lABLEd Podcast TranscriptEpisode 10: Jasmine Leslie:

In Association with Versus Arthritis

Lucy 00:00Welcome to the lABLEd podcast, a show about disability illness and difference. I'm lazy.

Alice 00:07And I'm Alice. [Dog barks] And that's Lola.

Theme Tune 00:11Though I might not fit in socially, I'm so much more than what you see. We all live our lives differently, kalediscrope idenitity. And this is who I'm meant to be, I'm just labelled me.

Disclaimer 00:36Hi guys, don't forget In this episode, I might swear Lucy might cry, and you can check out details of the trigger warnings on our website.

Alice 00:45Hi, everybody. Welcome to another episode of the lABLEd podcast with me and Lucy. Luce, how have you been?

Lucy 00:53I'm alright. Thanks, Alice. How are you?

Alice 00:56Yeah, I'm not so bad.

Lucy 00:58I'm very glad to see you.

Alice 00:59

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Yeah,

Lucy 01:00'Cause I've had a very stressful week.

Alice 01:01 Oh bless you.

Lucy 01:02So it's sort of, we're getting there now though. It's fine. Normality, normality is slowly returning to life and I don't like it, if I'm honest.

Alice 01:11[laughs] You got used to being in your PJs all the time?

Lucy 01:13Yes. Thank you. It's not, I don't like it. But yeah, I'm alright. How have you been, alright?

Alice 01:22Yeah, umm..

Lucy 01:24We've not done a podcast record for a long time, have we?

Alice 01:27I just noticed that before we came on. We haven't recorded for nearly a month. I can't believe that.

Lucy 01:32We've had, we've had a little bit of time off. But now we're back

Alice 01:35We've still been constantly bothering each other, talking to each other and bothering Adam. But, but haven't actually done any sensible recording.

Lucy 01:38No.

Alice 01:40 But

Lucy 01:41But we're back!

Alice 01:46

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We are! We are back. I'm sure you guys are really pleased. [laughs] We are back today with jasmine Leslie, who's here to talk to us a little bit about her life with arthritis and the one of the campaigns that she's working on with the Versus Arthritis organisation. So, Jasmine, do you want to introduce yourself and just tell us a little bit about you?

Jasmine 02:11Yeah, sure. Um. Hi, yeah, I'm Jasmine. I'm 17. And I was diagnosed with juvenile arthritis when I was seven. So I've had the condition for quite a while now. So I know. I've gone through everything with it. It's a big part of me. Yeah. And I'm studying my A Levels at the moment. I'm doing maths, physics and biology, which is quite stressful, actually. But yeah, it's all good. Really good.

Alice 02:37Yeah, that, I can't imagine now is - I, when I did my A Levels, what feels like a million million years ago, cause I'm so old, like, it was stressful enough, just that trying to, I imagine do that with COVID, and then also, you know, with a condition like arthritis, it must be, must be just all the things at once.

Jasmine 03:01Yeah, it really is. With my GCSE's as well, I actually did the exams, which it was really stressful time for, for me, which made my arthritis completely flare during the time, which just makes it a whole nother level of difficult than what it should already be. So then now with it being with COVID as well then, at least I've done it before with my GCSEs but it has it's a completely different situation again, trying to get used to doing even more exams at the moment trying to get the teacher assessed grades and everything. It's just it's a stressful situation at the moment but it will be overseen hopefully

Lucy 03:40So Jasmine, does umm, does things like stress and, what kinds of things affect your arthritis and make it worse. What things is there anything really that eases your symptoms with the arthritis?

Jasmine 03:55Yes, so I've definitely found that stress has really impacted my arthritis whenever I'm in a stressful situation like my exams or revision then my arthritis flares, which then obviously makes me more stressed because I'm having to go to hospital and missing school. And then it's just everything at once. And it's kind of a vicious cycle when it comes to stress and my arthritis. Also things like the weather and like anything, exercise sometimes triggers it, sometimes helps it it's really that's the thing with arthritis that people don't seem to understand is that one minute, it's completely fine with something you're doing and then the next minute it flares and everything's really bad and it's so unpredictable. I think people don't realise that the condition fluctuates so much that like as it does one one week I can be completely fine. I do. I actually do, performing so I perform on stage, I do the school shows, performing in shows like Greece and Like Little Shop of Horrors and stuff, but then the week after it's really impacted my arthritis. And if people don't see that, because I've been performing one week and dancing and singing and looking really happy, because that's what I want to do. Then the next week, I'm really, really struggling with it. Because I've gone through all of that, for my own enjoyment.

Lucy 05:25

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It's kind of it's kind of like, I suppose, do you know that you're going to sort of, you're going to pay for it almost? When, when you're on stage?

Jasmine 05:33Yeah

Lucy 05:34Do you think I know, I'm going to pay for this next week, but I'm gonna do it anyway.

Jasmine 05:38Definitely I go into the week of like, performance, upping my pain medication and like, just to get through it, because I'm not gonna let it stop me from doing what I want to do, obviously, and I want to perform on stage, that's what I really enjoy doing. So I'm not going to say that I can't do it just because I know that I'm going to suffer the next week. And then that's when people think that you're just faking it, you're just doing the things you want to do. And then acting like acting like it's really bad when the thing like the next week, like you're really suffering was with it. And it's, it's not like that it's you do suffer from it.

Lucy 06:18Yeah

Alice 06:18I think it's probably quite an alien concept. For a lot of people who don't have pain, or those kinds of issues, my condition I get, I get migraines, and they're very much brought on by sort of stress and overwork. So I will work myself, you know, I've had a really rough few weeks with my day job, I've been working a lot of overtime. And I've pushed through for about three weeks and then, err, got my period and it was just like my body went Nope, this is too much can't do any more of this. And I just had to sit on the sofa for a week because I just, you know, I couldn't focus my eyes. My brain fog was really bad. And it's, you know, I think, my husband's wonderful and very caring and understanding. But I don't think he really appreciates the difference between trying to focus on responding to work emails and things like that. And sitting on the sofa drinking to watching Midsomer Murders is it's not the same!

