Episode 13 – Sound System

Ep 13: Sound System

Introductions: Katy and I both have children and we both have IA. How does that impact on us being parents? Inflammatory with Debbie Wilson and Katy Pieris. Navigating life with inflammatory arthritis.

Debbie: Hello and welcome to Inflammatory with Debbie

Katy: and Katy.

Debbie: We’ve had quite a posh week this week Katy.

Katy: We have indeed, we’re just back from the House of Parliament.

Debbie: I mean it was such a wonderful afternoon. It was and to put it into context, we were there with the National Axial Spondyloarthritis Society who are working hard to reduce the time of diagnosis for people living with Axial SpA. At the moment the average time is 7.4 years which is a really long time so we’re going to be working hard with them to really help reduce time to diagnosis. But it was a lovely, lovely event and we got to speak to so many people who’d actually heard our voices.

Katy: I know I can’t believe that somebody recognized me not by my face but by my voice. I feel like a radio star. That must be what it’s like for you know people on Radio 1, Radio 2, you know if you saw them in the shopping queue.

Debbie: Yeah, you wouldn’t know who they were but until they start speaking. Yeah, completely. Yes, no it’s been great and again we’ve got amazing feedback on the podcast and the charity as well on what we’re doing. So it was a really, really great event and also we were in London on Friday for our Board Away Day.

Katy: Yes, that was brilliant and to see everyone sort of face-to-face for the first time in a little while was really lovely and to kind of talk about exactly what we’ve got planned for the months and years ahead to really make strides in this area.

Debbie: Yeah, completely. We’re working really hard to kind of get our strategies together to really develop the charity and the podcast as well but on that we do need funds to continue. You know the feedback on the podcast and the charity have been absolutely fantastic. My favourite feedback is “the podcast is so helpful especially as you talk about real lived experiences. Thank you two for your honesty and vulnerability. I feel I’m not alone and someone else understands that”. I think that is fantastic. It is exactly why we’re doing “it and someone else sent in saying it’s like living in another world within the world. Thank you for shining a light on my world” and again this is why we’re doing it and to continue our weekly podcast and to really develop the charity to really help everyone of any age living with IA. We do need funds so please if you can go to our website inflammatoryarthritis.org and you can donate through JustGiving but if you want to do something sponsorship there is JustGiving so please do get in touch with us and we can help you set something up if you want to do some fundraising for us.

Katy: Yeah and if anybody wants to join me I will be running a 10k in Battersea Park in June and it’s an evening event so it doesn’t take up your weekend so if anybody’s keen to kind of join me on that please do get in touch with us.

Debbie: Our producers just put in I vote for a 24-hour silence and he’ll sponsor that.

Katy: I hadn’t noticed that but I just seen that he’d sponsor that I thought he meant my run.

Debbie: No I’m not sure how I like a 20-minute podcast of just silence would be though. We could try.

Katy: Each to their own. Each to their own that’s what I say. People have got some weird things.

Debbie: Indeed but getting back to what we’re discussing today is parenting whilst living with inflammatory arthritis because not only does it affect our lives it does impact on our children’s lives as well. So, Katy can you remember when you first spoke to your son about having IA?

Katy: It’s quite difficult to kind of think about. I know when he was really little so I guess from the age of sort of I guess kind of two years old I’d maybe mention that certain parts of my body were aching hurting so like my wrists because at that kind of age they’re quite jumpy they want to be picked up a lot so I’d kind of just say oh mummy’s wrist is hurting today please at the moment really sorry I can’t I can’t pick you up or I can’t play in that way.

Yeah. And then it was probably more when he was around the age of kind of four when they start to develop a bit more of their own language. I kind of brought in the conversation that mummy has an illness that means that mummy sometimes feels tired, and she sometimes can’t do certain things and sometimes like I’ve got pain in certain areas so because I do think it’s really important. So, my mum was dreadful at this with me she never really spoke to me about illnesses or if she had kind of any difficulties although my mum is a bit like an elephant that she never I don’t know if elephants don’t get sick but this is what we say she’s like a massive elephant that never gets sick.

