Inspiring Resilience - Empowering Lives

Episode 52 Andy Kelly: Living with psoriatic arthritis

Key topics discussed

  • Andy’s early symptoms and long road to a psoriasis diagnosis
  • How psoriatic arthritis developed and why he didn’t recognise the signs
  • The emotional impact of visible skin disease, including a painful experience at a swimming pool
  • The role of dermatology–rheumatology joint clinics
  • How psychological support helped him accept his diagnosis
  • Starting biologics and navigating treatment options
  • Living with flares: unpredictability, pain, fatigue, and the challenge of “looking fine”
  • Parenting with a long‑term condition and supporting children who develop psoriasis
  • Exercise, movement, and the realities of managing energy
  • Andy’s work with BRITPACT, the Psoriasis Association, EULAR, and the James Lind Alliance
  • Why patient involvement in research is changing the landscape
  • The importance and difficulty of self‑compassion

Keywords: psoriatic arthritis, psoriatic arthritis symptoms, psoriasis, inflammatory arthritis, autoimmune disease, chronic illness, arthritis flare, joint pain, biologic treatment, invisible illness, patient advocacy, physiotherapy, exercise and arthritis, mental health and chronic illness, psoriasis diagnosis journey, fatigue, brain fog, dermatology and rheumatology, patient research involvement, EULAR patient advocate, BRITPACT, James Lind Alliance, chronic pain management, parenting with chronic illness, skin condition stigma

Transcript

Intro: His reality, his story. Life with psoriasis and psoriatic arthritis. Inflammatory with Debbie Wilson and Katie Peiris. Navigating life with inflammatory arthritis. 

Debbie: Hello and welcome to Inflammatory with Debbie

Katy: and Katy.

Debbie: Today we’re delighted to be joined by Andy Kelly who lives with psoriatic arthritis. Psoriatic arthritis is a type of inflammatory arthritis, and it isn’t often talked about. It affects around one in a thousand people and around one in four people living with psoriasis will develop psoriatic arthritis. And psoriasis is a long-term autoimmune condition that mainly affects the skin, causing red scaly patches that can be itchy or painful. Psoriatic arthritis is therefore much more than just joint pain and it’s more than a skin condition as well. As with all types of inflammatory arthritis, it is that chronic fluctuating autoimmune disease that can impact on everyday life. 

Not only does Andy live with psoriatic arthritis, he’s also a physiotherapist and he’s a patient advocate and involved in EULAR, which is the European Alliance of Associations for Rheumatology. That just rolls off the tongue, doesn’t it? He’s also one of our trustees at Inflammatory Arthritis UK. So, Andy, you must be so, so busy, so thank you so much for joining us today. How are you? 

Andy: Very well, thank you. Very well. Yeah, busy is one way of describing it. It keeps me out of trouble.

Debbie: Oh, I like that. So, if you could just start off by just going back to the start, how long have you been living with psoriatic arthritis? 

Andy: Psoriatic arthritis was diagnosed, I want to say 2016, 2017. Following being diagnosed with psoriasis when I was about 18, when I started university and then went through a whole myriad of stuff with psoriasis. Doctors saying it’s not, it is, it’s not, it is. Various lotions, potions, treatments, so on and so forth. Eventually that was officially diagnosed and that led to more lotions and potions over various years.

Debbie: How were you at university having that diagnosis? 

Andy: It was a bit of an interesting time because I was doing a sports rehabilitation degree before I did my physio degree. So very self-conscious would be one way of describing it. I don’t know how much you know about the training, but you do a lot of peer-to-peer sort of training and getting undressed in front of people and treating people. I would argue very self-conscious in that respect of being in a room with other people and this skin condition.  But at the same time, thinking about it positively, it also helps you develop your own professionalism and others’ professionalisms as well. 

Katy: And what were the first symptoms of psoriasis? 