Lucy 07:21I mean, I I have cerebral palsy. So my I am I am, I haven't got arthritis, but I am in some sort of level of pain all the time never goes away. I wake up with it. I go to bed with it. It's there all the time. And there have been times where I've said to Alice, we can't record but - we can't record a podcast, for instance, late on in the evening, because I am. I've been in my chair all day. And by six o'clock, my body's going No, no, no more thank you, like -

Jasmine 07:53Yeah I completely understand that. Yeah,

Lucy 07:54

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It's like no, no, no, we're not doing this. And there are times where I do things. And I think this is I'm gonna pay for this in the morning. But I am not going to sit at home all day, on my own, not seeing my friends not going to enjoy myself because, you know, I'm still relatively note the word relatively young. So, you know.

Jasmine 08:15Exactly, yeah. I feel like going out with my friends and even going to school, then it distracts me a little bit from I feel like if I just stayed in bed because I'm in pain every day, then it would just make me think about it more and it would make it worse.

Lucy 08:29Exactly. You need that distraction.

Jasmine 08:31Obviously, sometimes. Yeah, sometimes you do need that break. But most of the time I prefer getting out of being out being distracted from from my pain, which I think is why lockdown was really difficult because it was just sat at home thinking about my pain all the day. And it's It was awful. I couldn't find anything to distract myself from it.

Lucy 08:53And I suppose the stress of the pandemic as well. I know I was my, my muscles were stiffer than usual. And I was just like, I call this the stress and the worry and not sleeping because we're in the middle of a pandemic. And if anybody breathed on me if there was a potential, I could end up in hospital. That was enough to make me go I go I can't sleep, you know.

Jasmine 09:14Yeah. And it was a shock, the shock of the change of routine as well suddenly not going out and then coming home and it was such a change of routine that it really impacted the way that I felt and then going back to school again, was then another shock kind of going from sitting at home all day to then suddenly intense days - working out, It was it was really difficult that week. Yeah.

Lucy 09:39Yeah. It's um... Can you describe Jasmine how it felt for you being diagnosed with something like arthritis at such an early age because you said you were seven?

Jasmine 09:51Yeah, I was seven. Yeah.

Lucy 09:52When you were diagnosed with the arthritis. What I mean, were you young, were you old enough to understand what arthritis was? Or did the realisation of I've got arthritis and this is what is considered to be an old person's problem. No, it's not automatically think arthritis is affects young people do so was it? Was it a kind of a realisation when you got to sort of a teenage sort of year where you thought, okay, I can kind of this is a bit of a shock.

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Jasmine 10:09Yeah, Yeah, so I don't particularly remember, like being told about my diagnosis, I would say I just, I don't know whether I've just blocked it from my memory. Or if I was so young that I just didn't really understand. I know, my mum was definitely, she didn't know that young people got arthritis, and as most people don't. So she was definitely quite shocked by it. I don't remember me personally being like, knowing what arthritis was, in particular. I remember, like reading a book or school or something. And it mentioned an old person having arthritis. And I was bit confused. This was when I was in secondary school. So a little bit older than that. And I was a bit confused. I thought that was what I had, you know, I it I think it took me a while to get to understand it fully. And now that I'm older than I, I try and do my research and try and try and like spread awareness of it to everyone, because I know a lot of people don't understand that people, young people can get arthritis, and also the fact that it's an invisible condition. I look physically normal most of the time. "Normal." [laughs] And yeah, it's people don't look at me and think that I'm disabled when actually, that's, that's what I am

Alice 11:50It's interested in I my knowledge and experience of arthritis is a generally amongst kind of the elderly population. The only difference is that I knows my my nan had rheumatoid arthritis from the age of about 20. She was quite young.

Jasmine 12:08Yeah.

Alice 12:09And, you know, I know that, that that kind of just appeared for her. And I know how much it impacted my mum's life, you know, from a very, very young age. How, How did you kind of come to or, how did your parents come to getting you sort of taking ether analysis or assessment? Analysis makes you sound like you're some kind of science project.

Jasmine 12:34Experiment! It does feel like you're an experiment, sometimes yeah! I think it was, it was really intense to start with. It was picked up because I used to do ballet dancing. And I think it was just my ballet teacher said, "Oh, Jasmine, your knee looks really big. Normally like that?"

Alice Evans & Lucy Wood 12:55[laughter]

Jasmine 12:55 And I looked at it, and I was like, Oh, I guess it is. So I went, I just went to the doctors. They did some blood tests sent me to the hospital. I think they just drained it, and then sent me away. And then it swelled up again. So I went back and my diagnosis was quite quick, actually. I know a lot of people's, it takes a long time, particularly as health professionals, it's not even that known in in the medical sector. So health professionals kind of don't look at a young child and think, oh, that's arthritis. I think it's it is becoming more acknoledged now -

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Lucy 13:32On the radar.

