Episode 57 Beyond Awareness Days

Introduction: Awareness Days come and go, but life with IA shows up daily. Inflammatory! with Debbie Wilson and Katy Pieris Navigating Life with Inflammatory Arthritis.

Debbie: Hello and welcome to Inflammatory with Debbie,

Katy: and Katy.

Debbie: How are you, Katy?

Katy: I’d mentioned, I think on a couple of episodes, I’ve said, I haven’t had an appointment for a while.

Debbie: Yes!

Katy: And I had this funny call from my nurse. I can’t remember when it was, maybe just over a week ago. And she’s like, we haven’t seen you in ages, have we? And I went, no, no, you haven’t. That’s funny, isn’t it? You haven’t booked an appointment with me. And she went, well, your funding’s up for your biologics, so we need to have an appointment to put the funding in. So, she set up a telephone appointment with me for the next, I think it was the next week, which was yesterday. And then out of the blue, the day before, she rang me at like 4pm. I was in the office, and I was like, oh, no ID caller. That’s a bit weird. That’s normally the hospital when they ring for one of your appointments. And I was like, but she set it up for tomorrow. What is this? Anyway, answered and she’s like, the person that was supposed to be calling you tomorrow now can’t do that time. So, I thought I’d just call you now. Is it convenient? Not really, but okay.

Debbie: Well, if it’s not convenient, what do you then say? Can you then call tomorrow? But we know the person’s not there tomorrow.

Katy: It was really bizarre. Then anyway, we, did the telephone appointment. She’s going to put in the funding. So, my prescription will then hopefully get signed off pretty quickly. but then she was like, but we haven’t seen you, have we? For ages. was like, no, we had this conversation a week ago.

Debbie: my gosh. Ooh.

Katy: And then she was kind of like, oh, we’ll send you something in the post.

Debbie: Send you what in a post an appointment and an update. Okay an appointment in the post.

Katy: Let’s see. Let’s see. We’ll keep this appointment. Yeah. An appointment for yeah, for six months time. But I’m sure that’s what they said after my appointment a year ago in person. I mean, I could have followed it up and I’m two minds because in parts of it, I think it’s great that they’ve spotted it and they’ve got in touch with me.

Katy: But then on the other side, you know, should this really be happening?

Debbie Wilson: It’s interesting, isn’t it? you would have, I know, I think if they’re going down the patient initiated follow up, you may be on that sort of pathway. Of course. Yeah, yeah. definitely. Yeah, yeah, no, no, you should be told.

Katy: But I should be told. But when it’s for biologic medication, when they have to see you to set up your prescription and your funding, then I think that’s on them, not me.

Debbie Wilson: Completely. Also then, because then of getting back to, you know, our admin episode, you’re in the system. So, then you, how can you, who would you then phone in order to get an appointment? If it’s say a routine appointment, would you, because for mine, I’d probably have to go through the whole of the hospital booking system. But then it’ll be there, but then they won’t understand why I need an appointment

Katy: Yeah. I think it’s brilliant that they got in touch with me. So I can’t grumble. And I did remind them of this podcast, she might be listening.

Debbie: Hahahaha. Yeah, we don’t slate them at all. It is the system that just needs improving. it just helps where to know when our appointments are, a part of our lives.

Katy: and it is quite hard, so it had been on my mind that I knew I hadn’t had an appointment and I was like, I will call them. But then part of my brain was like, I really can’t be bothered. So, because it’s going to be painful. I’m going to get annoyed. I’m going to get angry. Not at, not at who I’m speaking to, but at the situation. I’m going to be frustrated because I’m going to call. They’re going to be like, well, you can’t call this number if you haven’t already got an appointment. You have to call this number. have to go here. Anyway, I could go on forever. Yeah.

Debbie: Yes. Again, it’s a system, isn’t it? That is the system. It’s not straightforward at all. So it can get quite, it can. Yeah, I completely agree.

Katy: Yes. It can get messy. It just gets a bit messy because nobody, they don’t understand what you’re calling. You don’t understand their system. And then everybody just gets frustrated, which is what we talked about the other week, two weeks ago.

Debbie: yes. And just hopefully things, you know, should change for the better. But yes.

