Episode 53 How IA impacts families

Introduction: IA doesn’t just affect individuals; it ripples through the lives of the families who love and support them. 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’m not too bad. my son’s just gone back to school today after the Easter holidays. We had our usual spout of sickness. So, he was ill the first weekend of the holidays. My husband was a bit sick last weekend. And I don’t know if anybody else gets this, but whenever I get like blocked up, I lose my hearing in one ear. And it was so annoying for everybody because I couldn’t hear anything. Anyone was talking to me in my left ear because all my sinuses were blocked. So, I wasn’t ill. I just was really blocked up and yeah, and my son threw up on me on the first weekend, which was beautiful.

Debbie: I don’t miss that.

Katy: Yeah, so my one and only day off in the holidays, he was ill. So that was great. So, we didn’t get to enjoy very much. And how are you?

Debbie: I’m okay actually, yeah we didn’t actually have any sickness over Easter thankfully so yeah it was just I’m just trying to enjoy the sunshine but

Katy: It’s still quite cold though, isn’t it?

Debbie: It is cold, but I think there’s like a few times like walking a dog. I’ve had, think all seasons in a day, we’ve had the sunshine, the rain, the snow, the hail, and then sunshine again. It was, it’s been mad, but no, it’s been nice. And just having a slight break from the podcast but doing so much still behind the scenes. We do have conferences coming up. Our first one, very excited, but there’s a lot to do with that. And what we are going to be talking about today, think Katy, you’ve actually highlighted in your first paragraph, is the impact that it has on families and that ripple effect onto families that are generally always there in the background, but they’re never really spoken about, are they?

Katy: No, and I think it is the missing piece especially on the medical side, like how these diseases actually affect your sort of day-to-day life and the relationships. And there’s no closer relationship really than the people that you live with day in, day out.

Debbie: They’re the ones that see really what goes on behind. Yes, because I think, you know, we did have Kat on, which was, you know, great from the friend’s perspective, but actually we don’t want to really show our friends what we go through every day because we want to go and have fun with them. That’s what, you know, that’s part of that life.

Katy: Yep. And totally know what goes on.

Debbie: But your family do see you struggling and trying to go through the diagnosis and then the medication. And I must say thank you to everyone who has sent in comments. We couldn’t have done this episode without you. And, it’s been really hard to read some of what’s been sent in. It’s the first time I probably got quite emotional about it because I don’t, I don’t see apart from obviously with my daughter, but we don’t see that side of it because we’re living it ourselves.

Katy: Yes, that’s true. Yeah. I think it can be harder for the people viewing from afar because what can they actually do? They feel quite hopeless about the situation because all they can do is sort of offer you a hug potentially depending on how many joints are hurting.

Debbie: Gentle hugs, yes. As I always say, gentle hug, please.

Katy: pick up a few of the household tasks when you’re really flaring, but other than that, they are just viewing from afar without being able to have that much of an impact.

Debbie: Yes. And I don’t think there was actually much support for them either. I think this is something that is really lacking in it we’re going to be taking further as the charity because they are the kind of forgotten side to it all, but they are, and I think it’s come out in all our podcasts. It’s actually how much we need them, and we need that support and that network to really keep us going. And if they’re not supported, how can they then support us as well?

Katy: Yeah, because you’ve to put your own life mask on before you support other people. I love it.

Debbie: Yeah, you do like that saying, don’t you?

Katy: I absolutely love it.

Debbie: Yes, well, we’ve had comments from people that have been, say together over 15 years and the inflammatory arthritis has been kind of part of majority of that journey. Some that have been parents, sisters, but there’s also been people that have been together for so long, but they’ve only recently had that diagnosis and how it has really impacted on their lives. And I think that’s again, something that we’re to go into a lot more because it is, it is that hidden impact. But it’s just like our life revolves around how she feels that day. We don’t always say it out loud, but everything from plans to simple things like going for a walk depends on pain levels. And I think that really highlights that it is everyday struggles, isn’t it?

