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What’s it like to be an Adult Living with Juvenile Idiopathic Arthritis? Rebecca Beesley’s Story
Patient Stories, Podcast

What’s it like to be an Adult Living with Juvenile Idiopathic Arthritis? Rebecca Beesley’s Story

8 months ago
75 min read
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Summary:

In Episode 120, Cheryl and Rebecca discuss what it’s like to live with juvenile idiopathic arthritis (JIA) as a child and as an adult. Rebecca explains how the diagnosis follows you to adulthood because it’s a different disease than adult rheumatoid arthritis. They also discuss the importance of advocacy, awareness, and hope.

Rebecca reflects on her experiences as a JIA patient and parent, stressing the significance of not accepting unnecessary pain for children with JIA and advocating for effective treatments and support. She also shares how she started a nonprofit organization to help meet the unmet needs of children and adults living with JIA.

Cheryl and Rebecca also share misconceptions and talk about the variability and fluctuations of symptoms, as well as reframing limitations and embracing flexibility. They explore the idea of living a “good life” with rheumatic diseases, acknowledging the challenges while emphasizing the possibility of thriving and pursuing one’s dreams despite the condition. 

Episode at a glance:

  • Advocacy and Awareness: Cheryl and Rebecca emphasize the importance of advocating for individuals with juvenile idiopathic arthritis (JIA) and raising awareness about the condition to combat misconceptions and promote understanding in various settings.
  • What happens when kids with JIA become adults? Rebecca clarifies common misconceptions such as that kids “outgrow” JIA. As an adult living with JIA, she explains how the diagnosis follows you to adulthood because it’s a different disease than adult rheumatoid arthritis. 
  • Education and Work Accommodations: Cheryl & Rebecca discuss the need for accommodations, highlighting the importance of communication with employers, teachers, and peers.
  • Thriving with JIA: The conversation delves into the idea of living a fulfilling life despite the challenges of rheumatic diseases, emphasizing the importance of reframing limitations, embracing flexibility, and celebrating achievements and everyday joys.
  • Coping tools: Cheryl and Rebecca discuss the challenges faced by individuals and families dealing with JIA, as well as strategies for navigating life with chronic illness, including seeking support, staying informed, and fostering a positive mindset.
  • Favorite mantras: “It’s never too late to be who you might have been”, and it “always seems impossible until it’s done”.

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Rebecca Beasley: Rebecca is from the UK and is an adult who has Juvenile Idiopathic Arthritis herself as well as having a daughter with JIA. She volunteers with UK charity Juvenile Arthritis Research supporting many families affected by the condition. Working closely with parents and schools, she brings insights into life with JIA, and through being part of Juvenile Arthritis Research has helped to develop many resources for patients, parents and schools.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Links to things mentioned in episode or additional listening

Full Episode Transcript:

Interview between Speaker 1 (Cheryl Crow) and Speaker 2 (Rebecca Beesley)

Episode 120

Cheryl:  00:00

All right, I’m so excited today to have Rebecca Beesley from Juvenile Arthritis Research all the way from the UK. Welcome!

Rebecca:  00:07

Thank you. I’m so glad to be here.

Cheryl:  00:10

Yeah, I’m so happy to have you. I wish we were in person, but Zoom is the next best. So, can you tell me real quick, where do you — well, I already give away where you live. And where do you live, and what is your relationship to arthritis?

Rebecca:  00:22

So, I live in the UK, and the part of the UK that I’m in is in Kent. So, it’s not too far from London. And I have my own condition is the fact that I’ve had juvenile idiopathic arthritis since the age of 10. And I also have a daughter with the condition and she’s had it since the age of two, and she’s now 11. And we also run a charity, myself and my husband, called Juvenile Arthritis Research, which I’m sure will we’ll talk about that later on.

Cheryl:  00:49

Oh, I didn’t know you went with your husband, too. That’s awesome. A family affair. Yeah. And so, I’m curious, you said you were diagnosed when you were 10. Can you share a little more about your diagnosis journey? Like, what were your first symptoms, and what was that like?

Rebecca:  01:06

So, I was a very, very sporty kid. So, I loved netball, and I loved hockey, long jump. And I first noticed I was getting pain in my hip. It was usually during sports. So, I remember a particular, the first time I remember very specifically, it was during a netball game. And after the netball, I could barely walk because my hip was just so sore. And it felt like almost like a twisting pain. I couldn’t describe it other than it felt like a twist, twisting sensation in my hip. And I just noticed it, it started to happen more and more frequently. Until eventually it got to the point that pain was so bad one day, I was sat down in assembly at school and I couldn’t get up off the floor. And I got rushed to hospital that day, I ended up staying in hospital. But the doctors at the time, couldn’t see anything obvious wrong. It was an orthopedic doctor. They did X-rays, and they said I didn’t see anything wrong. We think she’s putting it on and pretending that she’s in pain to get out of going to school. As a 10-year-old who loved school that was devastating to hear. And my mom, bless her, she kept going back to the doctors at various points and saying, you know, there’s something wrong with my child, I want to know what’s wrong. And I just don’t feel she was taken seriously. And so, it was a long, long road to diagnosis. It took about a year before I eventually got my official diagnosis and a couple of hospital stays. So, the second time was in hospital for over a month before I finally got that diagnosis. So, yeah, quite a long journey.

Cheryl:  02:39

Wow. And I mean, it’s no surprise they didn’t see anything on the X-ray. Because in case people don’t know, an X-ray only shows like typically really bad damage. It’s gone all the way to the bone. Like, nowadays, they do more, like, diagnostic ultrasound and other more sensitive measures. But I’m just I’m so sorry you went through that. There’s nothing worse than that feeling of being not believed, you know, by medical professionals and accusing you of wanting to get out of school when you had no history of that and you loved school. I’m so sorry. That’s just awful. Oh, at least I’m glad that your parents were such good advocates for you. So, you were in the hospital for a whole month before your diagnosis. Were they, were they trying to figure out if it was lupus or something else, or —?

Rebecca:  03:28

Exactly. Because back in those days as the case is still now a diagnosis of JA is by process of elimination. So, they had to rule out TB, they had to rule out all sorts of other conditions. And there was no specialism such as pediatric rheumatology. So, I did happen to see an adult rheumatologist at the time early on. And he kind of gave me a quick check over and said, “No, this isn’t arthritis.” And eventually having tested for everything else, they ended up concluding it was arthritis. I actually had to have an operation, like a hip biopsy where they cut into — I’ve got quite a long scar on my hip — where they had to test for other things, you know, take bone samples and tests for everything else as well. So, in many ways, things have improved that with pediatric rheumatology, now they can do a thorough examination of a child’s joints and be able to say, yes, this, you know, this is JIA, so that’s a really good thing that nowadays we have that. That didn’t happen back then.

Cheryl:  04:25

Yeah. And did you have the systemic symptoms like fever or fatigue, any of that?

Rebecca:  04:32

Not for me. No, for me, it was mainly my left hip that was affected. So, it was all arthritis, just in my left, left hip, mainly. 

Cheryl:  04:39

Okay. Wow. And what was your and your family’s response to the diagnosis? Were you like relieved or were you scared, or a mix of everything?

Rebecca:  04:49

I think this is where children are kind of more resilient than adults in many ways because as a child going through it, I don’t remember being particularly worried in the way that when my daughter started showing symptoms, there was a big worry. As a parent, I was thinking, I want to know what’s wrong with her. And all sorts of things go through your mind, because I think as an adult you are aware of so many more things, so many more conditions that something could be and that worry is just there. But for myself, as a child, I don’t remember being particularly worried about my future or what it could be. I just knew that something was wrong, and I kind of wanted it just to get better. And I always assumed it would get better. I did have moments where I did feel quite emotional. And one of those times that I remember very specifically was the day of the actual diagnosis. And the doctor that kind of delivered that news, it was told in such a flippant way that I felt he didn’t really understand that to a child to be told, you know, you’ve got this long-term condition. And I remember him saying, “Oh, she’s going to have quite severe symptoms for around at least two years.” And then, he just carried on talking. And to a child, two years is forever. And I don’t think he really appreciated that. So, that was the first time that I actually thought, oh, my goodness, two whole years before I’m going to see any kind of improvement. And that I felt quite emotional over that. Because I kind of assumed once they find out what’s wrong, they’ll make me better, and, you know, it will be okay. I also remember another time where I felt particularly emotional was after my long stay in hospital and going home, and seeing my bedroom for the first time in over a month. And I just remember, I looked at the ceiling, and compared to the hospital ceilings, it was such an old building, the hospital, big wards and really high ceilings and going home and just seeing my little low ceiling, I just burst out crying. And I couldn’t really explain why. But I think it was all that emotion, everything I’d been holding in from what I’d been through. It all just just came out that evening seeing my ceiling at home.