Jasmine 13:33Yeah. No. But before then it wasn't, then yeah, there's so many hospital visits. And I've it's just, it was so intense, and it still has been now going trial and error on different medications throughout my whole childhood basically. And it's really, some of the medications that I've been on have really affected even me now I still worry about them. I used to have to have injections once a week my mum used to do them, they didn't even have the pen type ones, then it was a syringe. So my mom would be injecting me when I was 8, 9, 10 years old every week and it would make me feel horrible for two days. And I just I got to the point where I couldn't be on it anymore. And the medication was the colour yellow. I still I get like migraines and feel horrible from the colour yellow. Same with like anyone touching my thighs or anything I get really paranoid about it and talking about it I get this horrible, like taste in my mouth. I used to get after it. My mum always used to like use the same hand cream and stuff before she did it. And I can't be near that. Now either and it's just

Alice 14:46It's really traumatised you

Jasmine 14:48Yeah. It's crazy because it's not. Obviously I know a lot of people go through a lot more but even just injections once a week like that and it really affects people with arthritis, and I think people don't understand what that's like. Because I know a lot of other young people with arthritis that have the same side effects from it. And now they've developed loads of new drug technologies, but they still start on that same medication for young people, which isn't needed when we have biologics now and it's ... Yeah, I think it's the awareness in health professionals as well as the public but health professionals as well need to understand about children and arthritis to make it better for us.

Lucy 15:39I always think it must be very difficult for people who've got hidden disabilities to decide, right, who do I tell that I've got this hidden condition?

Jasmine 15:47Yeah, yeah.

Lucy 15:48So you know, you either go one way you tell everybody just like, just so you know. before we start I've got arthritis.

Alice 15:56Public service annoucment.

Lucy 15:57

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Can we just acknoeldge that now and get it out of the way? Or do you, do you, you know, that, it's making that decision of doing that or just not saying anything unless you've you feel the need to go: "Okay, actually, I need to tell you now, I've got arthritis." So when you say the words, I have arthritis, what is people's reaction? You know, like,

Jasmine 16:19Yeah, yeah, definately.

Lucy 16:20how, do they, do they could do they sort of say, No, you haven't, you haven't got arthritis!

Jasmine 16:27Yeah. Definitely. When I was younger, I don't remember specifically, but I remember there was either a lot of that's what my nan has, or what or, or just, what's that? Like, well, obviously, when I was younger, people just didn't know what that was. I always, I always used to avoid using the term arthritis. I think because I had, there's so much stigma around it being an old person's condition that me it's kind of like a trigger word for people saying arthritis, people go...

Lucy 16:59My nan's got that!

Jasmine 17:01My nan's got that, you should try taking tumeric, you know, and you're like, if that was a solution, then we'd all be fine you know!

Lucy 17:10Holland and Barratt does that, can i have it in drip please? [laughs]

Alice 17:10Yes!

Jasmine 17:13Yeah, so yeah, I used to just say, like, I've got bad knees. Or if anyone asked, I'd kind of brush it off. Like it wasn't a big deal, because I've never wanted to have like, a sit down conversation with somebody as it being like a major thing about me, because I don't want that to be the defining thing about me, the first thing that someone knows about me, I've always wanted it to kind of be like a side thing and not not really a big deal, even though it is a huge thing in my life.

Lucy 17:46Yeah of course.

Jasmine 17:46It made me the person I am, I don't want that to be -

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Alice 17:48It's walking that line, isn't it?

Jasmine 17:50Yeah, I don't want people to think of me and think arthritis. You know, I, I want to be something more than just my arthritis.

Lucy 17:59First of all, do you use the term arthritis now? Now you're a bit older or do you tend not to?

Jasmine 18:04Yeah. I mean, now, I've obviously gone through secondary school switched friendship groups, I'm not entirely sure who knows anymore. I kind of I'm not worried about it at all. I don't know whether my whole sixth form knows about it, or if only the few people that I occasionally mentioned it to know about it. But I definitely I try and do like awareness within my sick form, like trying to do as an assembly or people like donating towards a charity that's supporting people with arthritis. So in that scenario, I would use the word arthritis, but I feel like even still now. I do sse the word if I'm, if I'm talking to my friends, but I always feel a bit hesitant still saying like, with my a-a-arthritis, like, I don't really want to say it, because

Lucy 18:57Yeah,

Jasmine 18:57not that it's a bad thing. It's just, it feels like a bigger deal if I say that [laughs].

Alice 19:04There's a lot around words. And those kinds of labels that I think people who don't have to live with them don't really understand.

Jasmine 19:15Yeah,

Alice 19:16You know, it took it. It has taken me a very long time to come to terms with just using the phrase blind to describe myself.

Jasmine 19:26Yeah,

Alice 19:26And every time anybody else uses it to describe me, even Lucy, I still go tense absolutely everywhere like

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Lucy 19:34Sorry [laughs]

Jasmine 19:37[laughs]

Alice 19:37It's not you It's just that for me that word has become associated with professionals and hospitals and people, similarly, kind of older people.

Jasmine 19:53Yeah, definitely

Alice 19:54And that kind of, not being not being able and things like that and, so yeah,

Lucy 20:01We ll, Alice, your condition as well Am I right in saying that it's more prevalent in older people? Your condition, or have I got that wrong?

Alice 20:09Err. No, it's, it's a mix error. So you tend to find there are people who are kind of diagnosed in childhood. So I was six, I think, I know somebody who was nine, most people are sort of, you know, before they hit puberty, or you get all the way through to like, fifth, 45, 50 and suddenly you're like, I can't drive anymore because my sights deteriorated. So it is sort of both ends of the spectrum.

Lucy 20:09It's like a see-saw, really.

Alice 20:09Yeah.

Lucy 20:40Cause I. I mean, for me, my disability, my disability, I mean, I know you can't see it now. Because you can only see my head on my shoulders. But when I'm out and about, it's very, very stark, staringly obvious that I am in a wheelchair. And there is no getting away from the fact that I am disabled, my hands look disabled, my face occasionally will look disabled, it just sort of decides to have this attack of itself where it just the muscles go "Bleurgh", and it's like what's that face? But it's, so I can't get away from the fact that I am disabled. So I learned from a very early age, well, I'm different from everybody else. I've got to try and own this and style it out [laughs]. Like, yeah, I can't walk. But my hair looks great don't it?

