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Blog, Patient Stories, Podcast

What’s it like to be a Teenager with Juvenile Arthritis?

November 1, 2021
54 min read
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In episode 48 of the Arthritis Life Podcast, 18 year-old Natasha Trehan shares her journey from a diagnosis of juvenile idiopathic arthritis (JIA) at age 13 to founding the nonprofit Take a Pain Check in 2021. 

Natasha and Cheryl discuss her treatment journey, how her social life was affected by JIA, the importance of diet and stress management in her treatment plan, and why Natasha formed the nonprofit Take a Pain Check.

Episode at a glance:

  • Natasha’s diagnosis story and early experiences with juvenile idiopathic arthritis
  • Different treatments Natasha has tried, including steroid joint injections, methotrexate, biologic medications, nutrition and dietary changes, Ayurvedic medicine, meditation and other lifestyle changes
  • How Natasha’s mother helped support and advocate for her when it felt like “nothing was working” in her treatment plan
  • How Natasha navigates peer pressure to drink
  • Ways Natasha manages stress while living with juvenile idiopathic arthritis
  • The importance of cultural representation and what it means for Natasha to see other South Asian people in the chronic illness community
  • Things that bring Natasha joy, including singing
  • Natasha’s inspiration for forming the nonprofit Take a Pain Check
  • The importance of patient involvement in research and advocacy
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Speaker Bios:

Natasha Trehan is an 18-year-old, young adult from Ontario, Canada studying as a first-year student at the University of Ottawa in the Biomedical Science Program. She was diagnosed with Juvenile Idiopathic Arthritis at the age of 13. She promotes self-advocacy and strives to empower youth and young adults diagnosed with rheumatic diseases through her podcast Take a Pain Check. Updates are regularly posted via the podcast Instagram @takeapaincheck_

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

Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis. 

Episode links:

Join the waitlist for Rheum to THRIVE,  6-month education and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. The next group starts in Spring 2022!

Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis. 

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 Transcript:

Cheryl Crow (00:00):

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, to how to respond. When people say 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 Crow (00:50):

Hi, Natasha. Welcome to the arthritis life podcast.

Natasha (00:54):

Hi, Cheryl, how are you? Thank you for having me today.

Cheryl Crow (00:57):

Thank you so much. I’m great. I’m excited to hear more about your story. So can you just give us a quick introduction and explain a little bit of your relationship to arthritis?

Natasha (01:06):

Yes. Yeah, for sure. So my name is Natasha. Um, I 18 years old, I live in Toronto, Canada. I attend the university of Ottawa for biomedical sciences and French immersion. So I am a first year student and it’s definitely a little bit of a challenge, but it’s fun. My relationship to arthritis started in 2016 when I was 13, I was playing tennis. I really liked tennis, uh, as a child. So I was playing tennis and all of a sudden I could not lift up the tennis racket anymore. And the tennis ball was so hard to even pick up or play with. And everyone around me, they were really supportive, but I just like didn’t know what was going on. My fingers started to swell up. My wrist started hurting and I was like, I’m just going to tennis class to play. And everything’s hurting now all of a sudden. So my parents actually took me well, I had to kind of convince them that this was more than just a sprain. Everyone thought it was a sprain. And so I was complaining to my friend at school and she was like, you have to get this checked out. So I went to the doctor, did some blood tests, x-rays, you know, the fun stuff and then got diagnosed with juvenile idiopathic arthritis. Wow.

Cheryl Crow (02:17):

And was that a shock to you and your family when you got that diagnosis?

Natasha (02:21):

Yes. I remember my mom was picking me up from a school in grade eight and she was literally, we were in the parking lot and she told me, and I literally started crying. Cause it was like, I have no clue what this is, but it sounds really bad. So I started crying. It was a shock to everyone in my family because we don’t have any like genetics or any one in our family history that had arthritis that we know of. So it was kind of like a shock knowing that, you know, a 13 year old child of ours has arthritis and we have no idea. Like I was a really healthy kid as well. Like I wasn’t eating candy every single day, all day. So it was like what’s

Cheryl Crow (02:58):

Happening? Yeah, no, that’s, I think that’s such a common response, especially for people that, like you mentioned, you know, you’re really active, like you’re taking good care of your health and then to just be hit with this diagnosis seemingly out of nowhere, especially when you were thinking like your parents were thinking, oh, and most people would think, oh, you know, a 13 year old with hand pain. It’s probably a sprain. And that’s actually when I was 20 and I started having hand symptoms and I was a soccer player, even though we don’t use our hands, but I assumed that I just like fell on my hand and forgot. Like I just was like, oh, this is just some injury. Like you don’t your mind, doesn’t go to an auto-immune disease that causes arthritis in the joints. And I’m curious, um, a little more about like how you adjusted to the diagnosis and what were some of the treatments that you tried as, as you, yeah. Right after you’re diagnosed. So

Natasha (03:53):

Honestly took a really long time to find a medication that works for me. It’s been five years actually. It’s probably like my five-year anniversary sometime this month, but it took a really long time to find a medication that worked for me. I tried first like prednisone, which is a steroid methotrexate, uh, Humira, some biologics hospitalist. And now we kind of reached the adult medications where it was like, nothing’s working. We don’t know what to do. And thankfully after three and a half years, my pediatric rheumatologist was like, let’s get joint injections. Cause at least it’ll kind of reduce like what’s there physically. So we did that and it definitely did help, but joint injections only stay for a while. So it helped. And in the meantime, we were kind of looking around for other medications, someone brought up something called triple therapy. So I am currently on that and it has been working. I did have to get joint injections again, unfortunately this year. But with this combination, it’s really been helping me a lot on, so I’m on methotrexate, sulfasalazine and Plaquenil, which everyone probably knows about Plaquinel cause of COVID. But yeah, those are the three meds I’m on. Um, in terms of like kind of the medication portion of how I have adapted to it.