Cheryl:  06:48

Oh, my gosh. Yeah, I relate to so much of what you’re saying in terms of, I think most kids and people who have no, adults have no experience with chronic illness, if you have pain in one area of your body, you kind of assume it’s an injury, or maybe it’s, yeah, the bone isn’t growing correctly or something and they’ll be able to, the doctors will go fix it. And then, you find out that they’re not going to be able to fix it. And that it’s something you’re going to have the rest of your life. That’s a very daunting prospect. And I think your example of the doctor saying, you know, two more years, that that seems like so long as a 10-year-old. That makes sense. It’s 20% of your life, is two years, right? So, that’s really, that’s really tough. At the same time, like you’re saying, on the other hand, you’re just kind of like, okay, we’ll just deal with this, because you don’t really know, we don’t really have perspective as a kid. Do you mind sharing, before we — were we’re gonna get into more, like, understanding what happens when you grow up and you become an adult who has had juvenile idiopathic arthritis. There’s a lot of kind of misconceptions out there. But first, can you share a little bit about your treatments that you’ve tried over the years? Like, what’s helped and what’s currently going well with your treatments? 

Rebecca:  08:07

Yeah. So, in my situation, and I think a lot of people who hear this are quite shocked to hear it, I have never been on any DMARDs. So, no methotrexate, no biologics. And part of the reason for that is when I was first diagnosed, it was in the 1980’s. And those treatments weren’t available. And the only pain relief options I had with paracetamol and ibuprofen, which did nothing to actually modify the disease. So, my joint became very deformed and damaged very quickly. So, within that, I think, it was time they did give my diagnosis, it was showing on X-rays as being damaged, my hip joints. So, after going through that, and being several years on crutches, not being able to walk properly, I kind of got to the point where every time I was just going through my checkups, they’re saying there’s nothing more we can do for you. And so, I almost fell out of the medical system at the age of about probably about 15 because I was told there’s nothing more we can do. And I think we’ll go on to talk about this, about the, you know, the difference between JA and other types of types of arthritis. I suppose I never had reason to believe anything was different if I was to go back, so I then didn’t get to see a proper rheumatologist until a few years ago. So, I spent most of my life self-managing my condition with a very deformed, damaged hip joint. Yeah, so I think it’s so great that the medications are there nowadays. And the outlook for children is so much brighter than it was for me back then. And there are lessons I’ve learned through what I’ve been through that I don’t want other people to go through and part of that is understanding your own condition better so that you can advocate for yourself better. Because I think sometimes if I knew what I know now maybe a few decades ago, my whole disease course might have been different, you know, there might be things that that would have worked out better for me.

Cheryl:  10:09

Yeah, wow. That is, that totally makes sense when you say it like that, like that you, you were told there’s nothing more you could they could do for you. And if you don’t have regular checkups with a doctor, you don’t know that there’s been this gigantic shift in the 2000’s in rheumatic disease care and treatments. But I’m just, I’m sad thinking about you suffering for all those years. And I’m wondering, how did you manage pregnancy and stuff like that? Did you go into remission during pregnancy? 

Rebecca:  10:44

In many ways, it was kind of simpler not being on that kind of medication, because I know there’s so many considerations if someone’s on, you know, DMARDs, or biologics, they have to, you know, be in close discussion with a doctor before they try and have a baby. So, in a way, it took those worries out of the equation. But I do remember, I did speak to my doctor, as in my general family doctor, before we started a family. And the main thing I was concerned about was the mobility in my hip was very restricted. And I remember discussing with the midwife as well through pregnancy and saying, is this going to be a problem because I have such limited mobility in that hip? You know, that leg could barely move one way or another. And she said, “Oh, no, don’t worry. It’s not like on the telly.” She said, “It’s not legs up in stirrups, legs apart, you know. Labor’s very different from that. You can be in different positions; it won’t be an issue.” But I feel they didn’t really, like, no one examined my hip to actually check for themselves through my first pregnancy and labor. Sure enough, they said, right, now we just put your legs in stirrups. And I’m like, I can’t do that. So, it did become the issue. So, I ended up, I went through the whole of like, like labor until I was ready to give birth without any pain relief. And then, at the very last moment, they said, “Oh, we are going to need to give you a spinal now.” So, that was kind of a bit disappointing. I thought I wish I’d had the spinal sooner so that I didn’t have all the pain of labor. At least for me it would be better kind of sooner to have kind of made a plan for it, really. 

Cheryl:  12:19

Yeah, it’s one of my little pet peeves, but I understand it, that so often doctors are like, they’re trying to assuage your worries and fears and be like, “It’s gonna be okay.” It’s like to make you feel better in the moment, but it’s not helpful if it’s not actually going to be okay, long-term, you know what I mean? They’re like, “I don’t want to worry you,” you’re like, no, knowledge is power. Like, you know, I want to know. So, I’m sorry that, yeah, I mean, as an occupational therapist, I’m sitting here, like, oh, my gosh, you’re telling someone who has significant hip damage that’s pregnant that there’s going to be no problem? Like, giving birth, holy moly. And the problem is, you also don’t want us, you don’t want to necessarily cut off someone’s sensation completely. Because, I mean, I’m not an expert. This is not about childbirth. But when you cut off your sensation, when you cut off the sensation of pain through like a spinal, then if people are manipulating your body and you can’t feel the pain, you don’t get that signal that, oh, things are like in the wrong, you know, the ball was out of the socket in your hip joint or whatnot. So, anyway, sorry, I don’t mean to go down that rabbit hole. But I’m just, you know, I’m putting these puzzle pieces together. You’ve been, definitely you’ve been through a lot. And I want to hear more about your experience being a mom with juvenile idiopathic arthritis. But let’s talk about demystifying juvenile idiopathic arthritis. What happens if you as a child get diagnosed with JIA, and then become an adult? I think I used to think — I think what a lot of people are thinking — which is that, well, when you’re a kid, it’s a juvenile arthritis. And when you’re an adult, it’s adult arthritis. But actually, that’s not the case. So, help us understand what’s going on.

Rebecca:  14:09

Again, this is another thing that came as a surprise to me when I learned about it. So, having been out of the medical system for so long, I knew I’d been diagnosed with — it was actually called juvenile chronic arthritis back then. And I know it’s gone by other names. I know in the States, juvenile rheumatoid arthritis is one of the names it’s had previously, but it is in effect, its juvenile idiopathic arthritis is the condition I had, but by a slightly different name. And so, once I became an adult, I couldn’t understand that it would be called juvenile, because juvenile means young person. And so, I just assumed I had, you know, when I’d go to the doctor, and I’d say, “I’ve got arthritis,” they’d say, “Oh, rheumatoid arthritis,” and that’s what the kind of the general practitioners or GP’s would write on my notes, rheumatoid arthritis. And I didn’t know any better to correct them.

So, I thought well, that they’re the doctor, they know. So, it must be when you grow up, you have rheumatoid arthritis. And when you’re a child, you have juvenile arthritis. And it was only when my own daughter was diagnosed, and I remember discussing it with one of her doctors. And I was saying, “Well, I, you know, I’ve had arthritis since the age of 10.” And I can’t remember how, I must have said something like, you know, is, “I now have rheumatoid arthritis.” And they looked a bit puzzled. And I said, I’d never know quite how to explain my arthritis. And they said, “Well, you’re an adult with JIA,” and it was so obvious to them that that’s what it is, you know, a pediatric rheumatologist, they know that when you’re an adult, you’re an adult with JIA. But to me, that that came as a shock. And I thought to myself, I felt a little bit kind of cheated all my life. Like, I thought, why is no one told me this before? You know, surely somebody should have said, that your condition is called JIA throughout your whole lifetime.