Katy: Yeah. And it just shows that, that person who’s supporting them, their partner or their parent, it impacts on what they’re doing day to day. And it probably impacts on the amount of activity that they’re doing because they probably don’t want to do things by themselves. They want, you know, they want it to be together. But then, nobody’s in control of exactly what they can do every day.

Debbie: No. And I suppose what also came out in Charlie’s episode is even though he didn’t really speak to his first wife about it though, but when you’re both working and you’re coming home and your fatigue hits you. But then also your partner is tired and everything as well after coming home from work. And that I think can start some conflict because it’s like, well, I’m tired, but I’m more than tired but then, you don’t want it to be a competitive thing.

Katy: No, no, and that’s always the problem. And I think the person that’s got the pain and the fatigue quite often won’t want to say when they’re really struggling, even with their nearest and dearest, because they don’t want to have that kind of empathy, sympathy feeling all of the time. And I think one of the quotes that we’ve seen in here, the sort of the hardest part is that it’s invisible and people think that that person’s fine. So, they don’t understand why they’re exhausted or struggling. And I think as the partner, I guess you’re always having to try and justify, I guess, if you’re making plans with other couples, an example, and you’re the couple that always backs out because your partner can’t go. You’re always having to make that excuse and that must be really difficult. Not excuse either. That’s the wrong word.

Debbie: Especially also if you booked babysitters to come round.

Katy: Yeah. And the cost, the added cost of things like that, depending on how you’ve booked your babysitter, whether it’s through one of the apps that you have these days or whether it, yeah, yeah, you can.

Debbie: Is there an app? gosh, that’s changed since my time. I feel old.

Katy: Where there’ll be cancellation terms. But then equally, if it’s maybe a family friend or someone that lives down the street, then you’re going to feel guilty, aren’t you?

Debbie: Yeah, because also the impact in on their life, on their evening, it’s just that huge ripple effect that it just continues to go out. And I suppose the other hardest part that’s come is also, as you’ve mentioned that the economic side is for someone who’s been, they’ve been together for so many years, and the wife was diagnosed in the last couple of years, and they were planning their retirement. And you know, I think retirement gives you some sort of hope is that you work so hard and then you can enjoy your life, not doing the nine to five every single day. But then when you’re diagnosed, when you are going through and trying to plan your retirement, everything changes. And the husband was then going to go down to part-time gradually,

Katy: Yep.

Debbie: But then they couldn’t because the partner had to retire early. And that changes everything. And it’s just like, but that’s what you’ve been looking forward to for so long. And how do you then as the family go through that together while you’ve got your partner, there’s someone that you love so dearly is struggling every single day.

Katy: Yeah, yeah. And quite often as well, when people think they’re going to retire, they think about going on lots of holidays, which obviously these diseases can impact your ability to travel, especially with some of the medications. So, you might be able to only do short trips, whereas you’d planned maybe to go away for sort of longer trips, kind of a month, six weeks at a time. Or some people choose, don’t they, when they’re retiring to live?

Debbie: Yes.

Katy: Maybe in Spain for six months of the year and the UK the other half of the year. So, all those sorts of plans really change. But equally, if you’re diagnosed younger, it’s thinking about, when you’re planning your retirement is, planning for what age you think you want to retire. I don’t think research and in terms of the average retirement age for people diagnosed maybe, like people who are diagnosed pre-30. It’d be quite interesting because one thing I’ve noticed, especially when looking at things like life insurance, is the algorithms I think that they use to predict what your…life insurance premium should be. Sorry, this is going quite boring, but it’s useful because your life insurance,

Debbie: No, but it’s useful because it impacts families as well, doesn’t it?

Katy: the actual premium that you have to pay is so high because I think the algorithms that they’re using are based on people’s outcomes pre-biologics.

Debbie: Yes, I was going to say it probably hasn’t been updated since then. No.

