The Versus Arthritis Podcast

Episode 3 – It Doesn’t Define You - Alex and Sammy’s Arthritis Diagnosis Stories

May 20, 2021 Versus Arthritis Season 1 Episode 3
The Versus Arthritis Podcast
Episode 3 – It Doesn’t Define You - Alex and Sammy’s Arthritis Diagnosis Stories
Chapters
The Versus Arthritis Podcast
Episode 3 – It Doesn’t Define You - Alex and Sammy’s Arthritis Diagnosis Stories
May 20, 2021 Season 1 Episode 3
Versus Arthritis

Alex is 25 years old and Sammy is 24. What they have in common is that they were both diagnosed with arthritis at an age which many in society would consider ‘too young’. They share their very different diagnosis stories, as well as their tips on speaking to others, busting stigmas and adapting to adult life with arthritis.
 
If you have questions about your condition, you can visit versusarthritis.org for more information.

Show Notes Transcript

Alex is 25 years old and Sammy is 24. What they have in common is that they were both diagnosed with arthritis at an age which many in society would consider ‘too young’. They share their very different diagnosis stories, as well as their tips on speaking to others, busting stigmas and adapting to adult life with arthritis.
 
If you have questions about your condition, you can visit versusarthritis.org for more information.

[Alex G]: Hi, welcome to the podcast. I'm delighted to be joined by Sammy.

 

[Alex]: Hello!

 

[Alex G]: Hi Sammy, and Alex.

 

[Sammy]: Hi!

 

[Alex G]: There we go. We all muted beautifully there. Welcome to the podcast, everybody. We're speaking to Sammy and Alex today, about their experience with diagnosis. So let's jump in. So before we get started - I'm gonna ask you first, Alex, if that's all right - before we get started, why don't you tell our listeners a little bit about yourself?

 

[Alex]: Yeah. So my name's Alex. I'm 25 now. I was diagnosed with ankylosing spondylitis at age 23. But, I actually had symptoms since I was about 16 and didn't really know what it was. So yeah, it was a long road to diagnosis. I work full time as a marketing executive, and that's me.

 

[Alex G]: Thank you very much. And Sammy, why don't you tell our listeners a little bit about you?

 

[Sammy]: Hey, I'm Sammy I'm 24. I was diagnosed with juvenile arthritis when I was 11. I work with children and young people now, and I'm going to do my Masters in September, which will be very exciting in this new day and age.

 

[Alex G]: I just realised something we should mention is that you both know each other. Do you want to give some background on how you do know each other?

 

[Sammy]: We do. We are both on the young people's panel for Versus Arthritis. So we met a couple of years ago now though I think Alex, is it?

 

[Alex]: Yeah. Yeah. I think it was, yeah.

 

[Sammy]: Time flies.

 

[Alex]: Ha Ha Ha.

 

[Alex G]: Brilliant. I think that's really helpful though, that you can... you already have a little bit of background on each other, which means I can stay out of it a little bit. So Alex, you mentioned about your... you know... when you were diagnosed and some of the background around that. What was, sort of, going on in your life, like, around that time and how... I guess how did it impact your life at that time - being diagnosed? Like you said, you weren't too sure about the idea that young people could even be diagnosed with arthritis.

 

[Alex]: Yeah. So, I always... my symptoms started about... when I was about 16. So I remember I was... I'd just finished school and I was doing... I started my A levels, and I started to get, like, really bad, like, back pain and I didn't really know what it was and I'd basically just put up with it. I went back and forth to the doctors, like, various times, and they kind of didn't really know what was wrong either. And I kind of just put it down to, like, carrying heavy books and, like, my bad posture and stuff. And, like, you know, when you talk to people and they're, like, "oh I have a bad back". And you're, like, "oh, same!" You know, "me too". And like, yeah, like you said, I didn't know. I'd never even heard of AS before and I didn't even know, like, young people could get arthritis.

