Episode 48 Why Do We Hide IA Pain?

Debbie: Hello and welcome to Inflammatory with Debbie.

Katy: and Katy

Debbie: This is the podcast where we talk about life with inflammatory arthritis, the visible parts, the invisible parts, and everything in between. But Katy how are you? It’s been a while.

Katy: It has been a while, hasn’t it? I’m really good. Yeah. Tired. Had a work event last night, which went on quite late. But I’m just very pleased it’s over. How about yourself?

Debbie: Yeah, do you know what? I’m not too bad actually this week. Last week was a very different story, even though it was half term I was doing so much, I think on the charity side and my daughter, she’s vice chair of the Young Carers in Hertfordshire. So, they had their conference last week, so I was taking her to that, and I just forgot that actually driving really tires me out and my back’s been flaring. Think I’ve woken up every single day with a different joint hurting. It’s been my elbows and even this week, my shoulder has been really, and I’ve never had pain in my shoulder. So, I’m hoping it’s not active, but I’ve got a rheumatology appointment coming up in a couple of weeks. I think what Hansa was saying about hiding the pain that’s

Katy: if you’re not, okay. Yes, that’s what you’ve been doing.

Debbie: That’s been me for the last couple of, I think even since I’ve moved to be fair, and it’s just been a lot going on.

Katy: It’s the stress buildup, isn’t it? And then I guess you, well, you can’t chill out because you’ve got too much to do when you’ve moved into a house. So, it’s quite tricky.

Debbie: Yes, I must admit I do just need some time, just to probably just to chill and just to process everything because I was in my old house for like 15 years. It’s where my daughters grew up. And yeah, it’s just having that time. But then there’s so much to do here. Just like the general cleaning. I want it to be my standard clean, like Monica clean if you ever watch Friends. And I like doing that. But it’s just having the time and the energy.

Katy: Yeah.

Debbie: to do that and I must admit at night I just hit the pillow and I’m just asleep but then I’ll keep waking up during the night because I’m in pain so it’s that vicious circle and obviously having to go to meetings and everything and very similar to what I think we all do we mask the pain we mask how we feel and every time we say we’re fine actually we’re not

Katy: Yeah, and it’s a complete lie. But why do we do it?

Debbie: it is. I don’t know, I’ve been thinking about this, why do we do it? Because, when we’re talking with Hansa there was actually, we shouldn’t be ashamed. This is us. And this is what we what we live with. But

Katy: Yeah. No, and actually, because I went to a work event last night, I was chatting to some colleagues before going who work in different offices and they were like, oh, what are you wearing? Are you wearing heels? And I went, no, I can’t wear heels.

Debbie: No, did they ask why or just….

Katy: Well, no, they know why. And I was like, don’t ask me that. You know the answer.

Debbie: okay, fair enough. Yes. but it is a hard thing because I went to an event this week. It was our first actual proper, had a stall and everything. It was great.

Katy: Yeah. It looked very professional. It looked lovely. I don’t know if people saw it on our Instagram stories and on your stories, but we should do a post actually on it. We may have done that by the time this comes out.

Debbie: thank you. Yes, I think we may well have done, it will be on our website as well. It’s to do with Watford and Three Rivers Community and Volunteering Trust, which we thankfully have had a grant come through from them because they are my local council. And it was really talking about discovery and community and that connection. And they had someone there, talking about the social prescribing and actually how majority of people’s wellbeing happens outside of that clinic door. And it is that community and whether you want to actively talk to someone, you have that opportunity. then sometimes I think, bit like us and what Hansa was saying when she was like, she didn’t want to talk to anyone, because it is hard to explain, which is what you’re getting to as well. That is that autoimmune side of it that is invisible. But we generally look okay, but actually we’re going through so much. And it’s then hearing from people that get it and that community that really hit home last week and made us realise that what we’re doing as a charity is a really good thing because people do get to hear from people that get it and understand it.

Katy: And also sort of Hansa mentioned the fact that she’s quite, not lonely is the wrong word, but she’s not got many family and friends around her because she’d moved. So, I guess the other thing is that the podcast is hopefully giving people that community without it needing to be a physical community. It’s, people that are talking about what they’re going through on a day-to-day basis that resonates and then makes you realise you’re not completely alone in it.