Cheryl Crow (05:12):

Well, and that is a lot for, for five years. I know that doctors are trying to study like with better, it’s called like precision medicine to figure out like, why do some people like, like for me, I, when I was put on what’s called a TNF inhibitor, tumor, necrosis factor, inhibitor, Enbrel, alongside methotrexate. I did really well for the first seven years. And some people try a TNF inhibitor, like you tried Humira and it doesn’t work. Like they want to fit. The doctors want to figure out before they put you through trying when that’s not going to work. What is the difference between the people who it works for and the people who doesn’t. And unfortunately it’s just not really known right. Yet completely. But, um, I’m so glad that the triple therapy works. It’s good to mention the triple therapy. Cause I know I do a lot of education and kind of a sharing of my story with biologics working well for me, but they don’t work for everyone. So like you mentioned, you know, and I want to circle two really quick. I’m sorry. I want to make sure we explain what joint injections are, where those cortisone injections.

Natasha (06:09):

Exactly. Yeah. So when I was, I think in grade 10, so I mean university right now I’ve always given joint injection. So it was put under anesthesia and what they did was they put like predni-, I mean, uh, yeah, corticosteroid injections into my joints. And I actually had prednisone like the liquid version of it before that didn’t work. But they were like, if you physically put it in like steroids in your joints, it might be better because you’re actually like putting it directly there. Um, it hurts like crazy. Like if you can handle that, you can handle anything in your life. But yeah, I did that twice actually. So you’re not supposed to have so many joints, but at that point they were so desperate to get swelling under control. So I had them all injected with steroids.

Cheryl Crow (06:53):

I’ve only ever had an, I had one injection in my base, uh, the ball of my foot and one in the base of my thumb. And those are hard to do because they’re such tiny areas, but I was awake for both of those. But it sounds like you’re saying that you were, were you under anesthesia for both?

Natasha (07:07):

No. So since I was like a kid in the time I had it, uh, and so that was when I was like at sick kids, the hospital in Toronto, and then I had 10 joints injected. So that was like, you had to go undergo anesthesia. But recent one was obviously I, I, I was 18, so they referred me to adult rheumatologists and she did it and she did it really well. Like I was terrified because of the first experience, but it went really well,

Cheryl Crow (07:35):

So good. You have been through a lot. Gosh. And I wanted to ask about how it might’ve affected your social life. Like, I mean, just in the last five years, between 13 and 18, what were some of like the highs and the lows? I don’t, I don’t want to just say lows, but I’m sure that there were some highs and lows about like, you know, explaining it to friends or people maybe understanding or not understanding.

Natasha (07:57):

Yeah. So what I did alongside medication was eating healthy and incorporating like a healthy lifestyle. And I think that was the hardest part to explain to people because it’s like, you’re a teenager and you want to hang out with your friends, eat that pizza, but you can’t eat it. And so that was the most challenging part, but my friends in high school were so accommodating and they really try to understand. So they came up with so many alternative things you could do, like we could bring our own lunches, so I wouldn’t feel left out. Um, and then just like activity wise. So they’re really nice. I think my fear now is I’m going to university and I’m in university. But when I go in person, I feel like re-explain my life story again, which is, you know, kind of hard sometimes because you don’t want to go through the same thing, but in terms of like social life, I think my friends have been freely really helpful in accommodating. There are people out there that haven’t been the nicest and that’s okay. Like that’s why I don’t talk to them is what I’d say. But yeah, I think in terms of like food and the things that I can and can’t do, my friends always accommodate me, which is really nice about,

Cheryl Crow (09:01):

Um, that’s, that’s so great. You know, cause people have asked me, especially about drinking, like drinking alcohol, cause um, it was the age of drinking 18 in Canada.

Natasha (09:09):

It’s 19.

Cheryl Crow (09:11):

Oh, okay. Yeah. Cause people ask me about peer pressure and I’m sure they’ll ask you too about, you know, when you’re on Methotrexate that you’re not supposed to drink very much alcohol. And I always said, you know, my friends didn’t make a big deal out of it. I mean, I got diagnosed right before my, or right after I was 21. So that’s the legal drinking age here, but I just would go to the same parties as everyone else. I just would drink water or Sprite or, you know, and, and, but some people say, oh, that’s not the norm. 

Or, you know, that’s too much of like a Pollyanna story. I’m like, well, it’s my story. I mean, that’s the reality that I lived. And so it’s good to know that you have. And I, my friends have always been really accommodating too. So I feel like I don’t have as much of a pain of, um, what’s the word, like Rocky story as some people. So it’s good to hear another story of, you know, Hey, you know, sometimes friends are good friends and I’m really glad you have a good pack. It’s true. What they say, Canadians are really nice. Not just kind of,

Natasha (10:03):

Yeah, Adam, you just said about like the alcohol part. Like I haven’t experienced that yet and it might happen. And so when it does happen, I need to be an advocate. Like I haven’t experienced it where my friends have said anything or anyone and my friends know my medications and they know like how it kind of works, but in the future, you’re right. I’m going to make more friends and they’re obviously gonna be like, Hey, let’s go for a drink. And I need to kind of stand my ground at that point, but it’s not there yet.

