Episode 2 – The day we will never forget

Inflammatory! Episode 2 The day we will never forget

Debbie: None of us would forget the day we were diagnosed. 

Katy: The day none of us would have wanted to see. 

Voiceover: Inflammatory!, with Debbie Wilson and Katy Peiris. Navigating life with inflammatory arthritis. 

Debbie: Hello and welcome to episode two of Inflammatory! I’m Debbie.

Katy: And I’m Katy, and we made it through episode one! But what you don’t know is it took us about 26 recordings. 

Debbie: It really did. And thank you to all of those who have contacted us through our website, inflammatory arthritis .org A really big part of why we launched this series is to create a community around inflammatory arthritis, those who live with it and those whose loved ones live with it too. 

Katy: Last time, we touched on our individual diagnosis. And we promised you that today we would delve much deeper into that moment that no one with IA forgets. Debbie, take us back to when you were 7 or 8. 

Debbie: Yeah, that was a long time ago, and I had, it started in my left wrist. It was really, really swollen, and I mentioned in episode one that I love gymnastics. That’s how I kind of noticed the real bad pain, the swelling was just unbelievable, my hand was so swollen. I went to the GP quite a few times, ended up in A&E, I think, after a few classes of gymnastics just because I was probably in tears, and it was just so painful.

Had many x-rays, and the doctors never really knew what it was. I think I went to go see a sports therapist.

They did some weird stuff in my wrist. Because that was my love. I didn’t want to give up gymnastics then.

And it wasn’t… I know we’re saying people don’t forget. But I kind of sort of did, I think. I can’t really remember the time I actually had that official diagnosis.

But what I can remember is… My mum had a phone call, I think, from the GP to say that she’s probably got arthritis, come in and see us.  And so my mum told me. And so we went in and saw him, and it was quite weirdly underwhelming. I just remember being in pain, being swollen, and the doctor just going, well, yeah, this is your diagnosis, we’re very sure that this is what you’ve got. But there’s nothing we can do about it. Just take some painkillers and some anti-inflammatories. But that’s it. Deal with it.

And looking back, I don’t know how any doctor could say to a child, deal with it. Because with no support, Google wasn’t around at the time, so we couldn’t even go and actually find out more information about it. I think by this point it had gone into my right wrist, and my mum had pushed to see another doctor because obviously something was happening to other parts of my body, and then we ended up seeing a rheumatologist but she was in an adult setting but with an interest in children, but I was the only child ever to sit in that waiting room.

And kind of being told that children can get arthritis but sitting in a room full of, put it this way people of my age now and older. I’ve never felt so uncomfortable in my life. So that’s my memories of the initial diagnosis of it. What about you though? Because you were diagnosed later on in life. How did you feel with the diagnosis of that? 

Katy: So for me, the actual diagnosis was actually quite a relief, so I’ll take you back a bit. So I think I’d been suffering before diagnosis for about 12 to 18 months. So I think it started in my hands and my wrists, and they were quite painful. I really remember I went on a holiday to a friend’s wedding in Perth, and it was kind of March, so it was their end of summer going into their autumn, and I just had massive sausage fingers. It was quite disturbing because I didn’t really know anything was wrong at that point. I had a bit of morning stiffness, but I don’t think I had been to see a GP or anything about it at that time.

And then for the next sort of year, I kept on having problems getting dressed in the morning. I couldn’t make a cup of tea, and I’m from Yorkshire, I bloody love tea. 

Debbie: You’ve got to. It’s a law.

Katy: It is the law. And then I was commuting into London from where I lived, so all that was a bit of a palaver because getting ready was just frustrating. I’d just moved in with my boyfriend who’s luckily now my husband, he might not say he’s lucky.

Debbie: I think he would. 

Katy: And it was just a horrendous time because I had the classic stiffness in the morning, but I didn’t have the classic swelling that people talk so much about. I went to the GP probably about every six weeks or so. I was tested for vitamin D deficiency, they thought I’d got a trigger finger. I was still trying to kind of play sport, play netball, play tennis, and I was quite lucky because most of those sort of activities I would do in the evening, so a lot of my symptoms had kind of disappeared by that point. But equally, when I was going to visit a GP and trying to talk to them about the pain and the stiffness. I’ve  broken my foot, and that was the only body part that I’d broken. I was never really anyone that went to the GP for sickness or illness, so I found the hardest part for me was explaining what was happening, but also because it wasn’t happening at that point. 

I was in the doctor’s surgery. I couldn’t do it.

I had no idea what I was doing. I couldn’t explain it, and I’m still pretty bad at this, even to this day that I really struggle to talk about how I felt the day before or the week before because if it’s not like that at that point in time. 

