Podcast: Challenging stigma around dynamic disabilities with Suruthi

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Transcript

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Suruthi: I was just really frustrated that like no one was talking about this, no one was talking about what it's like being young with arthritis. I knew there were young people with arthritis but they were just facts and figures, you know? This percentage of the population has JIA. This percentage of people below 50 have arthritis. But there weren't people that I could see actually doing things with their lives. Like I needed to, I felt like I needed some sort of like role models, someone to just kind of show me that you can do things you want to do.

Erin O’Reilly: Hello and welcome to The Disability Download, brought to you by pan-disability charity Leonard Cheshire.

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I’m Erin O’Reilly and on this podcast, we respond to current topics, share stories, and open up conversations about disability. 

Hi everyone and thanks so much for tuning in. So this week has been the first ever JIA Awareness Week which is run by the National Rheumatoid Arthritis Society (NRAS). JIA is Juvenile Idiopathic Arthritis, and this week's been all about raising awareness about JIA and showing how no two days are the same for people that have it. Now there's still lots of myths and misconceptions about invisible disabilities and health conditions. So awareness weeks are a really great way for educating and opening up conversations.

And for this month’s guest we invited on Suruthi, who is also known as Fight Rheumatoid Arthritis on Instagram. Suruthi was diagnosed with JIA when she was three years old and has been using social media to bring more visibility to JIA. 

And this is also a bit of a special episode for me, because I was diagnosed with rheumatoid arthritis when I was 25, so we have a great chat about both of our experiences. And discuss why it's so important to talk about invisible conditions and move that conversation forward. So, let's give it a listen! Thank you so much for joining us on the podcast Suruthi, it’s really great to have you on.

So I thought we could start by talking a bit about JIA, which is juvenile idiopathic arthritis, but it's also known as juvenile rheumatoid arthritis, which I believe you were diagnosed with at quite a young age. If you're comfortable talking about it, I was just wondering if you could tell us a bit more about JIA and what your journey’s been with it?

Suruthi: So I was diagnosed with JIA when I was three years old, so quite young. I had shown symptoms for a while by then, and it's yeah, it's quite a well known thing for people with JIA that it can be really tricky to diagnose, but even more so at an age like that where you know you don't know the words that you would use now to like describe your pain, you just know oh it hurts and that could be anything you know? So it got written off as growing pains quite a lot. And it was really frustrating for my parents because I wasn't sort of like walking or anything like other kids would at my age. But the doctors just kept sort of saying it’s growing pains until they eventually figured it out. 

And it's been, it's been quite a journey in the sense that obviously we know it as JIA now, but it was called juvenile rheumatoid arthritis for a long time, and that's sort of what was used for me when I was a kid and it's taken me a while to realize that only now in recent years, so I realised that they are actually separate conditions and it's not just the same as rheumatoid arthritis that's diagnosed before you're 18, but the way it presents and the way it's treated as well, it's actually quite different. And that's been definitely a learning curve for me and I think the other thing is, sometimes it's just easier to tell people you have Rheumatoid Arthritis than it is to say JIA, because people are more likely to have heard that. So it was just the easy option for a long time.

Erin: Yeah, so was it a bit like you kind of mentioned, was it a bit of a I guess not so much a battle, but I'm guessing your parents had to be quite persistent in that situation, which I think a lot of people can kind of identify with that as well.

Suruthi: Yeah, definitely like my dad was getting to a point where he was like generally like furious with the GP even after my diagnosis 'cause he was just so angry that they missed it. They just kind of just kept saying it's normal, but it wasn't and they weren't really doing anything to investigate what else it could be. They literally would just see me and be like well, she looks fine. And the only reason I was diagnosed, if I remember correctly, is because I was just screaming in agony one night like I was so much pain that my parents had to take me to A&E. And it was there that they decided to do some blood tests and some further checks and it was from there that I was referred to rheumatology. And I got my diagnosis.

Erin: Yeah, and actually, if they'd maybe done blood tests sooner, it could have been like more quickly identified, yeah. So you mentioned obviously there's a big difference between JIA and Rheumatoid Arthritis, and I think it's things that, and not everyone talks about it, and I think there's a stereotype that you know arthritis is only when, when you get older. I myself, have Rheumatoid Arthritis and there's lots of reactions I get even from like medical professionals will be like, oh, you're really young and I'm just like, yeah, but that's you know lots of young people have it? But you started an Instagram account called fight rheumatoid arthritis and you know you share really relatable memes and information and like factual posts, did that kind of lead you to setting that up? Probably 'cause of that kind of lack of understanding and lack of awareness about that?