Andy: For me, it was scalp. Little raised spots on the scalp that then didn’t really go away and developed into itchy, scaly patches that were managed. Shampoos, so on and so forth. And then I started developing it on my elbows and then from there it spread.

Basically it’s 

the best way of describing it. At my worst, it was my calves, thighs, back, arms, scalp were covered with plaque psoriasis.

Katy: What’s plague psoriasis?

Andy: So various plaques from anywhere between almost just looking like a little red spot with a scab, like a white scab. I think the one on my thigh at one point was probably the size of a hockey ball. Came up and down from that. Yeah, through my physio degree, I just managed it. Went to work in professional rugby. Had some experiences in that of the culture, shall we say, in the background that were a little bit challenging to deal with and the way some of the players viewed it. But never really got to me that much. It was just something I had that other people had as well and it was managed through dermatology and so on and so forth. And then it got to a point, I’d view it as I’d graduated through various stages of treatment. It’s almost like, oh, what’s next? Oh, I want to aim for that one.

Debbie: One way of looking at it. 

Andy: Yeah, and lotions and potions and then dermatology went through UV treatment, which helped. And the UV treatment was to proof, so sitting in a bath of some horrible smelly chemical and stuff and then going on the sunbeds. And that was quite effective for short term for me. And you can only have so much of that because there’s all the risks associated with going with the cream and so on and so forth. And sort of exhausted that option. Dermatology then said, well, we’ll graduate you again. And I’d started developing joint symptoms  at that point. That didn’t get on with, my body didn’t like that. Various blood tests confirmed that. And then a couple of others were tried and again went through various pathways, I suppose it is. In that intervening time, it wasn’t really controlling the skin particularly well. And it’s around about that point, I went swimming with my daughter and it was almost like the straw that broke the camel’s back, pardon me. The analogy was that one of the lifeguards refused me entry to the pool because he thought I had an infectious skin disease. 

Debbie & Kay: Oh my gosh! 

Andy: Yeah, so I’m trying to think a few years ago now. But again, that led to a heated debate with the lifeguard at the time, with the center management and some very awkward questions from my daughter who had always just seen me as that. 

Katy: And how old was your daughter at the time? 

Andy: I’m trying to think back now. Nine, ten? All she wanted to do was swim at the time. And it became that sort of, well, do I just push this and go into the pool anyway and ignore or do I have to come away? And it left me in a bit of a bad place, to be brutally honest. And I went to see a dermatologist; they ran what they call a joint care clinic. And now it’s not joint as in joints, it’s interdisciplinary work.

Debbie: Wow, that is lucky. 

Andy: Yeah. And so, I was quite lucky in that respect that through that clinic, dermatology and rheumatology got together and said, yeah, it’s obviously psoriasis, but we’re now looking at a diagnosis of psoriatic arthritis as well. On top of that, as you said at the top of the episode, was a third of people who go on to sort of develop that as well. 

Debbie: What were your symptoms of psoriatic arthritis? 

Andy: At the time, and I’d never really put two and two together, even as a physio, you know, it was more systemic. I was waking up in the morning, very stiff hands that took five to ten minutes to get going, feet and then various other tendon problems flaring up and down. And I’d always treat them as individual cases and manage them in that respect, but never really put two and two together myself. I had a surgeon in the background, but never had gone as far as going, oh, it must be this and I need to talk to the doctor about this. It was putting my faith in what was going on there. They’re the experts in there. Yes, I do musculoskeletal physiotherapy and I’m trained to recognize the warning symptoms, but given where I was at the time as well, the other thing that they offered was sort of psychological interventions to help with that diagnosis.  So I saw a psychologist as well, which I found so beneficial.

Katy: That’s amazing because I’ve never actually heard anyone say that they’ve been referred to psychology. So that’s brilliant. 