 

[Alex]: Like, I always thought, it was, like, older people got arthritis. So, I didn't really push for anything. I just thought it was just me being lazy. And yeah, I was 16 at the time. So, yeah, I finally got to about 21... so I did my A levels and then I went to Uni, and I was still putting up with, like, the back pain. And I was in... I remember I was in my third year at Uni, so I was, like, super busy with, like, my finals and stuff. And, yeah, the pain had gotten just, like, so bad that I went to a chiropractor, thinking it was... like, the chiropractor could fix it. And she was actually the one to tell me to go to the doctors and get, like, a blood test because I wasn't improving. And then, yeah, my diagnosis happened pretty quickly after that.

 

[Alex G]: Yeah. And Sammy, what was your experience with diagnosis? So when were you actually diagnosed?

 

[Sammy]: So, I was actually diagnosed when I was 11. So, me and Alex have really different experiences. We've reflected on this quite a lot, which is quite funny, but yes I was diagnosed at 11. And I suppose I was a bit of a lazy kid. I just didn't want to go to the doctor's appointments. I didn't want to do anything. But my mum, bless her, she really fought for all the doctor's appointments. I had a couple of, like, operations, like, keyhole surgeries on my knee, because I just didn't know what was happening, because it just kept swelling, because I thought I was just overweight and my knees just couldn't hack it. So, yeah, so, no, I had some keyhole surgery operations and I was, what... year five... year six? I was quite young. And I just thought it was quite nice to have a day off school to be honest, but then, you know, the pain got worse and diagnosed. I don't really know... I can't really remember how I felt when I was actually diagnosed. I think mum was just happy and relieved that it was something, because we just didn't know what it was for a little while. And I really got along with my doctor. I was with him from, like, 11... 12... and all the way up to when I was 16. And I was on various medication.

 

I also have like a little toe - I don't think I've told Alex this and she's going to laugh at this - I've got a toe on my foot and my doctor used to laugh at me so much. He'd be like "oh, how's your sausage toe today?" So, I had really a good experience, I got along really well with my doctor. I really appreciated him. I actually also took part, weirdly, in, like, junior doctor’s trials when I was, like, 12 or 13 or something and I got paid for it and it was great. They had to try and diagnose me with arthritis and all I had to do is, like, walk around and stuff and I got paid for it. So that was my first ever job. Yeah, so for me... so... I suppose the diagnosis was really... it was good to know. But I was just really young. So yeah, I always thought it was like... I just got used to it really quickly I suppose. And I've just grown up, all through my life, just really used to it. So yeah, quite different, I suppose. Yeah.

 

[Alex]: Yeah.

 

[Alex G]: Yeah. So you've... yeah so you, you know, you grew from an 11 year old into a young adult with it being the norm, I guess. And it sounds like you had some... you were able to have some really good relationships with the right doctors at the right times growing up? Is that about right?

 

[Sammy]: Yeah. I was really lucky that... I suppose it definitely depends on, like, where the country... and, like, it's kind of potluck when it comes to terms like that, but I'm in Suffolk and they were actually really good. And then when I turned 16 it was the transition from - I was so used to the child's ward - transition to the old adult ward. So that was, like, my difficult bit and that's what I didn't like the most, but, yeah. Yeah.

 

[Alex G]: Yeah. So Alex, you - like Sammy said - you had a sort of different experience in that you were already, you were already a young adult. You were in your third year of university, you had... you were already a pretty complete version of... of an early version of your adult self, as we all are at that age. So what was that like? Given that you weren't used to life with arthritis? So Sammy said that it became the norm, but to you, you had a different norm. So what was that... what was that like?

 

[Alex]: Yeah. Yeah, I mean it was hard because... I'd... like... that I'd grown up my whole life kind of... whenever people ask you, like "have you got any underlying health conditions" or anything, I was always that person to be, like "no", like, "nothing". So yeah, I was used to, kind of, going through my whole childhood with, like, nothing, you know, really wrong. So then to be in my third year at Uni...

 

[Sammy]: Do let me just jump in with that though...

 

[Alex]: Oh, go on!

 

[Sammy]: Right, so you know how you just said, like, you said "oh..." - like when people asked "do you have any medical conditions?" - I was so embarrassed. I actually just kept saying "no". And my mum was, like, "you can't lie". So she used to always, like, tell the truth, but I wouldn't talk to say it. I would just ignore it, or just wouldn't answer the question.