So, yeah, that came as a little bit of a surprise and a shock. So, since then, that’s something that I’m very aware of when I see people say, you know, “I’ve had rheumatoid arthritis since the age of five,” I’m thinking to myself, no, if they were diagnosed, you know, before the age of 16, or not actually the diagnosing even, but the symptom onset before the age of 16, then it is juvenile idiopathic arthritis. So, I know sometimes teenagers, they may get diagnosed at age kind of 17, 18. But their symptoms have been there prior to the age of 16. So, you know that in that case, it is also juvenile idiopathic arthritis. So, basically, if your symptoms have been there before the age of 16, it’s JIA. And it doesn’t change. It doesn’t automatically become rheumatoid arthritis, osteo, or any other type of arthritis, it remains called juvenile idiopathic arthritis throughout your life. And hopefully in many cases, people do go into remission either through medication or spontaneous unmedicated remission. And that’s what we always hoped for, but that diagnosis is for life and how it’s named. 

Cheryl:  16:52

Yeah. And that was, that’s really helpful for me to review because, yeah, I know for sure I was diagnosed at 21. And my symptoms started at 19. And they said, you know, you have adult rheumatoid arthritis. There are kids that have, you know, a similar condition but because I think that they evaluated whether I might have had JIA because I had so many things that I thought were injuries as, you know, soccer, I was a soccer player, very sporty, like your football player as they call it in the UK. But the other thing I want to talk about is a lot of people don’t know is that juvenile idiopathic arthritis and rheumatoid arthritis are different diseases with different prognoses. If you have a Venn diagram, of course, you’re going to overlap on the fact of, you know, joint inflammation caused by your immune system, similar to like psoriatic arthritis joint pain, or, you know, ankylosing spondylitis. But JIA, what are some of the other — sorry, I didn’t prepare you for this, but I’m guessing, you know, off the top of your head, what are some of the other things that different that are different for JIA, in terms of either the long-term prognosis, or the medications, and stuff like that, versus RA?

Rebecca:  18:04

So, JIA itself, as you will know, is not one condition that is made up of several subtypes, which are different conditions. One of those subtypes is more similar to rheumatoid arthritis, which again, doesn’t help with the whole confusion, confusion thing. And many of the medications are either similar or the same, and many of the challenges we face. So, when I watch your videos on Instagram, and all the tips and things, you know, all the advice you give, I think, yeah, a lot of that is relevant, you know, to me, and for those with JIA. So, a lot of the challenges we face is similar, you know, people get, you know, the fatigue does affect children with JIA and fatigue those with RA. A lot of the symptoms, like you said, the joint pain and stiffness, and, you know, morning stiffness, and that kind of thing, that there are many, many similarities. And I’m not — I just want to start by saying, I’m not a medical expert, I’m, you know, I’m not a doctor.

So, in terms of the actual detail of the conditions, I do not personally know enough about which medications, you know, how the medications things would vary. I don’t have the answers to those myself, but I do know it is really, really important to get that labelling right and to get that naming right, because one of the questions that as a parent I have and I hear other parents have all the time is they want to know, you know, how are things going to be in the long run for my child? And the truth is that the answers to that are not known. And one of the reasons for that is because of this mislabeling that’s happened. And so, the research it’s that’s like when the researchers look at the doctor’s records and the GP’s records, because they cannot see for sure which adults would have had JIA because it’s then been renamed in the records as RA, it makes it a lot harder for work for when they’re carrying out that those research projects. There is work being done as we speak to try and look at the long-term outcomes and long-term prognosis, but to date, that has been something very, very hard to establish because of this kind of mislabeling and, you know, people not understanding themselves and what their condition is in the longer term.

Cheryl:  20:05

Yeah, and this, this is maybe a little bit old, but I remember reading on the Arthritis Foundation website that it that the rates of remission for juvenile idiopathic arthritis are thought to be higher than adult rheumatoid arthritis. But maybe you just pointed out that maybe that’s not based on actual — maybe they look artificially lower because those people are now who grow up are not considering themselves to have JIA anymore. Maybe.

Rebecca:  20:36

I think, and again, I would have I’d have to check those very specifically. But I think the readmission rates for JA are around 50%. And I think that’s something that’s not been changed since I was a child. So, since 30 years ago, the remission rates were largely the same. And I think you’re right in what you say because with —

Cheryl:  20:57

It’s definitely a lower, rheumatoid arthritis. 

Rebecca:  21:00

Particularly for kind of rheumatoid factor positive, often, it is. That’s a harder one to get under control and to get into remission, from what I understand, but you probably know more about this. 

Cheryl:  21:10

Yeah. I’m just looking at the Arthritis Foundation website as we’re talking. I always have, like, have 12 tabs open in my brain. But, yeah, it’s looks like it’s 10% to 30% of people go into remission from RA who were not treated or who are not initially — okay, how do I say this word. I’m trying to say this exactly how they said it. For people who don’t begin treatment within two years at first symptoms or who don’t start biologics early, remission will range from 10% to 33%. And that’s talking about medicated remission. So, I think, and so, anyway, we can we can get those statistics, I can put them in the show notes. But like you’re saying, you know, it’s almost we have to remind ourselves when we look at these statistics that they’re not necessarily perfectly representative because of this issue with it used to being in the US it was mentioned juvenile idiopathic arthritis, it was called juvenile rheumatoid arthritis. And also, there’s, you know, this, I’m glad you reminded me. This is, I always think when I’m saying JIA, I’m thinking about the systemic JIA or the polyarticular, the one that’s more similar to rheumatoid arthritis, adult rheumatoid arthritis. But there are other kinds that are, you know, only one joint affected and not a systemic. So, there’s a lot as we’re, as we’re uncovering here. A lot of —

Rebecca:  22:39

Yeah, of what you said about that kind of window of opportunity, we know that is true for JIA as well, which is why the prompt diagnosis from treatment is so important, because that window of opportunity does improve the chances of, you know, long-term outcomes being improved as well. So, that is, you know, still very relevant and very important as well. 

Cheryl:  22:56

Yeah, and the reason I jumped to that statistic of 10% to 33% because it’s the people who weren’t treated within the first few years with symptoms, as we know that most people don’t get diagnosed till like four or five years after their first symptoms, because they’re being thrown around like you are, you know, being told you’re not sick, you’re just anxious, or you’re just trying to get out of things. And that happens, unfortunately, to adults, just like it does to kids, which is such a shame. But, you know, speaking of all these, we both of us have noticed lots of problems in the medical system and in general awareness of different kinds of arthritis. But I know that you’re doing stuff to help solve some of these problems through the Juvenile Arthritis Research charity. So, can you share a little bit more about that, and what you do, and what are the things you’re excited about for like 2024 coming up, which is currently now actually.

Rebecca:  23:50

So, we founded the charity six years ago now. And it was my husband who decided to go back to his roots in biomedical research, having had, you know, myself as his wife who’d grown up and he’d seen how it’s impacted my life, and then to have a daughter with the condition, and to see how little things had changed in terms of awareness. And in terms of, obviously, the medication side of things has vastly improved, but there was very little in the way of supporting families and supporting children through this.

So, he decided that wasn’t good enough, and someone has to do something. And he thought, well, why not me, you know, instead of moaning about it, well, you know, let’s make a difference. So, he founded the charity and the ultimate vision is we want to see a world where no child has to suffer from arthritis. So, ultimately, there will be a cure of some kind, whether that is in terms of prevention or finding a permanent solution to make sure every child reaches permanent remission. We don’t know what that will look like, but that is what we’re pushing for with, you know, the research we’re involved in. And we have three kind of core aims that most of our work falls into

. So, it either falls into awareness research or the support side of things. And we do so much in six short years, we actually do so much thanks to the volunteers within the charity, we’ve grown to a network of around 25 volunteers now, and to support families. It’s just been amazing, you know, to see how needed it was. And that’s why we’ve just grown and grown because, you know, the need was there.