Debbie: I get that. Because for me, I forget near enough straight away because your body doesn’t want you to remember what that bad time was. 

Katy: It’s a bit like childbirth, isn’t it? 

Debbie: Well, two C-sections. I’m not sure I still remember that quite vividly. But I did hear a thing, someone said pain has no memory. You generally don’t remember what pain you are in, and I suppose with our conditions, because it fluctuates so much that actually, when you then have a bad day, you’re like, oh God, I don’t forget that I’ve ever got it. But it just comes back and it just feels like it’s just kicking you again to say no, don’t forget. I’m still here. I haven’t gone. And it is that, but when you were saying, going back to your GP because when I was younger, and then when I went to see the rheumatologist. You have appointments, however many times a year. But generally, the week after, I would flare so I would then be in pain. I’d be like, oh, why didn’t this happen last week? I never seemed to flare when I was going to the doctor so they could just say, well, you’re fine. What’s wrong with you? 

Katy: But we also all have a bit of a classic thing. Of saying that we’re fine when we’re actually not. 

Debbie: Oh, yes. I think that’s just a thing. Probably with any diagnosis. 

Katy: Yeah. 

Debbie: I think also, my kind of thought as well. Is that we’re never taught how to speak to medical professionals. 

Katy: Yeah. 

Debbie: For when we’re younger, for children. We want to impress the teachers. We want to impress our parents. We want people to be proud of us. To say, yeah, you’re doing really well. So how do you then talk to a doctor? To say, actually, I’m not feeling great. And obviously then at the time for me. It was just like, well, go and deal with it. So I think obviously that probably suppressed my emotional side anyway. And it was really then how do you say how you feel? And can you be that honest with a doctor? And say, do you know what? I feel crap today. But if you don’t have any kind of signs of active arthritis. 

Katy: Yeah. 

Debbie: They’ll just say, well, that’s your emotional side.

Katy: I think they saw me as some silly little woman that wanted a bit of attention or something like that, so it took so many trips to the GP, and I think I ended up, I went and saw my old GP before I’d moved house and eventually she sent me for the right blood tests to get the sort of diagnosis. And then she saw, I don’t know which, which marker it is, and then she referred me to the rheumatologist, but it was really hard. 

And then because I’m a very well organized person, I went to the wrong hospital, just to add a little bit of stress.

Debbie: Oh no

Katy: I misread my letter, I went to the wrong hospital,

Debbie: Oh gosh

Katy: Luckily, they’re quite close together, and then I had to get a cab to the right hospital, so I was in a complete fluster to then be told you’ve got rheumatoid arthritis. Luckily, my sister came with me, so she came along, but she cried and then set me off, I was absolutely fine. 

Debbie: I suppose it is how it impacts other people, because one thing also about me is my daughter has juvenile idiopathic arthritis, JIA, and I will never, ever forget the day that she got diagnosed, I had both my children with very, very similar symptoms. Joint pain, swelling.

The consultant saw both of them and then she said, one of them has it, one of them doesn’t, and I was like, okay, well, which one? I assumed it was my youngest because she really kept complaining of her joint pain, but then it turns out she’s got hypomobility, so she’s just too flexible, her muscles can’t strengthen to protect the joints, but then my eldest has got it.

And then the next thing I know, it was completely heartbreaking because I’d never want a child to go through my childhood with it, so I was just trying to take it all in. My youngest was then crying because my daughter, my eldest, would have to go on the same medication I was just coming off of because I wasn’t reacting too well with it, and it was just like, oh my gosh, this is going to be our life, and how can I now be the strongest mum in order to make sure that my daughters can see that you can still live with this, you can still do everything that you want in your life. But it’s just kind of how you deal with it day to day, I hate the word saying manage it because you manage everything in your life anyway. Whether you have a cold, flu, you manage that.

It’s just how you really cope with it day to day and start being part of your life. It’s not a part of you, but it is a major part of your life that you just have to adapt to really deal with and to cope with. And it’s kind of passing that on to my daughter to say actually we can still do life and not let it really take over our life completely. 

Katy: That must have been awful for you, kind of seeing your daughter going through the same thing as yourself, and I remember my mum felt really guilty when I was diagnosed because she felt like it was the genes on her side of the family that were the kind of potential reason for me being diagnosed with rheumatoid arthritis. So, my grandmother had it on my mum’s side, my uncle has rheumatoid arthritis on my mum’s side, which nobody told me until maybe a month before I was diagnosed. But also, it might not just be my mum’s side of the family because my dad’s also has big red toe 

Debbie: Gout. 

Katy: Gout, I can never remember it for some reason. I always think of Henry VIII. 