Debbie: Yeah, because I think when you generally say community, you do think of in person and everything in a room. Actually, it’s not it’s just finding people like you that is your community. And as you say, this is what we’re doing on the podcast is giving people that because generally it hasn’t been there before. And I would have loved something like this when I was growing up, because I did actually message Kathleen Turner last night, because she’s actually being honoured. It’s a women in mission luncheon thing for Arthritis Foundation in America. And I actually messaged her to say, look, you are my hero. And I’ve mentioned this before.

Katy: Yep

Debbie: Because I didn’t know anyone and I’d never heard of anyone. It wasn’t until I was a bit older when I found out that why she gave up her career for a little, had a career break was because she had rheumatoid arthritis. Yes, I don’t have that disease, but I have inflammatory arthritis like she does. And it was the first time I actually felt a connection to someone who I have never met. I’ve seen on film, but it felt like that was my community. That’s what, as you say, that’s what we’re doing. But obviously we’ve reflected on Hansa’s episode, but Katy how was it having your friend Kat on the episode?

Katy: Yeah. It was really funny because I’ve never really had a conversation with any of my friends about what they thought I was going through at the time. It was interesting that basically, I guess I knew I hadn’t really told people that much, but actually hearing that that was the case and that people didn’t really understand because I hadn’t really explained it. I learned a lot about what I’d maybe not talked about.

Debbie: And I think what also came across was, think, and again with Hans’s one as well, is that we forget things on purpose. We don’t want to remember these things. Because I remember when Kat was saying about going down to this cave and you’re like, why? I could just see in your face, it’s like, did we actually do that? But yes, you did. But because I think you were struggling, you don’t want to remember those bad times. And when she was saying that she had to do your buttons up as well, you’re like, oh, yeah, I forgot you had to do that.

Katy: Yes. Yeah. I had no idea.

Debbie: It’s really bizarre that what the things that we forget because we don’t want to remember that’s the thing

Katy: Yeah. And the brain’s an interesting beast because it works so differently for everybody. And it’s amazing that everybody has a slightly different perspective on all situations. So, hearing that friend’s perspective, obviously strange for me because it’s my friend, but it gives a completely different viewpoint of what it’s like.

Debbie: It does. And I think it’s really, again, it’s just really interesting hearing from her side of it. again, just seeing your face was quite amusing. But also how do we get that information over to friends? Because when we’re diagnosed, even it is. And then, yes.

Katy: Yeah. It’s so overwhelming because you’re dealing with it yourself. You don’t also then want to deal with somebody else’s thoughts and feelings because you want to understand it better yourself before you can talk to other people about it.

Debbie: Yeah, and it is really hard because when you say the word, inflammatory arthritis, they just oh, yeah, everyone gets that. But it’s not and it’s trying to kind of cope with what’s happening to your body? Then having all these medications fully understanding why you’re having to take them but you just want to be out of pain so you will do anything but then when you get the medication some say like toxic and it’s like oh my gosh that can be quite scary and I think the amount of leaflets and everything they give you that doesn’t really help I don’t think because you need to be in the right headspace to read them and to really digest what is going on

Katy: Yes. Cause I remember being given from my diagnosis appointment, being sent home with these leaflets and then going back in two weeks to talk about my treatment plan. But you don’t really understand what the hell’s going on.

Debbie: Right. No, you don’t. And it is so much to try and process as well. And then let alone trying to get that support that you need. But how do you tell your closest friends,

Katy: Yeah.

Debbie: Kat had seen you struggling. And I think that’s also what we sometimes really don’t, we hide from our friends because we’re not in that social environment. We’re going through so much pain really swollen joints. We can’t do very much. So why would you let anyone come and see you? So then they only do see you from when you’re doing as we would say, fine, which I mean not, but that’s what we say fine. And so it must be really hard for them that they want to understand that they want to support you.

Katy: And well, yeah, yeah, yeah.

Debbie: But because they never seen you really, really struggling, they don’t know how and it’s trying to get that across.

