Episode 11 – WORD!

Episode 11 Word!

Introduction: Not only do I have IA, my daughter has juvenile idiopathic arthritis. How do you parent the child living with the condition? Inflammatory, with Debbie Wilson and Katy Pieris, navigating life with inflammatory arthritis.

Debbie: Hello, and welcome to Inflammatory with Debbie and Katy. Next week is our next Q&A session. It seems to have come around really quickly. So please do send us your Q’s so we can provide the A’s.

But please remember, we are not medical professionals, and we discuss from our lived experience only. So, head over to our website, inflammatoryarthritis.org to the contact us page, where you can send us your questions and even your voice notes so you can be heard on the episode. But this week, we’re going to be talking about parenting a child with juvenile idiopathic arthritis, a type of inflammatory arthritis, to coincide with Word Day, the World Young Rheumatic Diseases Day, to raise awareness of rheumatic diseases in children and young people. But before we get fully into the episode, Katy, lovely to see you. How are you? And have you sworn at any medical professionals this week?

Katy: No medical professionals have heard my potty mouth this week. Very good. My mum would be proud. I hope she didn’t listen last week.

Debbie: My mum did, and she was so glad it got bleeped.

Katy: But yes, really good week. Enjoying the weather today because it’s glorious sunshine where I am. Just a bit of the usual. Didn’t play any netball actually this week. I played a little bit of tennis. Son had some birthday parties and just those kind of, you know, general day-to-day things. Today, I’ve been to an imposter syndrome workshop, which was interesting. Apparently, imposter syndrome is, the lady that was doing the training actually thought it’s more about shame than imposter syndrome. So, men and women kind of express imposter syndrome slightly different. And a lot of it comes off the back of kind of an emotion. And I’ve never thought about shame. And I know we’ve talked about shame before as being an emotion. But I guess it is because it’s a feeling that you get in certain situations.

Debbie: Yeah. So, how would you define it then?

Katy: I don’t know. I don’t think I’ve really ever thought about it. I think I’ve just thought, and I think actually what I’ve been thinking shame was, was more maybe a bit of guilt. So, we watched a video by Brené Brown kind of explaining the difference between shame and guilt and how we can sometimes, I guess, we excuse ourselves for something, but it’s in a sort of as though it’s a kind of guilt thing when actually it’s more a shame thing and kind of beliefs that we have about ourselves rather than the belief that somebody else might have about us.

Debbie: And that’s really interesting because I think for me, I would say when I was younger, the imposter syndrome, I really did feel shame about having inflammatory arthritis. I never spoke about it. And then when my daughter was diagnosed, which we’re going to talk a lot more today about, is the guilt. So, I think there is two emotions definitely going on with me. So, yeah, but that’s really interesting.

Katy: Yeah, no, it was fascinating to be honest. So, yeah, that was my day to day. How’s your week been?

Debbie: It’s been an interesting week, put it that way. I think you’ll know that obviously before the recording last week, I dropped the microphone on my wrist. And even after the recording, it was like double the size of it. It was really, really sore. Everyone was telling me to go to A&E. I had meetings and I couldn’t. And I didn’t think it was fully broken. I think what I’ve just done was just dropped it on the tendon at the bottom of your thumb and your wrist. And it was just, yeah, it was really, really, even at the weekend, it was still really sore and painful. But I had an interesting appointment yesterday with my rheumatologist. Lots of things came up. One, and I think we’ve mentioned it a lot, I think inflammatory arthritis, I think if we ever did a word cloud, balance would be a big word. And that’s what we have to do in our life. Because I’ve mentioned that I have antibodies to my medication and bless her, she hadn’t actually received the letter from my previous eye hospital.

She hadn’t received that letter, even though it wasn’t even addressed to a hospital. It was just the road. And she then, after we discussed that this disease has antibodies, but my scleritis hasn’t flared for over a year now. And actually, is it worse changing medications when at the moment my inflammatory arthritis is generally doing okay, my eye hasn’t flared. Because if I came off this medication, I then wouldn’t be able to go back on it. So, it’s the risk of balancing. Do you come off it and try something new? And we don’t know how it will go. And the one that I’m on, we know generally works okay for my eyes. I flare once a year, isn’t too bad.