Cheryl Crow (10:31):

Yeah. And it’s, and you know, you also like are, I’ll just give a little unsolicited advice for anyone listening. Like sometimes we’re, so we want to do so much advocacy about our condition and, but we don’t always need to explain the whole reason sometimes. Like I would just say, oh, it interacts with my medication. I don’t need to explain that it’s medication for rheumatoid arthritis and the rheumatoid arthritis. Isn’t just arthritis, blah, blah, blah. Like of course being me, I always do talk too long and too much, but I have found it easier just to be like, oh yeah, you know, I can’t have it right now because my medication, but you know, I’m still hanging out. And most people, I mean, again, most people it’s like, they’re people are worried about themselves. Like they’re most people are kind of self centered, so they’re kind of like, oh, okay. More alcohol for me, you know? Yeah.

New Speaker (11:18):

And you mentioned, you know, um, healthy eating as one of the ways that you help manage your condition. Can you explain a little more about like, how did you find the non medicinal ways to manage? I’m curious how you, because there are so many, right. Like I always say, I get overwhelmed. Is it vegan? Is it anti-inflammatory general diet? Is it Mediterranean? Like what’s gonna work for me. So how did you, how did you discover what eating pattern worked for you and what other lifestyle changes helped?

Natasha (11:45):

Definitely say it’s all my mom. She figured every for me, I did absolutely no work or effort to figure out what would so credits to my mom. But aside from that, we tried everything. Like honestly, everything, we went into India to try, like there’s something called Ayurvedic medicine. So we tried that, we tried acupuncture, homeopathy, natural, fatty, like everything possible. We spent money and tried it. But, and at the end, what I realized was it was just like, you know, exercise, which I suck at what that healthy eating and alongside medication, you know, like I realized it did take over the long time to figure it out in the past, like five years, we kind of tried everything.

New Speaker (12:29):

And so right now I am vegan gluten-free I don’t have any, um, processed oils in my diet and I try to stay away from sugar. So that’s helped. And it’s actually helped a lot. Like, I feel like I can really move now. Like I would say five years ago I could not move and now I can walk, I can dance. I can do what I want to do with the healthy diets. So, and it’s not even diet people. Don’t like the term diet. So I’d say lifestyle change.

Cheryl Crow (12:57):

Yeah. Thank you for mentioning that. I know I’m trying to change it to say like eating pattern or nutrition. Cause it’s yeah. I don’t like the word diet. Yeah. That’s so vegan and no processed oil and not a lot of added sugar. Can you eat fruit? Like natural sugars? Oh, sorry.

Natasha (13:15):

I also include in phrase, so that’s been, it’s it’s challenged, but honestly you can make such good food and I don’t cook, so my mom makes such good food. So I’m just like, honestly, everything’s because of her and she’s really supportive. She’s also on the same diet as me. So I don’t feel like I’m alone. So then been doing that, Emma, my family’s kind of incorporated like vegan, but you know, my brother goes to school and there’s food there, so he just eats whatever. But he really tries like when we’re at home, we don’t bring anything to the house. So yeah.

Cheryl Crow (13:44):

Yeah. Oh, that’s so wonderful. It’s such a, and I know I studied as an occupational therapist is what are the factors that help people maintain the healthy lifestyle changes for all conditions, chronic conditions, whether it’s, you know, juvenile idiopathic arthritis or diabetes, and it is having family support or loved ones support the people in your immediate living environment, like makes the difference for so many people. So yeah, I’ve been gluten-free and you know, I always say I don’t notice a difference with my joints, unfortunately, but I do notice a difference with my digestion. And I do know that the gut and immune system are very closely connected.

New Speaker (14:20):

So potentially if I went back on gluten, it would be worse. I’m not positive, but it wasn’t like, you know, some people go gluten free and then four weeks later they’re like, oh, I can move. You know, like it wasn’t dramatic like that for me, but I’m glad. I’m so glad it works for you along with being vegan and low processed oil and low sugar. That’s the nice, elevated try that I don’t eat. Like I do try not to overdo it with sugar, but I definitely don’t underdo it either. It

Natasha (14:50):

Won’t be like, you know, just like the normal sugar and like, I wouldn’t go and eat candies and stuff, but you know, sometimes when you have like gluten-free and like vegans cereals, they put coconut sugar sometimes. And so like, that is not the end of the world. I’m not on that right now. Like right now I just eat like very clean because over the summer, you know, it’s on like wrong things and that

Cheryl Crow (15:10):

Really hit hard and it wasn’t like an easy process to figure out the diet, healthy lifestyle change. Um, it took like a really long time. And now I kind of know, like if I eat something not as healthy, I know how to go back and I know how my body works. So that’s what I’ve realized is no, that’s so, so amazing. Like I know we had the most popular episode of this podcast is the one on like myth versus fact for diet and nutrition with, for rheumatic disease. And we had, uh, Christina Montoya who’s who has rheumatoid arthritis and she’s a registered dietician and a couple other Jennifer Tharani, who’s the chronic pain nutritionist. And both of them make a, and Kia Peters’ too, but they make a really big point to say that, you know, there’s no one size fits all. Like the triggers are very individualized. So sometimes people are interested in trying a healthy eating pattern and they try one and it doesn’t work. And then they like throw out the whole idea of nutrition and eating patterns because they’re like, well, I tried, you know, the autoimmune protocol and it didn’t work. So no diets are gonna work or no nutrition plans are gonna work, but it’s actually like, okay, if you try one, it doesn’t work. There are still others to try, you know, so for sure. So box,

