Episode 45 – How does IA affect friendships?

Debbie: Hello and welcome to Inflammatory! with Debbie

Katy: and Katy.

Debbie: How are you, Katy It’s been a while.

Katy: I’m really good, thank you. Yeah, I know. I mean, you’ve moved house, so how are you?

Debbie: I am so tired. It was so stressful because I suppose one thing I only thought about the day before and you really need to think about this. If you have your medications in the fridge, how are you going to transport them?

Katy: God yes,

Debbie: And the timings, you need to make sure that you get the timings right so they’re not out of the fridge too long in order to transport.

Katy; Yep too long yeah,

Debbie: Because we moved, the only thing that we mainly did take from our old kitchen as much as I love my old kitchen, it’s beautiful. We did take the fridge freezer because of my meds, because the one here isn’t as big. And we had to tell the removals people, can that be taken last because we can’t unplug it because of my meds? And that, yeah, yeah, that’s fine. So that was the last thing to be taken out and then the first thing taken in. But thankfully we had a phone call very early on actually from our solicitor to say everything’s gone through. So can you now vacate your old house? So thankfully it was just quickly get them out. Drive up to the new house, had to wait about 10 minutes, I think, or so for the keys to get in. actually they weren’t out. And we obviously kept them cool, surrounded by other food, because you can’t put them with frozen food because you don’t want them to get frozen. They have to be kept, because they have to be kept above sort of, think it’s about three degrees. And so, yeah.

Katy: They would, yeah. Yeah, actually, Yeah, because I remember when I used to get them delivered to the office and then I’d take them home from the office fridge to home. And I was always panicking about delays on the London Underground in terms of then being able to get them home before they’re at the wrong temperature. So I used to take a cool bag to work.

Debbie: Of course, yeah. Yes, well, we packed all our cool bags. I just didn’t even think. Yes, but we do have some of the, bags for life. I think we’ve got one from a supermarket where it was actually sort of, but it’s just things like that that I didn’t realise until like the day before and I was then slightly panicking, but my backup plan was to then put them in a neighbour’s fridge and I would have gone back and picked them up if we had been delayed. But again, that’s just something that you do need to think about and where I’m going to put all my bins and making sure, I have my bins handy as well as when I have my medication. It’s just everything else, let alone the stress of moving utilities and yes, thank goodness we are in. That’s all I can say now.

Katy: I mean, we’ve not moved house for years, but I did it really well. When we were moving out, I had a hospital appointment. So I went to my hospital appointment. My husband had to deal with all the packing up. And then after the hospital appointment, I just came to the new house. It was great move because I didn’t deal with any of the stress.

Debbie: Yeah, sounds perfect. I should have, sorted out a coffee with a friend or something, but… I must admit our removals they were absolutely lovely. obviously there’s things that I can have picked up at all. Cause we did our previous move by ourselves, but this one, was just like, I physically can’t do that.

Katy: Yeah. I’m glad you did that because that’s what we had. I mean, we, was a very different situation. We weren’t moving from a big house. We were moving from a one-bedroom flat to a house. In a one-bedroom flat, you don’t have that much stuff anyway, but we still got packers to come and then they, took everything from our old house and then just built everything in the new place. that was years ago though. So I don’t know what’s on offer now.

Debbie: Well, put this way, I’m never moving again. This is our forever home and that is it. But then I was obviously then stressing about what joint was going to hurt because each day I wake up and a different joint hurt, I think with the stress and everything. But I don’t know how you feel that when you kind of a heightened amount of stress and if your joints, they’re not that bad, but then I don’t worry, but I just think next time when you get the anti-climax and you come down from it all that’s when I do find I hurt more.

Katy: Yeah, yeah, I guess the excitement covers it up, doesn’t it? If you’re doing something, No, I do

Debbie: Think whether it’s the adrenaline that kicks in to cover it and then once you’ve all relaxed a bit, that’s why I don’t like relaxing too much just because I know that I might be in too much pain.

Katy: I know exactly what you mean. Yeah. Yeah.

Debbie: Yeah, it’d be interesting to know how other people, you know, cope with that because I think it’s, it’s, it’s not trying to balance it. It’s just trying to limit the stress. So it’s kind of then always at an equal level, but with everyday life, that’s really hard.