Andy: And it was a bit of a game changer in terms of accepting what it was, accepting the diagnosis. Again, even with a little bit of knowledge, I always think I would blinkers not wanting to know. Yeah, and that really helped. And that was around about the time I started my one and only biologic I’ve been in. Again, really, really fortunate with that particular medication that I’m on and having graduated to other ones, even though I saw my rheumatologist just last Friday and they were quite happy. And the appointment before they were talking about adding in another medication on top of the biologic and they made the decision that that doesn’t need to happen. Quite happy in that respect. And that, I suppose, in a roundabout sort of long-winded short way. 

Katy: Long-winded short way, I like that one. 

Andy: It’s been a bit of a journey.

Katy: So, when you were diagnosed with psoriasis, what was that time to diagnosis? And then when you were diagnosed with psoriatic arthritis, what was the time to diagnosis at that point? 

Andy: Thinking back, it was actually easier to get the diagnosis of psoriatic arthritis when that came around than it was to get even diagnosed with psoriasis first time around. I was going through various university GPs and being told it was skin infections or fungal or it’s this or it’s that and try this shampoo, try this cream, steroid cream. Some made it worse, as they would, because it wasn’t what it was designed to treat and some made it better but never really had any lasting effects. I’d say it took a good 18 months to sort of get to that psoriasis. It actually required me coming home from university to see my old family doctor, to go and he just took one more pill and now I have psoriasis. And it was at that point that you find out my grandfather had had it as well and you’re just like, oh thanks, now I know.

Katy: I had a very similar experience that my grandmother had rheumatoid arthritis but nobody told me.

Andy: Yeah, thanks, genetics, it’s a wonderful thing.  And then the psoriatic arthritis I would say was quicker because of all the things that were going on at the time. As I say, the event that happened with my daughter, the sort of state of mind that what was available to me in my local area as well, I’m pretty sure that that psychological support isn’t universal.

Debbie: No, definitely isn’t.

Andy: It’s something that having worked with that  person and then being to a conference with Britpact, who I’ve also done quite a bit of stuff with.

Debbie: So what is Britpact?

Andy: British Psoriasis Consortium. So, I’m a patient research partner for that. It’s a very medical side of things, this research into it. And I sort of came about that and I’m sure we’ll come on to that because around about that time, well not long after starting the biologic, I went off sick from work as the symptoms built up. And even though I was still on the biologic, I think I was still getting used to it and had that time off work. I got a bit bored while I was off and just happened to see an advert for the James Lind Alliance. And they were doing a priority setting partnership and they were looking for people with lived experience of psoriasis, psoriatic arthritis, their journey to come together with medics and rheumatologists and other patients and allied health professionals, nurses, so on and so forth to come up with the top 10 research priorities for psoriatic arthritis moving forward. So, I just applied basically in a circle. A bit unique as in physio, lived experience of it, would like to be involved. I think there’s room for this unique experience and I was lucky enough to be accepted and it’s kind of snowballed since then. And then from Britpact, then EULAR has come along since then in terms of the patient side of things. 

Debbie: Do you find that psoriatic arthritis is really not very much known about? People don’t really talk about it because I think people probably might have heard, obviously they’ve heard of osteoarthritis and possibly heard more of say rheumatoid arthritis because it affects more people. But psoriatic arthritis, not many people really know about it.

Andy: I would say and again, it’s a bit of a difficult one because as a sitting where I sit now, I’ve obviously got quite a lot of awareness of it. I’ve definitely seen a change and I’ve seen an exponential growth in sort of the evidence and the research behind it from when I first started. I’m not really sure of what was there beforehand but because I’m probably immersed myself in it, I am aware of it more. I would say it’s probably not as well known if you didn’t have things like psoriasis. 

Katy: And do you think when someone’s diagnosed with psoriasis, are they aware of the fact that one in three, one in four will go on to receive a diagnosis of psoriatic arthritis? Is that something that’s talked about at all?

Andy: It certainly wasn’t talked about with me until it sort of became oh, okay, we think you’re showing the signs and symptoms of the joint sparsity type fingers, the dactylitis as they call it, the inflammation around your distal joints. It certainly wasn’t covered with me when I first got the diagnosis. 