Jasmine 21:26Yeah

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Lucy 21:27Not at the moment because of COVID but yeah, usually my hair's like nice. And so I try my best to, to use distraction techniques. So yeah, I'm in a wheelchair, but look how good my hair is, or do you like my nice top or look at my lipstick, that kind of thing.

Jasmine 21:43Yeah

Alice 21:43I think, I think it's it's probably I mean, particularly, I am sure I've said this on the show before, but you could not pay me to be 16, 17 again. There is not enough money in the whole world [laughs]. And so to, going through that with a hidden disability when you're already when you're doing the school thing, and then you're also doing the hormone thing, and you're also doing that,

Lucy 21:56No. Nah-ah. Yeah,

Alice 22:10"Who am I? Where am I going with my life?" you know, that, it's, it's a lot to kind of work out those different elements of your identity anyway, to then throw pain and immobility. And...

Jasmine 22:26Yeah

Alice 22:27At it must, it's it's a lot to kind of juggle. And I think it must be really tough, you know, because at least with my condition 99% of the time, it's it's kind of just as it is, you know, with my friends and stuff at school, if I couldn't see something one day, I still couldn't see it the next day. Whereas, you know, it must be quite tough for you with kind of managing your your friends understanding and your social groups understanding because sometimes you don't have pain, sometimes you don't have inflammation, inflammation.

Jasmine 23:00So yeah, I think definitely, it's taken me a while to come to terms with the term disabled for myself. But now I realised that it's the only thing that makes people understand how much it affects me, like as a condition. But even so people still don't like to associate or use that word with with me like disabled, which is what I now identify with most. So, to that, like, if I'm on public transport, even with my friends, then people can't see that I'm disabled. So then it's such a difficult thing to try and explain constantly to strangers and to friends. That Yes, it it I am disabled, and I it does really affect me. And I think, especially with it being such a fluctuating condition, then, yeah, one day I can be running and playing sport and I used to be I used to really love playing sport. And I still do now even though I don't do it as much. I used to. I used to swim for county I used to play netball, I've pretty much tried every single sport ever because I'd start ballet, for instance, I think to start with, and then I wouldn't be able to do

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that anymore. And then I did gymnastics and then I wouldn't be able to do that. And then I did swimming and then eventually I've just had to stop because it's been so difficult. With my condition going in and out of hospital and being really bad and then being absolutely fine again, and I think people don't, can't, can't come to terms with that. I think like I said earlier about public transport then I'd get on a bus with my disabled transport pass because I can't walk very long distances so that I've been provided with a council, public transport pass and yeah,

Lucy 24:59Like bus pass thing?

Jasmine 25:00Yeah, a bus pass basically. And like every bus driver would just be looking at me like, I think one shouted at me like, what is that? Like you're just stealing someone else's?

Lucy 25:12Oh for goodness sake.

Jasmine 25:12Or it's like, it's just

Alice 25:15I once had a bus driver literally said to me, I thought you had to be old to have one of those.

Lucy 25:21What a dog or?

Jasmine 25:22Oh that's awful.

Alice 25:24No, no like a bus pass.

Lucy 25:25Well, I was gonna say, since when do you have to old to have a dog? [laughs]

Jasmine 25:32It's just it people, people just can't see it. I might be walking normally that day. But then the next day, I won't be able to walk. You know, it's, it's just people can't see it. And then people just think you're faking it.

Lucy 25:47The thing that always makes me laugh is when I pull up when I'm when I'm sat in the car, or I don't sit in my chair in my I don't sit in my wheelchair in the car. Yeah, I sit in the front seat with my mum. My mum pulls into the car parking space and when I am when you see me sat in the car don't look disabled

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because I'm sat in a regular seat. And we pull up in the disabled parking space and they're like looking as if to say she's, she's not disabled, she's, because i open the door And then I'm like, if I noticed that somebody is proper gawping and when I say gawping I mean, like, mouth open, not blinking, staring. I'll say...

Alice 26:28[laughs]

Lucy 26:28I realised that not many people would know what gawping is. And, but I will say tomy mum, just get that chair out of the back of the car really, really slowly. really slowly give them something to stare at, and lift me out very slowly, kind of thing. And then they have to kind of like look like oh, yeah, I wasn't staring. I wasn't I wasn't staring at all kind of thing. It's that kind of just, just don't judge people!

Jasmine 26:53It is.

Lucy 26:53I can't... It just drives me mad.

Jasmine 26:55Yeah. And I completely understand that as well. Because obviously, I don't even then get out of the car and then the wheelchair, I just get out the car and start walking, you know?

Lucy 27:06Yeah.

Jasmine 27:07So often, I feel like it's bad. But I feel like when I'm feeling good on a day, but I still need to use the disabled parking space or use my disabled bus pass because I can't go really long distances, then I feel like I almost have to kind of fake like hobbling,

Lucy 27:27Yeah [laughs].

Jasmine 27:28So people, just so people can, like, see?

Alice 27:31Yeah

Jasmine 27:32Because people don't. People can't understand it in their minds.

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Alice 27:37No

Jasmine 27:37Without being able to see you, like, see you being disabled, typically disabled, it's just...

Lucy 27:43Yeah. Humans are very simple, very simple beings. Aren't they? And you're just like, yes, it's all right. We come in different you know packages and things. But it's, it, it's that, you just think just try a bit of empathy. Because you don't know, it's like people always say to me about people with mental health conditions, you know, be kind because you never know what's going on. Behind closed doors. It's the same sort of thing. You don't know why that person hasn't as a disabled person's bus pass.

all 27:49[laughter]

Lucy 28:13You don't know why that person needs a blue badge. I think I have been guilty in the past of going well why have they got, why do they need... And it's only through doing things like this. And with my work, you kind of realise actually, there's a whole, disability's not just a wheelchair and a walking stick.