Katy: Yeah, because so many different things can happen that can increase your stress levels. You can plan for a very uneventful, unstressful week, but you don’t know what’s around the corner.

Debbie: No, you really don’t at all. So yeah, so that’s me at the moment. Reflecting back on Hafi’s episode last week, that what a story. If you haven’t listened, please do go back and listen to it. It’s episode 44. What were your immediate thoughts, Katy?

Katy: Well, I think part of it is quite comforting that because Hafi comes from a medical background herself and with her husband being a doctor, that everybody can miss the signs and everybody can struggle with getting the diagnosis. However, sort of medically educated you are, it doesn’t mean you’re not going to miss the signs, especially when it’s someone close because I think you can often maybe think, well, no, it’s not gonna happen to somebody I know. And I guess still, I don’t know what the percentages are, but the percentages of people maybe under 40 being diagnosed with rheumatoid arthritis is probably quite a low percentage. But I know for other forms of inflammatory arthritis, like axial spondyloarthritis, that can be diagnosed more in your 20s to 30s, can’t it? So it’s a real mix depending on the specific inflammatory arthritis that you’re diagnosed with. But yeah, and I just thought that my favourite bit was towards the end when Haffy was reflecting on how far she’s come and sort of her gratitude for where she is now despite all the sort of hard times that she had.

Debbie: Yeah.

Katy: In the lead up to being diagnosed with trying to have a baby. So, I think there’s so much that you can reflect on, but the biggest part for me was the fact that despite all of that, she’s still taking a positive attitude forwards.

Debbie: Completely. And I think she said it, that you do need to have those bad times in order to appreciate the good times. And she went through some really bad times, but I can’t, we’ve both been pregnant and I can’t imagine what it would have been like to have then had that diagnosis whilst you’re pregnant because your mind switches straight away to, it’s not just me now.

Katy: Yeah. Well, you become a mother. You become a mother.

Debbie: Exactly.

Katy: You’re not a mother when the baby’s born. You’re a mother when you find out that you’re pregnant because you straight away, things are no longer just about you and your body. They’re about the baby that you’re carrying. So, making those decisions on medications just for yourself, it can be hard enough if you don’t fully know how your body’s going to react to them. So, knowing that you’ve got a baby inside you, then being presented with medications, obviously you’re straight away going to push back.

Debbie: Completely. you know, we’re not political at all, but even in the news of what’s been said recently, even about paracetamol when you’re pregnant, now that has been disproven, by the way. And I did have to take paracetamol when I was pregnant. Again, it was a bit like, can I? What does, but then obviously all doctors and everything said, no, no, it was fine. And it was fine. And my children are fine. But it’s just that thing at the back of your mind and how she dealt with that and then having then a second child as well, hats off to her. And, now thankfully she is doing fine. But what also got me and what I do, sometimes get a bee in my bonnet about is not being able to see your blood test results. They are our bloods, why can’t we see them? And that’s…

Katy: Yes, yes. And then we can understand our condition better and how maybe those inflammatory markers and other markers are changing throughout time. You can also think about things you’ve done on run up to the blood tests, even if it’s not medically proven that what you’ve done, just, think just knowing those patterns yourself can really help you look after yourself better.

Debbie: Yep. My daughter had her blood done by our community nurses, and they always used to email me the results and email it straight on to her hospitals as well. So I got to see hers, which is great. But now she’s in adult care, I don’t but then I’ve never seen mine. I just phone up to say I’ve had my blood test. And they then phone you back if there’s anything wrong or anything unusual. But I want to know what my normal is.

Katy: Right. Yeah, I don’t… Yeah. Yes. have you ever asked in one of your consultancy appointments?

Debbie: Yes, but they just say it’s all fine.

Katy: Yeah, because I’m just trying to think. I feel like I’ve asked not for a while and I don’t actually get told even to be honest, what they’re measuring for. I see all the codes on the blood test form, but I have to be honest, I don’t always know exactly what’s being tested and that’s maybe something I should be a little bit more aware of.

Debbie: Yeah, because now I don’t even get the form. It’s just electronic on their database. So, when I go and have my blood test, exactly.

Katy: And I was just turned to that, I get a code, yeah.