Debbie: Does your mum listen to these Katy?

Katy: No, she doesn’t know what a podcast is so it’s fine because my mum’s one of those people that she just doesn’t go to the doctors because then she can’t find out that anything’s a problem.

Debbie: Fair enough.

Katy: If you don’t go you don’t find out. Anyway, we’ve gone completely off tangent but because my mum didn’t really talk to me about illness so my grandma has rheumatoid arthritis and I never knew until I was diagnosed and my uncle had rheumatoid arthritis and type 1 diabetes I knew about the type 1 diabetes but I think it’s important to have that kind of discussion and sort of talk through what it is. My son, when my son once had to have a blood test and this is one thing I think must be horrendous if your child is going through the diagnosis process and having to get blood tests and once diagnosed all the sort of tests that that come with that because my son went mental having a blood test. So, what I did was try to put his mind at rest by showing him me injecting my medication just to try and kind of show look this is what I do every other week there’s nothing to be frightened of apart from when I screech a little bit when I put it in so sometimes maybe it’s not the best but just to kind of show him that actually a needle it’s not that scary appreciate it’s something going in not coming out. And actually, my mum used to take me to her giving blood sessions I think I just went to the free biscuit.

Debbie: I remember going a few times as well yeah

Katy: however I think that probably has helped me I say that but my sister’s terrible with needles but I think that did help me in terms of you know seeing something getting a free biscuit lovely jubbly yes I don’t know if that really explains how I talk to my son about it but I think it’s using age-appropriate language and now he’s a little bit older I do actually say I have an autoimmune disease he doesn’t really understand what that means but I try to explain it that you know when you’ve got a cold and that cold is caused by your immune system trying to get rid of the bacteria probably the wrong that wrong terminology and then that’s what’s happening to me when my joints are hurting it’s that same immune system attacking my joints like it does when you have a cold and it causes all the gunk.

Debbie: yes it is a hard one because I must admit I think again a bit like you my daughters knew that parts of my body hurt but when I then got diagnosed with the scleritis because we had to change all the lighting in the house and I wasn’t there to pick them up from school because I was in hospital that was really out of the ordinary and they did then worry about me all the time is it’s like well are you going to be picking me up from school and it’s like well I should be but I’m gonna just wear her glass dark glasses. And it is that balance of telling them but trying not to tell them too much for because it can cause anxiety yeah and my youngest it really did cause so much anxiety for her and just seeing how every day she was going to school being so worried about me it was just it was just heartbreaking because there was nothing I could do. I was trying to you know get take the medication but obviously my eyes were extremely painful along with all my other joints as well and trying to balance that with myself and trying to look after me whilst trying to you know not mask it in any way at all because I can’t. My face will tell you exactly what I’m thinking or feeling and my kids pick up on that as well it’s that balance of again we have such a close relationship which is fantastic but then they know when something’s wrong.

Katy: yeah which is brilliant.

Debbie: it is but then one of the teachers had a massive go at me saying oh your youngest knows way too much you should never have told her and

Katy: it was just like that’s none of your business.

Debbie: Completely I was livid but it was also you don’t know my child you don’t know our relationship and every parent-child relationship is so different and if I hadn’t have told her it would have been so much worse she would have thought that I was dying or something you know a lot worse case scenario than what was actually going on. Obviously living in a lot of pain is never a nice thing at all but I was hopefully trying to you know get through the tunnels to kind of get out at the end to kind of feel less in pain and kind of just try to manage what I was going through but it is it is tough when you have children as well because it’s not only having to think of yourself but it’s also how your children react to it as well. And when obviously then my daughter we have touched on this so many times, when my eldest was then diagnosed it was then kind of rebalancing it all as well and you can get through it and we have done but it does just bring you closer together.