 

[Alex]: Aw.

 

[Sammy]: I know. So similar, but different.

 

[Alex]: Yeah. See, I wouldn't have even thought about because I... I guess I never had to go through that, like as a child, you know?

 

[Sammy]: Yeah. Yeah. It was a really weird one.

 

[Alex G]: Alex, on that, we know from a lot of people that we speak to with arthritis that there is a lot of stigma around the idea of there being, sort of, something wrong with you and somehow your... you know... your life not being... not being able to be as fulfilling etc. And we know that's not true, as well as the fact that young people can get arthritis. Did you find you were able to be open about it because of the age you were diagnosed? Or... how did that... how did that feel?

  

[Alex]: I felt like... so when I got my diagnosis I was obviously shocked because I never expected it to be arthritis, so yeah, that was a shock to me. But when, like, talking about it to people and stuff like that was quite difficult as well, because I had to explain that I've just been diagnosed with arthritis and a lot of people were like confused about it because they also thought, like, I was too young to have it almost, like, you know "you're 21 how can you...", you know, "you're in your twenties how can you have arthritis, like, just suddenly in your twenties?" So yeah, I guess that was difficult. I had to explain it. And especially with AS, like, I feel, like, I'd never heard of AS before and none of my family or my friends had ever heard of it. So yeah, I had to do a lot of explaining and, like, educating people on it.

 

[Alex G]: Yeah so I suppose you had to have two conversations with everyone, which was: 1. I've got this... no three maybe: 1. I've got this condition 2. This is what this condition is and 3. yes - people my age can get this condition.

 

[Alex]: Yeah, yeah. So it was... yeah, it was quite hard to have those conversations and to, like, know what to say and, like, how to say it and how much to say and what not to say, or, you know, like, to know where the boundary is to, like, to stop. I found that quite hard.

 

[Alex G]: Thank you. And Sammy, as you got older and started to develop, kind of, I guess, longer lasting relationships where you would share more emotionally and speak more about your condition, how did you find it? Like, maybe slightly going off what Alex has said there about knowing, you know how comfortable you are sharing and how much you benefit from sharing as well. Of course it can be a really, really beneficial thing.

 

[Sammy]: Yeah. So, at school I actually wasn't really allowed to do like PE and stuff because... just because my knees were just quite bad. And everyone used to always go to me like, "oh, you're so lucky you don't have to run around the pitch". In my head I was, like, 'I'm really sad'. Like, 'I want to be able to get involved, I want to do...', so, I kind of shut it out. I didn't really talk to people about it. And then obviously as I got a bit older and it got... you know, like... you go through puberty and you do this and the other and your body's changing, which is so normal to then open up to your friends a bit more. Luckily I do have like really amazing friends from school that I'm still friends with now.

 

[Sammy]: She's going to hate that I spoke about her, but, you know she was... she really helped. I also got better at explaining what it is and I just can't and I... and it's not the same as... obviously it's different to what Alex has experienced... but I suppose when people think of arthritis in an elderly people, they think of, like... but just because they're old. And although juvenile arthritis is in the joints and in the knees, like the elderly, it's still... it's very... it's still quite different. So I just, kind of, got used to explaining it and I just kind of got it out of the way sometimes. I'd just be, like, "oh yeah, this is it, this is the situation". You know, you live and you learn. Yeah. I don't know how long it took me to learn.

 

[Alex]: I kind of feel, like, the same as you Sammy. Like, I feel, like, when I first got diagnosed, like, I didn't really know what to say. And then, like, the more conversation that I had, like, the easier it got. Like, so, like, I guess now, like, two years later I'm kind of better at explaining it.

  

[Sammy]: Right.

 

[Alex]: But yeah. It's, like, learning, isn't it? Like, what to say? Do you know what's so interesting though is I actually went on a date and we would literally just talk about something and then he was like... "oh yeah" - like I, for some reason, was just opening up and I was like "oh yeah, I have arthritis" and he was, like, "oh is that the one that does 'this, this and this'". And he knew everything. And I was, like "I'm shocked". Because I was so used to having this conversation. Yeah, it was... it was... it just threw me off-guard completely.