Katy: Yeah. And how are you Debbie? Because obviously it’s two weeks ago now that you had your operation.

Debbie: it is. It was interesting. I still have bruises on my hands. You saw them when I was at the conference last week. I still have bruises on my hands because I couldn’t get the cannula in properly. So they tried and then they eventually put it through in my elbow where I have, generally had blood tests. And, but they didn’t tell me. And so I was just lying there thinking, I feel, I feel really horribly drunk, I felt really awful. And I was like, don’t worry, that’s just the anaesthetic. Yeah, you’ll be out in a sec. And obviously I was. And then I woke up in this really strange, very clean, very strange room. And I asked the nurse, was like, so, you know, was it successful? Did it go okay? And she goes, I don’t know. I wasn’t in there. And I was like, okay. And that was all she spoke to me about. And then she then phoned the ward few times and this other nurse came down, picked me up and we went upstairs. And then I was just like, so again, how did it go? I don’t actually know because I can’t read the doctor’s notes and he’s in surgery at the moment. I just want to know really, you know, did it go okay is because they weren’t quite sure what it was. But it was just so, so bizarre. And I was so out of it. I think general anaesthetic and I do not really get on I was just so out of it for ages. And then one of the nurses came to do my monitoring the blood pressure. She didn’t realize that where they put the answer was in my arm because that generally doesn’t happen. And she caught it. And it that really hurt and then blood everywhere. Thankfully they then sent me home later in the evening and said, you can’t drive for 24 hours. I was like, I can’t even walk, let alone drive.

Katy: No, you don’t want to drive. Yeah.

Debbie: So I can’t do any strenuous activity for two to four weeks. So yeah, hopefully soon. But yeah, it’s been a little bit sore and everything, but then also I had this whole complication of taking my medication because I take it weekly.

Katy: Yeah, yeah. And that’s something people talk about a lot. Yeah.

Debbie: Yeah, so I let them know, because there was a pre-op assessment that I had to do and I highlighted it to them and they’re all, okay, we’ll get a pharmacist to call you. So again, they called me. Again, all these numbers are unknown. And sometimes on my phone, it comes up suspected spam or scam. So, I spoke to the pharmacist, and she was like, well, I’m not too sure because when do you generally take it? I was like, I take it possibly on a Tuesday. So do I take it today or not? And she was like, probably not. So, don’t. But then I speak to the consultant. The consultant then spoke to the pharmacist. They phoned me then back saying, no, actually you can. And then I realized that because we were going to the conference the week after and my husband does my injections that I was thinking I’ll wait till the weekend. So, he can do it on the Sunday. But then it is just that complication that they didn’t realize, even though I highlighted it to them. And it’s all on my notes as well, which medications you’re on. And immune suppress, and they’re like, well, you might get a risk of infection. was like, well, I know that, but

Katy: I know. Yeah.

Debbie Wilson: yeah, eventually got through it all. But unfortunately, I had some sad news the next day that my grandma, my nan had died. So yes, that was very sad. In the end, it was quite quick, but still a bit of a shock.

Katy: Yeah. But it’s a lot, isn’t it? Kind of operation and then a death in the family is horrendous to go through. All in one go, yeah.

Debbie Wilson: And getting ready for our first conference. My youngest was a tail end of her mock A levels. And then my husband then went to Germany. He just got back this week. So yeah, there’s been a lot going on. And I think I’m just mentally tired and drained, but then it’s all the admin stuff as well, just trying to get the death certificates and things. And that’s taking so long from the hospital. So was trying to talk to my mum, was like, it’s the system, don’t worry. Yeah, and this is a straightforward thing. Do you like that? It should be great. That should be straightforward but then turn out not to be. And that just really adds to your mental load as well. So, so yes, it’s been, it’s been a lot. Yeah, I can’t see it kind of decreasing at the moment, but you know, but that’s life. You know, this is what happens. But I am just making sure that for once I’m actually trying to take some time for me though, because I know that eventually my joints will start hurting. And I’ve had really, really bad twinges in my elbows. Again, I still haven’t had my ultrasound appointment come through And it’s just, I don’t have time to trace that up though, at the moment. I’m trying to make sure that I listen to what Andy and all our guests have said and Charlie, that self-compassion, just look after yourself so I can help others as well. yes.

