Episode 58

Introduction: From surviving our first live show to confessing a bit of pod‑adultary. Inflammatory! with Debbie Wilson and Katy Pieris, navigating life with inflammatory arthritis.

Debbie: Hello and welcome to Inflammatory with Debbie.

Katy: And Katy

Debbie: We survived our first live podcast.

Katy: We did, it was very exciting. I mean, I was absolutely petrified beforehand as we had had about four cups of coffee and had a flat white at home, I’d had a flat white on the train, then had a double espresso when we arrived. not sure that’s the best idea, but I definitely got through it.

Debbie: You did. We did a live podcast last week So we had Andy and Charlie join us as well. And they’ve both done podcasts. So please do go back and listen to their episodes. They are absolutely amazing. And they are quite different people, but it just came across so, so well. I was in awe actually of, of everyone. was, it just.

Katy: Yes. It, was really good. Yeah.

Debbie: I just found it quite weird sitting there doing a live one and not in front of a mic. And I couldn’t see myself.

Katy: A screen, It was actually really lovely not being able to see myself.

 Debbie: It was quite, in a way, it was lovely. It was great.

Katy: But seeing there was about 100 people potentially in the room. So it was really nice actually to see different people’s reactions with all these things. Of course, you can have the person in the corner on their phone doing work emails, but there were some lovely ladies towards the front that were kind of nodding away and it was people were really engaged, which was brilliant to see.

Debbie: Yeah, they were and we got some amazing feedback afterwards as well, people coming up to us and discussing the insights that we were given because it comes from our personal stories, but also from the wider community that we represent as well and all the other guests that we’ve come on as well.

Katy: Yeah. Yeah, and I think that was really good actually being able to weave in some of the stories that we’ve heard from other guests throughout the last sort of 18 months.

Debbie: The key themes as well that were coming across as well of feeling ashamed and not wanting to is not the right terminology, but it’s it’s how do you then tell like prospective partners, employers and also then if you’re diagnosed later on in life, the grief that you feel of what you thought your life was going to be. And it was just so lovely to sit in front of people.

Katy: It was brilliant. really, I actually, can honestly say I really enjoyed it even though, cause once this kind of initial nerves had gone and we got into the  flow of the conversation, it wasn’t that different to doing this.

Debbie: It’s not at all. No, the only thing different I think also was Katy was that I could just see you out the corner of my eye in this swirly chair.

Katy: My feet didn’t touch the floor properly. swinging around in a chair like a child.

Debbie: That was quite amusing. But then also we do try to bring that little bit of humour and light-heartedness to it also. That definitely came out as well. And also yesterday we committed to pod-adultry, didn’t we?

Katy: We did. I love this new word. I mean, we’ll give you all a minute to think about what that could mean. When I read it in the notes beforehand, I was like, what the hell is that? Took me a few minutes and then I read and went, yes, got it. So do you want to explain what it is?

Debbie: Yes. Yes. Basically, we were on someone else’s podcast. So we committed pod-adultery. I got that from Rest is Politics. When you go on another someone else’s podcast, that’s what you do and that’s what you’re committing. But we went on it’s the PSA HQ. We’re talking with Mel Brooks. That’s coming out later on in June. I found that really interesting not asking the questions though. I was so holding back and I was like,

Katy:

Well, no, I thought it was really strange. I could see on screen, was like, Debbie’s going to ask Mel a question. I’m like, you’re not supposed to be doing that. I think, yeah.

Debbie: I know. Yes, I’m not used to being asked the questions. I’m used to asking them. we’re definitely going to be getting Mel on because she lives with psoriatic arthritis and she does a lot of work with the patient partner involvement in the research side. And so there’s probably quite a bit of overlap and it’d be really interesting to hear her insights in what she’s trying to do to develop it bit further. So yes, but I just thought it was really interesting just trying to tell our stories

Katy: Yeah, no, was nice to be on the other side of the mic, so to speak. So I really enjoyed it and Mel is absolutely lovely.

Debbie: She is, yeah, she’s a, I must admit, very natural interviewer as well.