Debbie: It’s very true. I didn’t know anyone in my family that had it at all, so it was a real big shock to us, and I suppose thinking about how did my mum react, I don’t really know. I suppose as I was then just told to get on with it, we did, she did come with me to my medical appointments as a child, but then all I was ever given was steroids, and steroids, teenagers, hormones.

Katy: Awful. Just sounds awful. 

Debbie: It was. It was horrendous. And I had many weeks of being unable to walk, unable to write, I had to learn to write with both hands, when my right hand was swollen, I had to use my left because my teachers didn’t believe me at all, even though I would show them how swollen my hands were. They were like, just carry on, and so I kind of did, but yeah, so I think my mum obviously tried to support as much as she could, but again, there was no internet, there wasn’t any support or information about it, so it was just kind of just, and we did just get on with it.

Katy: And what about your friends? How were they? 

Debbie: Yeah, it’s very hard I think as a child to kind of explain what it is. 

Katy: I find it hard as an adult. 

Debbie: Yeah, it is, my only hope now is that society has changed a little bit, and people do understand invisible illnesses and to try and get that across that this is kind of what it is. But the hardest thing is explaining that you have good days and bad days, it fluctuates, and actually how can I have played sports yesterday when today I can’t.

And the amount of times I’ve heard you’re faking it in school from teachers, my school life was horrendous, I won’t go into that much more detail. But also the friends, you know, I had a few really sort of close friends who kind of got it, but others were just like, well, yeah, you’re fine. I was on school trips, and one time, one teacher did kind of understand a little bit, and bless him, he was quite a sweet guy. We were on a French trip, sitting on a coach for hours.

And I then just couldn’t walk, I couldn’t get off the coach. My knees, my hips, it was so painful, and probably insurance-wise, they couldn’t leave me on the coach, so he was just like, I’ll give you a piggyback.

And I was just like, what? I was like, no, no, no, I don’t want any attention. No.

And everyone knew that this guy was probably a little at the time, put it this way, this is in the 90s, it was kind of a cross between Kevin Costner and Mel Gibson. So not bad on the eye, as some people would say, but not my taste.

Katy: I would have said yes. I would have said yes to that piggyback. 

Debbie: Yeah, I kind of sort of didn’t because, yeah, I wasn’t like that at all. And it was just like, so I did, I got a piggyback round, ended up at this cafe with him, having a drink. I can’t really remember what. But then everyone was like, oh, my gosh, you did that because you liked him, I was like, I didn’t. I’d rather that didn’t happen. I would rather have been involved with all my friends, having a good time, going around the hypermarkets in France because we don’t have we didn’t have them in the UK at the time, it was a whole new experience. I wanted to get so involved in it and I just couldn’t. 

Katy: Well, I guess every child just wants to be like their friends. So how open were you, Debbie? Was it a label or did you keep it a secret? 

Debbie: I generally kept it secret. The teachers knew, but my close friends did, but other than that, I never really spoke about it at all. And it seems really strange now that this is what I’m doing weekly, talking about my inflammatory arthritis because no one understood it at all, and I just thought, well, what’s the point of saying something? This is me take it or leave it sort of thing. How about you? What do you do? Have you always been open about it or have you tried to keep it a secret? Because it is tough, especially when you work as well. 

Katy: Yeah. So I was really lucky when I was going through my diagnosis. I had a manager who I absolutely loved, she was my manager, I’m still friends with her now. She came to my wedding and she was the first person that employed me in London, I mean, she might be questioning that. 

Debbie: I doubt it.

Katy: And she was lovely, so I was really open with what was going on, so because when you’re first diagnosed, and I think we’ll probably go into this another time, there’s so much sort of extra life admin that’s part of that. There’s so many appointments, so I told her what was going on, what the GP thought I had and then when I was diagnosed, she was brilliant in terms of allowing me to potentially work from home if needed, because we were just at that point, there was a bit more working from home. I think we’d all got laptops and things like that at that stage, so she was absolutely incredible.

But then when I have started in jobs since then, I haven’t always been open about it. It depends on, I think, how comfortable I feel with the people that I work with. But then in terms of friends, I, again, didn’t, so I was a bridesmaid, I think, either the summer of or the summer after I’d been diagnosed. And I mean, I’m very, very short, so I generally, I was like the girl always in like four or five inch heels because I didn’t want to be the short person in the room, but what I didn’t mention before is also my feet got quite badly affected. So I had to chuck out, my identity, I’d say, was wearing sort of high heels and tottering around London, which I would never, ever dream of doing today. 

Debbie: I couldn’t at all.