Katy: You kind of think it is quite a high chance, isn’t it? By the sounds of the statistics.  You’d sort of think people would be maybe made aware so that then it can be picked up early and you can be put onto the right medications.

Andy: Yeah, I think that’s where a lot of the research is going now. So, what came out of that priority setting partnership was a need to understand who goes on to develop and what risk factors contribute, whether it be diet, lifestyle, genetics, severity of disease, the skin symptoms, whether there’s other factors. There’s a lot of research going down that route now.

What I have seen and because I’m, just to go along the theme of being busy, I also help the psoriasis association with their research grants, BRITPAC with their research grant applications and things like that. So, when people submit for funding, I tend to look at it from the patient’s perspective. Do you understand? What’s the value of it? And what I’ve seen more recently, and it’s a really good thing, is how patients have been engaged in setting that research and how they’ve been involved. So NIHR guidelines and stuff like that about where patients have been involved in the journey of developing this research. I see a lot of research applications now that actually make reference to the James Lind alliance and those top 10 and which top 10 it fits into, being a physio as well, one of the ones that made the top 10 was non-medical management of the condition as well. And there’s this work progress to explore that, a lot more exercise and stress management and things like that. Stuff that requires behavioral change and therefore isn’t necessarily the silver bullet maybe that people are looking for.

Debbie: Yes. And I also think it’s so, that is also so individualized as well, because we know that we need to do movement and everything, but then it’s when you get everything else, like the fatigue and the brain fog, and you may be starting to flare and actually do you then want to go and do exercise? We know it’s good for us, but it’s so hard to balance it all.

Andy: Actually, if you’re experiencing symptoms, because there’s always that gamble that yes, it will help, but at the same time, it actually could knock you through. Yeah. And you’ve only got a finite amount of energy and it’s where’s that energy best going to be utilized. Now I’m sat here now talking to you as a prime example of do as I say, not what I do. Yeah. Yes.

Katy: Because you’ve just come out of a flare, (15:07) haven’t you?

Andy: I have. I have. Yeah. Last month has been particularly fun, yet all my markers, and that’s another challenge with psoriatic arthritis is sometimes the inflammatory markers and the blood markers and stuff that are used to say, oh yeah, yeah, it’s a flare, you’re in, you’ve got active inflammation going on, aren’t necessarily there. You’re like, you’re sat there going, you’re telling me, yeah, great, your markers are fine, so we’re not going to do anything else. And it’s like, well, I’m in agony. I mean, I’m getting more than hours worth of, to get me going in the morning, to get up and get my feet working, get my hands working. As an aside to anybody with a computer, can you dictate function? It’s a bit of a game changer. If you’ve got problems with your hands and typing and stuff like that, learning how to dictate stuff is game changing. Yeah. Anyway, sorry, tangent.

Debbie: That’s a really useful tip because I think Katy’s mentioned before when she’s, I think that’s when you know you’re coming up for a flare, Katy, as well. When you’re typing, it gets hard.

Katy: It gets really hard. Yeah.

Andy: So many mistakes. We spend more time correcting the mistakes than we do. So, things like that help me massively. And I’ve been really lucky coming down another tangent here of support physically in the background that work have offered and that I’ve researched and been able to get access to. Sometimes though, it’s more that other side of support that we, the movement, the exercise, the psychological support. It takes longer and therefore I don’t think is as attractive because it requires, and as I say, as I sit here, as I do, as I say, not what I do. You get to a point as well where these types of things and this inflammatory arthritis can be so wearing, so nagging at you, so that you kind of want the quick fix. You just kind of want the world to stop a little bit and just come back from it and just feel normal just for a short period of time. And then you start to rebalance things. But the things like exercise take longer and you don’t necessarily see the benefits right away. It’s only when you sit there two or three months down the line where you’ve been doing regular exercise and where you go, actually, you know what, I haven’t had back pain for a couple of weeks, and it’s actually been a lot better. But it takes that time and I think that reflection, actually, this might be working.