Suruthi: Yeah, so setting up my Instagram account was quite a long journey behind it, shall we say? So I was diagnosed when I was three, like I said. But then I went into remission, sort of around 10 years old, shall we say. And it came back, like it came out during my A levels, but they like officially decided it was back and put me on methotrexate on my A level results day when I had just found out I was going to uni a few hours away from home! So, I was going to uni away from home and I'm suddenly on, you know, these strong medications that means that you have to be more careful and got to have frequent blood tests and it was a lot to juggle.

And I felt I was learning it for the first time because it kind of was the first time that I was in control. Because before my parents would deal with all of that stuff, you know I wasn't constantly worrying about booking in appointments and blood tests, and like if you get ill you know you have to be a bit more cautious and things like that. So that was quite stressful as it is, but telling people that you're 18 with arthritis, it's so tricky. And I had a situation where the people that I was meant to live with for the next year, they didn't believe that I had arthritis even after like showing them my diagnosis letter because they just couldn't comprehend the idea of like a dynamic disability. They were like ‘but you were walking yesterday, like what?’ And that, that initially made me really shut off from like telling people about it, except for the people that already knew, I wouldn't really tell anyone else in my life about it unless they already knew because I guess it'll be protecting myself. But that really upset me because you shouldn't have to show someone your diagnosis letter, but... 

Erin: No!

Suruthi: If you do that, and they still don't believe it then it's like wow, you know? But then I was just really frustrated that like no one was talking about this, no one was talking about what it's like being young with arthritis. I knew there were young people with arthritis but they were just facts and figures, you know? This percentage of the population has JIA. This percentage of people below 50 have arthritis. But there weren't people that I could see actually doing things with their lives. Like I needed to, I felt like I needed some sort of like role models, someone to just kind of show me that you can do things you want to do.

Because there was a point where I was a bit worried about my university journey actually, because my university wasn't sure if I'd be able to manage as a full-time student and they suggested I go part time and things like that. And yeah, I was just navigating it all by myself and I found it really tricky. And I spent a long time just being really frustrated like I want to tell people but I don't know how. Like I just want people to know that this is a thing. Yeah, and then sort of two years after the whole situation, I decided to set up an Instagram account because I was like, well, people have Instagram accounts for everything you know? Whether it's their dog or their cooking, like why not my arthritis?

And that's when I realised there was a whole chronically ill community out there. And it started the way that I think a lot of people start on the chronically ill community where you start with a username but no personal details because you're a bit worried about people seeing the side of you, like people you know and stuff. And then you start connecting with people and it kind of empowers you to like put your face in it, like your stamp on it. And yeah, I was really scared to start it, but once I did I managed to connect with so many people like me and it was like the friends I never knew I needed because I didn't feel so alone anymore. Like not many other people really, especially able-bodied people really get it. So it was just really reassuring.

Erin: Yeah, I imagine it must have been quite isolating, especially starting at university and people actively challenging what you're saying. It's just like why challenge it? Just...especially in the university as well, kind of assuming that you would have to go part time, it just shows kind of a lack of awareness and understanding, doesn't it? But you're really right in highlighting the, you know the community on Instagram especially, it's grown so much in recent times and I think it is very comforting to see other people talking about it like it doesn't have to be like a celebrity does it? Just you just have to know that there's other people that, like you say, get it and they're experiencing it. So do you feel like social media is really important in kind of challenging stereotypes about chronic conditions and health conditions?

Suruthi: Yeah, I think it's pivotal because it's a good way of information spreading and spreading fast. But as much as it's crucial, it's definitely not enough either. I think so many little things really make a difference, like whenever I'm getting the tube and I see the seats say like, not all disabilities are visible with their posters, it just makes my heart feel warm because it's like, oh, someone else has recognised you know?

In my uni now in the lift there’s signs saying ‘remember that people’s needs for the lift may not always be obvious’ and things like that. And a bit like you were saying earlier, but we get these comments about being young with arthritis from medical professionals. You know I've had it many times they're like, oh, but you're too young for that, and I'm like, you're literally treating me, like why are you saying this? So, I think you know, like it's a lot of work. There's a lot of work to be done, and I think the fact that even medical professionals don't seem to know this is quite concerning. [laughs]

Erin: Yeah, no, definitely. I think that's probably one of the most concerning ones. I had a physio one time that he basically it was like he felt sad for me and like, pitied me. And it was just so like such an uncomfortable experience 'cause I felt like you don't know me, you don't know like anything about me. Just experiencing that from medical professionals, it's just like wow just shows that there is like a longer way to go than maybe other people think.

