On episode 40 of the Arthritis Life Podcast, Suruthi shares the many ups and downs of growing up with juvenile idiopathic arthritis, including being isolated as a child during Physical Education courses and being bullied/accused of faking as a college student. She explains how she turned her painful past experiences into her present day purpose and how she copes with her condition as a young adult today.
Episode at a glance:
- Suruthi’s diagnosis story of juvenile idiopathic arthritis (JIA) at age 3
- What it was like to be a small child with hip displasia and JIA, unable to walk for long periods of time, including social isolation
- The challenges Suruthi faced in college with some “friends” and roommates not understanding her condition, accusing her of faking and ultimately bullying and shaming her
- How Suruthi’s painful experiences and her volunteer work with “Versus Arthritis” in the UK led her to create her “Fight Rheumatoid Arthritis” instagram account and be more open about her story
- How Suruthi’s south Asian culture affected her experience of disability and chronic illness
- How and why Suruthi is pursuing a PhD in chemical engineering
- “A Day in the Life” for Suruthi today
- What Suruthi wishes everyone knew about living with arthritis
Speaker Bios:
I’m Suruthi, I am 22 and I have had Juvenile Idiopathic Arthritis since I was three! Having arthritis has impacted my life in many ways but I rarely saw people like me talking about it which is what led me to start my instagram account, fightrheumatoidarthritis.
Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.
Episode sponsor
This episode is brought to you by Rheum to THRIVE, an online support group and education program Cheryl created to help people with rheumatic disease become more confident, supported and connected.
Episode links:
- Suruthi account:
- Instagram @fightrheumatoidarthritis
- Cheryl’s Arthritis Life social media pages:
- Cheryl & Arthritis Life on Instagram
- Cheryl’s website: Arthritis Life
- Arthritis Life Tiktok: @ArthritisLife
- Arthritis Life Facebook Page
- Cheryl’s Twitter: @realcc
- Arthritis Life Podcast, Practical Tips and Positive, Realistic Support – Facebook group
- Cheryl’s Arthritis Life freebies:
- Free Handout: Cheryl’s Master Checklist for Managing RA
- Free Training: Arthritis Life Hack Crash Course
- Arthritis Life Program Links
- Join the waitlist for Rheum to THRIVE, an online support group and education program Cheryl created to help people with rheumatic disease become more confident, supported and connected.
- Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition
- Arthritis Life Youtube channel
Medical disclaimer:
All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.
Full episode transcription
Interview between Speaker 1 (Cheryl) and Speaker 2 (Suruthi)
[Introductory music]
Hi! My name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks, and how to respond when people say, “You don’t look sick”, stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness — no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.
Cheryl: Hi! I’m so happy to have Suruthi on the podcast today. Welcome!
Suruthi: Thank you for having me.
Cheryl: Great! Can you introduce yourself and let the audience know a little bit about your relationship to arthritis?
Suruthi: Yeah, of course. So, my name’s Suruthi. I’m 22. I’m currently working as a research assistant in chemical engineering. I graduated last year with my Master’s, and I’m starting a PhD in September, which is really exciting.
Cheryl: Veryawesome. Congratulations!
Suruthi: Thanks. And I’ve had JIA — so, juvenile idiopathic arthritis — since I was three. So, that’s kind of my relationship with it. Yeah, it’s been a long time with it now. [Laughs]
Cheryl: Wow, yeah. I would love to hear your diagnosis story. Like how did you get diagnosed at that young age?
Suruthi: Yeah, so my diagnosis story wasn’t very simple, though I feel like it isn’t for most people. But I had another condition as well called hip dysplasia. So, between the two, it just meant that I wasn’t really making the sort of progress that kids make at that age in terms of crawling, and starting to walk, and things like that. It just wasn’t happening; I was still just rolling on my belly. And my parents were really concerned. They kept taking me to the GP and they just said, you know, “She’s just a late developer, she’s just a late developer,” but obviously, by the time I get to three, it starts to get a bit concerning if all I’m doing is what I was doing when I was six months.
So, it was actually one night I was just in agony, like I was just screaming, and my parents took me to A&E. And that’s when one of the doctors had sort of just a hunch, really, that I might have JIA. And then they referred me, and it went from there. But I think, between the two conditions, I just wish they’d pick something up. Maybe I’ll be able to figure out both of them, just figuring out one could have really helped because I didn’t spend a lot of time in pain.
Cheryl: Yeah, I’m so sorry. And when you say A&E, just for people who might have a different system, is that the Emergency Department?
Suruthi: Yeah, so it’s Accident and Emergency.
Cheryl: Yeah, okay, just wanted to make sure. That’s a really long time for a child to be in pain, of course, and then to not be meeting those milestones. And as an occupational therapist, definitely hip dysplasia would mean that it would look exactly that way; so, yeah, I’m glad that at least someone finally looked at something beyond hip dysplasia. Do you have any family history at all of any autoimmune disease? I’m just curious.
Suruthi: So, it’s weird because when I was diagnosed, they said it’s normally genetic and they did these tests and stuff, and it didn’t show that element. But actually, during lockdown last year, my dad was diagnosed with rheumatoid arthritis. It’s quite interesting because we’re starting to wonder if that’s correct, because he has seronegative, so it doesn’t show in his bloods. And a lot — his diagnosis was just sort of, he has joint pain, his daughter has arthritis, so he must have it too. But it kind of went as quickly as it came. So, I’m still not really sure about the genetic component. Because he had pain for about five, six months and then he was fine.
Cheryl: Oh, that definitely doesn’t sound very typical. But yeah, I think with children, I’ve heard that if a family member has rheumatoid arthritis or similar then it’s more likely to be caught early, but if no one else had it, people don’t necessarily think about it. So, I’m curious because I didn’t get diagnosed till I was 20, what was it like being a small child with juvenile idiopathic arthritis or juvenile rheumatoid arthritis, as it used to be called?