Katy: Yeah, because I guess as well you’re having to support your wider family as well at the moment, as well as trying to look after yourself and your immediate family. It’s a lot to do.

Debbie: It is, yes, and it hasn’t helped, you one conference after another and, you know, my husband and I haven’t really seen each other for probably a couple of weeks anyway, which, present concert.

Katy: No, it’s a bad thing, is it? Sorry.

Debbie: So yes, it’s just trying to navigate what goes on also in death. Because again, that’s something that’s never really spoken about. Because I suppose all these things are generally happening, you go to the funeral, but there’s so many things before the funeral that you have to start to think.

Katy: Yeah, luckily I’ve not had to get involved in any like family death admin stuff, but doesn’t sound like much fun at all.

Debbie: Not really. And when you’re going through grief as well, because she was 100 completely fair enough. She had a really great life, and she was so lucky that she never had a long-term health condition. She never had any health issues.

Katy: wow. That’s impressive. That’s really impressive.

Debbie: She was so, so lucky. But it is, yeah, yeah. There was nothing really wrong with her in the end. was just old age, but it’s just trying to work out and just go through the…she’s not there and it’s that grief that comes in waves. I listened to something, I think it was on another podcast, talking about death because it’s not spoken about and trying to prepare people as well for it because there’s just so much that goes on. So then someone dies, close to you, you have to deal with all the admin side whilst you’re still going through grief. And that is so, so hard. But obviously we’re going to be talking about awareness months, weeks, days. May seems to be very awareness-y.

Katy: Yeah, weeks, days. I mean, that’s why I thought this would be a good idea for the episode because I don’t think we could do an episode on each one because in May there’s too many. Yeah.

Debbie: I was going to say there’s not enough weeks in May, there? But there is mental health week and I think, anything that is extra in your life, just make sure you take that time to try to process everything and just give yourself that self-compassion and that self-respect. And there are amazing charities out there, if you do need to talk to someone, again, the links are being our show notes because life can be hard. Nothing is, nothing seems

Katy: Nothing’s

Debbie: Easy at the moment.

Katy: easy. No. And I think, you know, with the state of the sort of economy, everything’s so expensive. All I get served on Instagram is reels about how much things cost in like 1999 versus today, which just makes you spiral because salaries don’t increase at the same rate as kind of the cost of things. The cost of living can have a huge effect. Things going on in your family can have a huge effect on your mental health, but then also living with a long-term condition. And we spoke at length about this last year, so we’ll make sure we link the episode last year.

Debbie: Yeah, you are not alone. That’s the episode. Yeah.

Katy: Yeah, living with a long-term condition also is hard for your mental health. And going back to Andy’s episode, hearing that he had some support as part of his NHS service, I think that’s fantastic. And I personally would love to see that more widely happening.

Debbie: So would I. Yeah, because I’ve never been offered it at all, even as a child. So you definitely someone to talk to. Because also, know, yes.

Katy: No. There isn’t like your close family because actually kind of sometimes opening up to somebody close to you can be, it should be the easiest, but it can also be the hardest because you don’t want that sort of pity. You don’t want a pity party. But if you’re talking to a stranger or, or a professional, then it can, you can weirdly feel more secure in having that conversation because it comes without judgment.

Debbie: Yes when you then go and talk to a professional, they give you just a different perspective on it and they give you the tips. There’s evidence to prove that these things work. So actually try them.

Katy: Yeah. Yeah. Cause this seems like a lot of local areas have, can self-refer yourself to talking therapy.

Debbie: Yeah, and it doesn’t work for everyone, but you need to give it a try, and you need to give it that time as well. A bit like our medications, you need to give it that bit of time just to see if it actually works. Because also, you know, mentioning grief, sometimes I think what probably whatever time you’re diagnosed, you can feel a grief for your life that has changed. when you’re going through pain and everything until your disease is well controlled.

Katy: Yep.

Debbie: Sometimes you won’t be able to live the life that you did before. And so, you will naturally grieve for it because you’ve lost it.

Katy: You grieve the life you think you were going to have.