Katy: Yes, you can tell she’s been doing it a little bit longer than us. And what I found hilarious was she said, like, we’ve never, I’ve never met her before. I don’t know if you have, Debbie. And she said she feels like she knows us from watching and listening to the podcast quite regularly, is really lovely, actually. So I think it showed me that what we’re doing is we’re doing it in the right way if people kind of feel like they’re getting to know us.

Debbie: Well, exactly, you don’t actually have to physically go and meet us. Yeah, but what I would actually love to do on the back of what we have been doing is working out how to do some live podcasts. We’ve got the software for it. And so maybe not going to an actual venue, but people can then send in questions to us. So it’s a live sort of Q and A style, because we haven’t done a Q and A in ages actually. So I’m going to sort out some dates of when we can do that, hopefully one before the summer. So yes, so then please keep an eye out on our socials and our website and sign up to our newsletter so then you don’t miss anything. And that’s at inflammatoryarthritis.org. Because I think it would just great to kind of hear from the community that little bit more as well.

Katy: Yeah, I’m trying to think when we last did a Q &A. I think it was maybe, yeah, last.

Debbie: I think it was last year. don’t think, cause I can’t believe it’s coming up to the end of May, to be honest. I really don’t know where, moving at beginning of the year, that was stressful. And then, and now it’s just, yeah, almost end of May.

Katy: But your year has remained stressful, hasn’t it, really?

Debbie: It has, and actually, do you know what? Last week I did have a day off. My first day off in like ages, because even when we were moving, I was still working, I know I did, I needed it. I think with just everything going on at the moment, I might have my grandma’s funeral next week, so there won’t be an episode next week just because I need that time out with my family. I just needed a day off. I just could feel just the stress building up in me and I think I could feel my joints start to hurt as well. And I just thought if I don’t have a day off now, it was just gonna escalate so much. So, I actually went and had a haircut, which was, yes, yeah, because also I always have a friend cut my hair, which is lovely, but then I have to kind of put my back over her bath so she could shower it. And it’s, no.

Katy: Yeah. Yes, yes, because I spotted your hair on Friday, didn’t I? So it’s not that comfortable because I love going to the hairdressers. probably go every six months or something or once a year, but I do, love it when they ask you, would you like a head massage or it’s so nice. And I’m like, do it a bit longer, please. Yeah.

Debbie: I know, that’s why I went. I know I would happily just pay for that. think it was, I had that and I just keep asking her to cut it shorter again, because it’s just when you wash long hair and then it’s the drying it and holding the hairdryer because I generally naturally let it dry.

Katy: Well, yeah, I’ve got wet hair right now because I got bored.

Debbie: Yeah, and I just can’t, and my elbows, I still haven’t got my ultrasound appointment come through yet. I really might have to chase that. So hopefully do that next week But it’s just everything that goes along with having just long hair and then trying to tie it up as well. So I just thought if I need to do something.

Katy: And also do you find I’ve always found sort of when your hair’s got a bit ratty, it’s really hard to brush. So, when my wrists used to be really bad, I had trained my husband, I don’t think he was my husband yet. I trained him to brush my hair because I just really couldn’t do it. And I just got bored out my mind, it hurt my wrist, so I just go around with really ratty, knotty hair all the time.

Debbie: Years ago when my hands were really, really sore because I was still having to brush my daughter’s hair and they both had long hair at the time and I was just like, actually, we’re just going to get it all cut. So we all came out with bobs, which was no, they hated it. So they’ve now grown it back. But it was, and they actually said, you know, if I’m really struggling, they will actually wash it for me for free. But I, it was lovely, but then I, I would have felt guilty going in and not paying so I kind of then didn’t and as it was a lot shorter it wasn’t too bad but it is just that’s why sometimes I just if I can just whack my hair up as hard as it is to get it up at least I know it’s out the way and I don’t have to worry about it because do you tie yours up though?

Katy: Only when I’m doing sport, I don’t really like my hair tied up. I just don’t like the way I look.

Debbie: Okay. I’m the opposite. Generally, don’t like it down because I think it weighs so much on my, on my neck.

Katy: These are the things that people don’t tell you about though, when you’re first diagnosed, if you’ve got issues with your wrist, things like hair, things like washing can be harder than you would ever anticipate.