Suruthi: Yeah, it was very tricky, to be honest. So, between that and the hip dysplasia, I spent a lot of time in hospital, so I never went to nursery, for example, which is when you — well, I spent the whole time in hospital. I lived in hospital for a year, just having surgery after surgery because even after finding that I have JIA and hip dysplasia, they told my parents I’d never walk, like ever. So, we actually had railings fitted around my house because they said I’d never walk unassisted, only holding on to things, so we had these railings fitted all around my house. My parents both immigrated here, so they didn’t speak very good English, so I didn’t speak English either. I didn’t go to nursery. I joined reception, so that’s like the first year of primary school, about one month before the end of the school year not speaking any English, so I had a translator. And at the time there wasn’t very much support for kids with disabilities in general, so my mom used to come to school with me every day just to wheel me around in my wheelchair.
Cheryl: Wow. Oh, my gosh.
Suruthi: So, my dad would work in the day and then my mom would take me to school, take me home. My dad would look after me, then my mom would do the night shift. It was very difficult for all of us, I think. It was only a few years after when, I don’t know, something just changed in my scans. They literally called it a miracle, but they were able to operate and obviously now I can walk, which is crazy when you think about everything we went through. So, that made it a bit easier for me in terms of socializing, because it’s a bit hard to sort of play with people and make friends when you’re always with your mom. When I was able to work on myself and, you know, it was just me at school, not my mom as well, it was a lot easier. But there were still elements of school that made me feel a bit excluded like PE, which is physical education, because I was always the slow one. And, you know, in school they have this policy where if you’re well enough to go to school, you’re well enough to exercise.
Cheryl: Wow, that is so over simplistic! Sorry.
Suruthi: Yeah. No, it’s okay. I would literally bring in a note saying — like, from my dad saying, “Her arthritis isn’t doing too well at the moment, so please could she be excused from PE,” and she will literally read it and be like, “Well, you’re well enough to be here, so it can’t be that bad.” And then we’d be doing like laps in the field and people are counting how many times they can run past me, and then everyone’s finished and it’s just me left, and everyone’s watching as I’m struggling. So, I found that aspect really difficult. Because when I was really young, it was more like on the playground, you know. I remember just sitting on the side and just being like, “Oh, I wish I could run like that.”
Cheryl: How old were you when you got the operation that helped you learn to walk?
Suruthi: I was six-and-a-half.
Cheryl: Okay.
Suruthi: So, yeah, I started school when I was four, to kind of put it into perspective, yeah. It definitely helped a lot, but it was just so difficult, because there were still limitations like sitting cross-legged. I don’t know if that’s such a big thing over there, but here it’s just such a big thing. And I remember telling a lot of my friends but I used to write the Santa every year and that was what I would ask for. So, when I had my hip replacement when I was 20, that was the biggest goal for me, to be able to sit cross-legged. And that was the most I’ve cried like happy tears in my life, because since I was a kid it was all I wanted. Because in school, my current class teacher might know about my condition, but not every teacher does. And you don’t want to say. You want to blend in when you’re that young, I think. And, yeah, I had teachers sort of tell me off because they thought I was just being disobedient, and just not sitting like that. But then you don’t also want to — you know, when you’re like eight-years-old, you can’t really advocate for yourself that much. You’re not gonna be like, “Actually, Miss, I have JIA and this, this, this,” you’re just going to be like, okay, and then like, do your best to squeeze into a certain position.
Cheryl: That’s so sad though, that they didn’t understand or take the time to understand. I do hope it’s better nowadays. It’s so important to remember like it’s not just the physical part, right, the pain is one thing but you’re talking about the social effect, and the emotional effect of not being able to play similarly to other children, and then, yeah, the emotional aspect of being — because If I think about myself, I always kind of want to do what the teacher said, and so if you’re that kind of person, and then they’re telling you to do something you physically can’t do, it’s such a terrible feeling. So, I’m sorry you had to go through all that. Were there any other kids that stood up for you at all, or did you have any —?
Suruthi: Well, the thing is, I was so young, like in primary school, especially, that I didn’t even know the name of my condition. I just called it having a bad leg. So, you know, it’s difficult. And I didn’t really want to go around telling people because one thing they would do is like, some teachers would let me sit on a chair in assembly, but when everyone else in the school was sitting on the floor and you’re sitting on a chair, it’s just gonna bring a lot of attention to you, and I just really wanted to blend in, I just want to be like everyone else. So, I would just sit on the floor, or take up as little space as I can so don’t get shouted at for not crossing my legs. So, yeah, I didn’t really have kids stand up for me, but I guess I didn’t really give them a chance.
Cheryl: Yeah, that makes a lot of sense that if you’re trying to blend in, then you’re not going to be like, “Hey, friend, can you stand up for me. You know, I’m just, I’m trying,” I’m just so sorry that this happened. Did anything help you as a young child? Like in what we call elementary school, I think you call primary school, was there anything that any teachers or other kids did that helped your life be a little bit better?
Suruthi: The thing that comes to mind straightaway is my best friend in reception. She was called Tabitha, and she used to sit on the side with me and my mom, and it just made me feel like I have a friend. But then she moved, and I never saw her again. I’ll always remember her, ’cause she was my first friend, and she used to sit on the side with me and my mom, and just chill with us, and just chat and play like everyone else but sitting down. I always really appreciated that.
Cheryl: Tabitha, if you’re listening, please contact info@myarthritislife.net or follow @fightrheumatoidarthritis on Instagram, we need to reunite you. Oh, my gosh. But that’s so true, it’s these simple things, the simple things people could do. At that point when you were in primary school, where your hands affected at all, or was it mostly your hips and larger joints?
Suruthi: No, it was mostly my hips and knees, and to be honest, for the most part, it still is sort of lower body.
Cheryl: Okay, okay. So, were you able to do things like coloring, and drawing, and like fine motor?
Suruthi: Yeah, yeah, they were okay, yeah. Well, again it was — a lot of time was spent out of school obviously, as well, because when you’re having surgery, because that means you have to have pre-op, and post-op, and gotta have your check-ups, you’ve got to have your hydro, and your physio, so I was in and out of school a lot as well, which just made things a bit difficult sometimes.
Cheryl: Yeah, I can’t imagine. And then what was it like when you were a teenager, having to deal with these issues? Was it similar to the same kinds of social feeling isolated effects like in elementary school, or did anything change when you were a teenager?