  

[Sammy]: Right!

 

[Alex]: It didn't work out, but you know...

 

[Sammy]: I feel like I'm like that though. Like, when I talk to someone about AS and they're, like, "oh yeah", like, you know, "I know someone who's got that". It's, like, 'oh my God!'.

 

[Alex]: Because we don't think that anyone does. And we're so used to explaining it for ages. And then it threw us off. So when we all met up it was literally, like, the happiest, we've all been. We were all so excited.

 

[Sammy]: Ha Ha Ha! I know! I was, like, 'finally people, like, that understand and, like, know what arthritis in young people is'.

 

[Alex]: Yeah.

 

[Alex G]: Let's get more into that. I think that's... we've talked about the... perhaps some of the challenging parts of communicating and opening up, but let's... let's talk about the... the brilliant parts is when you find people who do understand and can listen and share in equal measure. What's that been like talking to other... I mean I was going to say young people... but other people with arthritis?

 

[Sammy]: Oh it is, like, it's such, like, a weight off your shoulders, like...

 

[Alex]: A weight lifted off my shoulder - that's the right saying.

 

[Sammy]: Like, but we've had a few, like, face-to-face meetings pre-COVID and... I don't know... I think in the second meeting someone was just having... I don't know who it was... someone was just... wasn't feeling well. And she was just, like, "it's so nice because I don't have to explain myself to you guys". Because we're always say used to... like, when I went to Uni, if my knees were really bad or anything, everyone just thought I was lazy or anything. But for me it was, like, "no, I can't walk because my knee's swollen, I'm so tired I need to sleep". And you just didn't... you had to explain the whole flare up. But talking to people, who's got it... if Alex is, like, "oh, I've got a flare up", I'm, like, "okay, cool, like, have a rest", you know it's like.... we help each other out. We just get it so much quicker, it's so much easier. No explanation.

 

[Alex]: Yeah. I feel, like, when you have, like, arthritis, that can be quite, like, lonely. Like you said Sammy, like, you have to... you feel like you have to explain yourself all the time.

 

[Sammy]: It's draining.

 

[Alex]: Yeah, like, especially with, like, I don't know if you feel like this Sammy, but with, like, fatigue.

 

[Sammy]: Yeah. Everyone thinks you're really lazy or something. And you're, like... or like you went out and you're like "no, I'm so tired. I'm about to have a flare up. I can feel myself drained. My fatigue is like taking over". But everyone just thinks you're lazy and you're just having a lie in.

  

[Alex]: Yeah. Yeah. Yeah. So like, one of my main things is, like, when I, like, go on a night out. Or if I, like, do something that's quite strenuous. And then, like, I don't know, like, two or three days later, like, I'm still really tired after it. Like, I have to rest. And, like, sometimes, like, people can't understand, like... "oh, but you looked fine then, like, you were out, you know, drinking". But it's, like, then I have to explain myself to other people, like "no, I need to rest now because, like, you know, I overdid it". But yeah, like, when you speak to people that have arthritis, like, they just get it, like, because I guess they understand. So yeah, it's been really nice to have, like... being on the young people panel and, like, meeting... because that was the first time I'd ever met and spoken to someone with arthritis - like a young person - was through the young panel. So yeah, it was, yeah, it was nice.

 

[Sammy]: It got a bit emotional on our first meeting didn't it?

 

[Alex]: Yeah.

 

[Sammy]: In a nice way.

 

[Alex]: Ha Ha Ha.

 

[Alex G]: All right. And we'll be back with Alex and Sammy after this little break.

 

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[Alex G]: And we're back now for our last little segment that we do on every episode. And it's all about asking our guests - which we're lucky enough to have to have this week - to reflect on their diagnosis a bit and give any, sort of, tips they might have. I'm going to ask you first, Alex, if you could give any advice to the past version of yourself, or I guess, what do you wish you'd known or anything like that, those kinds of tips, just after you've been diagnosed, how would you empower yourself, educate yourself or reassure yourself about what the next couple of years will bring?