Debbie: No. It has been absolutely awful. It really has, which is why I then found hats suit me, thankfully. especially on the school run, because obviously you get the pristine mums and that and it’s just like, give me a hat.

Katy: Yeah. Well, I’m on my bike with a helmet on when I do the score runs. But I never, and I mentioned this on the live podcast when I was first diagnosed, I couldn’t ride a bike because of the angle of your wrists.

Debbie: Yeah, that is quite hard, isn’t it?

Katy: It really, really hurt. And it’s only been because my treatments really good for me at the moment. I think it’s only the last two, three years. was once I restarted playing tennis, I was like, my wrists are obviously not so bad. So now I’m riding a bike again, but I couldn’t do that to begin with.

Debbie: Yeah. It is because I know you can change the angle of some handlebars, but

Katy: Well, my dad was like, well, could, cause my dad loves bikes.

Debbie: He does. Yes, read his blog. Yes.

Katy: We’ve got about a thousand in my parents conservatory. My mum had this conservatory that she thought was going to be one of these lovely conservatories that you sit in and, enjoy a bit of warm weather. There’s a toilet in it. There’s a bike, which was not expected.

Debbie: Is it a working one? Okay.

Katy:  My dad and my granddad built it and my dad decided it would be great to have a sink and a toilet in it. He doesn’t have to come through the house when he’s been like playing around with cars or bikes in the garage. then so this conservatory, my mum’s dream of a conservatory never happened. Anyway, the point of the story was we’ve got about 50 bike frames in this conservatory. It’s unfortunate that I’m so short because I could get myself a load of free bikes, but they’re all too long for me. Not that my dad’s tall, he’s only five, seven. So basically anyway, I don’t know where I was going with that.

Debbie: He was probably going to show you how to.

Katy: That was it. He was going to make me some contraption, some like crazy contraption so that my, so like he was going to make me some handlebars where you could then, because if my wrists are just straight, so like for a press up, I can’t put my hands flat on the floor. I’d have to do it with my knuckles on the floor and then my wrist is straight and not at a 90 degree angle. So he was talking about, well, you can still ride a bike. I’ll just stick these things on your handlebars. I’m like, dad, honestly, it’s all right. I don’t want one of your dodgy contraptions that I’ll probably fall. I’ll probably end up with a broken arm.

Debbie: Hahaha! I also find running a bike, it’s the movement. Even though my bike did have suspension at the front, but my bike is like 20 or years old, it’s rubbish. But then I did find it’s the jolting that really then hurt as well.

Katy: It is, yes. So, when I first restarted, we’d go on little family bike rides and I was like, no, I’m not going there because it’ll jolt and it’ll hurt. That seems to have subsided now, but, hmm.

Debbie: Okay because that’s what really got me it’s just that consistent jolting and what you think is smooth obviously isn’t and obviously we know what the state of our roads and pavements and everything is, it’s a nightmare. but it’s great that you can now, you know, ride a bike.

Katy: God, they’re awful. Yeah. Yeah, it’s great that I can now, but it’s just these all these little things that you don’t, you don’t realize how much of a kind of toll they make on your day to day. And then it’s only when, if you are in the position I’ve been in where you then can go back to stuff, you suddenly realize it kind of is a stark reminder of the things you’ve missed out on.

Debbie: It is. Yeah. Yeah. but then it’s trying to not dwell on that and just go, now I can, this is great. Yeah.

Katy: No, now I can, which is brilliant, which is brilliant. But it is, you know, just the, it’s just the little things.

Debbie: Yeah, because it is, and I think even just washing your hair, because when you wash hair and you put a bit of makeup on, it can sort of hide what you’re kind of feeling, I think, a little bit, and just put that extra persona on.

Katy: it’s like, it’s wearing a mask, isn’t it?

Debbie: Yes, yes. So, I kind of think sometimes, you know, if I’ve made the effort to do that, but then when you are in so much pain, you can’t. And I just think that adds to, this is why I generally don’t have mirrors in my house, because then if I looked at myself, I’d be like, oh God, I look horrendous. My hair’s just a mess because I can’t wash it. I can’t put makeup on. Cause I remember not long after, I was still going through everything with my eye and I was invited out to this really posh dinner. was to raise money for a local hospital and the children’s ward is, thought I really want to go. But then because of my eyes, I couldn’t put mascara on. couldn’t, and I was thinking like, I need to do something because it’s a posh dinner. then I felt, oh, do I really want to go? And I thought I had to push myself to go, even though I know that everyone else was dolled up and obviously all the makeup and everything. Not that I’m a makeup-y girl, but it’s just that little bit that makes you feel a little bit better.