Natasha (16:26):

I really liked the elimination process. I don’t know if you’ve heard of it. It’s hard to deal with, but definitely laying out, you know, adding foods to see what happens. I think in my experience, I’ve found that to be really helpful to figure out what works for me, but you’re right. Not everyone’s body has the same lifestyle change that it could actually be having a positive effect on. So it’s definitely important to not give up.

Cheryl Crow (16:51):

Yeah. I mean, it really sounds like your mom is like the VIP here, but you’re also a VIP, a very important person for sticking with it because there are definitely people who, you know, especially in their teen years, if their mom was trying to help them with nutrition and lifestyle changes, they would be like, stop mom. I don’t want to, you know, so give yourself some credit to,

Natasha (17:12):

It was really hard. I mean, like, especially 13, I literally ate everything. Like even if it was like, if it was healthy, like I could still eat like, you know, cheese, like things people would eat. And it was definitely a hard to, you know, feel like, okay, I can’t eat this anymore. And so like my friend, what she did, and we had pizzas on Fridays at school, she will turn around, eat her pizza. And then that’s when pizza, cause she felt so bad for me, but like, it was just, it was a hard thing to do, but I realized how much it’s actually helped me. So I just, you know,

Cheryl Crow (17:45):

That’s yeah, it is. Especially if there’s a severe relationship between the food you eat in a flare up, it makes it easier actually to stick with it. That’s how I am with my stomach too, when I’ve accidentally had gluten and like, oh, I feel so awful. You know, my stomach has just totally just bloated. And so yeah, it makes it easier. And then I know that you’ve done some other lifestyle changes, like, you know, meditation or stress relief. Can you talk a little about that?

Natasha (18:11):

So I was always really stressed when growing up, like anything, everything stressed me out. Like my brother, he always stressed me out for no reason. Like he didn’t bring back his lunch bag or something from school, I’d be stressed about it. I feel like if I think about like what kind of triggered my arthritis, I’d say like potentially stress because I was always stressed in general and a lot of things, like I moved from private school, public school to private school, which was like a totally different change. And I don’t know, my sister kind of introduced me to like mindfulness and like meditation and she does it a lot when she’s stressed. And so I listened to someone, his name is Deepak Chopra and he kind of like collabs with like Oprah and like, you know, a bunch of other celebrities. And it’s really interesting because I, I had like a routine of doing it.

Natasha (19:03):

Obviously school’s busy sometimes I forget, but you know, I think listening to it’s just 20 minutes. So just listening to it at night is something that I do. And I feel like so much better when I’m stressed, when I listen to it. And especially like first they talked for like 10 minutes and then they have like just music, like calm, peaceful music, and it’s not long at all. And you kind of like, you know, fall asleep at the same time. So it’s really nice. Um, so I’ve been practicing that. I also think that I’m less stressed than I used to be only because I find things that I like doing. Like I like singing, I like music. And so I’ve been trying to do that more often. And I find that when I do something that I like, I feel less stressed. And so those are kind of the things that I’ve been working on and doing to make sure that, you know, my mental health is okay.

Cheryl Crow (19:47):

That’s so great. I really loved your point about like that stress relief. Doesn’t always have to be about like, I’m going to do X activity in order to feel less stressed. Like I’m going to meditate to feel less stressed, which that’s one approach. But another one is like, you know, like they say happiness as a side effect of engaging in something that you find enjoyable. Right. So you don’t just say, I’m going to do this to be happy. You’re like, oh, I just really, I enjoy singing. And then the effect of that is, you know, feeling a better sense of wellbeing and the sense of, you know, happiness and decreased stress. But sometimes if we, I don’t know, this is just my personality. Maybe it’s cause I’m a little bit type a, but when I used to try to do things like specifically to feel less stressed, it would almost be counter.

Cheryl Crow (20:31):

It would be counterproductive because I’d be like, I need to just meditate for 10 minutes and I’m going to feel better. And then I would try and then like, I’d be like, I don’t feel better. This is dumb. And it’s funny because my son is the exact same way. Like we’ve tried things like, you know, when he was younger, like maybe five or six we’d do like, let’s take five deep breaths when he was feeling angry. And then afterwards he’d be like, I don’t feel better, you know? And I was like, oh my gosh, you’re so similar to me. You know? So, um, I think it’s again, just knowing your personality and knowing what works, but like in occupational therapy we call it like engaging in meaningful activity, which is like a flowery way of saying like doing stuff that you like, you know, that you find meaningful. And I do think that after having an autoimmune disease or rheumatic disease, sometimes people get so caught up in like being the perfect patient and like finding the perfect, healthy lifestyle that they forget to do the things they love. So I love that. Do you sing like in a choir or anything or just on your own? So

Natasha (21:25):

I went, well, I’ve been singing since I was really young and I went to lessons stuff. So I went to his specialized like vocal high school. And so that was really fun for four years. I just like, same with my friends. I made like the best friends there because we all had like similar talents and passions. So we did like choir, competition, singing competitions. I’ve done those. And I sang for like festivals sometimes. So it’s been really fun. Definitely. Like, cause I’m studying science right now. I don’t get that much time to sing because it’s so busy, but I make an effort to go to singing classes every Saturday because I’m at home. And I find that that’s like the day where I feel so much better and it’s not because I don’t go there because I’m stressed that I need to think it’s because I liked singing and it’s just like a part of my routine now. And so I’ve been singing for a while and it’s really fun. A lot of people don’t know that about me cause I’m just like podcasting. Instead

Cheryl Crow (22:17):

I was going to say, wait a minute, season four. All seeing podcasts. No.