Jasmine 28:13Exactly Exactly. Yeah. And that's why we need to raise awareness of the fact that anyone can have a disability and we shouldn't be it shouldn't just be seen thing. It needs to be something that's understood in society for us all to feel more accepted. Even though it is a big thing that accepting and making everything accessible, then it still feels like it's not quite there yet.

Lucy 28:57If you make things accessible for disabled people you make it accessible for everybody that's the thing I always take away.

Jasmine 29:04Yeah

Lucy 29:05I think if, when I become Prime Minster, if I ever become Prime Minister

Alice 29:09[laughs]

Lucy 29:09Or Queen of the world, one of the two, I am banning stairs-

Alice 29:13

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This is the first I've heard of this.

Jasmine 29:15[laughs]

Lucy 29:17I am banning stairs and gravel first off. They're gone. Day after the election, I'm getting rid of every stair case in Britain.

Alice 29:26Oh but gravel's much more environmentally friendly than tarmac

Lucy 29:29Yeah, but I can't move.

Alice 29:31Can we can we come up with some kind of middle ground where there's like a gravel like edging to help with drainage?

Lucy 29:41Yeah alright then.

Alice 29:42Maybe, maybe I should be deputy Prime Minster and we'll balance it out.

Lucy 29:45[laughs] Yeah, cuz she's being a tyrant again.

all 29:49[laughter]

Lucy 29:52Um, yeah, no, yeah, but I don't know what why have we gone off on this tangent. I don't know. Alice, do you wanna, do you have another question?

Alice 30:01So you said that you do a lot of performance. And I got very excited when you said Little Shop of Horrors. Tell us about your performance and some of the roles and stuff that you played.

Jasmine 30:16Yes. So I haven't had this year because of COVID. But I used to do the school shows. They used to do them every year. And I just from the moment that I joined secondary school, and even in primary school, obviously, there's the Nativity and things like that, that you do. But then I got to secondary school, and I just, I've done speech and drama competitions outside school, but in school, they do

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shows like, we've done Annie, Billy Elliot. Little Shop of Horros, Crease. And yeah, so I was I was Frenchie in Grease.

Alice 30:49Amazing.

Lucy 30:49Oh wow! The best one!

all 30:51[laughter]

Jasmine 30:53Yeah, with all the pink wig and everything.

Lucy 30:55Yes!

Jasmine 30:57Yeah, I've just absolutely loved it. And I'm sad that it hasn't been this year because of COVID. And I probably hope to continue doing some sort of performing as a, as a hobby as a university as well. But um, yeah, I also used to do a Speech and Drama. So I've done I'm quite into public speaking, I've done speeches on raising awareness about education for girls in third world countries, and also just acting like, acting as a queen or anything like that, you know, I just I really enjoy it. Yeah, I used to do drama clubs and fantastic,

Lucy 31:38Fantastic, great.

Alice 31:40I, one of the things I always think is really interesting, we have people on the show is, you know, we've had a singer songwriter who's got autism. So you know, her, her ability to kind of communicate and interact and interpret the world is different from most people's. And she kind of funnels that into her music. And then you know, somebody who's who's got a condition that can be really physically debilitating, has got, like the performance bug, I always think those things are really interesting that, you know, we sometimes are drawn to the things that are the least expected, and are almost the sort of both the opposite and the epitome of the conditions in sort of personalities that we have.

Jasmine 32:32Definitely. And I'm not going to let something like sport or performance that I want to do stop me from, from doing it with my condition.

Lucy 32:41

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No. And I definitely think it's like a final act of defiance, isn't it? Really, you know, you can, you can, you can make things extremely difficult for me in other ways, but you're not taking this away from me. I think that is something to do with that. I really do.

Jasmine 32:59Yeah.

Alice 33:00So one of the things that we we've been talking about with the team over at Versus Arthritis is partly related to that kind of performance. And it's that that representation of people with arthritis and kind of chronic illness and chronic pain, on TV and in film and in the things that we see just in the media. And I know that you've been quite involved in that campaign. Jasmine, do you want to talk to us a little bit about kind of what Versus Arthritis are trying to achieve?

Jasmine 33:34Yeah, definitely. So Versus Arthritis are a charity, they are trying to dispel myths about the condition for both old people and for young people like me. They're trying to raise awareness, really, and help support people as well with the condition and one of their current campaigns, the painful truth. And it's about the representation of chronic pain on TV. And it's something that I really resonated with, because I realised with them, talking about this campaign that actually I've never seen a young person like myself, with a chronic condition in any film, or any TV show that I've seen. And it really I think it really impacts the way that people then see chronic pain. Often the way that pain is portrayed in films or on a TV show is a really delebrating condition that it's everything about that character's life. It's what the film or what the TV show is about is their disability, which isn't something that I want for me at all. I want it to just be something that I have, but I'm my own person away from that. So especially with young people, with chronic conditions, then again, none of them are hidden disabilities, none of them are something that's only kind of a side part of their life, it's definitely always physically seen that when pain is like a gunshot root wound, or whether they're in a hospital bed, it's always the main topic for that character. The only time that it may be isn't the main topic, for instance, with arthritis, the the like, the defining feature of the character is when it might be an older grandma ihat's like a side character with arthritis. And that's, that's kind of seen as maybe normal having a grandmf might have arthritis in a film, but it's never a young person. And that's really, it really impacts them the way that people see pain in other people. And it Yeah.

Lucy 36:02Do you think that have if you'd have had the representation of somebody who, who suffers with pain and arthritis, but it doesn't, it's not the be all and end all? Like it's not their whole story, do you think if you had more representation, like that, with you, for you growing up do you think that would have helped you maybe understand it and come to terms with it a little bit more maybe?