And in terms of research, we’re very excited that towards the end of last year, we launched a new project in the UK, which was called the JIA VIP Research Panel. And that’s where families can sign up to say, yes, I’m interested in taking part in research, I’m interested in finding out more about research opportunities. And we can then link them up when there are projects with universities and hospitals or pharmaceuticals, and anyone that’s looking for families affected by JIA to take part in research. And we’ve got this pool of people who are already interested and they’re willing to, you know, be part of research. So, that’s a really exciting thing we’ve launched last year, and that’s continuing to build. And we’ve got new projects coming up all the time for that panel of people who want to kind of be involved.

Cheryl:  26:05

Really quick question, are these for people just in the United Kingdom? Or is it worldwide for research?

Rebecca:  26:10

At the moment, our research panel is in the UK. We have had people from various other countries saying, “Hey, can you help us to do this, you know, in our country,” and I don’t see any reason why it wouldn’t be able to be rolled out. At the moment, it’s more of a capacity issue, because we are a very small charity. And as I said, we’re run by volunteers. So, it’s all kind of fitting it in in addition to everything else we have going on in our lives. But there’s no reason in the future why that’s not something that could be rolled out to make it available more widely, but at the moment that is UK only. In terms of our support services and support information, again, the physical resources that we send out, so when their child is diagnosed with JIA, they will hear about us either through their hospital or if they go online and search for information.

We have these, what we call Little Box of Hope packs that we send out to them. That was an idea by a lovely young volunteer of ours called Abby. And when she was seven years old, she said to her mom, “I don’t like the idea of children being diagnosed JIA and not having anyone to turn to, so we need to do something.” So, she came up with this idea of sending them a little pack with all the information and everything in there that they need. So, for the younger children that includes storybook called Kipo. And we send a little Kipo finger puppet which brings the story to life and get some other information. So, we have a booklet called ‘My JIA’, which is kind of a guide to living with JIA. It’s got information for schools in there and what to expect when you get diagnosis. And you know, lots, this is just packed with information. So, it’s a really good booklet.

And we have various other bits of information that go in there. And Abby, still to this day, she handwrites a little note for every child who receives one of those. So, it really kind of encourages them, it gives them hope to think, you know, there’s someone out there that cares about me. And we found quite soon that actually, for the children who were slightly older, kind of over the age of 10, they were finding like the Kipo story book a bit young for them. So, another young lad called Ned, he wrote a story for teenagers. So, he loved the Wimpy Kid books, A Diary of a Wimpy Kid. He wrote it in that kind of style. And that’s been published. And that’s included in packs for kind of older children.

So, if you’re aged 10 and over in the UK, you receive one of these, what we call teen support packs. There’s no age limits. So, I know people as adults who’ve requested one or they go, “Wow, this, you know, this story reflects, you know, my experience,” and they really relate to it as well. So, yeah, that’s been really brilliant that we can do that. And we do, we often get inquiries from elsewhere in the world and they say, “Please, can you send me a pack,” and we can’t unfortunately, send it outside of the UK because of various, you know, charity regulations in the UK. But we do try and make all of that information available on our website as well, so all of our booklets and publications, by going to the website jarproject.org, you can find all that information to download as well and lots of other resources on there as well.

Cheryl:  29:08

That’s amazing. I think the Arthritis Foundation in the United States does something similar with a teddy bear and a little backpack and, yeah, it definitely strikes me what you said about, you know, adults want this stuff, too. Like, we all — I know there’s so many in the US there’s so many regulations around like what you can even, what you can put on the wall at a rheumatologist office, right, like a flyer or anything much less, giving people these packets. But we all want that human touch, you know, we all feel alone sometimes in having these you know health challenges. So, having something come to you like a physical thing in the mail, you know, that tells you that someone cares about you and someone wants to give you a Little Box of Hope. I think that’s really incredible.

And yeah, I mean, I just started Arthritis Life a few years ago, but I’m really in awe of people who are able to like, you know, scale and manage volunteers and manage lots of people because that’s one thing I’ve been trying very in a small way to do and it’s really hard. Like, I’ve worked for small organizations before or grassroots as we call them in the US, I don’t know if you call him that in the UK, too. But it takes a lot of it takes a lot of work. So, I am commending you, like giving you arthritis friendly claps here. 


Rebecca:  30:30

Thank you.

Cheryl:  30:32

I hope you guys, you and your husband and family take time to, you know, revel in what you’ve created. Because sometimes I know when you’re so passionate about what you’re doing, it’s like you just want to keep doing it. Like, how — actually okay, this is off the top my head, how do you have a balance in your life? Because if your work is so important to you, but you also need to rest sometimes, too.

Rebecca:  30:52

So, I’m so grateful to our volunteers, because as more volunteers have come on board, they have helped so much with everything we do. So, I’m so grateful to them. Because before we got to that stage, it was mainly myself, my husband and Sam and Abby, who sends out the packs with young children, it’s mainly us three doing everything. So, as we’ve grown and more volunteers have come on board, we’ve been able to share some of the workload. So, as well as the support we give to families, we also have things like school packs, so we have a volunteer who sends our packs to schools with specific information for them. And we have another volunteer that does the packs for the teenagers that she sends them out.

So, all of these people coming on board has just really, really helped us a lot. And sometimes I don’t think they realize just how big a help they are to us. So, I just want to publicly say thank you to our volunteers, because they are amazing. And they all have conditions of their own. Either they have a child of JIA, or they have arthritis themselves. So, actually, it’s a big deal that they’re giving up their time to help us and we’re just so, so grateful for that. In terms of getting the balance right, I don’t feel I’m there yet. And I don’t know if I ever will be. Because I think I’m one of those people that I kind of throw myself into everything like fully, wholeheartedly, passionately into everything. Yeah. And so, I do find it really, really hard to take that kind of time out and take a step back from things. And we will often be sending emails, you know, almost at midnight, we’ll be there still getting things done, because we kind of have to. Because we think there’s no one else actually doing this out there. So, if we don’t do it, who’s gonna do it? So, we just keep going.

And when we get — we don’t expect thanks from people. But when we get those messages of thanks from parents that have said, “I didn’t know who to turn to, thank you for being there.” And even over the Christmas break, I kind of look after the social media. So, we had a lot of direct messages coming in where everything else is closed, they can’t get ahold of their hospital teams. Any other kind of helplines out there, they close down over the Christmas break. And people are messaging us saying, “I’m really worried,” or, “I’m really stuck on this,” and we can’t give medical advice. But we can be that listening ear. We can say, you know, just help them along the way or signpost them to information that we have online or you know, just help them how we can. And I just think, you know, that makes it all worthwhile knowing that you’ve been there to help someone at the time they most needed it. And I know, when I was younger, if I’d had someone to turn to, I think it just, it would have just made things so much easier. So, we want to be there in that gap where there wasn’t support before to help families. 

Cheryl:  33:19

Yeah, that’s incredible. And I relate to with that. I was laughing to myself, as you were talking about working over the weekend, because it’s Monday when we’re recording this and you and I both e-mailed a couple times this weekend. And so, yeah, I think you’re right that there’s never this elusive, perfect sense of balance. But I think what I’m seeing from your story is that you’ve delegated stuff to volunteers, which is my big skill I’m working on in 2024, because I’m kind of a control freak. So, I’m like, I need help. But then, it’s like when it’s time for me to delegate, I’m like, I have to do it all. You’re like, wait, no, you need to delegate, it’s gonna be okay. And that, yeah, that you, you know, I think when you are so passionate about something, it sometimes it’s so corny to say but it’s like it’s not work when it’s like your passion, you know, but you still do as someone with a chronic health condition, we do have to remember to rest and not burn the candle at both ends, you know, as they say. But one thing that is different about your story than mine is that you have a child with juvenile idiopathic arthritis. My son, it’s definitely something I keep my eyes out for. He, to my knowledge doesn’t have any autoimmune condition. I did take one, side note, into the doctor just so people don’t feel silly who have done this. I took them to the doctor when he was like two because he was limping. And I was like, okay, you know, this is it, he’s getting JIA. And they’re like, “He has a splinter.” And they took a splinter out. And I was like, oh, thank you. But they were like, we’re still glad you came because most people wouldn’t know that that could be a sign that JIA or could be a sign of, yeah, who knows? But it was just so funny. They’re like, yes, he has a splinter.