Debbie: The episode about the impact on families, that it was their retirement that then completely changed. And, you know, but that’s all they’ve had, you know, thinking about this would be great when we retire, we can go do this, this and this and actually. They couldn’t and it’s just trying to change, Let’s not focus on what we cannot do. Let’s focus on what we can do. Because I went to, also, I went to a really interesting, fascinating talk about MND this week. And they were talking about life is still meaningful after diagnosis and how the MND community get together and, through charities, they get the support needed because obviously it’s a horrendous disease. And you know that once you lose movement in your legs, you’re never going to get that back. it was just, and they had someone talking from lived experience and I actually was thankfully online because I was getting quite emotional. It was just really hard to hear, but then they have their humour. He was then talking as well. And the humour that came out is just like, we need the humour to keep us going. And we’ve mentioned on our, we’ve had an episode on the podcast talking about can you still have your sense of humour?

Katy: Yeah

Debbie: Definitely, because that’s the one thing that gets me through it all. And so, yeah, so, of course you have. And try to flip things just to, yeah, again, just to focus on what you can do. It is hard. Don’t get me wrong, it’s hard.

Katy: Yeah, you’ve got to laugh about all these things. Yeah, it’s like when my friend named her chicken after me and called it Claw because I thought my hands were going to be like claws.

Debbie: But then, getting back to the episode last week with Rosemary and how things have changed in such a short amount of time that they used to have the inpatients, people with all these long term, you know, joint damage and everything. And now thankfully we don’t. We have these medications out there, which is great. And it’s just trying to still live your best life whilst on the medications and that as well. Sorry, yeah, getting back to the awareness days, there are loads, Katy

Katy: Yeah. Yeah, I mean, I’m not sure we’re going to be able to talk in depth about each one, but I think it’s good just to sort of signpost and what we’ll do on socials is kind of signpost these days. And I think really, it’d be great for people to share their stories, send in blogs about their experiences of living with these conditions. So, I know the axial spondyloarthritis awareness day on the 2nd of May. So, I think we signposted to Charlie Robards a few of our episodes that we’ve done. And we really sort of got behind that last year because that was our very first interview with Rachel Smith. Yeah.

Debbie: Yeah. That was a fascinating chat. She was absolutely lovely. Well, all I guess are lovely. So yeah, it’d been brilliant. Yeah. So we had Rachel, Adam, James and Charlie. They all have Axial SpA. Their journeys and their stories are absolutely fascinating. Yeah. So please do go and listen back to those ones.

Katy: Yeah. And the theme of this year was not only back pain. it’s about that. And Rosemary talked in last week’s episode around sort of the differences in what is actually back pain and what is actually back pain where you need to go and seek another opinion.

Debbie: I found that really insightful actually, because it does mimic mechanical back pain and actually how they and just trying to make sure that people are aware of what else can go on. And it is again more than just back pain and go and get seen because there are probably so many undiagnosed people out there.

Katy: Yes!

Debbie: Yeah. And then

Katy: There’s auto-inflammatory awareness day on the 20th of May, which is all about driving awareness. There’s a big car theme there. So, I feel like Debbie, you can help with some of that social media posts because you love a car. You’re a bit of a metal head, aren’t you?

Debbie: Petrol head, yes.

Katy: Petrol head, metal head complete.

Debbie: That’s staying in. Yes, I am a bit of a petrolhead, yes, even though I can’t drive, low sports cars anymore. I have an SUV for my back. But we had our event last year. We did have our first online event as well last year around that time. But just with everything going on with me at the moment, I just haven’t had the time to actually sort anything out. So we will do, but yeah, just again, look at our socials because we really do need to raise awareness of autoimmune inflammatory arthritis.

Katy: And then the 12th of May, there’s international, it’s a very busy day because it’s still mental health awareness week. It’s international nurses day and it’s also fibromyalgia awareness day.

Debbie: That’s a busy day, isn’t it as well? Yeah.

Katy: And you have fibromyalgia.

Debbie: Yes I do. I keep forgetting to be honest, just because I just, well, it’s just, it’s just constantly there. So, it, that’s, I’ve just learned that that’s now, you know, that’s my life and I do get pain.