Suruthi: So, the thing is, when I was a teenager, I was actually in remission. So, in that sense, things quieted down a bit, you know, less appointments and things like that. No more medication, but I still had the effects of my arthritis, my mobility issues. In that sense I still felt a bit excluded, and PE, for example, was a big one. And I remember once, we had these masks and we were trying to surprise each other, and someone looked at me and said, “Well, that’s obviously Suruthi, because look at the way she’s walking,” and stuff like that. And things like that would just be a reminder like the arthritis might not be active right now, but it’s still affecting me, if you know I mean.
Cheryl: Yeah, yeah. And one of the things we plan on talking about is having an invisible illness, but you’re bringing up a good point too that rheumatoid arthritis or juvenile idiopathic arthritis sometimes is an invisible illness where people can’t see what you’re going through in terms of fatigue and pain, but it also can be a visible condition. So, was it hard for you dealing with both invisible symptoms and visible?
Suruthi: Yeah, definitely. It’s very difficult because people tend to take things at face value, you know, that’s just kind of how humans are for the most part. And I guess as a teenager, it was people like, you know, the people that I was in school with were a bit more mature, so I could have that conversation with them, and I could actually pronounce my condition when compared to primary school. But it was actually when I went to university that I found it to be the biggest challenge, dealing with invisible and visible aspects of the illness.
Cheryl: Okay, can you tell me more about that? What were the difficulties?
Suruthi: So, this is quite a big story of my life, but I had found these people in first year that I was going to live with the next year, because the first year you live at the university and after that you have to move out and find your own housing. And it started off okay, we signed the housing contract, and then the cracks started to appear. So, it actually started one day when they said they were going to eat this food place near the gym and I was like, “Okay, I’m going to the gym at the same time, so I’ll come say hi.” And then, arthritis happened, so you know, I couldn’t walk so I didn’t make it to the gym. I actually had a course mate carry me back home and put me into my bed because I just froze. And then I got a message from these girls saying, “Well, did you have a good gym session?” and I was like, “I couldn’t walk so I didn’t go to the gym,” and they’re like, “Well why didn’t you come and eat with us then?” And I was like, “No, no, like I couldn’t walk.” So, of course I couldn’t come. It started there when I was like, okay, these people aren’t very sort of understanding.
And then in our group it was a natural four-two split, just in the friendships, and in the house, there was four bedrooms upstairs, two downstairs. So, they’re naturally just decided that me and my friend were going to be downstairs, which I would have been fine with but both bathrooms were upstairs, and with my morning stiffness, it just didn’t seem like a good idea. And when I asked them, they were very against it, to the point that I had to show them a diagnosis letter and they told me that they still didn’t believe me, which is crazy. And it was really difficult for me, because I was very new to my arthritis again, because my parents really dealt with it as a child, you know, all the medication, appointments. And it came back a month before I started university, and I was moving three hours away from home, so I was very new to it myself. So, it was hard to explain it to people.
And then I think the worst was — so, ever since I was really young, basically, I used to call like flares or like any day we’re having a high pain day, a ‘bad leg day’, and I still use that. But these girls, they went and took a picture with some random guy who had a cast around his leg, and they captured it, “Now that’s what you call a bad leg day,” and posted it all over social media. And I woke up one morning and I saw that, and yeah, I don’t know. I’ve never really had my heart broken by a boy but that really broke my heart. Because it just reiterated again, doesn’t it, like, “You look fine. So, you must be lying,” or whatever like that. People don’t really grasp the invisible side, and they just didn’t understand. They were like, if you can’t walk up the stairs in the morning to go to the toilet, then how are you going to walk to the bus stop to go to uni? And I was like, that comes with time, you know, when I wake up, I know that I’ll most likely use the toilet. But if I’m having, like, whether it’s low pain or high pain, you normally need to use the toilet at some point in the morning, whereas if I’m — yeah, I might not go to university that day, I might have to do it from home, you know?
And they just didn’t get that. They’d be like, “You walked yesterday, why can’t you walk today? Like what’s wrong with you?” And it just made me feel so rubbish because I was like, it feels like they think I’m attention-seeking, which is like — I’ve never really understood that kind of logic from people, because if I wanted to get your attention or make myself sound cool, then I just don’t know why you think I would choose juvenile idiopathic arthritis.
Cheryl: I — yeah. This is such — I don’t understand it either. I wish I did, because I think if you could understand it then you can fight against it, but why do people not give each other the benefit of doubt and trust.
Suruthi: I had to make a petition to get the bedroom I wanted, and one of the girls mums commented on it saying she has a disabled aunt, actually, so she’s more sympathetic than most with people with disabilities. But it’s like, but your daughter’s just taken a picture with a random guy with the cast, and made fun of my flares because they’re not always visible.
Cheryl: Right, this is where it gets difficult on social media sometimes too, because I’ve had people say things to me like, “Well, so-and-so has rheumatoid arthritis and she’s running a marathon, like why — don’t use it as an excuse,” kind of thing on this kind of like, you know, ‘nothing can stop you if you try hard enough’ and it’s like — or even people saying on my pictures or videos like, “Oh, you’re doing — like, I could never dance how you’re dancing or something,” not that you’d want to do necessarily, but they’ll say like, “How long have you been in remission that you could do that?” I’m like, I’m not in remission. I’m still in pain, you know, I’m just able to do this. But it’s like we all have to fight our brains. I’m making like five different points here, but our brain has a tendency to want to like oversimplify things.
Like when I was in college, I got a diagnosis between my junior and senior year, like my second to last to my last year, and my quit the soccer team. I was not feeling well enough to do it and my soccer coach was like, “Well, my friend had rheumatoid arthritis and she still played soccer,” and I’m like — you know, at that point I didn’t — yeah, well now I know to say, “You know, that’s wonderful for her, but everyone’s situation is unique,” but back then, I doubted myself. I was like, maybe I am using it — you know, it’s the worst feeling.