Rebecca:  34:59

It’s always best to get things checked out, I always say to parents, if you’re ever worried, get it checked out, because it’s worse to just keep worrying or to not know, you know, and it is that early diagnosis is so important that it is better to just go and have your mind put rest or just know what’s going on. 

Cheryl:  35:15

That’s true. That’s true. So, I’m curious at whatever you want to share about your experience, you know, with your daughter at the age of two developing JIA, what’s that been like as a mom supporting her through this?

Rebecca:  35:31

Yes. So, she, yeah, she started with what we thought was an injury, which is quite a common way that, you know, children often get misdiagnosed, as you know, being told it’s a sports injury, or that they’ve injured themselves, without it being considered to be JIA. So, if she had an injury to her ankle, and it kind of swelled up. And we took her a few times to our doctor and said, you know, this isn’t getting better. But they couldn’t see anything obvious wrong, they X-rayed it a few times, and got sent home. And in my mind, it didn’t even occur to me at that point that it could be JIA because my initial symptoms in the hip, there was no swelling, because there’s nowhere really for the swelling to go. So, I didn’t put two and two together. So, I didn’t think it could, you know, it didn’t even occur to me that it could be JIA. And it was only more as time went on. And they put her foot in a plaster cast. And when the plaster came off, she then couldn’t walk at all because it’d been immobilized for so long, which we now know that’s kind of a really not a good thing to do with, you know, with arthritis. And I kind of feel we were lucky in the sense that when the orthopedic consultant wasn’t really getting anywhere, he called in very informally, he had a very good relationship with the pediatrician. And he called her into the appointment that day and said, “You know, can you, do you know what’s going on here because I can’t find anything wrong?” And she had seen JIA before, so she was familiar and knew that this could be JIA. So, she made the referral to Great Ormond Street Hospital, which are our pediatric rheumatology services and our closest one. And from then on, she you know, she got quickly diagnosed, started methotrexate quickly, and she’s had a very successful outcome. So, her kind of life has been very different to what mine was. So, she was seeing, once the medication kicked in, she was soon able to go back to her sports and walking and running and playing and all the things she loves doing. And I remember initially, I did feel a kind of guilt once we knew what she had, because I thought, oh, my goodness, is it because I’ve got JIA that she’s got JIA, because, you know, there are these links, as in, you know, of autoimmune conditions that there is that kind of hereditary link, even though the full genetics of it isn’t understood yet. And even though logically, I kept telling myself, well, guilt is not going to help either her or me. And I knew that, but I couldn’t help feeling that way to start with. I felt relief that we once we found out what was wrong, because even though her diagnosis was relatively quick in that period of waiting, you’re still thinking, you know, what is this, what could be wrong, and all those worries are going through your mind. But then, once we did know what it was, I kind of felt, okay, so if she’s got JIA and I had JIA, and I’ve had, you know, I’ve managed to live with it, and I’ve been okay, she’ll be okay. And it kind of gave me that hope to know she’d be okay. And of course with the medications as well, as we know about how good and effective they are, it kind of gave us even more hope to say actually, life’s going to be very different from mine. She’s hopefully not going to get that long-term joint damage and everything else I had. With her, again, it was different to mine. So, she was affected in multiple joints with polyarticular JIA, so she had her left ankle, her right knee, her fingers, her jaw affected. So, she had about, you know, various joints affected, but she’s doing really well at the moment. And, you know, we can’t wish for more relief from that point of view. 

Cheryl:  38:51

Yeah, and I’m sorry to just fixate on this, but you just mentioned jaw, which made me want to say that’s another differentiator between JIA and RA because our RA rarely affects the jaw. It can but not nearly as high of a rate as jaw inflammation seen in JIA. So, that’s just another thing to throw out there. So, if you’re an adult who had a history of, you know, who has a diagnosis of juvenile idiopathic arthritis, that’s something you want to keep looking out for. You’re not suddenly not prone to that because you have, because you’re an adult. But yeah, that’s I mean, it really is a testament to the way that the treatments have changed over the last few decades that she’s you know, doing so well despite having, I mean, having more joints involved typically would give you a worse prognosis. But then, then, then you with only, quote unquote, ‘only one joint’ although it was involved very heavily. But yeah, that’s hopeful. I’m hoping crosses fingers gently that she you know continues to do well on methotrexate. I’m in the methotrexate club with her. And has it been, has anything I’d have been challenging with her or any tips to share from about the school environment? Are there any tips you give other parents? So, that’s one of the FAQs I get when I volunteer with my local Arthritis Foundation summer camps, the juvenile arthritis summer family camps. And sometimes parents asked, you know, like, “How do I get her teachers to understand?” It sounds like maybe your daughter doesn’t need accommodations right now. But have you had to explain it to her teachers at all that she might need an accommodation or she might be sore some days? 

Rebecca:  40:32

Yeah, so she’s in the UK, she has been at primary school up until last September, and then she’s changed to a secondary school. And for us, it was really, really important to find the right secondary school for her where they would understand. We were very fortunate that her primary school were very, very flexible. So, where she has experienced fatigue, she’d be allowed to do half a day and they’d let her come home. But obviously, as she got older, it’s more important that she stays in, you know, in her classes and doesn’t miss that lesson. So, yeah, we have had to put things in place to help her. And I just feel we have been fortunate in the schools she has been at and the teachers she’s had that they have been very understanding. I think it does help if your medical team, if they’re willing to support parents, where schools aren’t understanding so much. So, that’s one of the things we’ve developed on our website, we actually have a letter template that we worked with some rheumatologists to develop. And that can be downloaded and kind of amended to make it relevant to each child and then sent from the hospital. So, the hospital can print it on their head of paper and send it to a school or give it to the parent to give to school. And that just seems to carry more weight than a parent just saying, you know, “This is what’s wrong with my child,” because I think with JIA, it is largely in many cases an invisible condition now because the medication is so effective, because people can’t obviously see there’s something wrong, it does make it harder to understand. So, that letter is one of the things that really, really does help. And even with our amazing understanding school that we had, when they got a letter from the doctor, it kind of made it, it was like their eyes were open to, oh, we didn’t realize she goes through all of this. It’s getting them to understand that the child they see in front of them to kind of have that normal life or as normal a life as possible, they actually go through a lot, you know, they have those weekly injections, they have blood tests every few weeks, they have X-rays, MRIs, and their life is full of hospital appointments. So, actually, although the outcome is is quite good in the sense that they can go and join in with activities and things, there’s a lot that goes into that behind the scenes. And I think it’s just getting the school to really understand that. And once they do, I think they’re a lot more accommodating and understanding of what that child needs. 


And I think the biggest tip I would give to parents in schools is planning for the worst. So, plan for the worst days; plan for those bad days. So, at my daughter’s school, when we were looking around for which school she would go to, I was checking for wheelchair access, because I knew that if things get worse, she will be back in that wheelchair, if she flares and it’ll take a while to get it under control. You know, so checking for wheelchair access, making sure they’ve got lifts, making sure they understand how variable her condition can be day to day. So, whilst on the whole the treatments working, there are still some days that she may be in pain or really fatigued and struggling to join in with all her lessons. So, they’ve given her a kind of timeout card where she can go to like student services. And if she needs a break from lessons, she has that flexibility to leave the lesson and go and sit there and just have a rest. So, yeah, they’ve been brilliant in doing every little thing we could ask for and I think things like, again, again on JAR Project website, there is a school fact sheet and that’s got some tips that any school could put in place. It’s things like having access to a locker, maybe being given a second set of textbooks, so it’s not too heavy to carry around from home to school, leave one set at school, have one set at home, although nowadays a lot of the learning is electronic so it’s probably a bit less of an issue. Being aware of things that perhaps you wouldn’t immediately think of. So, children on methotrexate and some other medications may be more prone to sunburn so they may need help with buying sun lotion in the middle of the day at school in the summer months, and those kinds of things. And wearing supportive shoes as well is the other thing. The number of times I hear from parents, “Oh, my child is being told they have to wear like proper school shoes,” because it’s not school uniform to wear like trainers or sneakers.