Katy: I don’t think it’s been updated because it’s so expensive to get life insurance. And when I was made redundant, it really made me think I need to actually look at financial planning a little bit more seriously, because making sure that if I lost my job again, and if it was for a longer period of time, because people who are losing their jobs at the moment, they seem to be out of work for quite a long time. Really, really hard if anyone’s in that position. So, you want to make sure you’ve got those, capability for an insurance plan to pay out your wage sums whilst you’re not working so that you can cover things like your mortgage. But the cost to actually set that up is incredibly high. there’s quite a lot of insurance I can’t get because of my diagnosis. No, so you can’t, I honestly can’t remember because was a couple of years ago now that I went through all kind of setting everything up and it’s just an absolute nightmare. So, I’d love to see more work in the financial planning space and personal insurance space in terms of all those details being actually up to date on like current stats of people’s outcomes.

Debbie: Yeah, but I suppose also the flip in that is making sure that your partner has all of those things as well. Because if you then have say a really bad flare and then, your medications then aren’t working and having to change that medication, you may then have to step back. As Andy said last week, thankfully his work had been amazing, but he’s had to step back and it is that, you say, it’s that whole financial planning around it. Because then obviously if the person who doesn’t have IA is the main breadwinner and just making sure that they have got something in place to make sure that if they ever get made redundant or if they then get a diagnosis of something, you are financially. going to be okay. But then I suppose this is where you’ve got PIP and universal credit.

Katy: Yeah. Yeah.

Debbie: So, it is everything that goes on in life that people don’t realize goes on behind these doors and it’s the reality of it all.

Katy: But it’s also as well when you’re being diagnosed, these realities of life aren’t discussed and I appreciate we can’t expect medical professionals to be talking to us about our retirement planning, our financial planning and things like that. But I think there could be a little bit more signposting as to what you need to be thinking about who you can, know, citizens advice can be a fantastic sort of resource for this sort of thing. Who do you need to be in contact with? And you know, if there were a few more stats about average retirement age, then we can all put that into our own sort of financial plans when we’re setting up our pensions. And there’s no right or wrong answer either because anything can happen tomorrow. Nobody knows.

Debbie: Well, exactly. think as you say, it’s just trying to prepare yourself though for what ideally you would like. I think you’ve got to start from somewhere. What do you ideally like?

Katy: Yeah, yes. And a lot of people will, you know, work part-time to sort of manage the fatigue levels. So again, that impacts on earnings. And if you’re single, I think it must be even harder because if you haven’t got that sort of cushioning of somebody else in the family to help support the sort of longevity, that’s really tough.

Debbie: Because actually when I was speaking to someone, are actually a sibling and they’re living with the person who’s got IA at the moment, but they are so worried about when they move out.

Katy: Yeah.

Debbie: because they’re so close and it’s actually, well, what will happen? I’m not going to be living with them. But it’s just making sure that you have those lines of communication. And again, I think also throughout the whole themes of our guest come on is that feeling of shame as well and not wanting to talk about it. Cause I remember Hansa saying that she had to really pluck up the courage to tell her new partner about her diagnosis. But why should we, this is us, you know, and this is what we try to do in life. I think communication lines are so key. But think one time we did have a family member ask us, is it, do you find it annoying how often they say, are you okay? Can I help you with anything? And I think that can get quite annoying, but it’s coming from the best intentions. So, I think it’s always going to be a tough one.

Katy: Yeah, so actually there’s somebody’s written in saying, sometimes I don’t know whether to encourage her to push through or tell her to rest. I worry about getting it wrong. And I think that must be really hard, worrying about getting it wrong. But I think the worst thing you can do is do nothing. Because if you get it wrong, hopefully the person will tell you that you’ve got it wrong so that then you can change it for the next time. But you know that person better than I do.

Debbie: Yes, yeah, again, it’s that communication. It really does. Yes, yeah, yeah, completely. And I suppose the other hardest part that’s come out, is about the medication side. Because I want them to go on this other medication because this isn’t working. Well, you know, and it’s just trying to have that conversation with the doctors to try and, this isn’t what they’re like generally. You know, this is what goes on behind the scenes, but because I suppose then the medical people can’t really see that and you know, and if they’re not flaring that day, what do you then do? they don’t like seeing their loved ones in pain and struggling. And it seems to have sometimes taken away their identity one.