Natasha (22:24):

Well, yeah, it’s, it’s definitely one of my passions that I really enjoy it. Oh, that is so cool.

Cheryl Crow (22:28):

What style is like, what your favorite? Like do you seem like pop music?

Natasha (22:32):

I really liked pops music. I also sing, um, sometimes like some Indian songs I listened. Um, and I also did like classical singing in high school. So I don’t love classical music, but it is something that I sing all the time because I do like exams. And so, but I definitely would say pop music is my thing. It’s probably cause it’s always on the radio and I always like let’s say

Cheryl Crow (22:58):

Yeah. Oh no, I am the same. Yeah. I love, I love pop music. That’s so great. I do think music can be very therapeutic even if you’re not singing. Just listening to music. There’s yeah. There’s some really interesting music therapy research on like the effect of music on like our stress relief for even if you look at people with like advanced Alzheimer’s, they might sometimes not like recognize people or be able to regulate their mood very well. But when you put music on, they can like immediately change their emotional state. It’s really fascinating. So yeah. I didn’t know that about you. That’s so cool.

New Speaker (23:34):

And so earlier you mentioned like going to India to try Ayurvedic medicine and sometimes you sing classical Indian songs. And one of the things I want to just acknowledge that I’ve talked about in the podcast with like Sukhjeen from Chronically Brown and Suruthi from fighting rheumatoid arthritis, is just that the chronic illness communities online are like very like predominantly white and female. So is there anything you would want to share with the audience just about, you know, what it’s like being someone of like, you know, Indian background with this disease?

Natasha (24:06):

I think that, like you mentioned, I don’t see that many Indian women or girls out there kind of portraying or explaining their chronic illness. And it’s really important that we do that. And I think that was sort of one of the things on why the podcasts Take a Pain Check was created and we can kind of go into that later, but it was because we had most, mostly we see more, you know, white people, not brown people. And it’s hard sometimes because sometimes you feel like there’s superiority or inferiority and it’s, it’s really hard. But I think in terms of the support that I’ve gotten, nothing has changed. I’m I feel like in the community everyone’s very inclusive. So even though you’re of a different race or ethnicity or background, no matter what everyone is very inclusive and the chronic illness community, just very hard sometimes to find people out there, uh, with the same background or ethnicity as you, but that doesn’t mean that you aren’t supported and you’re not equally as important. So I haven’t found like any barriers to that.

Cheryl Crow (25:12):

That’s really good to hear. Thank you. Thank you for sharing that. And I did want to give you a chance to tell the audience about your podcast, take a and your nonprofit take a pain shot. Can you explain a little bit more about what inspired you to start take a pain check?

Natasha (25:27):

Yeah, for sure. So this is in March of 2021. And prior to that, the other co-founder of take a pain check Trish Peters. And we were volunteering as tag leaders, which is like a teen arthritis group leader for casting friends, a charity organization for youth. We came across many discussions about the fact that there are a lot of teenagers that don’t know how to advocate for themselves. And that was a big challenge. And on top of that, we’re both of Indian background and cultures are like, let’s come together and do something like we have a lot of similarities and we want to kind of, you know, all the experiences that we went through, we felt like we needed to make kind of the world and the chronic illness community a better place and make sure that no one had to go through the same thing as we did.

Natasha (26:14):

So in March of 2021, we launched a podcast, Take a Pain Check, with the goal of, to the goal was to really empower youth and young adults to advocate for themselves and also provide like resources and different perspectives and experiences. And so we hosted 26 approximately episodes together. And since September, 2021, I hosted well have been hosting five podcasts already have been completed by myself. So I’m the new host of take a paycheck. And two weeks ago, take a fan check is now officially registered as a nonprofit charity organization. And I’m the founder for that. So that’s been really interesting and I’m excited to see kind of how it grows because right now it’s just a podcast and I want to kind of see like what the direction will be. But I do think that it has helped a lot of people. So yeah,

Cheryl Crow (27:02):

That’s amazing. I’m rolling. Just in our view again, I’m sure you hear this all the time, but you know, at such a young age to have not only produced this podcast, but also registered and successfully registered a non-profit that’s a lot, that’s a lot of accomplishments along with, you know, studying biomedical sciences, which I know is a very busy degree. So I think it’s wonderful that you’re, you know, so passionate about, about helping teens. And I wanted to hear a little more about, you mentioned that a lot of teens didn’t know how to advocate for themselves. Do you remember any examples of things that you heard them saying or like examples of people not advocating for themselves very well. So

Natasha (27:45):

During some of the events that were held at Cassie and Friends during the pandemic, we found that a lot of people were not coming to our events because, you know, first it’s online second, like no one really wanted to talk to each other because we felt like the loneliness for a really long time. So at the Toronto events online, no one really showed up. Like it was just the organizers. And so we, it was, we kind of came to a realization that it needs to be more than this. Like we can’t just be trying to host events and no one’s coming to our events because you know, and what I’ve received from the podcast now are a lot of messages on Instagram and a lot of youth coming and saying like, this has really helped them a lot. And not even that, like some researchers have come up to me and said, like, we didn’t even know that there’s a youth perspective.