Jasmine 36:29Yeah, absolutely. I think, Well, firstly, it would help me explain it to other people, I think there's a lot of misconceptions with it. And it makes it a lot harder to explain the condition to other people. And also the fact that because it's not shown to anybody else either in films or TV, then it makes them not know how

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to respond to somebody who's tell it talking to them about their conditioning, they haven't seen anything in a in a film. that's someone responding in the correct way to somebody talking to them about their disability.

Lucy 37:06Yeah.

Jasmine 37:07So they then often I've gotten the wrong reactions, kind of jokes made, or like the older people have arthritis and everything like that, and people don't ever, like I've always had people saying, like, oh, it will get better, you'll be better soon. Don't worry, like, it's all going to be fine. And I'm like, No, like, I have this condition for my life.

Lucy 37:31It's not a cold is it?

Jasmine 37:32Yeah it's not like..

Lucy 37:34.It's not a cold that arrives for a week and then goes again like

Jasmine 37:36Exactly, yeah. And obviously those people are just trying to be trying to be nice, saying, Oh, you get better soon, don't worry, but I won't, you know, it's with me forever. And although they're trying to be positive and help

Lucy 37:51Positive yeah

Jasmine 37:52and be supportive, then they haven't seen the correct things to say to somebody in TV and film. And I think that industry really needs to change that to raise awareness in society.

Alice 38:06I think that, you know, the media bears a lot of responsibility for what it puts out there. I think that there's not enough kind of pressure put on media and media productions to show diversity in general. I mean, we still, and I'm not saying this is not an issue and not an experience that should be shared. But we still see a lot of TV programmes and films, where it's a person of colour or, you know, LGBTQ plus person, and the story is all about their experience of that element of their life. And I appreciate that, you know, that there are stories there that need to be told, and there are stories in the disabled community, about those that need to be told, but there are also stories, which happened to have a central character who is a person of colour or is an LGBTQ plus person or is disabled.

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Jasmine 39:04Exactly

Alice 39:05And also has, you know, x, y, z going on in their lives.

Lucy 39:09Yeah,

Jasmine 39:09Exactly. Yeah. I think it's a lot of forced diversity that then they're trying to make the whole thing about that huge experience in their life when, yes, it is it i'm not saying it's a is a huge impact on my life, my disability, but it's not all that I am. And I want other people to see that. Although...

Lucy 39:32Yeah. it's a bit, I always use the analogy, Jasmine, It's a bit like if we went to a dinner party with you, you would not spend your whole evening just talking about arthritis.

Jasmine 39:43Exactly

Lucy 39:43It would probably, your arthritis would probably be a little, a little bit of the conversation that lasted five minutes tops wouldn't it really? It wouldn't -

Jasmine 39:53Yeah.

Lucy 39:54Because you don't want, nobody wants to have that one friend that goes oh yeah, they're in a wheelchair and that's all they talk about.

Jasmine 39:59Exactly, that's what I try and avoid completely is

Lucy 40:02Yeah.

Jasmine 40:03... talking about my condition all the time. It's not something that I want. I want at all.

Alice 40:08

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I, I quite often when I haven't seen friends or somebody for a while, particularly particularly women who are sort of older sort of 15 years or so older than me, I quite often you know, it's Oh, it's so nice to see you. I haven't seen you for ages. How are you? And then it's "how's your eyes?" and I'm like,

Lucy 40:32[laughs] Still there! Still there! Still in my head!

Alice 40:37Yep. [laughs] Like, I get it. I understand what you're trying to accomplish here but...

Lucy 40:42Have your eyes got any better? [laughs]

Jasmine 40:44A lot of the time, a lot of the time the intention is positive.

Alice 40:48Yeah.

Jasmine 40:48 It's to try and support you. But it's just people don't realise the way that they phrase things really does affect you.

Alice 40:55Yeah, and I just...

Lucy 40:57[laughing] Alice, that's really made me laugh. That's like somebody going "hows your leg?" to me. Still crap!

all 41:03[laughter]

Alice 41:05Still not working. Can I, can I sit down and order my coffee before we get into this?

Lucy 41:11That's so funny. I mean, it's not funny, but it is. People are, people are odd. They're odd. Yeah, it's, uh, yeah, I always say like, just because I'm in a wheelchair. But that is not the like, when you co- when you come around my house for something to eat, or we're in the pub, the fact that I am in a wheelchair will probably not be mentioned. If hard, you know, if it's hardly mentioned, you'll be lucky, kind of thing. Because it's, it's boring for me to talk about disability all the time. You know, I work, you know, I work in the disability sector. So I do that a lot of time for work. I don't want to be talking about it outside of work,

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because I live with it. I work with it. I don't know, I've had enough, I, like I'm full of it now. Can we stop it please?

Jasmine 42:04Exactly

Alice 42:05Is this you giving up on the podcast then?

Lucy 42:09No.

Alice 42:09Cause all we do is talk about disability.

Lucy 42:12Yeah, no, it's this is fine.

Alice 42:14[laughs]

Lucy 42:14This is my limit now though, I've had enough now [laughs]

Jasmine 42:18And that's, that's just why I think TV and film need to need to show people with chronic conditions leading a normal life, whatever that is, you know, I hate the word normal, but because often, it is everything about them. They don't. They might if it's young person, they might not go to school. It's not it's always physically seen. And often, it's like, oh, they might die. It's so like, dramatised -

Alice 42:48Yeah

Jasmine 42:49 to make it a story. But it doesn't. It doesn't need to be it can just be a it needs to be shown in the film in a way that it's not everything about them.

Alice 42:58Yeah I think it's, it's -

Lucy 42:59Yeah

Alice 42:59

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The story doesn't have to be that person's, you know, illness or disability. The story can be that person's marriage, but they happen to be disabled or something like that.

Lucy 43:11And the story as well doesn't have to be a struggle. Because yes, I have a struggled. I have struggles in my life. But my life is not a struggle do you know what I mean?