Suruthi: That’s why it’s so hard dealing with people’s comments, because I think we do it to ourselves anyway. I know I still do. It’s just so difficult, because I know a lot of people, they compare themselves to the old them, but I guess being diagnosed at three, I didn’t have that. But seeing other people talk about how they can, you know, like you said run marathons and stuff like that. And I’m just like, well, maybe I’m not trying hard enough. But it’s just not true.
Cheryl: No, no, we are trying so much harder than most, you know what I mean. Like we have to try harder just to do the things that most people take for granted. So, yeah, I mean, I think I really try to have this like, you know, abundance mindset of, like, ‘I’m so grateful for what I can do and what other people can do’. And, you know, so it’s not a competition. I am actually very competitive by nature, but I’ve learned to be like, I’m happy for the people when they can do things but I just, I don’t know, yeah, I really wish I had like a good life hack for people being mean bullies.
Suruthi: Yeah, I think it’s one of those things that’s so difficult to deal with, because now I feel so much more clued up on my condition. And I’ve come across people advocating, and it does seem scary to speak up for myself, but before I did have a few friends advocating for me which was really nice. But it was just horrible. I went for some counseling sessions after that, actually, because I went and I was not feeling great. And then after a few sessions I was just, I’ll be honest, this happened to me, and ever since then I feel like less of a person because of my condition because I’ve shown, you know, these people are 18-years-old, 19-years-old, they’re not young, not that that’s an excuse. But, you know, you’d think by then people are mature. You know, I’ve showed them a hospital letter. They’ve seen me go to A&E, some of them even come with me to A&E at times, and this happened. And, yeah, I just felt like a fraction of a person, just like my voice didn’t really matter as much.
Cheryl: Yeah, and did anything that the counselor said helped? Or what has helped you get — I hate the word ‘over it’ actually — what’s helped to move past that situation, I guess.
Suruthi: So, the counselors were helpful in the sense that I didn’t feel comfortable sharing these emotions with my friends. It’s just a very vulnerable part of me, so it was nice to have someone to listen to me and comfort me. But it was very much short-term solutions as opposed to long-term. I’d feel better that afternoon, that evening, and then a few days later it’ll be back on my mind, book another session, and so on. But I don’t know, something just changed inside me, because after that experience, I was like I’m not telling anyone about my condition, you know. I will just say I’ve got some sort of injury like, I can’t deal with that judgment again. And then I realized that, I don’t know, there’s got to be someone out there like me as well that needs to know that they’re not alone. Because a lot of things were really difficult for me at that time, you know. I was waiting for my hip replacement, I was missing exams because I couldn’t walk, but then the rescheduled exams were during my recovery period for my hip replacement. All these stuff developed, and the university suggested I go part time, because I wouldn’t be able to, you know, manage. And my education is everything to me, so hearing that was so heartbreaking.
I never had someone to look up to, or like, as an example that you can go to university and complete your studies, or anything like that. All I knew was the statistics that this many kids have JIA, but there were no faces, no stories. And I spent a good few months just telling my friends that I want to do something, I just want to make a difference, I want to do something. And then I started working with Versus Arthritis, NRAS, which are quite big charities here in the UK. And then in lockdown I started my Instagram. Well, no, I’d started before that, actually, but it didn’t take off very well because I got some abuse, so I stopped. Yeah, it was all this like racist stuff, I don’t know. But then in lockdown I was like, you know what, let’s try this again, and it allowed me to connect with so many people like you. And it’s so inspiring.
Every time I hear someone’s story, it’s just like, wow, you know, like they have this, and they can still do this, this, and this. Because there’s so many things in life that I’ve questioned, “Can I do that?” and it’s just so nice to have these examples. One thing is, ever since I was really young, I wanted to be an astronaut. And not one of those, you know, like childish dreams. I was well into my teenage years and I was still very serious about that. And my friends would be like, “Listen, I don’t want to knock you down, but it’s just not possible. You have arthritis, like come on.” Actually, one of those people that said that to me sent me a link a few weeks ago, the European Space Agency is recruiting and they’re allowing people with disabilities to apply! Yeah, so I think the one thing that I always tell people if I can is just don’t give up on your dreams just because of a diagnosis. And I think I just want to put my story out there to try and help people if I can.
Cheryl: Yeah, and so your account is @fightrheumatoidarthritis. I didn’t realize you only started that during lockdown, or I mean that you previously started something similar but then you restarted it during lockdown. What have been some of the responses you’ve gotten?
Suruthi: Oh, it’s been amazing. Honestly, it’s just amazing. I’ve had messages from people all around the world. I’ve heard people say, “Hi, like I don’t know anyone who’s young with arthritis, but I showed my friends some of your posts so they could understand me better,” or, “Reading your post makes me feel more seen.” I’ve had parents contact me, you know, trying to get a diagnosis for their child saying they don’t know anyone they could contact really that could help them because they don’t know what to do. And I know my parents really struggled with that. Like my dad used to literally just go to random hospitals and wait outside rheumatology and like, just ask doctors in like orthopedics, and asked doctors like, “Please, could you take a moment to look at my daughter’s file?” because they’ve been told I’d never walk again, you know, it was big, and parents really do want the best for you, and I think you get so desperate.
So, being able to offer any advice really, it’s just — I just feel, I’m just so happy that people are hearing my story and that I can make people feel a little less lonely, because I think having a chronic illness can be so isolating at times.
Cheryl: Oh, absolutely. And you really brought up like the fact that social media, you know, it has some negative aspects to it at times, like you mentioned, you know, the bullying and stuff like that, which can occur in person or online. But then the idea that in the past, you didn’t have any options to like meet other people with your same condition other than in like various, you know, like non-profit events in person, or maybe in the waiting room. But now, just with the touch of a fingertip on a computer, you can talk to people with your same condition all over the world. That’s really —
Suruthi: Exactly.
Cheryl: Yeah, that’s so, so great. I mean, it really is like — not to be cliche — but it’s like, you’ve taken lemons and made lemonade, you know. You’ve taken a terrible, you know, set of experiences and then turned it into — not to be like, “Positive thinking! You just need to focus on the positive!” but like, you’ve taken something negative and turned it into something that is helpful for your quality of life.
