously, they’ve done a lot of research, and I’ll have to go back and have a look into it all. But it is known that men do get diagnosed quicker than women. It still can be a long diagnosis for that condition, which obviously NASS are doing some great work to try and get that, the time to diagnosis down, because I even think at the moment it’s over around seven, eight years. So, it’ll be interesting to actually see if there is, but then obviously we’ve now got the evidence on a podcast to show that yes, there is a difference between men and women. Crazy. But yeah, but I must admit my back’s been hurting as well recently. I was in agony last week and even sitting doing the interview with Adam, I was like, I have to move my back. And he was probably kind of felt the same because he’s sitting there for a long time. But then a bit like you, I don’t know, I have arthritis in my spine, they’ve diagnosed that, but they don’t know whether it is osteoarthritis or is inflammatory arthritis. They couldn’t tell that by the MRI. So, I’ve had steroid injections in there and I’m waiting for another op on it. But again, that’s taken about four years. So yeah, so that’s been a pain because then also the pain just goes straight into my hips as well. And my whole, it feels like my whole pelvis, my legs just don’t want to do anything. So, it’s just been struggling to kind of, even when I take the dog out then to pick up her poop, which I have done. I am a very good dog owner and I do that, even though I was in absolute agony. But yeah, it’s just, it’s just things that you don’t realise and actually how much it can, as Adam says, it impacts every aspect of your life.

Katy: And for anyone that doesn’t know, what is the difference between osteo and inflammatory arthritis?

Debbie: Oh, you’re asking me? I thought you’re going to say something there, Katy. But you know what? I actually had someone phone me up earlier. I went on a webinar last week and talking about charity stuff. And I said, oh, you know, I was thinking, oh, it was arthritis. Oh, so he automatically then assumed it’s for the older person. Yeah. So, I was telling him, no, this is autoimmune. So, it’s our immune system attacking ourselves, which we don’t know why it does. There’s an unknown cause to it all. And it can impact on all of our joints. And it can also impact on our organs, our skin, our eyes as well. So, this is our immune system attacking us. Whereas osteoarthritis is, I don’t like the term, but I know people know the term wear and tear. Because I think that’s sort of changed a bit as well. But it’s more as you get older, you’re more likely to get osteoarthritis because it’s just the degenerative things that go on in your joints. It’s just an aging process.  So, yes, that is the main difference.

Katy: And I guess like me, my rheumatoid arthritis has led me to getting osteoarthritis because of the damage that it’s caused in my joints.

Debbie: Yeah, it probably could well do, hands up, not a medical professional,

Katy: but if that’s why this sort of getting diagnosed quickly is so important, because if your joints are damaged by the inflammation, I believe that can sort of be a causing factor of osteoarthritis. So, coming back to the interview with Adam last week, I think it really sort of shows the differences of people when they’re getting diagnosed. So, like myself, it took like my symptoms didn’t come on that quickly. They came on over a sort of very long period of time, or long to me. But then for Adam, it was quite quick. It sounded like it was quite quick. So there’s so many kind of nuances that must make it really difficult for medical professionals to be able to, you know, see similarities in cases that they’re seeing, especially if you’re a GP and you’ve got to be, you know, you’ve got to know pretty much everything and know who to send where and when, by what time. It’s just really hard, isn’t it?

Debbie: Yeah, I think it must be. I wouldn’t want to be a medical professional at all, because also I don’t really, I couldn’t do surgery or anything like that. But I agree. And I think this is why what we’re trying to say on the podcast is that everyone is different with their symptoms, their diagnosis and their journey as well. We do have this, you know, the commonalities between us, but again, everyone is very different. And I think, you know, how Rachel talked about her one as well. Please go back and listen to Rachel’s one again. Really powerful, really inspiring. But what I did notice is they both have kind of quite physical jobs, I think for them. And even kind of for me sitting, I don’t know how about you feel, Katy, but sitting for me is probably the worst thing that I can do.

Katy: Yeah, no, I’m very similar. I do notice I can probably only sit for an hour at a time before everything feels like it’s like I always feel a bit like the Tin Man, and I need a little bit of oil.

Debbie: Yeah, completely. Because I must admit, even under the desk, no one can see, thankfully. Yeah, I do kind of move my knees and my feet and I am wearing clothes just to clarify.