Suruthi: Yeah, one of my physio's I, yeah I was seeing them to help with building up strength in my left leg which is my weaker leg, and they were kind of shaming me for not exercising more and said that my weaker leg is like that of a sedentary 70-year-old woman. And I was OK, like it's not like I chose this, you know?

Erin: Honestly yeah patient, patient manner is very important in all of that isn’t it?

Suruthi: Yeah!

Erin: At university did that kind, do you feel like it improved over time or did you find that that first initial experience kind of made you, yeah, not really talk to anyone about it when you were there?

Suruthi: Yeah so the first experience definitely made me kind of shut off a bit, but also it wasn't just that it was a lot of comments from like people on my course that weren't necessarily like close friends with but would come up to me and be like why are you walking like that? And it's like you know, like if you ask anyone else they’d have some like funny story about how they got drunk on a night out and fell or something. But I'm just like OK or like I'd ask someone to get me the lecture notes because I can't make the lecture and they're just like hmmm you could walk earlier, like are you sure you're not just skipping the lecture? And it's like no, like trust me no. So it is difficult, but I think being the person I am and just loving just giving comebacks to people, I just kind of took it as an opportunity to be like no, actually da da da da...you know?

But like I did stop kind of telling people except the people that already knew and I was lucky that I did have some friends who knew from the start and were very supportive. But I thought that was like a rare thing and I didn't realise until like a few years on that most people are actually not horrible and will just believe you when you say you have a condition. And yeah, over the years I've got some really good friends that have been really supportive. You know, like collecting my prescriptions for me and helping me. You know they would just turn up at my door like with my favourite snacks and stuff when I was flaring. And yeah, they just really understood. But I think a lot of that actually comes from me being open because they don't know these things either, and it's a learning process for like everyone involved, you know like if I couldn't make something 'cause of a flare up, I would just be like sorry I can't make it and just like disappear. But like if I say I'm flaring up they're like, Oh my God like don't worry about it.

Erin: Yeah, building that that understanding that empathy I guess is the most important in all of that as well, isn't it? And you have written before you've written pieces before about, you know, stigma around disability and how that can be like really deeply impacted in communities and how it's not always been easy to like, openly talk about that as well. What's that kind of been like for you kind of from the get go, is that something you felt you know from a young age, or was it more so at university? Or was it at school as well?

Suruthi: So I've I felt it from the start to be honest because just in my culture it's not just I think within a lot of South Asian cultures it's quite a taboo topic. You don't really speak about it. So when I was really, really young, I used to, I like lived in the hospital for a good like year, so you know, I couldn't really hide it then, but after that and according to my family I've been cured, you know? And it was just one of those things that I was just told not to talk about. Like just why kind of thing? Like not in a you should be ashamed of yourself but like just sort of to protect me from other people’s comments. But it was really difficult 'cause I have like such like vivid memories of some things that really upset me.

Like, I remember, I walk with one foot slightly bent out just because of the way my legs it’s just how I've always walked like a bit like a half a penguin walk, and I remember being told off for not walking properly because a relative thought I was just doing it to be funny, but like I was like seven you know? So I had no choice but to be like oh I'm so sorry and like force my leg to bend in a way that's not natural for my leg and walk off. And things like that and like what was I gonna do as like a 7-year-old at the end of the day? 

And then when it went into remission, I guess it was like my family's dream did come true, or almost was cured for a bit. And then when it came back, and obviously I'm an adult, so you know it's more of what I want. But I know my mum definitely didn't want me to share it because she was like we've seen firsthand the kind of comments they make about people who have shared they have disabilities, and it's not like she's ashamed of me, but she just doesn't want me to deal with that.

And that's another reason why when I started fight rheumatoid arthritis I was just a cartoon picture, you know, I was like, oh God, no. And like my first article was published about this, it was without my surname and things 'cause I was so worried what would happen. But then I realised it is really important because, well, first of all, I think one thing that's quite crazy is that with these kind of conditions, there's often like a genetic link there right? And the doctors ask you is there any family history and we're all going to say no, but there might be! But none of us would know 'cause no one talks to each other.