Katy: I’m completely in trainers or, you know, flat brogues at a push, so at my friend’s weddings, I was bridesmaid for both, and I didn’t say anything about the fact the shoes that they chose absolutely crippled me. And like we’re talking not just general high heel crippling, which most girls will understand, like literally could not move the next day because I was so stupid, and wasn’t open and honest because I didn’t want to ruin their look of what, you know, every girl kind of thinks about what their bridesmaids dresses are going to be, what the shoes that will match or you want your bridesmaids matching, which I’ll confirm I didn’t make my bridesmaids do. 

Debbie: I didn’t either. I was going to say, you know, I was trying to think what shoes my bridesmaids wore. I have no clue. 

Katy: I just told people to wear what they were comfortable in, but that was probably because of my own experience. 

Debbie: Yeah.

Katy: So I’ve always been a bit hit and miss, to be honest, but I think now I’m getting older, I’m kind of a lot more open, and I wear it as a bit of a badge of honour now. Look what I can do in spite of having this.

So and I hope, I guess as part of that is hoping that that inspires anybody that’s newly diagnosed that it’s nothing to be ashamed of, even though it makes you potentially not be able to do some of the things or maybe slightly change what you do. And as an example, I thought tennis had gone.

Debbie: I love tennis. 

Katy: And 13 years later, I’m back playing tennis.

Debbie: Wow.

Katy: So, it’s, you know, even if you think you’ve lost something, sometimes it can come back. 

Debbie: As we’re coming to the end of this episode, I’m just thinking, you know, and looking back on your story there, Katy, it’s absolutely fascinating. But going back to that time of diagnosis, is there anything that you would change or do differently now, knowing what you do now? 

Katy: So, a really good question. I think if I was going through that whole journey again, I’d be more confident about how I felt, and then talking to the medical teams about that. Also, at the point of diagnosis, what I would have loved somebody to have helped me with was, A, don’t tell me not to run, but we’ll talk about this later, but I didn’t listen. 

But secondly, I think talking about the impact on the emotional side and the mental health side, nobody ever mentioned anything about that and how this sort of diagnosis can really affect your day-to-day emotions.

And I think confidence, I think one of the things that isn’t spoken about anywhere that much is how having something that’s potentially debilitating can really knock your confidence. 

Debbie: Yeah, it really can, completely. Because obviously, I can’t really remember that much about my diagnosis, but the support, well, you heard my story. It wasn’t there at all, and it kind of was there more for when my daughter was diagnosed, which is great, but that’s pediatric rheumatology. It’s very different to adult rheumatology. We do need that support around us, and I suppose if we’re going to say to anyone who may be thinking they’ve got inflammatory arthritis, newly diagnosed on the start of your journey, or I suppose actually any part of your journey, what would you say to people and actually how would you live with it? 

Katy: So, I would say it’s going to be hard, however, with the sort of medications and the community that there is now in this space, so I think you can do as much as possible and it’s easy to find the tools to live as well as possible with it. So I hope this podcast can be some kind of reassurance in hearing your story, Debbie, and my story of how, yes, there are hard days, but equally we’re both really successful in what we do and we’re both living a really fulfilled life.

Debbie: It’s been really hard going back over our diagnosis. You know, it’s never easy to kind of go through that time of your life. I think it’s been absolutely fascinating, and next week we’re going to be talking about post-diagnosis actually, how we dealt with it or the appointments afterwards as well.  But we have a really busy lives as well. So, who knows what’s going to come up between now and then that we can discuss. If you have enjoyed this, please click on follow and please leave a review as this really helps to get the word out. 

Katy: And don’t forget to visit inflammatoryarthritis.org. Until next time, goodbye.

Debbie: Goodbye.

Title: The day we will never forget

In this second episode of Inflammatory! brought to you by Inflammatory Arthritis UK, Debbie and Katy cover the day they were diagnosed and the impact it had on them and their family. It also covers the day Debbie will never forget, the day her eldest daughter was diagnosed with juvenile idiopathic arthritis, the same type of inflammatory arthritis she has.  

They explore in more detail the actual day they were diagnosed, how Katy ended up at the wrong hospital, the symptoms they had and how they felt when they heard the diagnosis.

They speak openly about the emotional side of diagnosis, how it knocks your confidence and the impact their diagnosis had on their families. Katy’s mum felt guilty due to IA being evident in her side of the family and Debbie shares how her eldest daughter’s diagnosis impacted her youngest daughter.

They also cover how and why Debbie was piggy backed round France on a school trip by a teacher with most teachers not believing her diagnosis. Whether Katy and Debbie talked about their diagnosis or kept it a secret, how having a supportive employer is vital and they share how they learnt how to cope with it, adapt and not let it take over their life.

If you enjoy 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.

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