Natasha (28:34):

And the youth think like this and young adults are having this perspective, like we’re doing research on them, but we really enjoy hearing the other side of the story. And so I found that a lot of people have been really coming, you know, to the forefront and saying, and mentioning that this has really helped them advocate. There is one other person that I recently talked to and she mentioned that she’s been really in awe of take a paycheck and she wants to advocate now and take a paycheck has helped her because, you know, we’re just teenagers living with reviled diseases. And a lot of teenagers are this and young adults are the same age as us. And when you see other young adults advocate, you’re like, I want to do this too, because you know, I’m not scared anymore. And so I’ve found that in the past few months, a lot of people have been starting to do that. I don’t know if it’s because of me, but you know, some people have said that. And so, yeah,

Cheryl Crow (29:25):

But that’s incredible now. And I think that’s one of the best things about this is gonna sound really weird, but because I’m, I’m 40. Okay. So I grew, when I was diagnosed, there was no, the internet was not what it is now. Like, and there was no social media, like literally the year before, like there was just like Facebook was just being invented. And I joined something called Friendster, which was like pre-Facebook and there was MySpace, but like, there just wasn’t like, I, it didn’t even occur to me when I was diagnosed at age 21 to like fi go online and find someone else in my condition. Like, I didn’t know a single person with my condition for like seven years until it got worse after my biologic more often, that’s my story. But, um, then I started volunteering with the arthritis foundation. I was like, oh, there are other young people.

Cheryl Crow (30:11):

So now this, the world is so different. You now, you know, 20 years later that you can just connect so easily online and connect through a podcast, connect through research and events. I think that’s so exciting. And I think it’s true that, you know, you know, teens don’t always get a voice, you know, you get the little, little kids, everyone wants to hear from the little five-year-old, you know, and then everyone wants to hear it from like the mid twenties person who kind of has figured things out. But that in between period of like your mid teens to young adulthood, it is such a, um, important area.

Natasha (30:48):

Yeah. And something else that kind of, I think spark take a pain check was the amount of times that like, even as a teenager, when I was 13, I went on Facebook and it said the group chats, kids get arthritis, but it was parents or older people running those nuts. And it wasn’t any teenagers you could find that were in those group chats. And I just found it really frustrating because it’s like, you’re saying, I understand it’s like a parent support group, but you’re naming it. Like kids get arthritis and all of the kids, the ones that say like, oh, kids can talk, blah, blah, blah. It was just parents and adults telling, you know, what’s going on in their kid’s life. And I felt like now we need something where young adults and youth come and they talk about what they’re feeling, because that’s so important. And sometimes it’s disregarded maybe, maybe just like a lot of the time it’s disregarded. And so I find that podcasts like these and all this kind of gives a different perspective.

Cheryl Crow (31:44):

So, so true. And you mentioned that there’s been a lot of positive responses so far. Do you have any examples? Oh, you did already says share an example of people who’ve said that they feel more open now. Yeah.

Natasha (31:58):

Yeah. Do you want specifics?

Cheryl Crow (32:00):

Yeah, sure. If you are, if you’re comfortable sharing. Yeah.

Natasha (32:03):

Right. It sounds good. Just give me one second. Yeah. Yeah. I know that one today, which is very interesting. Oh,

Cheryl Crow (32:11):

Good.

Natasha (32:12):

Yeah. Um, so recently on our last most recent episode on Take a Pain Check, which I’ll just pause in one second. Um, we just got a comment from a mom and she said, absolutely loved the podcast. And the mom, you interviewed your questions were great. JRA is truly a family disease. This mom is me 36 years ago when my daughter was diagnosed, I not see much changed. And they’re kind of just saying like they were saying how amazing it was that the mom was in the podcast episode was able to share so much. And she found it really relatable and that’s in the common session so people can check it out. But I also recently found like a youth who actually messaged me.

New Speaker (32:57):

And I was like, what? I didn’t know that people felt this way about the podcast. And so I’ll just quickly read that too. She said, you’re so inspirational. I hope that none of you look and just take a second and listen to what people are going through spreading awareness and showing people that it is okay. And fund that there are people just like you, that are going through this, keep up the good work. And there should be more people like you in the world who wants to make a better place. And I was like, what?

Cheryl Crow (33:23):

That’s so nice that you’re going to get so many of these. You need to start printing them out and putting them on your wall or

Natasha (33:29):

On this wall.

Cheryl Crow (33:31):

Yeah. That’s no, that’s amazing. I think it’s just the power of storytelling, right? The power of feeling seen. And I think so many people feel like they are the only one, you know, like, oh, I’m a freak because I’m worried about this. Like I just posted about methotrexate because so many people are worried about taking it or scared to try it. And so many people said, like I thought I was the only one I thought I was being weak, you know, so, and like, you know, I just think it’s great. Uh, sorry. I feel like I’m not saying anything intelligent. I’m just like good job.