Katy: Oh yeah, it makes you because when I go into London, into the office, I always put makeup on just because it makes me, I don’t know, it makes me more confident actually, because it is that mask, which I kind of don’t agree with, but I do it, so.

Debbie: Well, I don’t agree with it either. again, my girls have so much more makeup than I do. I have like three things and that’s about it. And I occasionally put mascara on, I just remember how I felt and it’s just like, I want to look lovely, and I want to look nice, Do I put it on to feel the pain? I was thinking, no, I can’t. But then I always used to never go out wearing glasses. I always used to wear contact lenses. And I can’t wear contact lenses now just because if there’s anything that gets in it, any pain, I just straight away just think, no, I can’t cope with that. But yeah, it’s how you then adapt, I think, with everything that goes along with it as well. And one thing that is going to adapt…I went to this meeting yesterday with the National Voices, which we are as a charity, we are a member of, and they were talking about the NHS online. I don’t know if you’ve heard about it, Katy, that’s all.

Katy: I hadn’t heard about it until you mentioned it.

Debbie: Yeah, so what they’re trying to do in October 2027 is you know we have NHS Trust. This is going to be a new online NHS Trust. So, it’s going to cover the whole of England, and everything is basically going to go through the app.

Katy: Okay, and is it similar to like they were setting up like the virtual wards, weren’t they at one point?

Debbie: Something similar, but this is when you are not yet diagnosed. You’re just going down a referral pathway. So, there’s one for gastroenterology, ophthalmology, gynecology and urology I have a few concerns about each of them because obviously I see an ophthalmologist and even for glaucoma because they have to do your pressure in your eye. I’m not quite sure how that’s going to work, but obviously if that’s what they think can work. We just have to wait and see. if you’ve got then a massive waiting list in your area, it will then be for any consultant around England. So you probably will get seen quicker and trying to, I think, also take the time and the travel out of your life So I can see the benefits for it, but I’m also slightly concerned because we were talking just before we started. How did you know about the NHS app? Well, you were saying it was through COVID.

Katy: I think it was through COVID because we all had the COVID app. And I feel like after I’d had that, that’s when I had the NHS app because that’s where I could see all the information about the vaccinations that I’d already had. And there was a few things that you had to prove, didn’t you, if you’d been vaccinated for some entries into some stuff.

Debbie: Yeah, I didn’t go anywhere, so I wouldn’t have done. because I think this is this whole educational piece. It just hasn’t been put over to us, especially as patients. And we use the NHS a lot. And actually, what is it for? What can we use it for? What can’t we use it for? Again, it’s so different throughout the areas. Because now I can’t access my blood results. I used to last year, but I can’t now. Whether that’s because my address has changed, I don’t know.

Katy: are you still seeing it by the same trust since you’ve moved?

Debbie: Yeah, because it’s only 10 minutes off the road, I’m still within the same area. But yeah, I can hardly see anything and everything that I could then see like my blood results of last year, I can’t see any test results at all. So it seems to have gone backwards instead of going forwards. And I only got the NHS app through a colleague. We were talking about it in a meeting. was like, well, I’ve got it. And I was like, no, no, no, this is a different one. I can see my medical record. I was like, okay.

Katy: Because I can’t see my medical records on it. I have tried and I’ve never been able to.

Debbie: Again, I used to, but I can’t now.

Katy: And it really depends, think, on, because I think the NHS app is more linked to your GP. That’s what I’ve seen on it, because I can book GP appointments and I can do my repeat prescription.

Debbie: but again, it just seems like, if you’re going to be doing all these things online, great. You know, this is how things are now and we have to utilize what we’ve got. But we have to be educated on then how and why we can use it. And then if then, if something then goes wrong, who do we then contact?