Katy: I know, you never talk about it. Because there isn’t really, is there treatment for fibromyalgia?

Debbie: Well, I was always told there’s not, well, you’re actually going to get someone from the Fibromyalgia charity to come on and talk with us because we know that there’s quite a lot of overlap as well. And I think people have now found out that having inflammatory arthritis can cause fibromyalgia as well. So we’re going to have people coming in and talking about that to actually understand why it happens. And yeah, and if there is any treatment, because yeah, my doctor’s just said, well, I can diagnose you with this. You have it, but there’s nothing we can do about it. So story of my life, really. No.

Katy: Yeah. I was about to say, it’s not like it’s something you haven’t heard before. And I had somebody who I know, she was diagnosed with RA and then about three years later, she was actually told, no, you’ve not got. So she was put on all the treatments for RA and then it was actually kind of, they then came to the diagnosis that it was actually fibromyalgia.

Debbie: So did the treatment work though?

Katy: Don’t really know. I haven’t really asked her.

Debbie: Okay, because that would have been interesting because if it had worked.

Katy: Yeah, well maybe, clearly it probably didn’t. Actually, good question. don’t know the answer to that.

Debbie: But we do know there are overlapping symptoms and that as well.

Katy: Yes, yeah, which is probably where the misdiagnosis came from.

Debbie: That’s something hopefully we can then raise awareness on as well. And International Nurses Day, your hats off to all the great nurses. I don’t see my nurse anymore. She was absolutely…

Katy: Yeah. I love the nurses. I see the nurse more than anybody.

Debbie: I just see my consultant once a year and that’s, yeah, I’ve got no idea who the nurses are.

Katy: is that it? Because we have a biologic nurse and that’s who generally I talk to.

Debbie: I know there is a biologics nurse there because a few years ago I was in so much pain and I was flaring really badly. And they told me to then I was going to go back on a DMARD, which I didn’t really want to do along with my biologic. But then she then spoke to her biologics nurse and said, actually, no, the biologic you’re on, you can now go on weekly. So that should help. I was like, okay, that sounds much better than going on this DMARD that just did not work for me at all previously. So I was very worried again because it’s like, know it doesn’t work. Why? Yes, then, yes, she spoke to the nurse, but I didn’t, so I’ve no idea who she is, but obviously that they do great work behind the scenes.

Katy: Oh, because I loved my first nurse. I really miss her. I can’t remember what happened to her. I know if she retired or, oh, she was just amazing, but I really miss her. I like my new one as well. I said to one of the nurses at the BSR conference, was like, but there’s just so much more motherly.

Debbie: Yeah, they’re just more empathetic, I think. Yeah.

Katy: Yeah, that’s the word. Yeah.

Debbie: And that does come across because obviously we know that consultants are so busy, they’ve only got 10 minutes to talk and go through everything with you. Whereas the nurses do seem to have a little bit more time,

Katy: Yes. It’s more that kind of that personal connection rather than it being that sort of more medical side.

Debbie: Yeah, yeah, I’m actually really lucky I have that with my consultant. But yeah, and she’s, she’s lovely. But I know that she’s just works very, very hard. As Rosemary said last week, there’s not enough hours in the day.

Katy: So, I don’t even know who my consultant is. So, I’m kind of the opposite to you. I know my nurse really well, but not my consultant. Because she remembered when she spoke to me on the phone, she remembered that I’d given her one of our QR codes last time. I was like, have I told you about our charity? And she’s like, yes, she gave me a QR code. I was like, okay. Yeah. Yes.

Debbie: We’ve got posters to give her now or flyers. But yeah, but also it is in America and I think they’re trying to do a bit more over here. is Arthritis Awareness Month as well try to do what we can to raise awareness, the differences between them all.

Katy: Yes, yeah, because I think that’s the thing. It’s kind of understanding and that’s why it Rosemary last week was just so amazing because actually with psoriatic arthritis, I didn’t really understand the fact that that can affect the back as well.

Debbie: Yes I think I knew, yeah, I kind of forgot the spondyloarthropathies. And then these words are so long and unpronounceable. Geez, yes.

Katy: Yeah. Why can’t it just be inflammatory back arthritis? And I know it’s not just the back. So I know that’s also not right, but yeah.