Katy: We can see that, Debbie.

Debbie: Yes, thankfully. But yeah, I do move them, and I do move my hands as well quite a bit, as probably people may notice. But it’s because otherwise, if I don’t, they just do get so stiff so quickly that it is that that movement throughout the day that we have to do. Also, what I picked up on with Rachel as well is that they really are very careful about what foods they eat on the nutrition side. I know, obviously, Adam is a PT. So obviously the nutrition and exercise go very well together. But he knows what flares him. And I think Rachel said that as well, you know, she doesn’t eat cake and things like that. So again, everyone is different. But it’s made me really think about my nutrition because when I get fatigued and obviously, I need to be careful with my sugar levels anyway. But it’s just, you know, when you are so fatigued, you just need that quick energy fix. And that then makes you, but then you then start that vicious cycle because then when that crashes, you need another one. And so, it’s just how you actually look throughout the day. And years ago, I saw a dietician and she said, even though obviously this was just to me, not to everyone else, but having three meals a day isn’t good for us. We need to be having little and often just to keep us going throughout the day. So, I did have, she had this whole plan for me, which I did stick to. But then it’s the snacks of like, well, you know, I just need something quickly. So now I just go to the fruit bowl, which is easier. And so, yeah, but it’s just trying to change those small habits. And again, getting back to our 1% episode, it’s then having those small changes can then make a big difference. And I actually feel, I’m still very, I’m knackered and I don’t think the fatigue will ever go. But I do feel slightly better in myself, I think. Yeah.

Katy: And I’ve never really been very good at snack. I don’t really like snacking. I’m a very, very much a three meals a day kind of person.

Debbie: Yeah. Well, again, everyone’s different. Yeah.

Katy: Yeah. So I think, yeah, absolutely. Everyone’s completely different. And then the other thing that both Adam and Rachel had mentioned is their support network. So, Adam spoke really fondly of the support he gets from his wife. And I know Rachel spoke a lot about sort of her family support network, her sister and mother and her husband. So, I guess it’s kind of got me thinking, you know, what makes a great support network? And what do people need to see?

Debbie: Yeah, I think that’s a good question. I think for me, it’s meeting people that know what you’re going through. I think you need someone like that in your circle of friends or kind of peer support groups, because you want to feel like you’re not alone with it. I think Adam said that very much last week as well, even though he has that great support, but he’s now doing his podcast to kind of meet other people to understand that, you know, other people go through similar things or slightly different things. Because I didn’t really, growing up for me, I didn’t have a good support network at all, because I suppose I never spoke about it. My friends never understood it. And my parents did their best completely, but we had no information about it. So, we didn’t know what to do or anything. We just kind of went with what the doctor said. And I think, you know, if you go read my blog, it’s on our website. It just says they told me just to get on with it. And so, I had to. And I think because I was told that so many times, it’s quite embedded in me. So, but then when I did start working in the charity side, it was like, oh, my gosh, people, there are people like me. It was quite hard. But even when my daughter got diagnosed, I think you go on the Facebook groups and that for that kind of support. But I found it overwhelming very quickly because there were so many questions coming through. And I just thought I didn’t want my daughter to go through the childhood I had with it. So, I kind of did feel very overwhelmed by that. But what about you? How did you find your support network?

Katy: So, I think I wasn’t particularly honest with friends as such. But something I’ve noticed as I’m getting older, and I know sort of autoimmune conditions are more prevalent in women, but loads of my friends now are getting diagnosed with different autoimmune conditions. So, whilst like they they’re affecting, I can’t remember the name of the condition, but one of my friends has got sort of a thyroid autoimmune condition. And there are commonalities there in terms of sort of fatigue and that sort of side of things. So, I think it kind of, I feel like it’s sort of naturally developing as I’m getting older. But to begin with, I found it really hard to try and find people like myself. And I guess that was one of the sort of positives about being involved with this new charity was to sort of, you know, try and help build that sort of diverse network and support system of people with different experiences. And, you know, looking at those commonalities across inflammatory arthritis diseases, because what I’ve spotted, and I think some things like through COVID, when I set up my own Instagram page specifically about my disease, that’s where I spotted lots of the other forms of inflammatory arthritis that maybe I’d not really come across before.