Katy: Yeah, yeah, because the difficulty with anything that’s purely digital is then, and I’m sure we’ve all seen this happen with, whether it’s kind of like your mobile phone or your bank, everything’s digital. You talk to either a chat bot or, and then you call to try and get some support and you just keep going. And we have this issue anyway with our hospitals, but you call and you never get through to the right person.

Debbie: No, you don’t or you’re just sitting there talking to a chat bot and they’ll connect you to some point at some who knows when.

Katy: Yeah. When you say some secret word that is coded to calling somebody. Yeah.

Debbie: Yeah, but then also apps crash. You know, I’ve had it with banking apps and it’s been on the news that banking apps crash. So actually, then what then happens. And it’s just the detail that we need to be properly reassured that actually this is going to work. And these are all the contingencies. If something happens, it’s all there. I didn’t fully get that. I’m sure it is all there if we’re then going to be saying to patients, go use it. I think we need to be really reassured that how it’s going to work. So, watch this space again, as I say, we are members of the National Voices. So, anything that does happen, we will feed back to you as well. And if you have any questions, please do get in touch because then I can contact them and we can get them answered for you I think it’s like everything great in theory, but actually how things then work in practice can be slightly different.

Katy: I mean, I think we’ve, yeah, I mean, all I have to say is digital genius. I think we’ve.

Debbie: Yes, I did ask the questions yesterday to say that it’s only going to be for 18 year olds plus. yeah, so NHS app is 13 and above, but the NHS online trusts will be 18 and above. They did say eventually it might move on to pediatrics. Because also actually on the meeting, people were saying that they were getting their diagnosis, pinging through to them on the NHS app. Yeah. And again, slightly.

Katy: What? my word. I think that’s really concerning. You want these things to be talked through in person.

Debbie: Yes. And I think it came up with, was it Keith that we were talking to because about that, because then they were saying sometimes that we can see our blood results before, obviously some people can, probably before the consultant can. And actually you made them worry, but they’re fine with it. You know, they’ve seen your previous ones and it’s all fine. It’s within your normal range. So, it’s fine. But for you, it’s actually…

Katy: Yes, it’s fine. if you don’t know that, so there’s a lot of, yeah, I mean, receiving a diagnosis would be, for me, I would find that awful if it was a, it’s like being dumped by text message.

Debbie: Yes, it would be. So again, we highlighted it to them, hopefully they now realize that actually, some things you do need, that human touch. And I think, and I think with health and what we were talking about with Mel’s podcast yesterday is why we are doing this is because it is that human side of life and everything because most of the guidelines, you know, that are there, they’re great and we have to,

Katy: Yes. Yeah. called guidelines for a reason.

Debbie: We don’t want our lives to be restricted, but we know that they’re there. We know what we should and we shouldn’t do, but then also we have to remember that we are human. and there are so many emotions that goes on with living with a chronic fluctuating disease. And that sometimes if you then feel that you’re not completely 100 % compliant to the guidelines, you can then feel, well I sometimes do feel like, oh my gosh, I shouldn’t have done that, I shouldn’t have done this, and then that adds to your stress levels and everything, it’s just, we are human.

Katy: Yeah, 100%.

Debbie: So yeah, so we are going to be having a couple of weeks off next week because of the funeral and also just the week after just because I’m…I feel quite uncomfortable doing all of this, but it’s kind what we say to other people as well because I don’t want to be in so much pain.

Katy: There’s been a lot, yeah, and there’s been a lot for the charity happening because we’ve done a national conference, we’ve done a live podcast. I think you 100 % deserve a little break,

Debbie:  Well, I will be having a few meetings and I know that we’re going to be doing, because with the charity commission, we need to be sending our accounts and our impact report through and everything. So hopefully that it will give me some spare time just to kind of get everything else out there and then really think of our strategy for the next two years as well. That’s going to be on my mind because we’ve done so well and considering what we’ve done and not even 18 months old yet, you know.

Katy: Yep. Yeah, it’s amazing. And there’s so much more we can do, but it’s just deciding what’s right for the resources that we have.

Debbie: Exactly, yes. I know we do have Volunteers Week coming up in June, so again, if you would love to volunteer for us, please do get in touch and we’d love to have a conversation with you. There’s so many things that we can do. Again, it’s just, yeah, we have limited resources Well, thank you, Katy I really hope you have a nice, bank holiday weekend, and I’ve looked at the weather forecast and it is meant to be amazing.