Suruthi: I think I just wanted — I’ve gone through so much in my life that — let it be worth it for something, almost. Like, let it help me do something with it, you know, because I know I’m not alone in these experiences of struggling as a child or being bullied. Yeah, but I never had anyone to look to see anyone that looks like me, or was the same age as me, going through it. Because when I went to my rheumatology appointment, everyone in the waiting room thought I was waiting with my dad, not my dad waiting with me.
Cheryl: Yeah, yeah, it’s so true. And there’s also the element of culture and ethnicity that I know even in the online communities, like I talked about in the chronically brown episode, that they can be predominantly very white or Caucasian dominated. So, has that been also part of your journey, representing your culture?
Suruthi: Yeah, actually my first time ever publicly speaking about my condition was for an article I read this magazine. And in our culture, disability’s still unfortunately quite a taboo topic, and it’s one of those things that you didn’t tell people just because they will talk about it. So, according to my family, I was unwell as a kid because obviously you can’t hide it when I’m living in hospital for a year. And then I was just miraculously fixed, then I’ve been fine ever since. And my mom doesn’t want me to tell anyone because — it’s not because she thinks badly of me, but she knows that there’s a lot of gossip and stuff in our communities and she’s like, you don’t want to give people a reason to talk about you, basically. You don’t want them to look at you differently. And it was so difficult because I remember, you know, when you’re a kid, some things just really stand out.
I remember once, my uncle, he told me off for not walking properly, because I walk on my left foot out a bit just because of my hip. And he was just shouting at me for not walking properly. He thought I was purposely walking like that, and I had no choice but to just say sorry, and like bend my leg inwards and try to walk off, quote, normally. Just different things, you know, just lots of different things where you just have to suck it up because it can be most of the time an invisible illness. And, you know, there’ll be days where I’m like, “I’m not feeling well, I don’t want to go to this party today,” and my mom’s like, “Well, we don’t have a good enough excuse for just you not going. We have to go, it’s too late,” so, I’d just be there like, okay then, time to get the Ibuprofen out. Because there’s just such a thing about reputation and, I don’t know, there’s a lot of work to be done, I think, in our society, really, especially in our culture.
But, so what I’m saying with the article, that was a big thing for me, having a published article but I didn’t put my full name on it because just in case someone found out it was me and it would go back to my mom. I was terrified.
Cheryl: Does she know about your current accounts?
Suruthi: She does, but she thinks no one knows about it, like no one that knows me knows about it. Which for the most part is true, but I’ve also posted my personal about it. It was like a coming out post. It was like, it’s time to tell the world. And all my cousins have seen and no one’s done or said anything else, gossiped about it or anything, but my mom thinks I haven’t told anyone. Because she’s literally like, do not tell anyone.
Cheryl: Yeah, it’s so complex because if everyone keeps not telling, it’s never going to change, you know.
Suruthi: Yeah, that’s why your question about family was interesting because I thinking, I don’t know if any of my cousins or aunts had it.
Cheryl: Yeah, what if everyone’s actually putting on this performance of ablebodiedness when everyone’s actually secretly in pain because you can’t tell what the invisible — and again I’m not trying to be judgmental about anyone’s, you know, culture, or values, these are all just complex human phenomena, where it’s like we wanna —
Suruthi: Yeah, it’s very complex. Because I spent a lot of time angry towards my mum for it, you know. Like, why are you ashamed of me, why are you trying to silence me, why are you doing this, why are you doing that. But we’ve reached a happy point now where she’s happy with the advocate work I do. She’s not like — it’s not like she’s not the biggest fan of it but she prefers the other parts of me. She’s more invested in things like my education, whereas my dad is very supportive of this side of things. But she’s just like, you know, you’re doing what you need to do, you’re helping people… Just don’t tell the family, basically.
Cheryl: I think like parents have a very strong protective instinct, you know. My mom is always saying, aren’t you worried like if you share your story? She’s always thinking of the worst case scenario to protect me. So, she’s like, “What if an insurance company sees you dancing in a video and says like you don’t need your medications,” you know, she’s thinking of all those things to protect me, and so I think I can understand why your mom’s maybe the same in terms of like trying to protect you from like —
Suruthi: Oh, definitely like she told me some examples of like, you know, an uncle of mine was diagnosed with cancer. And she was saying like he hadn’t felt well in a while when he went to this party, someone’s birthday party — I wasn’t there because I was away at university — but probably someone just said like, “Wow, you can really see the cancer in his face. Like he’s really not looking too well,” she’s like, “This is why I tell you not to tell people because they will say comments about you, because they love to talk about anything,” and so, it took me a while to really understand that, like my mom does want the best for me. But I just think if we keep shutting away this side of us then no one’s going to know anything. And if we’re more open, we could actually find a few more family links and help each other a bit more.
Cheryl: Right! And people are always going to say and think stuff about you, you know, like that’s what I remind parents of children with disabilities, not even just juvenile arthritis but other disabilities when I used to work in pediatrics. I would say, you know, kids are brutal. Like, they will make fun of each other if it’s for something. I got made fun of for having hairy arms, like, you know, I have a lot of hair. My parents said I used to call it my fur when I was little. But, you know, so I was super athletic, super able-bodied, and like they made fun of me for arm hair. They’re gonna find some reason to make fun. People are gonna find reasons to judge each other. If it’s not your way of walking, they’re gonna judge you for your clothing, or your makeup, your personality. So, we cannot shield each other. There’s no way to effectively shield yourself from criticism. I’ve learned, I’ve tried. And so we have to learn to cope with it and be like, okay, whatever I’m doing, or saying, or being in the world is more important than some random uncle’s criticism. Like, that’s all I feel, sorry about my little soapbox.
Suruthi: No, I totally understand. I think my mom was also worried that people would think that maybe I’m only getting opportunities because they felt sorry for me because of my disability or something like that as well. So, I think that’s another aspect. But yeah, don’t get me wrong, it’s difficult understanding it, but I’ve come to the place where me and my mom kind of get each other now. Because she lives in sort of ignorant bliss, because she doesn’t know that everyone already knows. [Laughs]
Cheryl: [Laughs] Okay, I will not share this with her.