Katy: Your background in physio and sports rehabilitation, does it make a difference depending on where somebody’s starting point is before they’ve been diagnosed? So, some people will have been regular exercisers before they’re diagnosed. Some people will have been doing nothing pre-diagnosis and some people will be somewhere in the middle. What’s that kind of pre-exposure to exercise? I don’t know if this is something you can answer now, but how does that affect the impact exercise can have on someone with these sorts of diseases?

Andy: It’s a really interesting one because obviously part of the disease process is comorbidities and inactivity. Other lifestyle factors are a massive component of this. Now, even though I’ve joked about it, but exercise is a really cost-effective, easy intervention to get going. And I don’t think the questions being answered are as do we know yet what benefit would exercise actually create in the prevention of inflammatory arthritis or managing symptoms further down the line. I often refer to these things with patients as sort of, it’s a bit like an iceberg and two-thirds of it’s underneath the surface and it’s not until it breaks the surface, then we are aware of the problems. Now, if we were to be putting exercise in place while things are still under the surface, would we actually prevent it breaking the surface soon? I don’t know.

Katy: I guess we don’t know it’s under the surface either because we only know once it’s broken through.

Andy: But it’s certainly in terms of, and again just to add another thing to the mix, is my own professional studies at the moment. I’m doing a professional doctorate. I’m looking at the use of exercise as an intervention is, we know from organizations like the World Health Organization, K-Active, things like that, the majority of adults, regardless of diagnosis of inflammatory arthritis or other conditions, other comorbidities, do not meet the recommended pace of 150 minutes a week and two-strength sessions by WHO, American College of Sports Medicine.

All those guidelines aren’t met by the population in general and that’s worldwide. There’s a lot of research out there to say that we’re not meeting this and that GPs…

Katy: Why is it? Do you know why it’s 150 minutes and why it’s two-strength sessions?

Andy: I haven’t quite gone down that rabbit hole of where those guidelines came from. I’m aware of them. I’ve always wondered why. There was a bit of a movement about 10,000 steps a day which has been brought down. 

Katy: They don’t get much benefit over 8,000, don’t they now? 

Andy: Yeah. There’s a paper recently came out, and again I’m going to get boring here and talk about research, that says that a lot of deaths are comorbid, preventable, non-communicable diseases are preventable through the use of exercise if we were to make this. Even something simple, as three to four minutes a day, can have a positive impact. When we talk about exercise, I think everybody imagines going to the gym, lifting weights, running a marathon.

Debbie: We’ve mentioned that exactly before.

Katy: Yeah, and it’s more about just general movement and not sitting all day. 

Andy: Yeah, just moving in some capacity will do you good and have… It’s money in the bank.

It’s saving up in the background and earning its interest. We don’t necessarily see it at the time. One of the things I certainly struggle with is that consistency. I always struggle with that regardless of then having an inflammatory condition.

Katy: Life gets in the way, doesn’t it? It’s Easter holidays at the moment, and I really find it hard to find the nuggets of time to exercise through the Easter holidays because you’re dropping off at camps, you’re trying to work, you’re trying to do other things. It’s that constant, what ends up at the bottom of the pile. It quite often might be your own personal health because whether that’s exercising, whether it’s meditating, whatever it is that keeps you well ends up at the bottom of the pile at certain times depending on what’s going on. 

Andy: It’s certainly a trap I’ve felt and fallen into massively myself is actually putting myself last in the list of things and that includes my own work. I’ll do work, I’ll work with my students and all that kind of stuff, and I’ll put that ahead of even my professional studies and then my own health and well-being. It’s easier to sit at my desk.

Katy: Because you’re not just a physio, I think we need to make that really clear. You’re also teaching future physios. Is that (21:34) the right terminology?