Katy: I’m intrigued to know and I can share my own experience afterwards how far have they gone with their questioning have they thought you’re going to die and sort of what how did that develop because my son’s seven how did that develop as they got older?

Debbie: Yeah good, question I think when they were a lot younger they just knew that I wasn’t good I wasn’t well a few times and joints hurting but when I was trying to think how old they were when I got my scleritis diagnosis my whole world kind of seemed to implode and they did ask more the deeper questions because obviously we had to change things in our house more day to day and it was kind of their their thoughts were oh my gosh mum might die because of this. But it is trying to explain that it is our immune system doing this to them but it’s hard for them to think how does that then stop if your system is always attacking yourself surely if your body’s continuously attacking itself, it can’t stop it has to keep going and then that will then cause you to die. So, it’s just trying to let them know what the medications are there for and why we have to inject ourselves I do it weekly you do it fortnightly that actually that just tapers down the immune system.

And I actually watched this TikTok from an American rheumatologist, and she explains our immune system it’s kind of like a sound system. It’s always there just in the background generally you know it’s always on in the background but a good level just so you know you can on you can hear it so that’s what our immune system is doing it’s always just there in the background and if a cold like you said Katy comes along it then over it overreacts it turns the volume up a bit attacks the cold so you get rid of it and then after it’s attacked the cold it then turns it back self-down again and it’s just back to the normal level. But for us it always means that the volume is always turned up for no for a reason no one understands yet and again I think this is where research is really so important at the moment to really understand that actually when the volume is turned up that’s what our immune system is like, and the medications are the ones that turn it back down again. And that’s why we take our medications but how for you Katy how is that impacted on your son?

Katy: Just before I go on to that I absolutely love that because that just makes it so easy to explain yeah and I’m gonna try and use that the next time we end up in a kind of conversation. I think I think my son he’s not really asked that many questions if I’m honest in that because when he was very young he used to come to most of my appointments but obviously when I was on maternity leave because obviously I’d have to take him. But now he’s older we only really talk about it probably when I need to do my injection which is every two weeks so it is regularly but he’s never he’s never got really deep into the questioning about it but maybe he will when he’s older. And I guess what I kind of hope is what it means is it will make him you know a little bit more empathetic with other people when they’re sick and you know be a bit more curious about people’s sicknesses because then it’s all kind of education and then you learn more about you know what other people are going on kind of day to day. And with your daughters Debbie has it kind of impacted on their health anxiety I mean obviously your eldest does have JIA but how because you know how’s that kind of worked and how have you kind of seen that change in them going forwards?

Debbie: Yeah I know they both used to have major anxiety over more about their worries for me I think but as time’s gone on and obviously our appointments have got less and our diseases are mainly kind of being managed quite well they don’t they just think that’s just our normal day to day now that’s just life that is how it is. But they have actually really picked up on that word you said case about empathy my children do have a lot of empathy now with for other children in their schools that are ill. I did actually have I was a I think was a parent’s evening or something and one of the parents actually came up to me and said thank you to my daughter because her child had been through a really tough time with illness and my daughter was there supporting her not making her feel like self-pity or anything but it was that empathy side of it which really came out. And I explained why and she was like yeah your daughter is amazing thank you so much for actually helping her go through.

Katy: It I wonder if there’s a bit of a theme coming out here because you know you being kind to yourself then being kind to you so do you think you know living with inflammatory arthritis has made your better parent you know a bit more open and you know you know your limits and you’ll maybe it kind of forces you to communicate more with your children?

Debbie: It does completely I think it it’s hard to kind of say whether it’s made me a better person or a better parent because we live with this you know day in day out, we have is 24-7. But I think it has just shown that we do need to be kind to ourselves as parents it can be really hard just to get stuck into the normal day-to-day stresses and just admin of life. But actually, having these diseases you really do need to make sure that you do look after yourself that little bit better because we have you know we have the consequences we have those detrimental effects if we don’t. So, I think just showing how we can be kind to ourselves and look after ourselves that it obviously then goes down into how we parent for children as well. And that we do want them to be kind and them to look after themselves better as well. And I think that comes out in actually how they can be better. Just better people I think you know there isn’t enough kindness in the world and if having inflammatory arthritis if there is ever a positive this should be one of them that it does make us and it makes our families that bit kinder to people.