Cheryl Crow (34:02):

Keep up the good work. Yeah. And I’m curious, like I think other people in the audience might be wondering, cause I think a lot of them are kind of smart in their thirties potentially in forties maybe, but probably we got some young people listening, but what, what do you think has allowed you to feel comfortable sharing? Um, because I know some people have shame around having a chronic illness or they just are shy. Like I’m not shy. So, but I know most people are a little bit shy about just talking. Like, have you always been just open and you know, to public speaking and stuff? No. Okay. So yeah. Tell me about your evolution.

Natasha (34:39):

Um, I never wanted to put it out there ever, like ever. I was like, there’s something I don’t want to talk about. My friends can know what it is, but it’s not something that I want to, you know, like make a podcast about a nonprofit. No, thank you. Like, I was scared to tell people about my arthritis because in grade eight I dealt with so many like awful comments from people. And I was like, you know what? Like, I’ll just keep this to myself. But through Cassie & Friends and through, you know, kind of advocating and making events for other kids that had arthritis, I was like, okay, I gotta go. I kind of got convinced by the people in there. And they were like, you gotta like, let’s start advocating for others. And that’s when the podcast started. So the first time I just started like putting it out, there was this year, March 20, 21.

Natasha (35:24):

So it’s not like it’s been like a really long time. And sometimes I post on my story just, you know, to put it out there just to be like some promotion, but I still pray sometimes I’m like, please make no one sees this. Like, I don’t want this, but you know, sometimes I just I’ve realized that yes, sometimes I think that way, but I suppose it, because at this point in my life, I feel it’s like, if you have an issue with it, then like you don’t belong in my life. I’d say like, if there’s any problems. So, and I also think advocating is really good. And not only are you helping like yourself, but you’re advocating for other people and you’re advocating for a good cause. And so I think aside from me feeling like I’m terrified, I think now with the podcast it’s out there. So if anyone has a problem, I can’t do anything about it. And that’s, that’s just like, I don’t, I don’t know. It’s definitely changed. And it was only this year. Those are advocating. So it’s not like it’s been a very long time that I’ve put up.

Cheryl Crow (36:26):

Yeah. No, but I think that’s so many good points in there. One of them I want to echo is like sometimes, actually just the act of putting something out there and realizing like, what is really the worst that could happen. Right? The worst is you’re going to get some trolls saying like, you don’t really have it or you just need to try this herb or something. And then you’re like, okay. Or like on Tik talks. And I was, I get comments that are like, you’re weak. You shouldn’t have to use like a jar opening aid. I’m like, okay. You know, but that, all these things we’re worried about happening when they actually happen. And you realize, well, the world keeps spinning. You know, it’s not actually that big of a deal. So I mean, again, not to minimize people, who’ve been like, seriously, like, you know, hurt by things.

Cheryl Crow (37:07):

People have said online, but yeah. That’s, I mean, I think that’s such a unique perspective cause you, your evolution towards being open is so recent. Like it’s still fresh in your mind. So I think that’ll be inspirational to people to know that like again, like I’m just, I’m just a little bit freakish in that. I’ve always just been like, not afraid of public speaking, not afraid of being, you know, the center of attention. I joke it’s cause I’m a middle child. So I always had to be like, here I am, look at me. Otherwise you get overlooked.

Natasha (37:34):

I also middle child. We don’t feel that way. Like you have no reserves. It’s been different. Especially like now I have like a nod. This is like really weird. I made a text talk about it, but it was like, and I think you might’ve seen it as well, but it was like, oh yeah, like me worrying about, you know, telling people about your chronic illness and now started a nonprofit charity organization about arthritis. And it’s funny to look at it because sometimes I’m still afraid. And I still wonder like, what are people thinking of me? And it’s awkward sometimes because sometimes we’re just like check your Instagram stories and they see that you’ve mentioned your arthritis, but you haven’t actually told them. And so you get into the awkward situation where they know about it, but you haven’t said it directly.

Cheryl Crow (38:18):

Totally. Yeah. I totally know that feeling. It’s it’s definitely, it’s, it’s definitely interesting. Like I think even me being an out there person, I didn’t talk about my arthritis that much in the past either like an and I think I just was a little worried people would judge me, you know, I would talk about it like in really specific contexts, like volunteering for the Arthritis Foundation in the US but I was, or I was just, I don’t know, you don’t want to be seen as weak, you know? And, and I think it’s such a paradox that actually, when you share about it, people actually the right people like, think about you as actually strong, you know, for being open enough to. So although we shouldn’t define our worth based on what other people think of us, but

Natasha (39:00):

It’s normal. I feel like it’s a natural human thing to do. Like you’re always in the back of your mind worrying about what other people think.

Cheryl Crow (39:09):

Yeah. And that’s actually, that comes back to acceptance. Yeah. I’m very big on acceptance. Just accepting that. Yeah. I’m a human, I’m a social creature. Like of course I’m going to worry what others think of me, but not letting that stop you from doing the things that you’re passionate about. Um, in this case, like advocacy and sharing stories. I think that’s so great. And the other thing I wanted to make sure to ask you about is, um, you’ve been a part of some patient partnerships and research projects. Can you share a little bit more about that?