Andy: I work for a university and the course isn’t physiotherapy, it’s a master’s in sports rehabilitation and then the undergraduate is sports conditioning, rehabilitation and massage. It’s a bit of a hybrid of strength and conditioning, exercise thing. I’ve always been from a very sporting background and then where I find myself now is moving more towards patient advocacy, public health. Coming back to almost that wider bit from when I used to work in the NHS, it was a bit of everything. Then I went down the sport route and a very high level sport. I’ve  had a very varied wide-ranging career.

Katy: It’s really interesting how it all loops together and links together.

Andy: What I’m trying to do now is align a lot of these interests. One, keep me out of trouble. Two, energy is flowing in one particular direction. Because I guess otherwise you can get dragged off in all different directions. I’ve been quite renowned for being dragged off in tangents and stuff like that. Then I’m very much something new and shiny. I want to be going in that direction. I get very bored very easily. In the effort of full disclosure, knowing now what I found out about this time last year, about myself, suddenly made things make a lot of sense in terms of just a layer, another complexity on top of it and an actual neurodiverse diagnosis as well. That has certainly led to a certain bit of reflection as well of a bit of, well, is some of my problems in the past? Has that been related to who I am and how I deal with things in a system that I’m now realizing is different? I work differently. I’ve always got there, but I’ve always got there in a very convoluted sort of way. I need that little bit of urgency, shiny, novelty to get me across, get me in line. That’s led to this conversation with other patient representatives who I know. It actually led to us having a very informal anecdotal conversation about how much did I tend to internalize stress through just wanting to mask or fit in or do things what other people perceive to be the way things should be done? I’ve found certainly fatigue and stress are a couple of my triggers apart from the most recent flare that came out of left field. I wish there was a warning label of when they’re coming.

Katy: Can you tell when you’re about to flare?

Andy: Sometimes yes, sometimes no. Sometimes I just wake up and say, oh, this is going to be a fun day.

Debbie: I’m the same.

Andy: 24 hours later, you’re like, oh, that was a fun day, but I feel all right again now. Then other days it’s like, oh no, this one’s going to rumble on for a little bit.

Katy: How long do your flares tend to last?

Andy: I’m quite lucky and tend to be a few days. This last one was a bit of an anomaly. I’ve got quite adept at managing medications and painkillers when needed, so I can work. This last time it took me out of work. It was that one bit got bad, then another bit got bad, and it was just compounded. It’s like, you know what, no, I think the best thing here is to actually just step back. In agreement with my doctor, that’s what we did. We stepped back and took away potentially one of the things that was compounding it and aggravating it. That’s helped to a point where I’m now back in work, albeit phased return, but I am working back up again while waiting for a couple of interventions in the background.

Debbie: Just trying to close off now, but thinking back to even your diagnosis of psoriasis and then your diagnosis of psoriatic arthritis, is there any advice that you would give yourself to help you get through the journey of learning how to live with these conditions?

Andy: The biggest one I’ve probably come to realise is a bit of self-compassion, which is really hard. It is so hard. Really hard to say and actually go, you know what, today is a bad day and I’m going to look after myself first. Work with it, otherwise it will bite you harder, if that makes sense. If you don’t, I think you can soldier on to an extent, but then it will definitely make you take the time to recover down the line. So being self-compassionate and respectful of how you’re feeling. It’s really difficult because it’s, I don’t want to talk for you, but it’s really difficult to explain when you’re having a bad day. It’s come out of nowhere and you tend to default, I’m okay. 

Debbie: Yeah, I’m fine, is generally the thing.

Andy: Yes, and we’re really not at all. And I don’t blow up in anger of pain. 

Debbie: But you have children as well, so how do you find parenting, especially when you went through your recent flare? Do you explain to them what’s going on? 