Katy: And they don’t know actually how bad it can be because you won’t put yourself in a situation for them to see it.

Debbie: No, not at all, which is why when I was younger, I didn’t even want to, my husband wouldn’t mind me saying this, I never really wanted to ever get married because I didn’t want anyone to see me when I got that bad. Because for me, was just like, I was told always to deal with it, get on with it. And so I did. And I didn’t think it was for anyone else to see me like that. But then I think life has changed. We are talking a lot more obviously with this and other diseases and the impact on our mental health as well. But that’s only been in the last, what, 10, 20 years in the last two decades. And it is really tough because obviously when Hanzo was diagnosed, but also like you, very young and you feel like, everyone says this is an old person’s disease. So maybe it is, maybe that’s why I don’t talk about it as well.

Katy: Yeah, well, and it was, I just remember feeling quite embarrassed and it’s nothing to be embarrassed about, but it’s not the everyday thing that someone of that age would be telling people.

Debbie: No, it’s not at all.

Katy: And depending on your personality, we all generally want to try and fit in to anything that makes you a bit different, makes you feel uncomfortable.

Debbie: We do. Yes, well think we grow up with that, don’t we? Because in school you don’t want to be the different one because you know, I got bullied. Because I was different and there were times when I was really, really struggling to walk and then to write with different pen and different hands. And so, yeah, even now, but that’s what gives us our edge. That’s what makes us, us though.

Katy: Yeah. Yeah.

Debbie: We are different and it’s fine to be. We need to get rid of that embarrassment and that shame because even James felt that as well. And it wasn’t until then when he was in COVID, think actually COVID as horrid as it was and obviously being locked down, that’s when people really did meet their communities. But again, it was online communities. It doesn’t have to be the physical in-person thing.

Katy: Yeah, it was online. And yeah, and because, I mean, I guess COVID sort of opened all of our eyes that things don’t have to be in person anymore. you can build, because it was finding people that were shielding and that understood, because that was very confusing. It was a word I’d never really heard of.

Debbie: I’ve never heard of it as well. And Kat said that as well. It wasn’t until then you were going through and you were shielding. like, why are you shielding? It’s just the joints. And it’s just like, well actually, no, it’s not. It is autoimmune and we’re taking immune suppressants.

Katy: Yeah. Yeah. So was quite useful because it gave a reason to actually tell people more information.

Debbie: Yes, But, this why we’re doing this is to find that, online community, that digital presence that you know, even if you just hear from people that we fully get everything and how tough it is, because as Hansa said, life can be tough. And again, what Hafi said, but you make the most of the best times that you have.

Katy: Yeah. Yeah, yeah.

Debbie: of those good days. So yeah, I think it was really interesting reflecting back on the last two episodes that we’ve had with a guest or two guests and one being your friend, was very interesting.

Katy: Yeah, very strange, very strange.

Debbie: But actually, whilst we’re talking about an episode, we’re going to have an episode coming up, but talking from a family perspective. So, where we had Kat on, we thought we could have a family member on, but we want to hear from more people about what was the impact on your family? If you are a family member and you’ve got, one of your loved ones is going through inflammatory arthritis. What questions have you got? How, but also how has it impacted you? Has it impacted your mental health and your general family life? Because it can change and it does change. You’ve now got to think about, can we do this this day? gosh. If my partner’s flaring that day, maybe we might have to cancel plans. How do you feel about that?

Katy: Yeah.

Debbie: And is there anything, from our charity side that we can do to help support you? So please do send in all your questions and any opinions, any views that you have. We are info at inflammatoryarthritis.org. So please do email and also it will be on our social medias as well. DM and comment to us I think that’d be a really good episode though, Katy.

Katy: No, I think it’d be really interesting to hear what, and maybe we should ask our family members to send in. it’ll all be anonymous, won’t it? So there’ll be no names shared and that It’d be great, I think, to hear from our family members of what they thought at the time of diagnosis and then comparing it to what other people say.

Debbie: Because actually it was really interesting. know when we talked about, I think it was last year when we did that word episode when you were asking me questions because word day is coming up.