So, do we change and come off and try something new? Or do we just stay on until I create more antibodies? Because the blood test, again, it just showed it was positive. So, there wasn’t even a spectrum of how many, it was just like, yes or no. So, it was just like, okay, well, so we’re going to stay on them. And then I was showing her my hands and just generally, recently, I’ve had so much more fatigue and brain fog and just so much more pain. There’s actually one point I think I’d have gone to the GP to see if actually something else was going on. I never got around to it. So, my parents and my husband will shout at me for that. But then when I was speaking to her, she was just like, so do you have, how is fatigue with you? And I was like, oh, it’s just awful. What if you actually slept through the night? And I was like, well, that hasn’t happened for ages. Even if I did, I wouldn’t feel like I’ve had a great night’s sleep.

Katy: Okay.

Debbie: So, every single day, I am just shattered. And she’s like, what’s brain fog like? Do you have brain fog? And I was like, yes, I really do. I sometimes don’t even remember doing some of the stuff that we’ve spoken about on the podcast. It’s not until I listen back, oh yeah, we did discuss that. That’s quite good. And then she was like listing lots of other things as well. And then she goes, do you know what? You’ve got fibromyalgia.

And I was like, have you heard of fibromyalgia?

Katy: I’ve heard of it. Yeah. A girl I played tennis with as a child has fibromyalgia. So, I’ve kind of heard some of her symptoms before.

Debbie: Oh, okay. Well, then when I then left, I looked through the NHS website. NHS website’s got a lot of information about it. And I was going through all the symptoms and it’s like, I was saying yes to everything there. But then the appointment, she was like, well, what we can do is to give you stronger painkillers because obviously the painkillers that just normal paracetamol aren’t really working for me. And so, she’s given me some painkillers, strong painkillers that I need to take every night because they can make you kind of quite sleepy. So, hopefully it will help me kind of sleep through. But then that was kind of sort of it. So, I don’t know how long I’ve got to be on these medications for. I’ve got three months’ supply. And then I think it’s going back through the GP, not through the rheumatologist anymore with that. And then there is a community pain course, I think she was saying. So, I’m just going to wait for the letter to come through and see. But then I was thinking actually that might be useful to go on to learn more about pain and how we kind of deal with it and how we cope with it. And obviously anything useful we can discuss here. So, yes, that was my day yesterday really.

Katy: And what is fibromyalgia from your understanding?

Debbie: It’s basically from what I can gather is it’s a condition that gives you widespread pain along with fatigue and brain fog and lots of other kind of like irritable bowel syndrome is part of it.

Katy: I didn’t know that, yeah.

Debbie: And sleeping as well because I think also picking up from what we were discussing last week is actually what you define as inflammatory arthritis or age. Again, some of these symptoms I put down to thinking I’m mid-40s now. Is this kind of age or menopause? Am I starting a perimenopause sort of size? So, I didn’t realise where all these kind of symptoms fitted or anything. So, that’s kind of, yes, it’s more widespread pain.

Katy: Now, I’m really sorry to hear you had another diagnosis because that’s a lot to take on board, isn’t it? Kind of juggling all of that. And I guess what we’re here today to talk about is amongst your own diseases, you’re also, you have your daughter who has a JIA diagnosis. So, it’d be really good just to, I guess, start off with how are you managing kind of not only your own diseases but also helping your daughter through hers?

Debbie: Yeah. Well, I’ve been thinking a lot about this, and I’ve actually went through her medical folder that I have here, and I was like, oh my gosh, I forgot I did that. And yeah. But when she was diagnosed, I think probably what we want to discuss is everything that goes on behind the scenes really, not necessarily what goes on in the medical appointments. But then I was looking at when she was diagnosed, the amount of appointments, and I think you’ve picked up on this as well, the amount of appointments that you have because it’s great that there is a multidisciplinary team, especially generally for children in tertiary centres. It is fantastic. There shouldn’t be the postcode lottery that there is in kind of more adult services. Children should get that support that’s needed. But it does mean for adults and families that there is a huge amount of kind of admin burden on us because not only did she see the consultant and we had a local peadiatrician, she had a peadiatric rheumatologist, a nurse, a podiatrist, physio, occupational therapist. She had to go to ophthalmology to have a eyes check for uveitis, another underlying eye condition that children with JIA can have. So, they obviously need to monitor that.

And then they had, I think again, Katy, you’ll know that when you start on DMARDs, which are disease modifying anti-rheumatic drugs, you have to have blood monitoring. And so, she had fortnightly bloods. And I remember that the nurses came to our house to do them. So, I then had to kind of sort out my youngest daughter because my eldest did not want her sibling in the room when she was having blood tests.

Katy: I can understand that. Yes.

Debbie: And even to this day, she says, whenever I’m going to have a blood test, you need to be there. And I was like, what? To hold your hand. And she was like, yeah. But she doesn’t hold my hand. She’s, oh my gosh, she kills my hands.