And noticing the sort of commonalities across the piece of the sort of fatigue and the pain. And, you know, that sort of many people wanting to move more, but finding the right ways to build movement into their day. Yeah.

Debbie: Well, actually, last week, as the charity, I presented to a patient group, they’re in Bristol area, and it’s the Living Well Rheum, and shout out to them. It was amazing. And I think what came out of that discussion, we had great discussion about, you know, what are the topics we could be talking about in the podcast. And some were about those comorbidities, about actually what is IA symptoms, and what are other symptoms as well, because there is such a blur between them all. And we don’t know which is which. And they didn’t know either. And I think then, as you say, sometimes as you get older, you do have more conditions as well. And someone else had fibromyalgia like myself. And again, it was so where do we fit? Really, we need to find people like us. And, you know, speaking to them, they did because, you know, they saw me that, you know, living with inflammatory arthritis now with fibromyalgia, that actually, it is quite, it can be quite common to have these things as well. And I think that’s what really comes across. And that’s kind of what we’re hoping for with this charity as well, that whatever type you have, and however many comorbidities there are, that we get it and we understand. And we’re here to listen as well. And if there is anything, you know, that we can do, because the charity is now focusing on AREA. I do like an acronym. So, I’ve put it as an AREA acronym. So, we’ve advocacy. So we do want to help advocate for every patient in the NHS living with IA, especially we’ve got the NHS long term plan coming, well, 10-year plan coming out. Research, we do want to, I think, embrace the new tech that’s coming out. And every innovation is underlying everything here. So especially on the research side, what can we do to help us every day? The tech is there. You know, how can we utilise that better? Education, we want to improve education about IA. And the podcast, again, is one way of doing this. It’s a new way of kind of having those daily realities of talking about living with inflammatory arthritis and awareness as well. We really want to raise awareness for everyone and the public as well about the charity, but also, more importantly, living with inflammatory arthritis. So that’s kind of what we’re doing. And people are really buying into that as well, because it’s not one disease specific. It’s the whole spectrum of it. And people are getting that, you know, we do need to talk more about those co-morbidities. And it is. And I think it’s so hard as a patient to then go and see who do I need to talk to as well. When the NHS was set up, it was speciality completely. So, I’m not sure if I’m right framing. But anyway, it’s not the right wording. But it is, you know, if you had joint pain, you went to a rheumatologist.

Katy: It’s disease specific, yeah.

Debbie: It is. And so, yeah, so you see those people and you expect those people, if you then have to talk to two different groups, they then talk to each other. But I think we’re going to realise we don’t. And it’s hard then as a patient, you feel like a pig in the middle.

Katy: Yeah, because it’s not what it doesn’t do is kind of follow your journey across the piece from sort of diagnosis, maybe be like multiple diagnoses. Yeah, because it’s a bit like education. It compartmentalises you. Whereas there is that whole human being element and it’s treating the being, not just the human. That’s what I always think is kind of key, because on the surface of it, there’s all the medical bits, but there’s also the mental health side and the sort of people dealing with everyday life alongside their medical condition. I don’t know what anyone can do to kind of bring those two pieces together.

Debbie: We’ll see what comes out of the NHS 10 year plan. But I know they’re looking at a digital side. And actually, they did have the NHS Confederation meeting last week. And you can actually watch on demand their sessions. It’s really interesting. So all the links this will be in our show notes. And I was listening to one woman. She was from the Patient Alliance, I think, saying that, you know, this woman, this patient is involved under so many people. But she’s having to tell her story over and over again to so many different people. And that takes up half of your appointment time every time you go and see someone. So, is there a way that, you know, the tech can just show whoever you see all your notes?

Katy: A quick summary. Well, because when I’m in a meeting for work, we stick on AI. It transcribes the meeting notes and gives out the quick actions. Surely, with our medical records, they could have some AI behind it. I mean, I’m making it sound very simple. I know it’s not. But then just every time someone, you know, taps in to see Katy’s notes, it just pops up with a very brief summary. This is her age. This is a diagnosis. This was like, this is a quick summary of her last couple of appointments and blood tests. Yeah. Piece of piss, right?

Debbie: You saw the track and trace, was it? Track and trace app. But did they have that? That would have done well.