Jasmine 43:21Yeah, it needs to show that I'm a lot more than just my condition. Again, I think that's, yeah.

Lucy 43:26Yeah,

Alice 43:27I touched on this at when I guess did on another podcast and on that I pitched Bridesmaids with everybody has a sensory impairment. That's what I want to say, the film Bridesmaid's, but everybody's got a different sensory or communicative difference or impairment so you can absolutely have all the jokes about the deaf person and the blind person not being able to communicate because that's that that would be funny, But it would, it would be funny in the way that the rest of Bridesmaids is funny because it would just be shocking and the, you know, uncomfortable. And yeah, that's what I want to see.

Lucy 43:57[laughs] Yeah okay.

Alice 44:10I want to see a film about bridesmaids getting drunk and having terrible love lives and they happen to be disabled.

Lucy 44:17Yes. Okay. Well, when I do in fact, find somebody and I do get married...

Alice 44:24[laughs]

Lucy 44:24You can become my bridesmaid and you could document the whole thing on a home video camera.

Alice 44:28Cool. Sounds good. Sounds brilliant. I like that we're doing it 90's style with a home video camera and not just my smartphone but okay! [laughs]

Jasmine 44:37[laughs]

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Lucy 44:38Whatever. Alright! You take the media student out of the media studies but you can't take the media studies out of the media student.

all 44:47[laughter]

Lucy 44:47Now I think it's really interesting. And I also get, I have said this before in previous shows that I don't think I've been out yet, so this is brand new information. I find it very disheartening cuz I am, I was a media student. I've had experience working in broadcasting. And when I just slowly started to realise actually, the media I'm very favourable to people with disabilities, it broke my little heart because I was like, well, I love television. It is you just think to yourself, yeah, come on it's like 2021 now, can we have a fresh perspective?

Jasmine 45:30It just needs to be represented more realistically. Because it's either completely dramatised or not at all and especially with arthritis. Like I said, it's such a fluctuating condition that you can easily have a character that has arthritis, but is going out and going on adventures and doing whatever else, because and also representing the fact that pain is really is really difficult to live with.

Lucy 46:00Yeah.

Jasmine 46:02It's just, I think it's a huge role for them, that they need to step up soon.

Lucy 46:08Yeah, on the odd occasion, where do I get a few days where I have no pain at all, I think what, hang on what's going on here? What's happening here? I realise, actually, I managed to do quite a lot, considering you know, my hands play up and I've got aches and pains everywhere, like I can still manage to fortune, I think I'm really proud of myself, that I can still manage to have a I am still contributing to society and I have not given into "I can't do it. It's hurting." Do you get that sense of pride? Or is it just a..,

Jasmine 46:41Yeah definitely. Definitely to see what I can do, as well as being in and out of hospital all the time, I had two years being basically trial and error on different medications, I'd be on a medication, for instance, infusions for like, every other week, and then I'd be doing that for six months. And then they'd say, Sorry, it's not working. You need to try a different one. And this was during my, the years that it's, it's really, like, when you're a teenager, I feel like years go so quickly, you're developing so much in such a short space of time that from the age of 14 to 16, when I was really ill, that's a huge, like, chunk of what

23Transcribed by https://otter.ai

feels like a huge chunk of your life, even though it's only 2 years, you've, like changed so much in that time.

Alice 47:35Mmm

Jasmine 47:35And I feel like I really I really missed out on like that, that time because I was just trial and error. And yeah, it's really difficult.

Lucy 47:47But it is a sense of achievement to look back and go Actually,

Jasmine 47:50Yeah,

Lucy 47:50despite all of that,

Jasmine 47:51yeah, that's, yeah

Lucy 47:52crap had to put up with,

Jasmine 47:54definitely

Lucy 47:55you know, not wanting to call myself an inspiration, but I'm a kind of a big deal.

Alice 47:59[laughs]

Jasmine 47:59Yeah, I feel like everyone else has done their GCSEs and done all this sort of same things as I have during those school years. But I've done it, as well as all of the other things I've had to deal with. And I think it's

Lucy 48:15Yeah,

Jasmine 48:16

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It's definitely made me a better person, more determined, and everything that I do, I put, like, 10 times more effort in to becuase of the condition. So everything that I do, then, really matters to me. I feel like I do one, like a few hours of revision, and that's drained all of my energy for, for that day, you know, because I think people don't realise with juvenile arthritis is an autoimmune condition. So it's not your joints rubbing together like osteoarthritis, which is what older people get rheumatoid arthritis, it's your immune system attacking yourself. Which really, it, although it affects my joints, it affects my whole body, my mood, like my fatigue is really bad. So everything that you do, so much effort is put into it that then you feel proud once you've done it.

Lucy 48:25Effort in. Yeah, absolutely. I completely understand that. And I completely get what you're saying. I understand it completely.

Alice 49:21Yeah.

Lucy 49:22I think disabled people and people with chronic illnesses and things like that are marvels really. They are fantastic. And I think as well, you know, when it comes to being employees, we're extremely loyal. We work very hard because we understand that, you know, it's important to you know, we want to do a good job

Jasmine 49:42Not everything comes easily.

Lucy 49:43Exactly. And you know, just because something isn't easy, doesn't mean we're going to give up and go I can't do this boss, you know

Jasmine 49:50Yeah Definetly

Lucy 49:51We will we are very good problem solvers. Because, you know, we have to think of things logistically, how can we make things easier for me as a as an employee to go and just function in my job anyway? And then when somebody says we've got a bit of a problem, because Susan in accounts again, Susan's back, because Susan in accounts has, you know, cocked something up.