Katy: Hundred percent for me I think it’s definitely that being a little bit more open around health and something else I was just thinking about is you know when before your daughter was diagnosed and this is something that I think about quite a lot, that your own anxiety of them having the disease or getting the disease whether you know it’s in childhood or later in life.

Debbie: Yeah

Katy: And I think I’m sometimes quite I know I think well some it was probably growing pains but what as soon as he said oh my leg hurts I was like is it swollen is it stiff.

Debbie: Yeah I had that and I think that’s when the first conversations about what I actually have came out because obviously they were there in the the GP and then they were both referred to their local paediatrician talking about their symptoms and they obviously that they were asking what’s family history and it’s just like I have juvenile arthritis I have exactly the same symptoms. And it then I think made us have that conversation afterwards about what it is etc as well but you know it does break my heart every time that you know I go back and kind of think about the time that they were both in hospital having the same things it’s like oh my gosh this isn’t what I wanted but in all that negativity you have to think of the positive side of it all and actually it has made us closer it’s made us better and kinder. But then it is hard when you are having a massive flare though because I have been bed-bound all my joints have been so so painful I just haven’t really been able to get out of bed and that that is hard when you’ve got young children running around wanting mummy to do everything with them and even just putting your socks on is just really tough and I’ve mentioned it in a few podcasts before that this is where both my children were registered as young carers.

Katy: Oh yeah

Debbie: Because and there is support out there for children as well they should never be stigmatized for it.

Katy: How and how did you do that what was this kind of practicalities of you know registering them of young carers?

Debbie: It was through their school because I went in explaining how bad I was because I think they picked up that my children’s were they were both kind of suffering with anxiety so I had to go in and explain everything that was going on at home and it was really emotional for me to kind of put myself in that such that vulnerable position with a teacher to really explain how crap my life was at home. And this is this isn’t what I wanted at all, and I said look is there any support for my children. They and she did actually look up and we do live in Hertfordshire and there is young carers in hearts and we feel that I think she filled out a form and then they kind of sent me some information or phoned to me I can’t fully remember. And then they came in the summer holidays to a home visit and the woman who came I know her to this day and she is just the loveliest person and the people that work with young carers they are so so lovely their heart is in the right place and they are so passionate about helping children just try to have the childhood that they should have. And they went on activities, and they’ve been really involved. Each year they have the conference where they can meet other children as well and I think this is again about the community side we don’t want to be alone in life we are humans we are meant to be together that,

Katy: We are very social beings 

Debbie: Exactly and there’s some more than others, but this is where they then felt part of a really great community. They could talk about things you know that go on at home whether they wanted to or not they didn’t have to. But it’s just being with those other peers that know exactly what it’s like at home. And they do an amazing job, and I think if you are really struggling at home as a parent there is support out there for your children. So, just reach out to your local council or go through their schools they should know as well. That’s how I did it and my youngest now is vice chair. She’s really passionate about the charity and also, it’s how they tell their friends as well because they know that I can be ill, and I think they’ve seen sometimes when I am in a you know flaring quite badly. They kind of used to go in on themselves quite a bit used to be quite quiet okay and the friends picked up on that and it’s just like what’s going on tell me and actually it kind of made their friends quite close as well and they used to come home and say oh how’s your mum, how are you Mrs Wilson.

Katy: I worry about having a boy where the boys are the same because my you know interpretation is that men quite often don’t share these things, and they don’t ask each other if they’re okay. They’re just more like do you want to play football or do you want to go to the pub when they’re a bit older. Completely you know I’m completely stereotyping I mean my husband doesn’t really like the pub, but you know yeah online gaming is his bag but it’s that I don’t know what that might look like for my son. In terms of his friendship groups and that’s you know there’s so much isn’t there at the moment. I don’t know if you’ve watched adolescence.