Katy: That’s not good with your condition.

Debbie: It’s really not. But I was just like, okay, then she can get the blood out of her. That’s fine. I’ll take the pain for that. So, yeah. And then obviously blood monitoring kind of became less frequent and that the appointments did. But I can’t actually remember. I think I’ve properly blocked this out of my mind is actually how we dealt with all of that whilst dealing with the schools, whilst dealing with speaking to friends and family. Because it’s not just us that it impacts. There is this whole ripple effect. And for children, I think the ripple effect is even more. Because if they’re doing afterschool clubs or if they go to any sort of childcare or go to club brownies sort of thing and they go on a trip, there has to be so many risk assessments. And at some point I had to be the one who kind of, kind of like a mission impossible style to hide the drugs. So, no, she didn’t want to be seen as different at all. Having to know that she has to take some painkillers or some of her medication with her.

Actually, it was just trying to slyly do it so no one could see.

Katy: And remind me, how old was she when she was diagnosed? She was 11. So, just starting high school or just finishing?

Debbie: It was just before she went to high school. So, I had to speak to both schools, kind of her junior school where she was at. And they were, I must admit, they were absolutely brilliant. They knew that she had appointments coming up with this hospital. And she had, obviously, her symptoms were in, she had swelling and pain in her ankles and in her knees and in her wrists. So, it kind of impacted her to kind of do sports day, which she didn’t want to do, just fair enough. And then she was like, well, the school, well, she can just sit there. That’s like, she doesn’t want to sit there. So, she was sick, unfortunately, that day. So, yeah, so she spent the day with me.

But it’s just like, why would you want to put a child, she loves sports. She just absolutely loved it so much. And it broke her heart that she couldn’t do it. Because obviously, until she started any treatment to get that full diagnosis, that she wouldn’t be able to kind of fully get in. And we didn’t want any further damage to her joint. So, it was just, yeah, no.

Katy: And how was your health at the same time?

Debbie: I was awful. I’d only just changed medication. I remember one time we were at, generally after every hospital appointment, we were in London, which is a good thing or a bad thing. But I used to take them to Pizza Express, other pizzerias are available, or any other museums. It was always a trip out afterwards, something to look forward to, to kind of get it.

Katy: That’s nice.

Debbie: Otherwise, no one wants to go into hospital. It’s not the nicest environments. And as much as they make it for children, it is just sitting around in that. So, I just always used to give them a treat afterwards. And then when I was sitting in Pizza Express, I had my doctor phone me to say, oh, you’ve got to come off your medication because you’re neutropenic. And she’s basically saying, don’t get ill. And I was like, well, I’ve just been into a children’s hospital. Okay. So, yeah, but then it was just trying to keep a kind of masking, like not going, oh my gosh, I’ve got to go home and not try and get ill. But with my kids and just go, okay, that was just the doctor. Everything’s fine. So, don’t worry. We can still go to the museum afterwards. Everything’s fine. But then I did get a cold and I just couldn’t fight it off at all.

And it was just, I don’t actually know how I got through the days with it at all. I just think it was really tough. And I think if any parent has a diagnosis anyway, and then a child has a different diagnosis or the same, it can be really hard to deal with, but you just take a day at a time, just do what you can. And I think one tip I would be, would be to be organized because we had letters come through from her local hospital, which I’m under as well. So, there was two from one hospital, my eye hospital and her tertiary centre as well. And it was just trying to, yeah, this is why she has a massive medical folder, and I do as well.

You just have to be organized.

Katy: No, I’d be absolutely dreadful. I think we all know that.

Debbie: You wouldn’t. You’d do it for your kid. You’d have to. You do the admin for a school, don’t you?

Katy: I mean, check WhatsApp messages, forget to check parent mail. I’m sure there’s other parent mail providers. I just, yeah, hope someone will tell me. Anyway, let’s move on. We touched on guilt a little bit earlier.

Debbie: Did you feel guilty when your daughter was diagnosed with JIA? Massively. It was horrendous. There are times in your life, there are days you kind of like your wedding when you have your kids that you never forget. And when she was diagnosed, I will never forget that because I think I’ve mentioned it before growing up, I’d never want a child to go through what I went through with it at all. And I didn’t want to have children when I was younger for that reason. And it wasn’t until when I went to university, I kind of spoke to my rheumatologist then and I asked him, would you do children get JIA? If I’ve got it, do they get it? And he was like, no, no, your child would not get it. I was like, oh, okay.