Debbie: So, we don’t even know what they’re testing for. But it’s our blood. And I think for patients for all this talk about shared decision making, we need to have all that information.

Katy: Yeah, no, because otherwise how do you make decisions?

Debbie: Exactly. You know, what is if something is then on the borderline, do I then want to up my medication or not? That should be my decision. And so we are going to and I’m really going to push for this for all consultants to do this because we need that information, whether people want it or not is another matter that’s individualized, but it should be there if you want it, whether it would then eventually go on to the NHS app. I don’t know, but then I think it depends on who takes your blood, whether the GP does.

Katy: Because the NHS app feels like it’s, what I see on the NHS app feels more focused on primary care. So I can book my GP appointments through it, but I can get my repeat prescription on it, but anything to do with my rheumatoid arthritis, I don’t see anything on there.

Debbie: Mm, because on my NHS app, I can see when I have appointments with secondary care. Why is that so… But it’s the NHS app. my gosh.

Katy: Oh, so I don’t see that. I only see primary care. And then I get a text message about, I think I get very confused if I’m honest, because everything feels a bit, I wish it was all just in one place.

Debbie: Yeah, because I know with my other hospital, my eye hospital, that isn’t on there. And then I have to go through their portal to do something different. and I was actually on a research call last week. And I was saying actually how frustrating it is that the NHS doesn’t share data. They’re all in separate databases. but I think people assume that they do share. But they don’t. And I think that’s something that hopefully with the NHS 10 year plan, they can look at because we don’t want to keep signing consent forms and everything. This is our data. And if it can help research, why wouldn’t you? get that, you know, if you want to opt out completely fair enough, but that should just be a box and then that has to then to be taken off the database that you can’t use it. But you know, it just seems so straightforward, but it’s really not. So that’s my other thing that I want to keep banging the drum on and say,

Katy: Yeah. No, it’s great. Yeah.

Debbie: Why not? Because, as patients we need it and otherwise we’re pig in the middle. And that’s not the amount of burden it is having a health condition anyway. We don’t need that extra sort of admin side on it when it’s digital and it should all be there. Yes, but anyway, let’s talk about our new theme for the month. I can’t believe it’s February already.

Katy: 100%. I’m so happy though, because today is the first day and I don’t know how long I’ve seen a blue sky, hence the very bright jumper. watch on YouTube? There’s a plug.

Debbie: It does look very spring like, Katy. It really does.

Katy: Yeah, I feel quite spring today, but I know tomorrow is going to be miserable again. So there we go.

Debbie: Yes, I think today is just the break and thankfully we moved when it was sunny as well, freezing, but it wasn’t raining. So the theme of February is love, friendship and chronic illness. And I think we’re going to highlight more on friendship at the moment because I think with all our guests as well and what with Hafi and everyone has mentioned is that support network.

Katy: Yeah.

Debbie: And we did do Support Act podcast number 23 episode. So please go back and have a listen to that. We did a sort of a light touch on how support networks can really help us. But it’s having those friendships that can really help you so much. It’s not just the emotional side or the physical side of, you know, them coming around to help you do things, but it’s just everything that’s all involved in living with a chronic illness. But Katy, if you were diagnosed today, how would you explain to a friend what inflammatory arthritis or rheumatoid arthritis is?

Katy: Yeah, so I think, I think for one, I think when I was diagnosed I was, I tried to put up a front that I was still the same person and everything was fine. I could still wear heels to your wedding as a bridesmaid. Biggest mistake ever.

Debbie: Yep. Yeah. I can’t even wear heels now. Gosh.

Katy: I’ve got non left. mean, pretty much, as soon I got diagnosed, all those sorts of things were binned. Anyway, so I think I try to be a little bit more pragmatic with the way that I explain it and not try and put on a front that everything’s fine because everything isn’t fine. The biggest thing would be talking around fatigue and the fact that you need good sleep. You need to be able to sort of get enough rest. But equally the movements, but still very important. So, it doesn’t mean I want to just be sitting around doing things seated. I still want to do things, but it’s just making sure there’s enough space between. So, when I got diagnosed, everyone was having hen dos and I was going on big inflatable things in the middle of lakes and stuff. honestly, my wrists were awful. It was the worst thing I could have ever done. And really, I should have been saying, actually, I’ll just sit that out. I’ll come, but I’ll maybe just watch. But FOMO gets the better of you.