But there's a bit like the whole thing about, how I was quite passionate about people knowing about invisible illnesses I was always wanting to kind of speak up about how it's OK to speak about your disability and it's not something to be embarrassed of, and it's been really nice because it's made me realise that there are people in my family that have chronic conditions, you know? And there are people like that I know that have arthritis but haven't had anyone to speak to about it. So I guess it's just like once you take the plunge, you kind of realise, like, OK, it was worth it. But it is difficult because you just grow up always hearing the opposite and it just feels like you know you've done something really crazy.

Erin: Yeah, I guess as well like you talking about it will probably have opened up like so many really good conversations. But yeah, very hard to get to that point if that's always kind of just been the way things are.

Suruthi: And it really like helps with like when people that have known me for years don't know all of this, it really does highlight how invisible illnesses are really a thing do, you know what I mean?

Erin: Yeah

Suruthi: There are people in my family and I was like since I last spoke to you like I've had a hip replacement and they were like what? And I was like yeah, there were like a couple of surgeries before, but you know and they have no clue like at all.

Erin: Yeah yeah, which is yeah, those are kind of things that you know you would update on over time and stuff. So it's really good that you've kind of sparked those conversations and kind of moved that forward a bit. Do you feel like obviously you mentioned invisible disabilities are definitely it's, you know, it's a real thing but it's not being talked about enough. But now there is kind of more signage.

There's signage on toilets. There's signage on transport, and you know the lanyards and things like that. Do you feel like that awareness is growing and people are kind of spreading the word a bit more? I guess obviously with your account, but so many other accounts out there as well. Do you feel like, do you feel like you're kind of definitely seeing a bit of a shift with regards to that?

Suruthi: Oh, definitely like compared to I'd say three years ago, like just before I started my account and there wasn't things like this. Obviously, some things I think maybe haven't been carried out the way that we expected them to, such as the lanyard. I know a lot of people don't really trust them now because of how people were misusing them during the pandemic and things like that. But for the most part, you know the signage, the campaigns, the articles, there's so much more of it.

You know like every month you can pick up, you know the Metro or the Daily Mail or something? Not that I read the Daily Mail but [laughs] and there'll be a story about someone young with you know arthritis or some sort of invisible disability, and it's so much more common now than it was a few years ago, so I think there's a massive shift, but it needs to keep going.

Erin: Definitely, and it's like you say, for you know, like the younger generations, it'll be nice that they can go on Instagram and instantly find the account that they relate to. So social media is definitely like a power for good in that sense. Obviously, briefly just mentioned the pandemic and it would probably be remiss not to kind of mention it in the context of this conversation.

And I know myself being high risk I found it quite difficult the way people were talking at the start, you know, being very dismissive, obviously a complete lack of understanding of how wide that high risk group was. And definitely for me, just highlighted a lot of misconceptions about disabilities and health conditions. It made me speak more openly about myself as well. And it just, it felt like it was coming as a shock to people that you know all different people could be vulnerable and it wasn't just like elderly people. How have you kind of found it the last couple of years?

Suruthi: It's been a lot for sure. I just feel like the experience that I had is very different to any of my like friends who don't have disabilities because even when it was like legal to do things, like meet up with your friends, I was still a bit cautious like I would only meet up with my friends in like local towns, so like my dad could give me a lift so I didn't have to get like the tube or stuff. I've kind of avoided the tube as much as I can since the pandemic began and things like that. And you know with things easing up sometimes I felt like some people didn't really understand why I was so reluctant.

They were like, you know when I went home for Christmas like people wanted to see me but that's when Omicron was really high like, especially in London the numbers were really really high, so I decided I wasn't going to see anyone because why risk it? Especially when I'm home with my family. You know, I don't want to give it to my parents or anything either. And some people were just kind of like oh OK. Like it just feels like everyone stopped caring a long time before us and we still care, you know?

Yeah it has been really difficult in that sense because you're constantly like explaining yourself, and you shouldn't have to, because like yes, I'm vaccinated and yes, I'm wearing a face mask and all of this, but if I get it, it's not the same as them getting it. But the other thing that has really frustrated me is in terms of accessibility, all the things that I were told were never possible just became possible within a week of the pandemic. So, when I was at university, a lot of my lecturers didn't record their lectures just to get people to attend. And when I asked on the grounds that I am a disabled student, they were like, oh, because you're disabled like you can ask the lecture at the beginning of the lecture if you can record it in your recording device, but I was like if I can't get there...