Katy: But that can have significant side effects for us, can’t it? It’s going from the cold, because like today it’s really damp, it’s really miserable, it’s horrible. So going from that kind of cold, damp weather to hot weather, always got to be a little bit cautious. So I will be having ice packs at the ready, to be honest, because quite often things just go a little bit awry when the temperatures fluctuate so much.

Debbie: And also if you are outside suntan lotion as well.

Katy: Yes, yeah, because that’s something I all, and I know it’s across many of the medications we take, but biologic specifically as well. You do have to be a little bit more careful and it’s something I forget about every year until I see something on social media. I forget about it completely. Yeah, for myself. Remind me, remind me.

Debbie: Okay. Yes. Well, we’ll do something on social media as well. Yeah. Then Katy can see it and do as we say.

Katy: Suntan, although most of my moisturizers, so my face generally has it on anyway, but it’s just other bits of the body, isn’t it?

Debbie: Yes, yeah, and you kind of forget your arms and your neck as well, especially when you play sports with your hair up.

Katy:  Yeah, ears, My granddad from golf had, he got skin cancer in his ears because they were always out and didn’t have sun cream on. I mean, yeah. So you’ve got to be uber careful.

Debbie: You really do, yes, because think my girls are obsessed with the UV rating and I think that’s going to be very high next week as well. So yes, be careful out there and stay hydrated as Very, very important. No, I’ve seen the amount of water you drink, Katy.

Katy: Not a problem for me, Debbie. We know it. You see about a stretch to the toilet that’s the bad side effect there.

Debbie: Yes, there is that. But anyway, please do sign up to our newsletter at inflammatoryarthritis.org and we will send you weekly newsletters about the episodes, upcoming episodes, any news, any research opportunities as well. We are on social media, we’re on Instagram, Facebook, LinkedIn and Blue Sky. And you can actually watch us on YouTube as well where you can subscribe to our channel. Thank you so much, Katy, for your time, for this year and for everything as well that you do for the charity. I probably don’t say it enough, but without you, this wouldn’t be happening either. So, thank you and make sure you have some really well-deserved time off as well. Cool. And until a couple of weeks, it’s goodbye.

Katy: Thank you. Goodbye.

Debbie and Katy sit down after a whirlwind few weeks, including their first ever live podcast event, a national conference, and even a little “pod‑adultery” (appearing on someone else’s podcast). They reflect on the nerves, the joy, and the powerful audience reactions during the live show, where themes like shame, disclosure, grief after diagnosis, and identity came through strongly.

The pair also dive into the everyday realities of living with inflammatory arthritis, opening up about the often-invisible challenges behind simple daily tasks like washing and brushing hair, cycling, and managing pain and fatigue. They also discuss concerns around digital-only NHS healthcare pathways, the importance of pacing and rest, and share updates on upcoming IAUK plans, including the return of live Q&As and volunteer opportunities.

Key topics:

• First live podcast experience and audience reactions
• “Pod‑adultery” — appearing on Mel Brooks’ PSA HQ podcast
• Common themes: shame, disclosure, grief after diagnosis
• Everyday challenges: hair care, cycling, makeup, pain management
• NHS App + NHS Online Trust concerns and digital‑only healthcare
• Stress, pacing, grief, and taking time off
• Weather changes, flares, sun safety on biologics
• IAUK updates: live Q&A plans, Volunteers Week, newsletter and socials

Key words: inflammatory arthritis, psoriatic arthritis, chronic illness, live podcast, patient stories, NHS App, NHS Online Trust, digital healthcare, arthritis fatigue, arthritis pain, biologics sun safety, chronic illness grief, disability disclosure

Resources & Mentions

• PSA HQ Podcast with Mel Brooks — episode coming June
• IAUK Newsletter & Website: inflammatoryarthritis.org
• IAUK Socials: Instagram, Facebook, LinkedIn, BlueSky
• YouTube Channel: Watch full podcast episodes
• National Voices — discussion on NHS Online Trust plans
• Volunteers Week (June) — opportunities to support IAUK

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/