Cheryl:  44:32

Right. We don’t have uniforms here unless it’s a private school. So, yeah, yeah, I forgot about that. 

Rebecca:  44:37

Yeah. I hear it’s often, you know, school shoes are black school shoes and particularly for the girls they’re not very supportive, you know, generally the school shoes you get. So, you know, Trinity, my daughter she’s always been allowed to wear trainers to school because they’re more supportive and it’s what her therapists recommended, so she’s allowed to wear those and school’s been great about that. So, something quite simple, really. and makes a big difference to that child.

Cheryl:  45:03

Oh, absolutely. And I think it’s such a, what’s the word, it’s the same principle applies to accommodations in the workplace as well, or looking at different places to work when you’re an adult to say like, okay, how accommodating could this workplace possibly be? I mean, there’s all sorts of laws and stuff in the United States that govern whether or not the, you know, you’re going to be given reasonable accommodations. But like you’re saying, thinking about the principle of planning for your worst day and explaining the variability, the fluctuations, to your potential employer or your teacher, or your college professor, those are such crucial things. So, I think I even, I’ve mentioned this before on the podcast, but in case you’re like a new listener, I’ve been really disappointed at times when I used to work as a school based occupational therapist, I overheard, you know, a case where someone was like, “Well, this kid has juvenile arthritis, and they’re supposed to have accommodations to be able to sit out from PE or physical education, or gym, you know, but I saw them running on the playground other day.” I’m like, well, you don’t get it. Like, you don’t get it, just because they can run around the playground yesterday does not mean they can do it today. And so, I know I’m preaching to the choir to you and anyone listening.

Rebecca:  46:20

Yeah, we get exactly the same, you know, that story, I could have told that exact same story. It happens. It happens. It honestly happens all around the world. And it’s not right. And until that level of awareness and understanding is there, you know, throughout every community, I think we’re always going to hear stories like that, sadly. So, you know, that’s why what you do and what we do is so important in helping to change, you know, change what’s happening out there.

Cheryl:  46:43

Yeah, yeah. Oh, my gosh, thank you. Sometimes I forget, because I’m like, it’s hard if you’re like a problem-solving type person, because you’re like, there’s still so many problems. But you’re like, no, I have to take a second and say good job for what we’ve done. And like, there’s that old parable of the person like throwing — I want to say seahorses, starfish into the oceans. Yeah, one at a time. It’s like, it made a difference to that one. I have to remind myself that every day.

Rebecca:  47:11

Exactly, yeah. Yeah. I love that story. Yeah. 

Cheryl:  47:16

Yeah. Well, thank you. This is great. I mean, I do want to respect your time, and I have some rapid-fire questions that are potentially could be a whole hour because they’re like, big questions. But do you have any best words of wisdom for children or adults who newly understand that they have juvenile idiopathic arthritis still, or people diagnosed with JIA?

Rebecca:  47:38

Yep. So, I think I’d mainly say it does get easier. I think those early days are so overwhelming. And I think it can be a really scary time, it can be a lonely time, but just hold on to that hope that it does get easier. So, the medications you kind of get used to them. And you kind of get to the point where you know what you’re doing, I always tell the story of how my daughter when she was first diagnosed, we ended up on 11, there’s 11 times a day, we had to give her different medications because she had uveitis as well. So, it was like eyedrops four times a day. And she was, before the methotrexate kicked in, she needed Naproxen several times that, you know, that was kind of everything was kind of building up. And I had alarm set, you know, 11 points through the day to give her medications and that was overwhelming, as well as her hospital appointments and everything else that was going on. So, it definitely does get easier because generally as the condition gets under control and improves, things become a lot more manageable and you kind of adjust to that new, your new normality or, you know, this is what out life is like now and you do make that adjustment as well. So, yeah, it gets easier. Hang on in there. 

Cheryl:  48:39

Yeah, I love that. I absolutely love that. And do you have a favorite, or does your daughter have a favorite arthritis gadget or tool in your toolbox?

Rebecca:  48:49

So, I was thinking about this and I was thinking, I don’t necessarily have a favorite gadget as such because I have used crutches for several times during my life when I had my hip replaced and as a teenager, and other times when I’m having a bad flare. But for me, I think it’s more of something to remember is actually no one knows your body as well as you do. So, I think it’s more about listening to your body and doing what feels right for you. So, in the past I’ve come a bit stuck when a physiotherapist has said, “You’ve got to do these exercises, and this will help you,” and I’ve really tried hard and done them and it’s kind of made me worse. And I wish I’d kind of said to them at the time, this isn’t working out for me, so that they could adjust it. So, the latest physio I saw actually I was very honest with her about my limitations. And so, she was very mindful of, you know, really gentle exercises that would help me rather than perhaps going too far that kind of make things worse. So, you know, with listening to the advice of your doctors and physiotherapists and your medical team, just have that discussion and say, you know, if this is not going to work for me, to kind of be open with them and let them know. So, you know, trust that you know your own body better than other people do. I think having said that, actually my bed is a very firm bed and I couldn’t I couldn’t manage without that. So, I don’t know if it’s a gadget or tool but having a firm bed is really important.

Cheryl:  50:07

Oh, that is, yeah. Yeah. And I’m realizing that a gadget or tool is really more for, I’m biased towards people with hand issues or upper extremity issues because that’s where my rheumatoid arthritis is most active. So, I’m thinking those little ones like the kitchen openers and stuff, but yeah, firm bed is huge, especially for hip pain, if that helps your sleeping — what do they call it, your sleep, sleep ergonomics. I certainly, yeah, I certainly understand that. And I think yeah, listening to your body is such a tricky one. It’s such a tricky one, because there’s different kinds of pain, like I was explaining some other day about how, like, I’ve started strength training, and I know how to push through, or I know that it’s okay in my body to push through muscle pain, but not joint pain, you know. But I can really feel the difference between those two. But for somebody who might be new to exercise they might not. You just have to, yeah, like you said, you’ve lived there for so long now that you have got a good sense of your body, you know, and takes a lot of advocacy to tell that to a physical therapist. So, good job. Do you have a favorite — this is literally, I just love talking about like pop culture or like culture, whatever we call it. Do you have a favorite book or movie or show you have been into?

Rebecca:  51:28

Yep. So, I kind of feel I missed out on reading as a child because I didn’t, I don’t remember having many books. I think I only had like two or three kind of story books on my shelf. I didn’t have many books whereas my children are blessed to have so many books to choose from. So, I kind of came to reading really only once I had children and it became my little bit of me time was to grab a book and read. So, yeah, now I love to read. If I can find time to read or make time to read, you know, I love reading. So, a friend lent me ‘Lessons in Chemistry’ just recently, absolutely loved that book. But I also love — I just have to mention, my very favorite author is Kristin Hannah. And I love all of her. Every book I’ve read by her, I absolutely love it. She has such great kind of characters. And there’s another author Victoria Hislop, and she writes historical fiction. And I really love all of her books. And I think the first one I started was called ‘The Island’. And I don’t know, I don’t know if you read it if you know about it.

Cheryl:  52:25

But no, I read the night — sorry, I’m a minute behind you. I read ‘The Nightingale’ by Kristin Hannah.

Rebecca:  52:30

Yeah, that was the first. That was my first of hers that I read. And then, at the back of that one, it had a little bit about one of her other books. So, then I went on to read that, and I just haven’t stopped. I’ve just made my way through pretty much all of her books.

Cheryl:  52:42

That’s how, that’s what I do, too. I find an author I like and I just like devour everything they’ve ever written. I love it. Okay, thank you for thank you for reminding me because I read just ‘The Nightingale’, I didn’t read any other.

Rebecca:  52:55

Oh, quick, I’ll quickly finish mentioning about ‘The Island’ because it’s set at a time — and it’s about the condition of leprosy. And it just inspired me so much that in that person’s lifetime that this story is about, a cure for leprosy was found. So, I kind of think if that can happen within one person’s life at the time, why can’t it happen for JIA? You know, that’s kind of what I want to hold on to. So, it is a fictional book, but based on kind of real-life events at the time. So, yeah, I find that hugely inspiring.