Debbie: Yes. Yeah, but I suppose for you that, I was just gonna say that’s your FOMO side coming out as well. And I think that’s, again, that’s another sort of battle that we have to do with ourselves, isn’t it? It’s like,

Katy: Yeah, and I think it’s being honest what you can do.

Debbie: When you were diagnosed, you probably didn’t know what you can do and what you can’t do because it’s such a learning curve when you are diagnosed. Nowadays, because obviously when I was diagnosed, they would just tell me to rest and say, that’s all I ever did. And so when I never went out and my bedroom became like my sanctuary, and that was the way that I could deal with the pain and just, you know, scream into a pillow if I wanted to. But nowadays, because as you say, we need that movement and everything but it’s how we get that across to friends that we still don’t know what we can and what we can’t do. We don’t know if these things will make us hurt or not, but please bear with us sort of thing. We’re not being a pain, we’re just, we’re in pain and we’re just trying to learn how to manage these conditions a bit better. And obviously medications take time as well.

Katy: I the one thing I did do, yeah, and the one thing I did do was I told people I couldn’t really drink like I had been before. Because I think we grew up in an era where drinking was such a big part of youth culture.

Debbie: was, it was a ladet, wasn’t it? That’s what you did. Yeah. Yeah.

Yeah. And so that was the one thing I’d say I did, I handled pretty well, was sort of just making sure people understood that I’m not being a complete bore. I can’t drink because otherwise my liver might be ruined, which is the case regardless of any medications. So I think it’s just, you know, being a little bit more open and not trying to cover over the cracks. And because the problem is you can go and do all these things, but what your friends don’t see is when you’re absolutely drained, dead, miserable, angry because you’re in pain, you know, it’s all those bits that come after you’ve done too much that they won’t see and understand.

Debbie: And I suppose it’s that FOMO fear as well, saying, if I don’t go out, they might not invite me out again. And…

Katy: Yes, yeah, and you’ve awfully have heard of people that that happens to that their friends just don’t understand. but then what I would say is what that shows you is who your true friends are. And I think, you know, I’m horrendous. I collect friends like Pokemon cards. But what you’ve got to think about, what you’ve got to do. Sorry, people who know me.

Debbie: No offence taken there, Katy, but okay.

Katy: But, and I’ll spread myself too thin, but I think something like this actually proves who your true friends really, really are. And, the ones that do care will stick around.

Debbie: Yes, I learned that from a young age. I probably mentioned this as well, growing up, that’s when I realized who my friends were and who they weren’t.

Katy: A good lesson to learn young. I know it’s a hard lesson and a horrible lesson, but I think that takes you a long way to be able to actually work out who is and who isn’t a good friend.

Debbie:  Yes, yeah, but now I think though it takes me a long time to trust people though. That’s the only sort of downside on it. And I have some really lovely friends, but I have a very close-knit friends and that’s all I have really because,

Katy: Yeah. I think that’s good.

Debbie: yeah, well, it’s me because I’ve had so many, when I was younger, I did have loads of friends, but then the way that they treated me because of my inflammatory arthritis, it’s just like, can’t keep going back and doing that to myself. So, you know, I’m happy in me now. I don’t need lots of people. And I say, because I don’t like letting people down either. So, it is all that trial and error, but I think if I was diagnosed today.  Again bit like you I would just try and be as honest as I can and just say look “This is going to be a journey” I think but any diagnosis is that journey but you don’t know what’s going to be ahead of you. But please support me if I just want to phone you just to rant at you. Don’t take offense It’s just I’m in pain. I don’t know who else to do this to

Katy: Yeah. And I need to let, because actually that’s the other thing, when you’re in pain, you either need to curl up in a ball and get through it, or you kind of need to let all the frustration of it out.

Debbie: A very frustrating illness because again, the misconceptions out there trying to get that across to people. So please don’t give any unsolicited advice to us. You know, that, I think we’ve mentioned that really doesn’t help. But just to be with us and just not even then keep saying, you okay? Do you need anything?

Katy: Yeah.

Debbie: Just don’t keep saying that we will come to you, I think. But obviously everyone’s different and they might like that. But again, it’s hard.