So then because it was with my partner, who’s now my husband, he always wanted kids. He’s always been, and he’s a little bit older than me. So, it was just like, okay, maybe not now, but you know, they won’t get it if we have children. So that’s fine. And then, when my daughter was then diagnosed, that conversation was so vivid in my head. And how did your husband react? He was actually okay. I actually spoke to him about this because I think it came up in one of the pods the other week. And he said he was more worried about me than he was about our daughter, because he knew how badly I was taking it. And it was their guilt.

And it was just, because obviously I spoke to him years before about, you know, when he wanted children. And, you know, this is the reason I didn’t want children. But then, you know, in a way, in a weird way, even though I bumped into this consultant a couple of years ago and I went up to him and I said, you might not remember me, but you’re my consultant when I was at uni. And you said, because I did ask you, if I had children, would they ever get JIA? And you said, no. So in a way, I have you to thank for having my children. Obviously, he’s not the father, but just to clarify any situation going on there.

Katy: Can’t believe you went there.

Debbie: No, definitely not. And yeah, so it was kind of, yeah, in a way I have to thank you because if you gave me a different answer, I don’t know if I’d have my kids. So yes, it is that, yeah, it’s just strange what happens in life.

Katy: No, it is. And I think there’s, and there’s always a positive. So, I just wondered, from your experiences of kind of growing up with JIA, how have you utilised your experience to help your daughter?

Debbie: That’s a really good question. Because even yesterday after my diagnosis of fibromyalgia as well, my main straight concern was, oh my gosh, I don’t want her to get this either. Because my consultant said, you’ve got this because you’ve had inflammatory arthritis for so many years and that can trigger. And that was my main thought. I remember I was in the car with my husband, and I was just crying, thinking, oh my gosh, I don’t want her to get this as well. And she knew I had an appointment. So, then we went back home and I was sat on her bed and she goes, how was the appointment mum? And I was like, well, it was okay. And then, yeah, so I started crying and just thinking, she goes like, why are you crying mum? And I was like, because I have this other thing that causes widespread pain and other symptoms as well. And I don’t want you to have this. I really don’t want you to live like this. And she was like, mum, stop being so stupid. And I was like, so that kind of stopped straight away. And she’s like, even if I do, I do. But you’re the best role model that I have. You are so generally so positive on things that actually, why wouldn’t I want to be like you? And that really was just like, oh my gosh. And she’s 18 and it was just, yeah, that was just so heartwarming to just think actually, she’ll be okay, whatever.

Katy: She’s got you as a mum, so of course she will be. And just something I was thinking about was, do you think, I guess, you know, have you been able to parent her better with her JIA diagnosis because of your experiences? And just to follow on from that, there’ll be people who are parenting children with JIA who don’t have the experience of actually living with a disease that’s similar all the same. What can they learn from you?

Debbie: I think your first question, I think, yes, I have been able to parent her better because I understand exactly the pain that she’s going through, the pain, the frustration and the emotional impact. I have really seen the emotional impact on her having that long-term condition, but also on her sibling as well. I don’t want to forget the siblings in part of this as well, because every time I try to give my eldest more kind of support and everything, I know that my youngest needs it just as much as well. She hates seeing her sister go through all of this as well. And I think if anything, it’s brought us, we are so close as a family. My husband as well, he kind of works quite a lot, but us girls are so, so close. We talk about absolutely everything. And so, I think, again, a positive that’s come out of that is that we are very, very open. We talk about things like that. My daughter was actually flaring at the weekend, and we were trying, we had kind of family dinner and trying to persuade her that she needs to take her medication. And actually, her boyfriend and my youngest were actually telling her that actually you need to, we’re here for you and everything. So, it just makes you, I think, that unit slightly closer together. When my daughter had been diagnosed, I asked the consultants to talk to me like I haven’t got this disease. I know nothing because I didn’t want them to assume that I knew everything.

Katy: Because some of the ways change, don’t they?

Debbie: Completely. Because I think I was told, I don’t know what you were told at the time, but rest, if you’re flaring, you rest, that’s the best thing you can do. Actually, that’s the worst thing you can do. You need some kind of, some little movements, however small they are. I think obviously going back to our last episode from last week, that little 1%, if you can do that 1% from nothing, you’re still doing something. And actually, that is so much better for your joints and for your wellbeing as well. So, I think as a parent, if you don’t know this, just listen to your child. And even if you don’t have to say anything, don’t say, I understand. If you don’t, don’t give them that. I don’t know what the word is, but it’s kind of, you’re not being honest with them.