Katy: Yep. Yes.

Debbie: Word day is raising awareness that young people do get rheumatic diseases. And Katy, you did interview me and actually about being a parent. And when I actually then spoke to my husband, he was actually more worried about me than our daughter. He was worried about how the stress and everything, how that would impact on my inflammatory arthritis, knowing that I was able to look after her. I knew everything that she was going through.

Katy: Yeah. because at least you understood it, yeah.

Debbie: In a way that was more of a relief, I think for him that I was there. I was there, I was going through it still, but it was just that extra stress and extra pressure on me. How was I going to cope with that? And that was his main worry. And that, was just insightful. I didn’t know that he felt like that at all.

Katy: Yeah. That’s the thing. Sometimes people don’t share what they’re thinking unless you ask them. But I would never have asked like, how are you feeling about this? Because in a weird way at the time, it’s all about you in a lot of ways. You’re not really thinking about family members, partners. You just need to try and get through it yourself and you’re hoping they will support you in the best way they can. But I think sometimes they don’t know what to do.

Debbie: They don’t. They really don’t.

Katy: or how to support you. that’s, and again, that’s going to be personal So there’s no one size fits all for anything. So, it is trying to have those open conversations, which I find a struggle.

Debbie: It is because sometimes I don’t want to know the answers to be honest either. Well, you can and it’s just, yeah, there’s just so much that goes on and I think

Katy: Yeah, you can be a bit scared of the answers, can’t you?

Debbie: Again, what’s come up at a running theme is also being believed. think sometimes when you do get that diagnosis, it is just that huge relief that someone believes you and there is something going on in your body that there may not be a cure, but it can be treated. And just having that weight off your shoulders can just be  A, a huge relief, but then also you have, okay, now I’m on this medication, now I’ve got the treatment, now, okay, what do I do? But it takes time to process all of those things, and that’s what you need to give yourself. But then also how you then allow people in to do that with you, you can’t think like that.

Katy: Yeah, because it’s having a sound, it’s like having a sounding board, isn’t it? Maybe, but then sometimes you don’t want other people’s opinions because you want to make those decisions yourself because it’s your body. It’s, I think it’s a really tricky balance to know. Only you will know what’s right for you, but I don’t know what’s right for me yet.

Debbie: But then also when you were diagnosed, you had just got with your partner who’s now your husband and having that conversation here straight away, well, what are you doing about children because it will impact on your medication. Even we haven’t had that conversation yet, but then you’re just dumped in this and that you’ve now got to go.

Katy: Yeah. I don’t know. Yeah. Yeah.

Debbie: do your children was go. So, it’d be great to hear what he thought as well. That would be really interesting. So yeah, so please send in your comments and your views as well. That’d be fascinating to hear. But also with this week, we’ve had our first event, Katy, I think I’ve mentioned it earlier.

Katy: Yeah.

Debbie: And it was absolutely fascinating, but so many people that came up to me and then I’ll say, you’re inflammatory arthritis UK. I was like, yeah, we’re a small charity, we’ve running a year now. There’s so many people, knew people that actually had either rheumatoid arthritis. There was this one young woman, her friend’s daughter has just been diagnosed with juvenile idiopathic arthritis. And she was like, this, haven’t had any kind of information. was like, listen to the podcast and it will give you so much more in depth knowledge that you’ll ever read about what we go through and get.

Katy:  Yeah. Well, there isn’t really any, I haven’t seen it, any leaflet that gives a view of what your life might look like or how you live day to day. Everything’s so medical focused.

Debbie: It is so so medical focus which you know it has its place completely but you just need

Katy: which you need as well. But it’s just that mix and it’s that understanding of what your day-to-day might look like and what you might be able to do in five, 10 years time. Obviously nobody knows, but what is the potential possible, what do you really need to think about?

Debbie: Yeah. I was talking about getting rid of that trial and error of medication. If we then could go right, we know that this medication works for you straight away. You can still live your life.

Katy: Yeah. That would be amazing. That would be the dream. That is the dream. That really is the dream.