Alice 50:17Classic Susan,

Lucy 50:18

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Classic Susan. We are great problem solvers. It's like nothing really fazes, really, we get stressed. And we'll get a bit fraught and a bit frazzled, but we don't it's not. You know, the problems are solvable. That's the thing that I think disabled people are very good at putting it out this is a solvable issue.,

Jasmine 50:38Yeah, we're a lot more determined, a lot more determined than everyone else, because of what we had to go through, as well as dealing with life at the same time.

Lucy 50:49Yeah, exactly.

Alice 50:50Jasmine, what are your kind of hopes and plans for yourself for the future? You said, You're just in the process of going through your A Levels is University on the cards?

Jasmine 51:01Yeah, yeah so, I'm doing my A Levels, maths, physics and biology at the moment, and I hope to go to university in September, if if COVID and everything calms down a bit.

all 51:12[laughs]

Jasmine 51:13Hopefully to study physics.

Alice 51:15Oh wow.

Jasmine 51:16I think I'm quite interested in medical physics at the moment, because of my condition, then I think it's really made me realise more about patients and I feel like I can, I'd like to go into research or helping improve the quality of life for patients with disabilities. And I think Yeah, I'm not entirely certain yet on a specific job title, but, you know, just something, something that will help patients because I understand what they're going through. Whether thats...

Alice 51:50So medical physics in a bit musical theatre?

Jasmine 51:53[laughs] Yeah, probably as a side thing, I'd quite like...

Alice 51:59Not the two at the same time! [laughs]

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Lucy 52:00[laughs] No, that's really great. Well, I am I wish you all the best with your studies and everything. And why, what is the your prognosis for your arthritis? Have they said that it will get worse with age or, you know, is there things to be mindful of you get older?

Jasmine 52:20Umm

Lucy 52:20Or do we, is it just a case case of, you know, we'll keep an eye on you. And if something materialises?

Jasmine 52:28Yeah. I think no one really knows with, because the immune system is such a complicated thing that no one really entirely understands yet. I think when I was younger, they said that I'd grow out of it. And then it's, obviously I'm nearly 18 now and it's still quite bad. I think I just I'm going to be going through flares, I think sometimes it will be fine and manageable. And then other times, I will be really bad. But I'm not sure no one really knows about the future with children with arthritis, because it's so it's not a very well known area yet. I'm on a clinical trial at the moment for a drug be to be licenced in children. So I'll probably be on that clinical trial for five more years or something.

Lucy 53:22Right

Jasmine 53:23But that's after all my trial and error on all of those different drugs for a couple of years. Then they said, Okay, we'll just put you on this clinical trial. And it has, it's definitely made me better. I'm still not 100% I still have joint pain every day. And I go through flares of really bad days. But I think overall, that I'm a lot better than I was last year.

Lucy 53:50Well, hopefully, if you get a career with the research for arthritis, you will be part of the change, won't you? So hopefully...

Jasmine 53:56Yeah. I do really like volunteering with Verse Arthritis and other currencies as well. Just trying to raise awareness and improve, like young people's care and involvement in their own treatments, I think, yes. It's a really important thing.

Lucy 54:16Jasmine, where can our listeners go to find information about Versus Arthritis and perhaps get involved and find out a bit more information about what they do and their aims, and...

Jasmine 54:27

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they're on all social media. So Facebook, Instagram, all of that they have, that they're sharing, you know, regular tips for people with arthritis, but also videos and things to inform yourself about the condition and particularly with, as, this campaign, they're sharing tips for the media and anyone in the TV and film industry that could then use to help represent pain in film and TV more in the future. They also have a website, which, yeah, again, all of the articles will be shared on that. They often do videos, they do everything really little videos, they do articles, anything. So yeah,

Lucy 55:15Yeah, we can put all the details of that in your show guy, we should be on our website alongside the transcription of this episode. So if anybody's looking for more information about Versus Arthritis, you can pop along to there and find out some more information.

Alice 55:29And their big campagin - The campaign that we're kind of piggybacking off of, for this week's episode is the painful truth, hashtag painful truth campaign. So give that hashtag a follow, share around and help, you know, raise awareness and promote the campaign guys, because I think it's something that a lot of you out there, especially people with chronic illness or chronic pain, I think it's something that's going to be important to you. So...

Lucy 55:31Go on Alice.

Jasmine 55:58Yeah, definitely.

Lucy 56:00We really wanted to cover this subject, because we, you know, we know about arthritis in old people, but not many people understand it, and are aware of it in in the younger generation. So it's something that's really important to us, because this is what this podcast is all about highlighting people's, you know, disabilities and chronic illnesses, and the fact that just a label of arthritis, just because you think it is an old person's problem. It's not.

Jasmine 56:28Yes.

Lucy 56:28So, it was right up our street really. So. No, thank you so much for your time today. Jasmine.

Jasmine 56:34That's alright. I'm, just another point, although it is Versus Arthritis, then anyone with a disability um or anyone in chronic pain at all, then this campaign is really relevant to you because although it is the charity is Versus Arthritis, then I think anyone in chronic pain and with a disability needs to be represented more in film and TV. So...

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Alice 56:59Yeah, absolutely.

Lucy 57:00Absolutely. Thank you so much for your time, Jasmine.

Jasmine 57:04That's alright.

Lucy 57:05I hope it's been a nice experience.

Jasmine 57:07[laughs] Yeah. It's been lovely chatting to you. Thank you.

Alice 57:10Great stuff. All right. Thanks. Thanks, Jasmine.

Jasmine 57:14Bye

Alice 57:15Bye.

Lucy 57:15Bye bye!

Alice 57:18Thanks for listening to the lABLEd podcast. If you like the show, please rate review and subscribe. You can follow us on social media at lABLEd, podcasts

Lucy 57:29Our thanks go to our editor Adam Hull, our music composer Maisy Crunden and our graphic designer Sarah Colley.

Alice Evans & Lucy Wood 57:36We'll see you next time.

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