Erin: Yeah, missing the point.

Suruthi: Do you know what I mean? The problem was never recording it when I'm there, the problem was having a recording for when I'm not there. But they were like yeah, it's up to the lecturer's discretion. And yeah, that was that, it was just not possible. It was just not possible. Yeah and yeah, now it is.

Erin: I know it's like so many suddenly reasonable adjustments were just so easy to make. Suddenly there was the tech to work at home for people that have never been allowed to work from home and the university thing that's something I've read about quite a lot. And suddenly you could do things that you'd actually been asking for, for so long. And while it's good, those things are in place now, it's very like disappointing that it took a pandemic to kind of spur that on.

And yeah, I agree as well in terms of people, kind of understanding of...you know it is different for for people that are high risk and obviously now, you know, it's still very much around, but I think people kind of they are moving forward and you know it's not the same situation for everyone and I think some people have forgotten kind of the last, the last couple of years. And obviously you know with things like the testing kits kind of not being so freely available as well I think you know that can really...you know it presents a totally different kind of situation for different people. 

So obviously you started up that account, which is great and it's a really good resource for people that either do have arthritis or don't but want to learn more about it. But you kind of mentioned earlier that you know it can be difficult to bring it up with people when you don't always know how understanding people are going to be, and you know how intrusive their questions might be as well. 'Cause you might not feel like kind of going into everything with people. But what kind of advice would you give to someone that wanted to share more about you know their chronic condition with a friend or I don't know even with like a university teacher or something like that but aren't quite sure how to go about it, what would be your kind of main advice for that?

Suruthi: I think my main advice is you know you can take it at your own pace there's no need to give someone sort of the Encyclopedia of Arthritis on the first day. And just know what you want from that conversation because I think like if you were talking to a friend you'd want understanding. But if you were talking to like a university lecturer, you'd want some sort of adjustments, you know, so it's kind of good to know what you want from the conversation 'cause it'll help you figure out what you want to say. But ultimately it comes at your own kind of pace.

It's different for everyone but I would recommend sharing that because I think, especially with things like university and work, you don't realise how much support you could get if you did. And obviously like don’t get me wrong, I know it's really scary to share and it's only now that I'm really open about it. Before it'd be like a little secret, you know, so it is difficult and I don't, I don't think it's like easy. You know like I do realise it's a really scary thing. But it can be so beneficial for both, like professional and personal relationships. I think just that extra understanding. So yeah, just it's like just get your foot in the door. You know you might not have to tell them everything, but maybe just kind of telling them you have a condition, and what it is and just, go from there.

Erin: Yeah, that's really good advice. And did you find that when you set up your account, did you actually start sharing it with like friends and stuff so that they could kind of gain a bit more of an insight into it?

Suruthi: Yeah, definitely. So I've shared it with some of my close friends and some of them are just, they know about it but I was just like there is no need to follow me because like you don't need a full you page full of arthritis memes and that's OK. Like I'm not offended. And you know there's people that I've known in real life that I've told about it. But then there's people I've met through the Instagram that are like friends to me now as well, which has been really nice. But yeah, even with my friends like I feel like they continuously learn about the condition just by sort of flicking through my stories every now and then you know. And they're like, Oh my God, I had no idea it affects you in this way or that way.

Erin: Yeah, 'cause it can be hard to get to like, get across to people, can't it when you're trying to describe pain and stuff like it is really hard to explain it to someone that isn't going to experience that or isn’t experiencing it. So I think having accounts like yours is such a good way of kind of raising that awareness and educating people. And just like breaking down those barriers I guess as well.

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So I will pop the link to your Instagram account and show notes of the simplecast site so that people can check that out and then learn a bit more if they want to. But before we go, is there anything else that you'd like to add that we haven't spoken about?

Suruthi: No, that was all! [laughs]

Erin: Thank you so much for joining us today. It's been really, really lovely chatting to you.

Suruthi: Thank you!

Erin: I just want to thank Suruthi again for coming on and sharing her experiences and highlighting some of the stigma and misconceptions that she's come up against in life. [music ends] And it was also really nice for me to be able to talk about some of my own experiences as well. We'd love to know what you think, so please do email us at disabilitydownload@leonardcheshire.org or DM us on Twitter or Instagram @LeonardCheshire.

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Thanks so much for listening everyone, stay safe until next time I'm Erin and this has been The Disability Download!

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