Debbie: It would, it really would, because I don’t think there’ll ever be a cure because our immune system is so, so complex. And even if I think I was talking to a consultant one time and they said, even if we did fix it, it could cause other issues, which because your body isn’t right. it generally, this is what I’m trying to explain to me probably explaining it very very badly but because there’s something going wrong in your body but then if we fix that part of your immune system it still might do something else and then we don’t want we then they don’t know what that would be

Katy: there might be a secondary, okay. wow, yeah.

Debbie: We would love a cure. I don’t get me wrong. We really, really would, but we just have to be realistic. And I don’t think in our lifetime there will be, but it’s what do we have now? What can we do now to help people? So it isn’t that barrier to living their life. People still have dreams and you know, life’s tough enough at the moment with costs of living and you know, employment and we don’t want to get political.

Katy: Yeah. No. I know because it’s like people, people who lose their jobs through redundancy at the moment is taking such a long time to find something. again, if you’re living with inflammatory arthritis that then adds extra stress on. And I know we did an episode on redundancy to routine last year. So, worth a listen of, how we’ve both navigated those situations.

Debbie: But it is tough. It really is. Yeah, it’s just the extra stress and we know that stress isn’t good for us and how do we cope with all of that as well. So yes, but the event was fascinating, made some really, really good contacts as well. was just actually nice.

Katy: No, and it’s great just to get the charity out there and make sure people are aware of us.

Debbie: Yeah, completely. And also on our website will be the PDF so you can download the flyers that we have because now we actually have promotional material, which is great. So please do download. If you want a actual paper copy, do email us and I can send them out to you. That’s no problem. Whether you want them in your library, your GP surgery, in a community hub, please do because this podcast is for everyone. And the charity is as well. It’s just trying to make sure that people understand what we go through day to day. But I even actually had a message from my Pilates teacher last night even though I haven’t been to Pilates for a while just because I was moving. And she said she’s had quite a lot of young people come up to her and say, obviously when you first start the class, she wants to know what, you’ve got any injuries or anything. And so many people have said they actually have rheumatoid arthritis. but she goes, don’t worry. Here’s a podcast. Listen to this. And she actually gets up on her phone to say, it’s inflammatory. It’s this one. Listen to it. So yes, if you are Amy, my Pilates teachers, students welcome. And I really hope this really helps you to understand what know what we go through and that but then I was thinking I could do a Pilates event that might be good.

Katy: That would be very good. Yeah.

Debbie: Yeah, you’d have to come along, Katy. Cool.

Katy: I would. I haven’t done pilates for years, but I’d be up for it.

Debbie: Cool. Because also, again, what also we want to do as a charity is for people like in working in gyms and like PTs and to understand what the educational side but because when you obviously go to somewhere like that and especially with Pilates because obviously you are you are in your joints and that when something’s hurting that she tries to adapt it for you or just do what you can.

Katy: Yeah, yes, we want, yes.

Debbie: But it is straight away, who’s got any injuries or anything that I need to know about. It’s starting that conversation and then actually she was, ⁓ yeah, you’ve got, you’ve got inflammatory arthritis, right? She understands it a lot more as well now. And then it’s great that she’s signposting. So it is having, it’s just starting that conversation off as well. And when you go to someone like that, you generally have to, because you don’t want to injure yourself.

Katy: Yeah. You don’t want to make anything worse or if you’re in pain or flaring, it’s better just to do something different or rest or, and it’s making sure any PTs, coaches, that kind of thing are aware of what’s happening with your body.

Debbie: Yeah, completely. So that’s what we plan to do as well. And also we had our board meeting this week with our new trustees as well. It was, it’s the energy just seemed to be really, really good. And Andy, who is one of our new trustees, he’s going to be coming with, he has psoriatic arthritis and he’s actually going through a flare at the moment. So, you know, if you’re listening, Andy, Hope you’re doing okay. But he’s also a physio and it’s having that the different worlds of collide and actually getting his understanding. So, he’ll be on the podcast in a couple of weeks going through, his diagnosis and actually how he works and how he’s now more empathetic to people as well.

Katy: Yeah, and I guess his job is quite physical. So, it’s managing that as well as the disease and I guess managing different days, doing different things.