Katy: Because there’s the difference, isn’t there, between sympathy and empathy, and you can only have empathy if you completely understand the situation. The Brené Brown video, I love on this. So I think maybe we can link that or post it on social or something because that really brings to light that kind of difference. And a final thought from me, just listening to you, you make it sound so positive, kind of being able to build in your experience. Looking back, is there anything you would change if you could?

Debbie: Yes. I think I’d let my husband in a bit more because I was the one that always took my daughter to the appointments and kind of went through everything with her, went through the treatment plan and everything as well. But then it’s hard because obviously he knows that as I have it, I know what to do and everything. But I think it’s just for me also, just having that extra support and realising that I’m not a single mum. He’s there to kind of help support us as well. And I think for anyone as well, and other charities do do some amazing work as well. And it may not feel right at the time to kind of reach out and kind of talk to people, but actually that network, if you can increase the support network that really get what you’re going through. And again, this is why we’re doing this as well. It can really help you. Stories resonate and you’re like, oh my gosh, you’re not on your own going through this at all. And there is so much support out there for parents. And I think any parent of any child will always, again, it’s a balancing act for a parent as well. You do the right thing. You do the wrong thing. You don’t know. You just go with your gut feeling. And if it feels right at the time, do that. And as long as it could be that your child just needs a hug once in a while, just do that. And it’s just trying to create that positive connection between you all as well. And if other people want to come in, let them come in and be part of that really good support network.

Katy: It’s been really interesting, Debbie, to hear your story and how you’ve parented your daughter through a really, really difficult time, not only for yourself, but for your wider family. A key thing that I’ve taken away, I think, is parenting anyway is about finding your village. But in these sorts of situations, it’s finding that expertise village of people that understand what you’re going through. And I hope that for everybody listening today, whether you’re in a similar situation to Debbie, or you think you could be in a situation like this moving forward, that this has been really, really helpful for you. For me, I’ve learned a lot. And I really thank you, Debbie, for being so open and honest with us. Remind us what we’ve got to do. Thank you, Katy. Well, thank you everyone for listening.

Debbie: Please do leave a review and rating from wherever you get your podcast. You can sign up to our newsletter at inflammatoryarthritis.org and follow us on social media. We’re on LinkedIn, Instagram, Facebook and BlueSky.

And until next week for our Q&A session, it’s goodbye.

Katy: Goodbye..

In this heartfelt episode, in recognition of World Young Rheumatic Diseases Day, Katy interviews Debbie on the realities of parenting a child with juvenile idiopathic arthritis (a type of inflammatory arthritis), offering personal insights and reflections.

The conversation begins with personal updates, including Katy’s reflections on imposter syndrome and the differences between shame and guilt. Debbie shares her recent fibromyalgia diagnosis and the challenges of managing medications, fatigue, and brain fog.

As the discussion unfolds, Debbie speaks candidly about the reason she didn’t want to have children when she was younger, but how the conversation with her rheumatologist at university changed her mind. Then sharing the guilt and the emotional weight of her daughter’s JIA diagnosis, the overwhelming medical appointments, and the impact on family dynamics. She shares the strategies she has developed to stay organised, create a strong support system, and foster resilience within her family.

Despite the challenges, Debbie highlights the importance of open communication, honesty, and allowing others, especially her husband, to be more involved. The value of a support network that get what you are going through. The episode concludes with an uplifting message of hope, encouragement, and practical advice for other parents navigating similar experiences.

Key Takeaways:

• Managing a Parent’s & Child’s Health: Debbie opens up about her own struggles with IA and fibromyalgia while supporting her daughter’s JIA journey.
• The Power of Organisation: Keeping track of appointments, treatments, and paperwork is essential for managing a child’s chronic illness.
• The Emotional Impact of Diagnosis: Feelings of guilt and worry are common, but building a strong support network helps ease the burden.
• Resilience & Positivity: Open communication and embracing support from loved ones can make a difference in managing long-term conditions.

Resources & Links:

• NHS link for Fibromyalgia
• Link to Brene Brown Video
• Sign up for our newsletter at inflammatoryarthritis.org
• Follow us on social media: LinkedIn, Instagram, Facebook, and BlueSky
• Stay tuned for next week’s Q&A session—submit your questions now!

If you enjoyed this episode, please do follow the series. And please do leave us a rating or a review, if you have a few minutes to do so, thank you.

Thank you for listening!

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.

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

A Boutique Broadcast production for Inflammatory Arthritis UK