Suruthi: But the people that do know haven’t really done anything, so it’s not affected me. I’m living my life telling my story and not feeling sort of restricted by that anymore either.
Cheryl: Yeah, and I’m sorry, I’m now — I haven’t moved on from what happened to you in university when you were 18, 19, and the people with the roommate situation with the two, the one nice roommate and the four not as nice ones. Do you mind sharing what ended up happening? Like did you find different roommates, did you move, or did they finally let you live in the better room near the bathroom, what happened?
Suruthi: So, I started a change.org petition. And then they finally agreed to let me have an upstairs bedroom, because I just didn’t get why they were so adamant on having four bedrooms next to each other. We’re living in the same house. But then they picked names out of a hat — like they put all the names except mine because we’d already agreed I’ve got an upstairs bedroom — to pick who else got it, and it just teared down. It was quite funny, but the people that were the worst of the situation were both the names that ended up getting the downstairs bedroom, which I was so happy about. But then they got really angry because one of them was like, “I’m gonna find somewhere else to live,” and the other one was like, “I don’t mind living downstairs but my parents said that I can’t give up my room for you of all people. Like anything else, I’m happy to be downstairs, but not I’m not losing my room to you,” and I was like okay. Then they got over it.
But living in that house was horrid. It was a very hostile situation, because me and the girl that I would get on with, we would stay at university for as long as possible, we would come home at night, we wouldn’t cook dinner or anything until they’d gone to bed. So, we were living on a very weird schedule where we would whisper to each other like, “Do you want to have some dinner now?” at like, 9:30, 10, and go downstairs. And then I never saw those people again, thank God.
Cheryl: I was gonna say, yeah, okay, okay. Ugh! I’m so sorry you had to go through that. I feel, I guess, really fortunate that that hadn’t happened to me as a young person. I mean maybe people were judging me but they just didn’t say anything, but ugh.
Suruthi: It was just so difficult because, like the whole thing was so bad, but the sharing that picture with someone else was, you know, that was the worst for me. But they somehow just managed to convince everyone that it was okay because they were drunk. And I just hate when people do that, you know. Like, you weren’t that drunk that you couldn’t, you know, log into your phone, ask a random person for a picture, make that caption, posted it, you know. Yeah. They thought that sober.
Cheryl: Exactly, exactly. So, now you’re 22, this was only a few years ago. Wow, okay. ‘Cause that’s a lot of growth since then. I’m just imagining how isolated, you must have felt and then now you are like a little bit — not to oversimplify it — but now you have, you know, you’re more confident in advocacy, but also like you have this community of others, you’re not alone anymore. So, I’m glad that that’s — at least that maybe gives people hope who are right now going through that terrible experience of isolation and that it can change pretty quick in a positive way. And did you just finish your undergrad or university last year?
Suruthi: Yeah, I finished last summer.
Cheryl: I’m guessing some people will be wondering, were there any tips or tricks you used to survive university as somebody with additional needs?
Suruthi: So, I think the main thing is make sure you tell people your condition. I know it’s difficult, but I remember when I first started, because I put on my application I have a disability, they make you have an appointment with like the disability staff, I think it’s called like student advisor or something. And they were like, “Do you need any like help with your arthritis?” and I was like, “Nope, absolutely fine. Absolutely fine.” Just put me in the example with everyone else, you know. They were like, “We can put you in a separate room. We can give you a better chair,” I was like, “Nope, don’t want to be singled out,” because, you know, just want to blend in. But when I started struggling quite a bit, because obviously when I had this appointment, my arthritis had been back for a month. I was in denial. I actually decided that the best thing to do when your arthritis comes back with a vengeance was to sign up for the women’s rugby team. [Laughs] Not a good idea.
Cheryl: There’s really a stubborn streak in us, in people with rheumatoid arthritis. I’m convinced we have a very stubborn streak, because that’s something I would do too.
Suruthi: Yeah, like I remember my friend told her brother who’s a doctor and apparently, he just laughed because he thought it was a big joke. But she was like no, really, like, she’s doing this now. It’s like, yeah, that’s me. But when I started struggling, I was really lucky that my personal tutor — so, they’re like your first sort of contact, really, when you need help with anything, not just academic, just university related — but yeah, my personal tutor. I think she had some sort of joint condition as well. She never said but, you know, from the way she talked, I could tell that she could relate.
And she would go above and beyond for me, and that really changed everything for me. Because sometimes I’d wake up and I’m flaring, and I literally can’t walk and I’ve got an exam. And she gave me her phone number and I would literally just call her, and she’ll be like, “Leave it with me, I’ll sort it out,” and she sorted it so that I could resit my exams in what’s normally like resit period, but I’d set it as a first sit. Because normally in resit period, they get capped, but I obviously didn’t sit it in the first place, and things like that. So, definitely sort of tell people what you need. I didn’t know what I needed. I think that’s why I said nothing. But if you tell people how the condition affects you, then they can try to help find things that will help you, because I think sometimes we don’t always know what help we need. So, we’re just kind of like, I don’t know.
Cheryl: Yeah, that makes a lot of sense. It’s great that you had that. Would you say that they were a tutor?
Suruthi: Yeah.
Cheryl: Yeah, that’s something I don’t think is always available in the US but at least disclosing at your university or college that you need accommodations is so important and, like I always say, I am an optimist by nature, but with these kinds of issues you want to be actually like a pessimist, like plan for the worst. Think about what would happen if it gets really bad, because when I started my Master’s, I was in remission. So, I didn’t disclose anything. But then of course, things got worse, but I still didn’t end up having to alter too much. But if I was going back now, like if I was going to do my Master’s now, I would have to disclose for sure. So, yeah, always err on the side of caution. And I’m so curious about you that you’re going to start your PhD program in, what was it again?
Suruthi: In chemical engineering in September, yeah.
Cheryl: Oh, my gosh. So, I’m just curious. What made you choose that field?
Suruthi: So, yeah, I did my degree in chemistry and I was really interested in like pharmaceutical formulation, so I did my Master’s project on that and it was —
Cheryl: In what formulation, sorry?