Debbie: But yeah, these words, yes, they at some point need to change. anyway, that is all the awareness stuff. So please do look out on our socials. And sign up to our newsletter at inflandatoryarthritis.org. there, have a look through our website as well. We have all the podcast episodes, and we have your stories on there as well. And if you’d like to share your story, please do get in touch email us at info at inflammatoryarthritis.org. As I say, we are on social, so please do keep an eye on our socials. We are on Facebook, Instagram, LinkedIn and Blue Sky. So please do follow, like and share and comment as well. It really, again, it helps with our analytics to get us out a little bit more as well. I think it’s been a fascinating episode, Katy all these awareness stuff and everything that goes on behind the scenes of just life really.

Katy: But I also think everything should be beyond the awareness days and we should all be raising awareness all of the time.

Debbie: I completely agree. And that is a fantastic thing to end on. So yes, that well, that’s, this is what we’re doing. We are raising awareness every single week about these conditions and what we go through and what other people go through as well. So yes, thank you, Katie. It’s been great. And then until next week, we’re actually at another event. We’re doing another event next week. But when this comes out, it will be the day of the event. yeah, so we will then we’ll talk about it at the week after. yes, but until then Katy lovely as ever and speak to you soon is goodbye.

Katy: Goodbye.

Awareness days come and go, but life with inflammatory arthritis shows up every single day, especially when your hospital appointments disappear into the system. In this episode, Debbie and Katy talk candidly about the reality of being “lost in the system”, from missed biologic reviews and last‑minute phone calls to the emotional and practical fallout when admin goes wrong. Alongside the realities of recovering from surgery, grief, family pressures and the mental load of chronic illness.They also explore the many awareness days and weeks in May, from Axial SpA to mental health, fibromyalgia, auto‑inflammatory conditions, and International Nurses Day and why awareness shouldn’t be limited to a calendar date. Life with IA is every day, and so is the need for understanding, compassion, and community.

Key Topics

• The reality of hospital admin and biologic funding renewals
• Navigating unexpected appointment changes
• Surgery recovery, anaesthetic effects, and medication timing
• Grief, family responsibilities, and emotional load
• Mental health and long‑term conditions
• The importance of self‑compassion
• Awareness days in May: what they mean and why they matter
• Axial SpA, auto‑inflammatory conditions, fibromyalgia, and arthritis awareness
• The role of nurses and consultants in IA care
• Misdiagnosis and overlapping symptoms
• Why awareness should extend beyond awareness days

 Awareness Days & Weeks Mentioned

• Mental Health Awareness Week
• Axial Spondyloarthritis Awareness Day — 2 May
• Fibromyalgia Awareness Day — 12 May
• International Nurses Day — 12 May
• Auto‑Inflammatory Awareness Day — 20 May
• Arthritis Awareness Month (US)

Resources & Links

• IAUK Website: inflammatoryarthritis.org
• Share your story: info@inflammatoryarthritis.org

Mental health support: If you are struggling or need help with your mental health, below is where you can find support:

• Suicidal thoughts can be distressing, you can find help here
• Samaritans https://www.samaritans.org/ 116 123 always open
• Mind https://www.mind.org.uk/ 0300 102 1234 Open 9am to 6pm weekdays
• Shout  https://giveusashout.org/  Text Shout to 85258 open 24/7
• Campaign against living miserably https://www.thecalmzone.net/ 0800 58 58 58 open 5pm to midnight
• If you’re in Wales C.A.L.L. https://www.callhelpline.org.uk/ 0800132 737 Always open

Episodes referenced:

• Episode 5: You Are Not Alone (mental health & IA)
• Interviews with Rachel Smith, Adam Newton, James Hollen, and Charlie Robards on Axial SpA
• Episode with Rosemary Hollick
• Episode with Andy Kelly (mental health support in rheumatology services)

Connect With Us

We love hearing from you — your stories, your experiences, your questions. Follow, like, share and comment to help us reach more people living with inflammatory arthritis.

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• Newsletter: sign up at inflammatoryarthritis.org

If you’d like to share your lived experience, email us at info@inflammatoryarthritis.org.

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/