Katy: I actually quite liked it. I loved getting, like, you’d be on the train on the way to the office. I mean, it set off many panic stations in my brain. But suddenly, people around you.

Debbie: Oh my gosh, we’ve been staring at people going, have you got COVID?

Katy: Anyway, back to today, and I know it’s not a Q&A this week, but we did have a question come in on social media, just because it’s been so hot. How do we feel when it gets hot like this? Does it make our inflammatory arthritis worse? I think I mentioned in a previous podcast, it needs to be at least over 28 degrees for me.

Debbie: I thought it said 38 degrees.

Katy: Oh, 38, yeah, your memory’s better than mine.

Debbie: Proper hot.

Katy: Proper hot, it needs to be proper hot. So maybe at the weekend when it gets to 30 in London, that’s when I might need to have a little think. So, you know what I do? I will quite often sit with a bucket, a washing up bowl, with a load of ice and water and stick my feet in ice and water. And that completely just cools my whole body down, because, like, your blood flow goes through, doesn’t it? Goes through your whole body. What?

Debbie: Well, according to my husband, my feet are constantly at a frozen temperature. He’s surprised sometimes I’m alive, so I might not even need the bucket. I just have my feet.

Katy: You don’t get bitten by mosquitoes, because someone said to me the other day that mosquitoes, for some reason, if you have, like, sweaty palms, sweaty feet, their infrared sensors pick that up, and that’s why they bite you.

Debbie: Oh.

Katy: I don’t believe it, because I have very sweaty feet, and I don’t get bitten.

Debbie: Oh, my daughter gets bitten loads. Oh my gosh, she is. She just attracts them for some reason. But I think I have a few, but not that many. But the heat, I don’t like when it’s really humid, because I just feel my body weighs that bit more. Even just walking, it just feels heavier.

Katy: Yeah. Humidity, actually, I do agree with, because it’s kind of, I kind of think a thunderstorm is like, it’s the perfect storm for a potential problem with my inflammatory arthritis.

Debbie: Okay. In what way?

Katy: I just think, because it’s all the air pressure, isn’t it? I always think, like, changes in air pressure, changes in humidity, definitely, I think, make a difference. Years ago, there was a study about the weather, and it might be more, might have been more specific to rheumatoid arthritis. It may not have been. I can’t remember what the study was called. If I find it, we can pop it in the show notes. But it mapped out sort of the weather and your pain levels. Oh, okay. To see if there was a kind of significant difference, like a correlation, because it’s not proven that there is, as far as I know, but so many people kind of talk about the weather impacting their disease activity.

Debbie: Yeah, because I know when I was much younger, I did always used to flare on the autumn side. But then thinking about that could have also been the stress of school, because I got bullied and I didn’t really like school, because again, I felt I was different and I couldn’t, I didn’t fit in. So, yes, it could have been a mixture of both. I don’t know whether I could put it down to one or the other, but it was just generally in the autumn, I did flare quite badly.

Katy: Yeah, so I’m normally a Christmas flarer.

Debbie: Well, I think at the moment I am now, because my daughter’s birthdays are both end of December and end of November, and with Christmas in between, it is so stressful. Yeah. And a few years ago, I came down with the flu. This was actually 2020 Christmas, because I had to go and have a PCR test to see whether I had COVID, but I didn’t, I just had the flu. And I had all the COVID symptoms, but I lost hearing. And so, when I went to stand up, I passed out, because it kind of loses your balance a bit. So, I just…

Katy: Oh, wow.

Debbie: Yeah. And so, yeah, that was one Christmas that we, but we couldn’t go anywhere anyway. So, we were at home. It didn’t matter. It didn’t matter. It didn’t matter, because you feel terrible, but… I felt, but it lasted for weeks, actually. I’ve just had this survey come through. I can’t remember what it is, but again, I’ll put it in the show notes. And they were asking me about COVID and whether I’ve had it and what the symptoms were, how long I’ve had it for. But one of the questions it did ask though, and I think we need to be really aware of this, when it kind of talks down about autoimmune diseases, if you kind of think you, it doesn’t have all the different types of inflammatory arthritis, obviously, but it only has rheumatoid arthritis. That obviously is the main, is the common one. Yeah. Then I always think everyone should put other. Don’t always tick. If you don’t have RA, don’t put it, because then…

Katy: It makes the results not correct, doesn’t it?