Katy: Yea and I think if you’re always looking at the positive impact, that can be quite tricky though as well. So, I think a huge positive can be people seeing the fact that you’ve been struggling but then seeing the good times. So, my husband proposed to me after I’d done one of the marathons, he said in his wedding speech, because he couldn’t believe, literally what a lunatic I was to have this disease and still do marathons, fall over in one and still complete it.

Debbie: And he’s still married, she’s wow.

Katy: So, it can show your loved ones your true determination to kind of get things done. Yeah, yeah, yeah.

Debbie: Yeah, and the resilience has come out a lot as well. And people don’t realize, they’re like, they’re going through all of this, but they’re still trying to still live their life as best as they can. And actually, that’s resilience that keeps you going.

Katy: Yeah. And a great one is it’s made me more patient and more appreciative of the small things. I think quite often when you’re both very well, you just kind of take it for granted, don’t you, that you can do all this different stuff. But actually, sometimes it is about doing the smaller things and life not always being about these huge, big fancy events and big days out. Whether it’s just doing a board game together at home or, things like that. It means you’re actually connecting on a kind of closer level than everything being some big grand event, which I think the problem with things like social media is you see everybody doing all these crazy great things, but life isn’t like that. No one can afford that.

Debbie: No, and even if I could afford it, I wouldn’t be able to do that. Things like that. It’s just like when my children, were growing up, as much as I wanted to take them to all the theme parks and everything, but I knew that I would be dead at the end of it. Like my joints would be absolutely killing and then that would ruin me for the rest of the holidays. So actually, it’s all that balance. And there is one quote as well that’s really, really good that as you were saying, it’s been hard, but it’s also brought us closer together in ways I didn’t anticipate. And I think that is sort of sums it up because it is tough. Really is. And seeing people struggle, but then also it takes you to do new things as well. Like someone was like, we love to do like 10-mile walks and everything, probably the marathons that you used to do, Katy. But now they can’t, but they’ve now recaptured other things that they like doing, like bird watching and there’s benches in hides that you can just go and sit and actually.

Katy: Yeah, yeah.

Debbie: enjoy life but I think as you say whether it is the social media whether I don’t know what it is but you I think there is in society you have to be doing so many things to whether it’s to prove to people might because

Katy: Yeah. And you really don’t. Yeah. Well, it’s like one of my friends did the Brighton Marathon yesterday. She hadn’t told any of us she was doing it because I think she was a bit concerned whether she’d actually do it. And I was like, right now I can’t think of anything worse, but anyone doing a marathon, good luck. Because it is marathon season at the moment. there’s, yeah. And there was Paris Marathon yesterday. So, there’s been all sorts already, but.

Debbie: Yes, is. There is a London marathon coming up very soon as well. So good luck to everyone doing that.

Katy: And then Edinburgh Marathon will be at the end of May.

Debbie: Right. But then, you know, but then if you look at my life, it is so boring. You know, I don’t really do very much because I can’t do very much, but that’s, that’s me and that’s my new normal. And even I was talking with my husband the other day about all this, you know, he has just been skiing with my youngest and it’s just like, great, we can, they did it quite cheaply, thankfully but it’s just like, well, I can’t do that. And I don’t ever want to go skiing because me skiing doesn’t work and snow and cold doesn’t work either. I’d rather exactly

Katy: Well, it’s knowing your limits, isn’t it?

Debbie: I know what I want to do and actually, but if you want to do that, that’s fine. Go do it with other people and then we can do something that we enjoy together.

Katy: Together. Yeah. So, it is as well, I think, as well as the people with the inflammatory arthritis conditions, it’s sometimes as well, letting friends, family know that it’s okay for them to do things by themselves. We don’t always have to be involved and don’t feel bad for us, because sometimes we might just want to have a rest by ourselves at home. There’s also got to be a bit of that. Again, it goes back to communication. Some people love doing everything and everything together. Me and my husband don’t. it is just, you know, whatever works.

Debbie: Yeah, because I’m very much the same. And thankfully, my husband is very, also very independent. So, he’s always gone out with his mates, and I’ve always gone out with mine, and we’ve never really sort of gone out together. But then and I suppose it’s trying to think of your family members’ mental health as well, because it is that emotional impact on those people. But it’s just, we always say it and it is so hard to do but look after yourself. Whether you have inflammatory arthritis or your partner has inflammatory arthritis. Just that self-compassion as Andy said last week. do as I say, not as I do.