Cheryl:  53:26

Oh, that’s amazing. Thank you.

Rebecca:  53:29

I’ve got also, I’m so sorry, I’m gonna take your time. But I have a favorite movie as well. But I have to mention that, ‘Lorenzo’s Oil’. Have you watched ‘Lorenzo’s Oil’? 

Cheryl:  53:38

No, I don’t think so. I’ve heard of it. 

Rebecca:  53:40

And again, that is a, is based on a true story. And this young lad, and I can’t remember the exact condition because it’s been many years since I’ve watched it, but it’s his dad that finds the cure for the condition. And they can’t cure him because it’s kind of, it’s kind of generated to a certain point. The cure that’s found has helped all the children since then that have this condition. And so, yeah, so when my husband said, actually, I want to find a cure for JIA, I was thinking well, the odds are in his favor because he’s got a biological scientific background. So, yeah, let’s go for it.

Cheryl:  54:16

That’s like my favorite kind of people are the people who like just say there’s problem, like, I’m going to do something, like I’m going to. Yeah, and I don’t know if you listen to the episode from the Benaroya Research Institute on my podcast, but they’re in Seattle, actually. But the researchers there were saying, I was actually shocked that they said that they think a cure for adult rheumatoid arthritis will come in my lifetime because usually PhD scientists don’t say that unless they really think it will happen. So, I think that’s episode —

Rebecca:  54:47

I hope so. I so hope so. And I’m always so encouraged to hear about, you know, the latest research and I know you’re very much into, you know, finding out all the latest research developments because it is encouraging, everything that’s going on out there, there is so much to be encouraged by whether it’s new treatments that’s coming on board or the more that they’re finding out about, you know, the condition that helps us understand it better. So, yeah, there’s a lot of good science going on.

Cheryl:  55:08

Yeah, I think I’m, again, crossing our fingers for us. Do you have a favorite mantra or inspirational saying? 

Rebecca:  55:17

Yep. So, I have two for this one if it’s okay. 

Cheryl:  55:22

Yeah, of course.

Rebecca:  55:23

“It’s never too late to be who you might have been.” And I don’t know who said that. But I remember seeing it once. And I thought, yeah, I’m having that quote as one of my quotes. And I remember when I had my hip replaced, and that was six years ago, six years ago tomorrow, actually, tomorrow is my hip anniversary.

Cheryl:  55:41

Okay, I was gonna ask you when you got it. Okay. So, it’s after both your kids were born?

Rebecca:  55:46

All three of my children, yes. 

Cheryl:  55:48

Oh, three! I thought you had two for some unknown reason. Okay. Oh, my goodness, okay. 

Rebecca:  55:52

But I remember lying in that hospital bed. And for me, I found it a difficult operation to go through because everything I tried to read about beforehand, it was all aimed at older, you know, 70-year-olds having a hip replacement. There was very little out there for anyone, like, I was 40 years old at the time, there’s very little information out there for kind of my age group. So, I did, on my personal blog, I ended up, I documented the whole thing. And I ended up, you know, writing about it because I thought someone else is looking for that information. I want there to be something out there. And I remember lying in that hospital bed and thinking, you know, if I get through this, I can get through anything. And yeah, so that quote is out there as a kind of reminder of that, you know, it’s never too late to be who you might have been. And it’s, yeah, it’s just a reminder to get out of your comfort zone and follow your heart and try something different, see what happens. And my second favorite quote, and I think this goes back to what we’ve been talking about, about hoping for a cure for these conditions. And I think it’s a Nelson Mandela quote, and it says, “It always seems impossible until it’s done.” And I just love that because there are people that we even we’ve come across that they almost don’t dare to believe that it’s possible that, you know, things, a cure could be found and that things can improve. And, actually, we want to believe that and we want to see it happen. And when it does happen, it will be like, oh, okay, so it was possible. And I, you know, so that that quote, kind of reflects that belief that, you know, one day we’ll get there, and it will happen.

Cheryl:  57:18

I love it, I love it. I love it. What has been bringing you joy recently, right now?

Rebecca:  57:26

I think I just try to appreciate the little things in life, really. So, when I wake up, and I’m having a less bad day, and my back’s not so stiff, I feel like yeah, today, I could maybe do a household chore or something that other people probably wouldn’t find that exciting. I kind of, you know, if I feel able to do it that day, I feel quite happy about that. Or, you know, if I make time to have a bit of time to myself to read a book or that those sorts of things, just little, little things that I just kind of appreciate it. Even something as simple as being able to walk, you know, I kind of never take that for granted. I’ve been I’ve had to relearn to walk like three times in my life, you know, after being on crutches, after my hip replacement. So, I just never take something like that for granted. Because I think, you know, there was a time I couldn’t do it. And I had to learn again how, you know, how to do it, so. 

Cheryl:  58:13

Yeah, absolutely. Sorry, I cannot stop myself from asking, this is from a few questions ago, but I was gonna ask when you read, do you read on an e-reader, an electronic reader? Or do you read physical books or audiobooks? How do you like to consume books?

Rebecca:  58:31

I prefer physical books. I kind of like to know where I am in a book and see how much further I’ve got to go. I definitely prefer physical books, but for practical reasons, so if I am going for a hospital appointment to London, and I’m, you know, I’m going to be carrying a book, you know, with me, I kind of think, well, actually, I might as well get an e-book on my phone, because then it’s one less thing to carry. So, I’m always weighing up, you know, the practicalities of it as well, because the carrying is because I do get a lot of back pain linked to my arthritis and my condition. So, I’m always trying to, you know, balance it out. But my preference is a physical book. I’m not very good with audio stuff, because I don’t particularly like listening to music because I find I can’t concentrate on anything else. And it’s the opposite in the rest of my family. My children and my husband, they need music in the background. And I’m like, no, no, no, I need it quiet because I need to concentrate. And it’s the same for things like podcasts, if I want to listen — I prefer when you have a transcript of your podcasts, I prefer to read through the transcript. Because I’m just, and YouTube videos and things. I just don’t, I find I can’t do anything else. Some people might be able to listen and do something else, whereas I can’t. If I am listening to podcasts, I will have to sit there and listen to that, you know, that is all I’m doing at that moment. So, in reality, I prefer to have something to read through if I can read, you know, if I can read it, I prefer that usually.

Cheryl:  59:45

Yeah, that’s why I provide the transcripts. I, actually, when I’m learning something new in particular, auditory is not my strong — it’s my weakest learning method. Like, I need to, typically I would like to read something to get it into my head. That being said, I can multitask when listening to podcasts. So, I love to listen while I’m like cooking or, you know, if it’s a really important part, I will sometimes pause it if I have to like focus on something else. But anyway, that’s just, it’s just a little debate that was going on in my Instagram stories that, like, do you prefer the e-readers or audiobooks or physical books? But yeah, sometimes it can, for me, with thumb and finger pain, it can be hard to hold open the book. So, I like to do the e-reader. But back to the list. What does it mean to you to live a good life and thrive with rheumatic disease?

Rebecca:  1:00:35

I absolutely love the way you word that question to say, you know, a good life. And it’s not a great life, it’s not a normal life, but a good life. I love that wording, because it reminds me of one of the mums that I’m in contact with, she always tells me she says, “You helped me see that my child can have a good life despite having JIA,” and she uses that word, you know, ‘a good life’. And I think it kind of accurately reflects the fact that the things that we’ve talked about already, you know, there are still challenges, there are side effects of medication, there’s everything else that goes alongside having a chronic condition. So, it kind of probably isn’t accurate to say, you know, ‘normal life’, but it’s a good life is a good way to think of it. So, I feel, in my case, I feel despite my scenario, perhaps being one of the worst in terms of you know, the hip damage was done that was done, no medications, no treatments; I didn’t have rheumatologist all those years. So, despite all of that situation being kind of really bad, worst-case scenario, really tough situation, I look back at my life, and I think I have had a good life. I feel, you know, I’ve achieved all the milestones I wanted to achieve. So, you know, went to university, had a job that I wanted to have, you know, had my children and got married, you know, all of those things that I wanted to do, I’ve been able to do in spite of, you know, the odds being against me in terms of, you know, my condition. And I just think for children nowadays, the outlook is so much brighter than that. So, there’s absolutely nothing that needs to stop them from, you know, they’ve got JIA, they can follow their dreams, they can do whatever they want. And I think as parents, we should encourage our children with JIA and not limit them in any way. And, you know, my daughter, she loves penguins. And she always says, “I want to be a penguinologist.” 