Debbie: When also it highlights to the people doing this survey, that actually there are other autoimmune diseases out there and other inflammatory arthritis. So, every time that comes up, I go no other juvenile idiopathic arthritis, because even though I have been relabelled, I think a few times from a medical records in order to access medications, which drives me mad anyway, it shouldn’t be. I have JIA and that’s what I’ve been diagnosed with. And that is what I have. So why should I relabel it just to fill in a tip box? I don’t know. On a survey. So anyone with adult JIA, put that in, because that is what you’ve had.

Katy: And that’s, you know, again… It helps raise awareness, doesn’t it?

Debbie: It really does. So yes, that was my little rant for today. Sorry. And I mean, I think if there’s anything that comes out in the theme of this and some of our previous episodes as well is you’re not alone with these conditions and don’t ever feel that you are, because you should have a really good support network. Obviously, it really helped Adam, and it really helped Rachel. And, you know, they seem to be living, obviously not their best life, but living the life that they can with Inflammatory Arthritis. It doesn’t seem to be a barrier for them, which is what we want to do as a charity. But do reach out to your team as well, your medical team. If you are flaring, if you’re having a bit of a tough time, reach out to them and just see if there’s anything, you know, that they can do, whether it is just looking at your treatment or trying to get your physio and things like that. There’s things that they can do as well. And obviously charities, you know, like us, the feedback that we’ve had, Kate, I don’t know how you felt. It’s been absolutely overwhelming.

Katy: No, 100%. I think just people that I’ve shared it with, whether they’ve got inflammatory arthritis or not, have said how much they’re learning from the podcasts across the piece, kind of understanding the diseases, the multitude of diseases. And I guess a sort of little shout out would be if anyone knows somebody who’d make a great guest for us, do get in touch either via sort of Instagram, via the email or LinkedIn or Facebook.

Debbie: Yeah, no, please do. Because I think we do have a lot of guests lined up, but obviously everyone’s story is different. And I think this is what we’re so unique in what we’re giving people is that showing that there is a wide spectrum of a diseases, but also how people live with them, you know, as well. And I think, yeah, please do get in touch. We also have our appeal going as well. So please donate where you can. We are on social media, as Katy said. So please do like, follow and comment. It really helps with the algorithms apparently. So yeah, we’re on Facebook, LinkedIn, Instagram and Blue Sky. Please sign up to our newsletters. We’re there weekly, so you don’t miss out on any IA news. And until next week, it’s goodbye.

Katy: Goodbye.

This week, Katy and Debbie offer a raw and honest conversation about what it really means to live with inflammatory arthritis (IA). As both are currently experiencing flares, Katy facing increasing symptoms and Debbie managing spinal arthritis and severe pelvic pain, they speak from a place of lived experience, bringing warmth, truth, and relatability to the challenges of daily life with IA.

They reflect on last week’s inspiring interview with Adam Newton (listen here), whose swift diagnosis contrasts starkly with the long, frustrating journey many, especially women, face. They highlight this disparity by referencing Rachell Smith’s powerful story (Listen here), where it took over 13 years to receive a diagnosis, underscoring how gender bias and symptom dismissal remain pressing issues in rheumatology.

Katy and Debbie also speak openly about the emotional toll of IA and the importance of a good support network to help ease the isolation part and talking with people that understand what you are going through.

A central theme of the episode is IAUK’s mission, grounded in the four pillars of AREA: Advocacy, Research, Education, and Awareness. The hosts explain how these values shape every aspect of the charity’s work, from elevating patient voices and building innovative research partnerships, to creating educational content like this podcast and spreading awareness about the realities of life with IA.

They also explore the broader context in which IA exists, acknowledging that many people live with overlapping conditions such as fibromyalgia or chronic fatigue. Katy and Debbie call for a more joined-up, compassionate healthcare approach that sees the whole person, not just a diagnosis.

Finally, they invite listeners to share their own stories and experiences, reinforcing the belief that every voice matters. Through speaking out, connecting with others, and challenging misconceptions, the IA community can grow stronger and together, push for the change and recognition they deserve.

Links:

• NHS Confederation Link
• Research paper on weather and IA
• REACT Study Link
• Please donate to our podcast appeal
• Sign up to IAUK newsletter

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/