 

[Alex]: I always thought, when I was diagnosed, that I would never be able to do, like, the things that I wanted to do anymore. So, I was like, "oh my God, am I going to be able to have a career?", "am I going to be able to, like, do all of the things that I want to do?" And now I'm, like, two years down the line I know that I can still do the things that I want to do. I just have to be kind to myself and, like, have rest days and, yeah, like, you can still do what you want to do, but you just have to look after yourself and look after your body a bit more. So, yeah. And I guess I'm still learning this - trying to be kind to myself and not be too demanding on myself. So, like, sometimes I want to do it all. So... and yeah, just to, like, appreciate how much I actually have done instead of what I haven't done.

  

[Alex G]: Great. I think a lot of people, you know other young people listening, are going to really appreciate the amount you have done as well. And I think sharing your story and tips is, I hope, really valuable to other young people. So thanks. Sammy I'm going to ask you also, what would you say to 11-year-old Sammy, so slightly different. You don't have to, sort of, contextualize it in the time period. But what would you say in terms of that kind of... how would you empower yourself and educate yourself to know that, actually, by the time you're this age you're going to be... you're going to know a lot.

 

[Sammy]: Right, I think probably just be patient. Like, I was really stressed that nothing's going to go right. And especially as I was 11 and I went through puberty and through all of this at the same time. Like, I was at school, there was bullies there, I was bullied because everyone thought I was lazy because of my joints, which was really annoying. But, you know, I would just be, like, 'just don't listen to them, they don't know what they're talking about'. Really just trust the people that you do trust and just trust yourself to, like... when you do feel like you just need a day, just, like, give yourself that day and just be honest with, like, your parents and - I'm really, like, talking to myself, like, "you be honest", that's really cringey - but you know, like, I'm 24 so... I have... 12 years down the line and I'm fine. I'm really happy to talk about it, really open and honest about now. And it does grow and, like Alex said, like, we're still growing, we're still learning ourselves as well. And, like, we're going to the next stage of our life and it's going to change again. And that's just part of it. But it's not a strange thing, it's a very okay it's a very... like... "you're right" basically is what I'm trying to say, "you're okay". Alex, do you know what I'm trying to say?

 

[Alex]: I know what you're trying to say. Like, I feel like everyone kind of has to do that to a degree anyway, like, when you grow up.

 

[Sammy]: Yeah.

 

[Alex]: When you start going into, like, different stages of your life, like, you kind of... like, it does get... it gets... I know what you're trying to say. Like, it gets easier. Like, I feel like it gets easier to open up to people like you... you... I know that I've started to... like I'm still learning now and I probably will be for the rest of my life, like, to listen to my body and know when to rest.

 

[Sammy]: Oh, I think what I'm trying to say is that, like, the arthritis doesn't define you as a person. You're not... just because arthritis does come under, like, 'disabilities', you're not disabled. It doesn't mean... you're still able to do stuff. And, like, it's just part of your personality. It's just part of your body. It's just part of knowing that. And once you accept that and you are confident and happy in that area, it would be so much easier just to be yourself. And I just think you need to let yourself be yourself while this is just a part of you, but it doesn't define you.

 

[Alex]: Yeah. I feel that, like, I have AS but it's not... that doesn't define me just because I have that. It still means that I have to, like, rest maybe some days that some other people don't. Like, I can still do the things that I want to do.

 

[Sammy]: And just give yourself the patience and the love that you need. Self love.

 

[Alex]: Yes. Self love.

 

[Sammy]: Self love.

 

[Alex G]: We'll leave that inspiring note as our ending note. I'd just like to say, thanks again to Sammy.

 

[Sammy]: Thank you so much. Bye.

 

[Alex G]: And thanks again to Alex.

 

[Alex]: Thank you.

 

[Alex G]: All right. Take care both. Cheers.

 

[Alex]: Bye.

 

[Sammy]: Bye.

 

[Alex G]: Don't go.

 

[Alex]: Ha Ha Ha.

 

[Sammy]: Ha Ha Ha.