Debbie: Yeah, I think we’re doing okay, Katy. Yes, and also, if you’re going to the British Society for Rheumatology Conference in April up in Glasgow, we will be there shouting all about the charity and actually why we’re different to other national charities that are out there. We are that voice of lived experience.

Katy: I think we’re doing brilliant.

Debbie: And we’re going to do a really good short talk about all the experience, all the guests that we’ve come on, all the insights that we’ve learned and actually how this podcast is helping people living with inflammatory arthritis and from the healthcare professionals, what they’ve learned as well and from friends and family and from the general public. So yeah, I’m actually looking forward to it.

Katy: And it is that whole world perspective on living with the disease, which I think is what we’ve really nailed, to be honest. Just to sing our own trumpet or whatever the phrase is, blow our own trumpet.

Debbie: Yes, I’m really actually excited. I know it’s going to be tiring. That’s the only thing. because it’s three days. we have a stall but obviously there’ll be seating. So, we just need to make sure, A, we’re not sitting for too long, but also not walking around and doing too much all in one day.

Katy: Yes, this balance. Yeah.

Debbie: So yes, it will be interesting in how we balance that. So, you may even be able to do a quick episode whilst we were there, Maybe might even have to be just in the hotel room, but it’ll be our reflections on it. If you are healthcare professional, unfortunately it’s not open to people living with inflammatory arthritis. It is more for those working in the rheumatology world. But if you are there, please do come over and talk to us. we’ve got loads coming up, Katy. And I think you need to go and have a rest after your long night.

Katy: I definitely do.

Debbie: But yeah, so don’t forget to please rate and follow the podcast wherever you get your podcast from. You can download the episodes as well. I always struggle with word download, by the way. There’ll be a few bloopers coming out during the year, so listen out for them. Please follow us on social media. We are on Facebook, LinkedIn, Blue Sky, and Instagram. please continue the conversations and we will be having some adverts about the family perspective. So please do add in your comments or just DM us. They can all be anonymized as well, And don’t forget to sign up to our newsletter at InflammatoryArthritis.org, where you get the latest information on the episodes, any IA news, research, events, there’ll be a new blog on our website all about Ramadan from Hafi. So if you didn’t listen to Hafi’s episode, please do go back and listen to that one. It’s a really, really good one. When she was diagnosed when she was pregnant. So, fascinating interview there. But anyway, Katy, I’ll let you go and until next week, it’s goodbye.

Katy: Goodbye.

Why do so many people with inflammatory arthritis say “I’m fine” when they’re not? In this episode, Debbie and Katy reflect on masking pain, stress-triggered flares, and the emotional impact of diagnosis. They discuss how overwhelming early treatment decisions can be, why people diagnosed young often feel embarrassed talking about it, and how hearing others’ perspectives can reveal what friends and family don’t always see.

They also highlight the importance of community, from role models like Kathleen Turner to the online spaces helping people feel less alone, and share updates from Inflammatory Arthritis UK ahead of the British Society for Rheumatology conference.

Key Topics

• Masking pain and pretending to be “fine”
• The impact of stress and life changes on flare-ups
• Diagnosis overwhelm and medication fears
• Forgetting trauma as a coping mechanism
• Embarrassment and stigma around young diagnosis
• Shielding during COVID and explaining immunosuppression
• The power of online communities
• Representation and role models
• The impact of inflammatory arthritis on family members
• Supporting healthcare professionals and fitness professionals with education
• Building a charity rooted in lived experience

Key Takeaways

• “Every time we say we’re fine, actually we’re not.”
• Diagnosis is overwhelming — physically and emotionally.
• Community doesn’t have to be in person.
• Being believed can be life-changing.
• Family members are impacted too — and their voices matter.

Upcoming Episode – We Want to Hear From You

We’re planning an episode focused on the family perspective.

• Are you a partner, parent, sibling, or friend of someone with inflammatory arthritis?
• How has it impacted you?
• What questions do you have?
• What support would help you?

All responses can be anonymous.

Email us: info@inflammatoryarthritis.org or DM us on social media

 Connect With Us

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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/