Suruthi: Pharmaceutical.
Cheryl: Pharmaceutical, okay. Sorry. I’m trying to take notes here.
Suruthi: Sorry.
Cheryl: No, no. You said it perfectly. It’s just my brain was slow. Okay, pharmaceutical, perfect.
Suruthi: Yeah. And it was just so exciting because it was a new like field of chemistry that I’d never come across before, until I was a few months in. I was still doing final stage interviews for like patent attorney and stuff like that, where I’d use my science but not really. And then I found this and it was so exciting, like it would be my reason to get out of bed in the morning because I’ve made something that no one had made before and it was the most exciting thing to me. Unless you care about like this specific field, it doesn’t mean anything, but to me it was everything, you know. I’d be like, “Oh, my God, like labs open at night and I can go see my results. Like, oh, my God, look at what I’ve made today.”
Cheryl: That’s so cool. I’ve never done anything like that, so I’m just fascinated.
Suruthi: Yeah. So, after a while I was like, “Oh, this project finishes in four months” — it ended up being three because of COVID — but I kind of want to do this for a bit more. So, then I was like, I start looking into PhD’s because you can do it for another four years, and they pay you to do it, so, you know. So, yeah, I’m doing my PhD and it’s chemical engineering just because I’m now looking at the scale-up process. So, it’s actually going to be in collaboration with AstraZeneca, which is so cool.
Cheryl: Wow! I think people are gonna be curious, how are you medically managing your juvenile idiopathic arthritis now. Are you on any medicines, if you don’t mind sharing?
Suruthi: Yeah, of course, so I want Tocilizumab infusions — I was going to say ‘infections’.
Cheryl: I just started that last week! I’m sorry, this is about you, but I’m just so excited.
Suruthi: I just saw your comment on a post, I can’t remember, was it Danielle’s? Yeah, I just saw your comment and I was gonna message you after this anyway, but yeah, it’s been a miracle drug for me, really. It’s difficult because my rheumatologist wants me to try something else just because I have uveitis, so I have inflammation in my eyes, and although my joints are the best they’ve been, I still get some swelling here and there. And I still have inflammation in my eyes, so they’re like, you know, we want to see if something could work better. But for me, this the best it’s ever been. Basically, no side effects, other than every now and then my white blood cells will drop a little low, but they recover okay. And just like straight after the infusion, I’m normally quite tired, but even that you get kind of used to after a while. I remember the first one I had, I slept for like 13 hours, and now I just sleep an hour longer and I’m okay.
But yeah, it’s been like a miracle drug for me because it’s the lack of side effects for me, I think. And I thought, you know, I have to go to a hospital instead of just self-inject, but I actually think even though the infusion is longer than one injection — like an injection it only takes like a minute, but I had to really amp myself up for that every time. And you’d feel the side effects four times a month, instead of once a month. Like with COVID they wanted me to stop my infusions and do injections and I was like, I’m experiencing the tiredness, but more often, so like, it’s just not ideal for me. So, yeah, Tocilizumab has been really great for me.
Cheryl: Yay! Oh, that’s so great to hear and yeah, I didn’t share too much about it because I wanted to wait until I tolerated the first couple injections, just because I didn’t want to have — like, I didn’t want to have to keep providing updates if I was having some sort of weird reaction or anything, but anyway, I’m so glad to hear it you know it’s working for you. I mean one of my educational missions is just helping people access like balanced information about the medications, because there tends to be on social media like — you tend to get the extremes, right, like the wonderful experiences but then also a whole bunch of stories about terrible side effects. And so, it can be hard to know what’s the average like, you know, most common experience.
But I think for the people who are really scared, which is totally normal to be scared, especially before your first medication. Like for some people, this is their first illness diagnosis, since maybe like an ear infection when they were little. So, for me it’s become so normal, you know, just, “Oh, give an injection, no big deal. Oh, add another pill, you know, I don’t really care.” Like honestly, I’m just very blasé about it.
Suruthi: I think the best thing to come out of my diagnosis is I think I am actually over my needle phobia, which is crazy. Because I remember at school, we had to have some sort of jab — I can’t remember what it was like, cervical cancer jab or something, I don’t know — but, I was literally running away from people. Like, I was literally screaming, and crying, and kicking, and I had four people, like four of my friends, hold me down while the nurse put it in and I spent like an hour crying. My needle phobia was really bad. But now I’m just like, I don’t like to look, I still don’t like to look, I just don’t see why you would want to, but I could do it. I don’t cry every time.
Cheryl: Yeah, that’s wonderful. Now, it is exposure therapy, it works. Yeah, oh, this is so great. So, I’m glad that’s working for you. Another thing I think people might want to know, is like, what is a day in the life like for you? I know that every day is probably a little bit different, but, you know, in terms of managing your JIA today, even though you were saying that you have pretty good disease control right now with your medications, but do you still do anything like a hot pack or just any lifestyle things?
Suruthi: Oh, yeah, I think when I say have pretty good control, like I still flare a few times a month, which is not really the best example of well-controlled JIA but considering how bad it was, considering being bed-bound most days a week, for me it’s freedom. And I really didn’t do well on my previous medications, so for me this is the best it’s been. But I still do a lot to kind of help with that, so yeah, I was actually thinking about this before our call. I do so many things to make things easier for myself in a way. So, like, every morning I fill up my flask with hot water, so the night before I will already like fill up the kettle with water so the morning I just have to flick the switch. Because with my hands recently, they’ve been feeling a bit weak, so sometimes I keep dropping things. That was for me like, you know, sorting it out the day before when I’m feeling better. I set my alarm for about 15, 20 minutes before I need to actually get up and shower, so I can get up at a time to sort of stretch my legs in bed a bit, because I find it hard to just — waking up is fine, but getting up is still a struggle. And I do some like CBD balm sometimes, I use heat packs or ice packs, depending on what type of pain because some pain I feel like heat packs help, but then some pain is like, it feels like my joints are burning in which I need ice.
Cheryl: Exactly the same for me, yeah.