Cheryl:  1:02:17

That’s my favorite animal! Yeah, I’m loving that. 

Rebecca:  1:02:22

You have a lot in common with her, with Taylor Swift, you know, and everything.

Cheryl:  1:02:24

Taylor Swift and penguins. We could do a global tour looking at the 17 species of penguins, and then a Taylor Swift concert.  

Rebecca:  1:02:34

She’s got a whole book she made when she was younger about all the different species of penguins, their sizes, where they live, where you can find them. It’s amazing.

Cheryl:  1:02:40

Yeah. That’s —

Rebecca:  1:02:43

The practical side of me wants to say, you know, as a mom, I think, well, if she went off to study penguins, like, would there be enough medical help for her if she was to, you know, all those things go through my mind. And then, I think, actually, I’m not going to stop her following her dreams. You know, why can’t she do that? She absolutely can. So, you know, whatever she wants to do, she can do. And I believe that’s true of any child of JIA because for many, many children, the treatments are effective, they can go on to live a very full, very active life and their JIA does not have to hold them back.

Cheryl:  1:03:12

Yeah, what I — first of all, you were really were speaking my love language, when you were like deconstructing my sentence, because I’m very particular, actually, although on the one hand, I go on long, like, tangents and sometimes put my foot in the mouth. On the other hand, when I’m writing things down, I’m very, very picky in particular about what words I use and how I structure things. Because it means, the meaning of these, the implication of these words is important, right. So, what does it mean to you to live a good life, you know, with arthritis, with rheumatic disease? And I, yeah, I feel very stubborn in a positive sense to say, like, you know, let’s look at the possibilities to still have a good life. And I, you know, I do think it’s interesting, the whole idea of, like, I think that my personal opinion was that there are limitations that we have, and everyone has them. Whether it’s, you know, emotional limitations, because you’ve had trauma in your upbringing, or, you know, limitations in your self-esteem or limitations in your physical body, there surely are some limits that someone would have with, in my opinion — and, again, this is me being practical — having arthritis, like, I’m not going to become a massage therapist, like my thumbs are not going to tolerate that, you know. But at the same time, I can say there’s still so much still available to me. You can channel that love, let’s say if what I love about massage is helping people feel better, I can channel that in a different way. Or if you love penguins, you can be the person in Antarctica helping the penguins, or in South, you know, Africa and, you know, South America, or New Zealand, or Australia. Or you could be the person that maybe is on the ground communicating. Like, there’s so many possibilities. So, being creative and seeing the workarounds is key instead of trying to force your child into a, quote unquote, oh, they have to have an exactly, quote unquote, ‘normal life’ like every other kid. It’s kind of a farce. No one — who is the person that has that normal life, do you know what I mean? Like, everyone’s — anyway, we’re all comparing ourselves to someone else. And we don’t want to, we don’t want to artificially suffer because we think we’re having something that actually, that we’re lacking something that actually nobody has, which is like a normal life. 

Rebecca:  1:05:26

Yeah.

Cheryl:  1:05:27

But normal is overrated, I need t-shirts for that.

Rebecca:  1:05:30

We’re so the same wavelength, actually, because in my notes, I said, you know, I don’t compare my life to others. Because actually, like, that can hold you back. And it can lead to disappointment, you know, if you’re thinking, so for me, I accepted very early on that I’m never going to be able to do — I’m not going to become a sports, you know, I’m not gonna become a sports athlete. You know, I kind of accepted that so early on that it never, it never felt like limitation. So, instead of focusing on all the things I can’t do, I kind of ended up thinking, yeah, but I can do this, I can do — like you say, it’s other ways of looking at things and seeing, you know, different scenarios and different ways of doing things. Yeah. 

Cheryl:  1:06:06

Yeah, it’s really is, in a way, I feel like I’ve become a more flexible person, you know, through having RA. And I mentioned earlier, I’m kind of a control freak. But so, by nature kind of want to control things. It’s actually more from my anxiety, because having control gives me the illusion that — or not having control makes me feel anxious. So, I grasp on to control. But having a condition that’s kind of out of your control in some ways, this forces you to confront, oh, yeah, I don’t always have control. And look, I’m still here. Like, I didn’t die, you know. [Laughs] So, you kind of have to like confront your limitations, but yeah, I know, so similar. And I think social media has really been like two steps forward, one step back for me with that comparisonitis. Because it’s like, it’s all good in your real life to be like, I have confidence. But on social media, it’s like, every day, you’re confronted with all these positive things, like, support, and education, and empowerment, and then other hand you’re like, if you’re in a, not in a good mental place, you’re looking at like, why is she doing so much better than I’m doing? Or why —? You forget that you’re just seeing a tiny sliver, you know, of someone’s life. So, I think it’s good, like you said, to remind yourself, just stay in your lane, live your life, you’re not living someone else’s life, you know. But anyways, you’re a good listener, so I just keep talking. But is there anything else you wanted to share with the listeners, before we wrap up?

Rebecca:  1:07:29

I think it’s just, you know, for parents, I would just say to them, you know, stay hopeful. Help raise awareness of the condition so that, you know, many parents when their child is diagnosed, they say, “I never even knew children can get arthritis.” So, you know, just pass that on to others in your own communities to help raise awareness. Connect with us at Juvenile Arthritis Research, we always love to hear from, you know, parents and families that we’re connected with. And I think I’d say don’t accept pain for your child, because I think it’s hard to know what the, how good things can be when they’re in that, when they’re first diagnosed. And, you know, that child’s may be not able to walk or not able to hold something, you know, whatever it is, whatever joints are affected, or whatever it is they can’t do, you don’t realize what the best situation can be for them, you know, you don’t realize how good the medication can be and how effective it can be. So, I would just say, please keep going back to your doctors, if your child’s not getting their kind of life back, as it were. So, if they are, if they’re still struggling, and you’ve given the medication a chance to work and they’re still not right, and they’re still in pain, don’t accept that. Because that doesn’t need to be part of the condition these days, you know, go back to your doctors because they have got lots more scope for different treatments to try, you know, maybe changing the dose of the treatment. There’s lots and lots of things they can do to make sure that child is able to live that good life and to, you know, have a full active life. So, that’s something I’ve just noticed that sometimes people kind of accept the pain because they don’t realize that that child can be pain-free these days. So, yeah, that’s kind of my final word of advice, you know, just keep advocating for, you know, parents advocate for children, those young adults or people of JIA themselves, you know, just understand your condition and advocate for yourself as best you can as well.

Cheryl:  1:09:11

And I think that stay hopeful is great for anyone, you know, the parents of kids but with arthritis and adults with arthritis. It is, you know, we have to hold on to some hope. Not necessarily that you’re gonna, there’s gonna be a cure tomorrow, you know, but hope that we will weather the storms. So, where can people find you online?

Rebecca:  1:09:33

So, our website is www.jarproject.org and we are on all the major social media channels as well, so you can find us on Instagram and that’s @_JARproject. And Twitter or X as it is which is @JARproject, Facebook or Facebook is where — we even have LinkedIn profile and YouTube as well. So, we have YouTube channel, so you can find us on all those major channels. And if you go to a website there should be links to all of those to kind of follow from there.

Cheryl:  1:10:04

Yes. And I’m going to put links to all of the things we’ve talked about here in the show notes which are always on my website that you can get to it by going to myarthritis life.net, the long URL is like arthritis.theenthusiasticlife.com, because that’s the URL, that’s the domain I got a long time ago. Anyway, but thank you so, so much for your time. This was really illuminating, like, your story is so, or your passion is really inspiring. And I know that there’s so many people walking around now who are, you know, living a more hopeful existence because of all your work. So, thank you so much again, and hopefully people will connect with you after this episode airs. Yay! Bye-bye for now. 

Rebecca:  1:10:53

Bye, thank you.