Katy: Yeah. And I think it, I think it is setting those boundaries of what will work and won’t work for you. So actually telling people, please don’t say, you okay all the time? Cause that actually drives me insane. but obviously some people will want that. but take it that will come to you and say, I’m really struggling. Can you help with whatever it is, whether it’s just a chat or, anything like that.

Debbie: Yeah. And obviously, you know, listen to this podcast as well. get your friends to listen, because that will give them an insight that you don’t have to sit there and tell them everything. It’ll actually be just have a listen. And this is what our life with inflammatory arthritis is like. We have good days. We have bad days. When we’re medications, sometimes we do have those medication hangovers. So just, just bear with us, and then I think you again, you’ll find out who your friends are and those really good ones. They will be with you through thick and thin And also your family, because obviously going back to Hafi, her mum had rheumatoid arthritis and how they then, she then didn’t want to talk about it a bit because she didn’t want her daughter to have it. Probably a bit like me with my daughter, but then how close they are now and I think they just get it as well and they just support each other.

Katy: Yeah and they get each other, like you and your daughter, you can understand what each other’s going through. So that’s really helpful. And I think I mentioned it in the support act episode, as you get older, more and more friends pick up health conditions. So you do start to be able to understand each other a little bit better because even if it might not be an inflammatory arthritis or even an autoimmune condition, you can still understand the humps and bumps in the roads that people go through. So actually, that’s another positive of being diagnosed relatively young with one of these conditions. You’re actually so much more thoughtful and you’re so much more helpful to your own friends when they maybe go through something.

Debbie: Yeah, and that much more empathy as well, not sympathy, but the empathy that you maybe it’s a different illness, but I get your struggles, trying to get your head around it all. People do say they grieve for the life that they had, but actually it’s a new life. It’s a new chapter. How are you going to go through that, but go through it together. And then you can really support each other as well. And you do have the community out there as well,

Katy: Yeah. Yes.

Debbie: if you wanted to get in contact with us, please do. You can ask us questions.

Katy: And engage with our social posts because actually we’ve been getting quite a few people saying they resonate with things that we’re talking about or they’ve gone through something similar. So do like, comment share, and you’ll find a really great community.

Debbie: Well said Katy, that is a really good way to end. SO please do rate and follow the podcast from wherever you get your podcast from, please do look at our website we are at inflamamtoryarthritis.org, you can sign up to our newsletter where you will receive all the update information on the episodes, any research, any events or anything  IA related. We are on social media as Katy said, we are on BlueSky, Facebook, Instagram and Linkedin. Wont repeat what Katy said but like, share and comment be great to increase our reach. Go back and listen to all our previous episodes, get your friends to listen as well as we want them to understand what you are going through so you don’t have to sit there and tell them, anyway until next week Katy it is Goodbye.

Katy: Goodbye.

In this episode of Inflammatory! the hosts reflect on how stress, relationships, and chronic illness shape everyday life. Including the realities of moving house while managing refrigerated medication, highlighting the extra planning people with inflammatory conditions must navigate. They revisit last week’s guest, Haffy, and her experience of being diagnosed with inflammatory arthritis while pregnant and what that means for decision-making and self-advocacy.

A key theme is frustration with NHS systems and the lack of easy access to personal blood test results, despite growing calls for shared decision-making in healthcare.

With February’s theme of love, friendship, and chronic illness, Debbie and Katy discuss how living with inflammatory arthritis affects relationships, including:

Key topics:

• Managing medications during a move can be stressful.
• Support networks are crucial for those with chronic illnesses.
• Transparency in medical data is essential for patient empowerment.
• Explaining chronic illness to friends requires honesty and openness.
• Empathy is key in understanding the challenges of chronic illness.
• It’s important to recognize true friends during difficult times.
• Chronic illness can change social dynamics and friendships.
• Patients should have access to their medical information.
• Living with chronic illness involves a continuous learning process.
• Finding a supportive community can greatly enhance the patient experience.

Sound bites

“Why can’t we see our blood test results?”

“It’s a new life. It’s a new chapter.”

Connect with us

• Website: inflammatoryarthritis.org
• Newsletter: Sign up on the website
• Socials: BlueSky, Instagram, Facebook, LinkedIn

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/