Andy: Yes, because I think it’s important for them to understand. My daughter’s developed psoriasis as well. So, it’s about trying to, again, advocate for her as well when we go to the doctor. My son’s developed a little bit on his eyelids, and he’s asked me in the past, what’s wrong with your skin and stuff. And it’s just being open and honest. It’s nothing to hide. 

Katy: Yeah, because this is where psoriasis is different to sort of other, and psoriatic arthritis, because there is something that’s more visual for people to see sometimes, not all the time.

Andy: Yeah, and I’ve experienced both sides of that. When I was with the psoriasis, skin lesions, it was something visible there. So, people understood there was something going on, and he would treat me. With the biologics and all, my skin’s actually clear. I’ve not got a couple of little patches here and there that crop up and flare up and go away so much better. Now it is a bit like, well, you don’t look ill.

Katy: Yeah, yeah. So, you’ve seen both sides in some ways. 

Andy: Yeah, but even with colleagues and friends and stuff, it’s like, today is a bad day. I’m having a bad day. I’m not coming, I’m not meeting up with you and stuff like that. I just need to withdraw a little bit. But then, as you say, next day, they see you in work the next day and you might be bouncing around like Tigger.

Debbie: What’s come out a lot in all our podcasts is that actually people will just assume, you know, they look at you and go, oh, you’re fine. There’s actually really talk for hours and hours on this. So, we probably have to get you back on, Andy, to really kind of talk more about the research side and how patients can get involved. So thank you so much for your time, Andy. It has been absolutely fascinating.

Debbie: Please do rate and follow the podcast from wherever you get the podcast from. We are on social media. We are on Blue Sky, Instagram, LinkedIn and Facebook. Please do continue the conversation as well. And you can also sign up to our newsletter. We are at inflammatoryarthritis.org. And until next week, Katy, it’s goodbye.

Katy: Goodbye. 

Andy: Thank you. 

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

Show notes

In this powerful and deeply human conversation, Debbie and Katy sit down with Andy Kelly – physiotherapist, patient advocate, EULAR representative, and trustee of Inflammatory Arthritis UK to explore what it really means to live with psoriasis and psoriatic arthritis.

Andy shares his journey from first symptoms at university, through years of misdiagnosis, to navigating the emotional and physical realities of a fluctuating autoimmune disease. He opens up about stigma, parenting with a long‑term condition, the impact of flares, and the transformative role of psychological support after an incident at a local swimming pool left him in a bad place. He also reflects on his work in research, patient advocacy, and the growing movement to involve lived experience in shaping future priorities.

This episode is full of honesty, humour, and practical wisdom, from navigating treatment pathways to understanding fatigue, exercise, and self‑compassion.

Key Topics Covered

  • Andy’s early symptoms and long road to a psoriasis diagnosis
  • How psoriatic arthritis developed and why he didn’t recognise the signs
  • The emotional impact of visible skin disease, including a painful experience at a swimming pool
  • The role of dermatology–rheumatology joint clinics
  • How psychological support helped him accept his diagnosis
  • Starting biologics and navigating treatment options
  • Living with flares: unpredictability, pain, fatigue, and the challenge of “looking fine”
  • Parenting with a long‑term condition and supporting children who develop psoriasis
  • Exercise, movement, and the realities of managing energy
  • Andy’s work with BRITPACT, the Psoriasis Association, EULAR, and the James Lind Alliance
  • Why patient involvement in research is changing the landscape
  • The importance and difficulty of self‑compassion

Standout Moments

  • “It left me in a bit of a bad place… one of the lifeguards refused me entry because he thought I had an infectious skin disease.”
  • “Psychological support was a game changer — accepting what it was, accepting the diagnosis.”
  • “You don’t look ill… but I’m in agony.”
  • “Self‑compassion is the hardest thing. If you don’t slow down, it will make you.”

Resources & Links

  • James Lind Alliance
  • Inflammatory Arthritis UK: inflammatoryarthritis.org
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This episode was funded by UCB, who had no involvement in the development of the content or associated materials.

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

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

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