Debbie: Yeah, that’s everywhere at the moment isn’t it. But I do think that I think society has changed that little bit I think invisible illnesses are talked about. Mental health is talked about more than it ever was and I think maybe if your son is acting just slightly differently I’m hoping that his friends might just go up and just you know ask is he okay because yeah you have to but if not just having that dialogue with you as well and just knowing that you’re okay can make him okay as well. It’s just having that open dialogue and but it really also depends on how close you are with your children.

Katy: Yeah I mean I am the favourite parent obviously it goes without saying come on although I do see the thing these she’s changing now he’s a little bit older I think boys start to gravitate to dad a bit more.

Debbie: I think if I don’t know whether it’s advice or information or whatever but my daughter’s boyfriend he is amazing he’s just taking it all on board.  

Katy: Yeah I think that’s lovely that you know she’s landed you know sounds like she’s landed with a you know a great guy.

Debbie: Whereas because you know I’ve mentioned before boys used to run away when I used to tell them what I got. But he’s just embraced it all and it’s just like fine you know. And I’m just hoping that that’s kind of what life in what society is like now there shouldn’t be any stigma about mental health invisibly especially autoimmune and inflammatory arthritis. You know if we could try and take that stigma about osteoarthritis and change it it’s not it is that inflammatory arthritis is that invisible illness that we have just this is what we are and this is who we are we can’t change it so just you know and be more kind I think yeah and I guess the day.

Katy: Yeah, I guess it kind of comes down to you know you were always ballot on that line kind of balancing between being open and honest but also not making your kids be too adult too early. So, it’s just you know you don’t want them to be full-time carers but also you want you want them to be kids but understanding what you’re going through and hopefully that will actually you know I think that will help you know develop a better empathetic future for everybody.

Debbie: Completely agree Katy and as with all these episodes we hope that there’s something that we’ve said that was resonated with you because we’re just giving it insight into our lives and how we live with inflammatory arthritis and also today on how it impacts on our children.

So, thank you so much for listening please do follow us on social media we’re on Bluesky Instagram Facebook and LinkedIn.

You can sign up to our newsletter at inflammatoryarthritis.org.

Please do donate if you really do like these podcasts we do need funds to continue and to grow the charity and our website is inflammatoryarthritis.org so until next week goodbye.  

Katy: Goodbye

In this powerful and heartfelt episode, hosts Debbie and Katie, both parents living with inflammatory arthritis (IA), share their experiences balancing parenthood with chronic illness. They discuss the challenges of raising children while managing IA, the importance of awareness, support networks, and resilience.

Firstly, they share their recent experience attending an event at the House of Parliament with the National Axial Spondylarthritis Society (NASS), advocating for faster diagnosis times. The event was a great success, and they were thrilled to receive recognition for their podcast and charity work. They also discussed their charity Board Awayday, how they are developing the charity to help improve the lives of anyone living with IA. Along with the importance of fundraising to continue their work. They share moving listener stories about how the podcast has helped them feel less alone and where you can donate, at our website Inflammatoryarthritis.org

The hosts go on to explore how their children knew about their inflammatory arthritis and has IA enabled them to be better parents? They discuss the use of age-appropriate language being key to help foster compassion and resilience, and Debbie shares the TikTok she watched from a rheumatologist explain the immune system like a sound system, and for auto-immune diseases the volume is turned up and the medications help to turn it down again.

The also explore balancing honesty with protecting childhood innocence, the role of young carers programs and support systems and how amongst all the hard times of IA this can create a kinder more empathic child.

Please do continue to:

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This episode is a must-listen for anyone navigating chronic illness, parenting, or wanting to support those living with IA. Tune in for insight, encouragement, and inspiration! 🎙️

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Disclaimer: 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.

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A Boutique Broadcast production for Inflammatory Arthritis UK