Suruthi: But yeah, every day is different in terms of pain, but it’s just those little things that really helped me, you know, like, sort of planning ahead. If I’m not feeling great the night before, then I will plan my outfits so that I have loose bottoms, because I can’t tell you how many times I’ve tried to get into bottoms and they overnight don’t fit me because my knees are so swollen. Just things like that.
Cheryl: But they really add up. All the little life hacks or just adaptations you do during the day add up by the end, to where you’ve saved yourself a lot of pain and energy. So, that’s great. What about fatigue? I’m curious, do you struggle with fatigue at all?
Suruthi: Yeah, definitely, it’s one of the hardest aspects. Because when your pain levels are low, I don’t know, but for me, I’m just like I’ve got to make the most of it. I want to do this, this, this and this, this, this. Basically I’ve got like a checklist of things to do when I’m feeling better. But with the fatigue, I’m just like all I want to do is lie in bed. And then I feel a bit guilty sometimes ’cause I’m like, I’m not making the most of a low pain day. But yeah, the fatigue can be really bad, that never ending exhaustion.
Cheryl: Yeah. Personally I feel like there’s more like life hacks or tools for pain available than for fatigue, you know. It’s kind of like, you need to rest…?
Suruthi: Yeah, because even though I’ve had JIA since I was three, I didn’t know much about fatigue until literally last year when I saw on Instagram. I just thought everyone like in the world just felt tired a lot of the time, you know. I thought I was just well tired, like, I’m not sleeping well, that’s why. Okay, I only slept seven hours, that’s why. But now I realize it’s a kind of tiredness that sleep can’t fix.
Cheryl: Exactly. I didn’t know that my fatigue was from rheumatoid arthritis till I was like literally reading a textbook in my Master’s in occupational therapy program, and it was like the fatigue comes from the autoimmune nature of the disease. I was like, what? And I always joked that I was a sleep diva, like I always was very protective about my sleep, and I always made sure to get a good night, or try to get a good night’s sleep. But I could just see how — I mean, fatigue is different and very distinct from sleepiness, but adequate sleep can help your fatigue not feel as intense, to me at least. So, it kind of compounds. Like, lack of sleep compounds fatigue. Yeah, so, being really diligent about the sleep has helped, but yeah there’s just not — you know, I know that I talked to Jen Horonjeff, who does help people connect to research opportunities, and she actually has her PhD also, but she said that she is trying to push for the FDA to look at whether these medications can be approved for fatigue as well as pain. Because actually all the medicines for rheumatoid arthritis, they’re FDA approved for the pain and the underlying disease control but they’re not necessarily approved for fatigue. And they used to think that fatigue and pain both have the same underlying mechanism, like it’s inflammation from the autoimmune process causing both pain and fatigue, but it’s actually more complicated than that, right. Pain and fatigue can go together, or you can have one and not the other. And so sometimes, you know how like when your pain is totally okay but your fatigue flares up, or your pain flares up but your fatigue doesn’t flare up, and so I think people are still trying to figure that all, sort it all out. But yeah, I’ve always tried to ask about fatigue because it’s like the forgotten symptom, you know. And just because we need to wrap it up, sadly, because I want to talk to you forever, but is there anything else you wanted to like let the audience know, or share? This is your chance to go on any soapboxes you might want to go on, like, now that I have your attention, you know.
Suruthi: Yeah, for anyone listening, just keep going. Like, it’s so difficult, like mental health side of things as well, like, you know, sometimes it just feels like you’re in a really dark place, but things do get better. And I’m not saying that everything in your life’s gonna be fixed, but you will become stronger and feel more equipped to deal with that, like, one way or another, I think, things start to even out a bit. And I always think of it as like when something’s bad, like what goes down must come up, is what I say. Even though people don’t say the opposite. [Laughs]
Cheryl: Yeah, that’s true what goes up must come down, what goes down must come up. I love that. I love that. I love that one which was like, when you hit rock bottom, keep going, because it’s kind of like, okay, well then, there’s only one direction you can go now, which is yet back up, hopefully. I think that’s what that means.
Suruthi: I think so. [Laughs]
Cheryl: Is there any other — I just thought of this — any other like resources that you found helpful, and I know you mentioned Versus Arthritis, what was the other non-profit that you’ve helped?
Suruthi: Yeah, NRAS. So, it stands for National Rheumatoid Arthritis Society. They’re really good as well. They’ve actually got a whole week on this week of, you know, wear purple for JIA, like a well-being week in raising awareness, and they’re amazing. And their pages have a lot, and also just loads of Instagram pages such as yours.
Cheryl: Is there any Instagram pages that you love, like mine? But yeah, that’s great. I mean, I think people like hearing from other human beings, right. Like you were saying, we want to connect to an individual and share stories. I mean, I appreciate your page. You have a nice blend of humor. I think that’s often missing, right, because we can get so down about things and humor could just kind of shake you out of it almost.
Suruthi: Oh, 100%. I always say, if I don’t laugh, I’ll cry, so, you know, I’d rather laugh. And it’s just, sometimes it’s just good to take a step back and just take a more lighthearted approach, I think.
Cheryl: Yeah, totally. And so, I will be putting all these links in the show notes, but just to say it out loud, where can people find you on Instagram and other places?
Suruthi: I am @fightrheumatoidarthritis, and for the moment I’m only on Instagram, so you can find me there.
Cheryl: Well, I’m sure you may, if you do expand to like a website or anything else, I will be sure to update the show notes for that. But thank you so, so much for your time.
Suruthi: No worries, thank you for having me. I’ve been so excited for this.
Cheryl: Yeah, the day is finally here! I’ve been excited too. Okay, well, hopefully everyone can connect to Suruthi on @fightrheumatoidarthritis on Instagram. Bye-bye for now!
[Ending music]
Thank you so much for listening to today’s episode. This episode is brought to you by Room to Thrive, a membership and support community where you’ll learn how to develop your own Thrive toolbox so you can live a full life despite your rheumatic disease or chronic illness. Learn more in the show notes, or by going to www.myarthritislife.net. You can also connect with me on my social media accounts on Instagram, Facebook, Twitter, and even TikTok. Check out the links in the show notes.