Katy: Great bit of advice.

Debbie: Yes, it was. But it is, you know, as, yeah, you know, full circle moment here, Katy, coming back to what you said originally, you have to look after yourself. That makes you better to look after other people. And as hard as it is, and I must admit, we are going to be, I think this is something that we’re going to be coming back to, again, is that family perspectives, because there is so much more we can talk about. And I think you’ve highlighted something also about like financial planning. We’ll try and get someone on to come on and talk about that not just for people with IA, but for others as well and what you should be doing.

Katy: I think it’s thinking about as a family rather than as individuals. Not that I do that, we financial plan completely individually, but again, I also do. I’ll put that disclaimer in there. We know that if one of us wasn’t able to work, hopefully, I’m not sure I could anymore. Hopefully one of us would be able to cover the other person’s expenses.

Debbie: Yes, again, it’s just it’s all those things that are never really ever spoken about, which is what we’re trying to do on this podcast and the charity is to talk about those things.

Katy: Yeah. Well, and as Brits, we don’t really talk about finances openly. No.

Debbie: But then we don’t talk about health openly either. We’re very much, stiff upper lip, isn’t it really? I think that’s the saying.  

Katy: Yeah, that is the saying.

Debbie: But yes, but this is what we are trying to do. And we are, you know, those topics that never ever get spoken about that we are really trying to highlight as well But thank you so much again for all your comments that have come in. They’ve been absolutely fantastic and yeah, very emotional to read. But you know, this is what we’re here for. So please do reach out to us.

If you want to continue the conversation. We are on social media. We’re on Facebook, LinkedIn, Blue Sky and Instagram. Please sign up to our newsletter at inflammatoryarthritis.org where you get all the latest information about the episodes, any research. And I must admit, Katy, I really like your research ideas on retirement. I think that’s a really, really good one. you can also email us at info at inflammatoryarthritis.org. But until next week, Katy goodbye.

Katy: Goodbye.

Summary

Inflammatory arthritis doesn’t just affect the person living with it, it reshapes the daily lives, emotions, plans, and futures of the people who love them. In this heartfelt episode, Debbie and Katy explore the hidden impact on partners, children, siblings, and wider family members. Drawing on powerful listener submissions, they discuss the emotional load, the financial strain, the invisible nature of the condition, and the resilience that families build together.

As Debbie notes, “our life revolves around how she feels that day… everything from plans to simple things like going for a walk depends on pain levels.” And as one listener shared, “it’s been hard, but it’s also brought us closer together in ways I didn’t anticipate.”

This episode is honest, validating, and deeply human, a reminder that chronic illness is always a family story.

Keywords

inflammatory arthritis, family impact, chronic illness, relationships, partners, caregiving, fatigue, invisible illness, financial planning, resilience, emotional wellbeing, IA community, lived experience

Key Topics Covered

• The unseen emotional load on families
• The invisibility problem
• Daily life shaped by pain and fatigue.
• Financial and retirement planning challenges
• Identity, independence, and shifting roles
• Resilience and unexpected closeness
• Communication as the anchor
• Letting loved ones live their lives too
• The need for better support for families

Standout Listener Insights

• “Our life revolves around how she feels that day… everything depends on pain levels.”
• “Sometimes I don’t know whether to encourage her to push through or tell her to rest. I worry about getting it wrong.”
• “It’s been hard, but it’s also brought us closer together in ways I didn’t anticipate.”

Useful Resources Mentioned

• Citizens Advice: guidance on benefits, employment rights, and financial planning
• PIP & Universal Credit: support options for people living with long‑term conditions
• IAUK Newsletter: updates on research, events, and community stories
• IAUK Social Channels: Facebook, LinkedIn, Instagram, BlueSky
• Email: info@inflammatoryarthritis.org

Stay Connected

Join the conversation, share your experiences, and help us shine a light on the realities families face. Sign up for updates at inflammatoryarthritis.org and follow us on social media.

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