Natasha (39:36):

Yeah, for sure. So when I was getting my joint injections, actually it’s like life changed that day. I saw a lot of researchers come up to me and ask me for my blood saliva and urine samples. And I was like, okay, like, why are they doing this? And so I asked them and they’re like, we’re putting this in a bank. And I was like, why are you just like storing it? Right. And I found it really interesting that they’re really doing research on all of this. So I actually approached them. And from there I reached out to organizations and like support groups and some research projects that I got involved in. And so I’ve been doing that for the past year and a bit, and that’s been very interesting, still keeping me going. And it’s kind of like sparked my interest in pursuing a career in the medical field, in the future.

Natasha (40:22):

And so I’m currently a part of like several research projects and I can specifically give some examples. So there’s like the JIA option map, which is really interesting. Um, pretty much the research project is that they’re trying to find alternative therapies and kind of when you go through the, uh, the application, so it’s a website, then you’re able to, you know, pick what you want to do, like physio therapy, whatever you want to do. And then you’re able to bring it to your doctor and have a comfortable conversation with them about like, this is what the research project said, blah, blah, blah, how those comfortable conversations. So I’ve been working on that with an amazing group at the university of Ottawa, which is where I studied. Um, I’m also part of this like pacer program through the university of Calgary, um, in Canada. And it’s basically where patients do research on patients.

Natasha (41:07):

And so I’m conducting a research study about the transition from pediatric to adult care with five, four other members that also live with JIA, which is really cool. And we’re conducting it on patients that have JIA and about their experiences. So that’s been really interesting. And then over the summer, I was a research student at a research hospital called university health network. So that was really fun. And so I’m really enjoying working around the topic of like arthritis, cause it’s kind of like studying your own disease and figuring out like, you know, things that I wish I had working on it for the future.

Cheryl Crow (41:41):

That’s, that’s so wonderful. And I think I’ve noticed that my friend um Eileen, Chronic Eileen and in Vancouver, she’s often posting about research in Canada. It seems that Canada might be a little bit ahead of the U S at least from what I’ve seen in terms of engaging patients in research, because I think that’s so, so important. And I just, I can’t wait to hear the results. I’m really curious about the one from the pacer. One about the transition from paeds to pediatric care to adult care.

New Speaker (42:11):

And I actually meant to ask you that earlier. So I’m glad you triggered my memory. What was your transition like from being a PA? Because it just says for those of you who don’t know, like who are diagnosed as an adult like me, when you’re, you know, younger than 18 and you get diagnosed with juvenile idiopathic arthritis, you’re seen by a board certified pediatric rheumatologist, which is like a pediatrician with a specialist certification in rheumatology. But if you’re when you’re an adult, you have to see a just general rheumatologist who is like an internal medicine doctor with a special certification in rheumatology. So it’s, so you have to go from your regular, your pediatric doctor to now your adult doctor. How was that for you?

Natasha (42:49):

I actually have not transitioned. It’s interesting because you’re supposed to transition like 17, 18. I haven’t transitioned yet. My pediatric dermatologist wants to, you know, still be with me, which is great. She’s amazing. And I’m still going to, you know, when I hear some of the patients in the research project discuss their experiences and like hearing like friends and stuff, discuss their, is it doesn’t sound that great when you transition, but you know what, the research out there and the different programs, there are transition programs out there. So if you find the right place, you know, in the right people, you’ll probably succeed. I know I haven’t been through it yet. We’ll have to go through it very soon, but I haven’t transitioned yet.

Cheryl Crow (43:31):

Okay. Okay. Yeah. And some of the fears, right. Are just letting go of that relationship with your rheumatologists that you’ve had for so many. I mean, for me, like, I always say I’m lucky because my rheumatologist, she was right out of her residency. So she’s the only, like, I think she’s 10 years older than me. So I’m like, okay, good. I’m going to have you until you retire. Like, I’m going to move to wherever you go now. But like, I’m so attached to her, you know? And so I think that emotionally having to then say goodbye to that one doctor and, and have to form a new attachment to a new doctor can be scary. Right. Yeah.

Natasha (44:06):

And sometimes even like in the Clint the environment, right? Like you’re with people your age, and then you realize that I don’t rheumatology can be 80 to like a hundred, you know, and you’re sitting into the clinic and you’re just like feeling really awkward because you don’t see anyone your age. And so sometimes there are a lot of different factors that can kind of affect how you feel. Hopefully mine will go really positively.

Cheryl Crow (44:31):

Yeah. I have interacted with a lot of rheumatologists is just part of like my advocacy and volunteer work too. And they, um, you know, there is a certain, there are stereotypes about different specialists, right? I don’t know if that’s the same in Canada, but the U S there’s like the found of people that want to go into emergency medicine versus surgery or versus surgeons versus rheumatologists and dermatologists. And it’s totally doesn’t mean that it’s true all the time, but sometimes there are nuggets of truth in those and I, and then the stereotype, the positive stereotype of rheumatologists is that they’re very like brainiacs. Like they’re really fascinated by the immune system and how like these diseases come about and kind of cerebral. And I know, well PD, so with pediatric rheumatology, you have a pediatrician who has the reputation normally of being like loving kids, really outgoing and positive.

Cheryl Crow (45:25):

And the rheumatologists are like adult rheumatologists can be a little bit more cerebral, but like I, in general find that they have a lot of understanding of the gray areas of medicine. Like some doctors, like, I’ll just be blunt in my experience of gastroenterology. This is not true of all gastroenterologists. I have one right now that I really like, but previously I had two of them that were just very dismissive. Like I did an endoscopy, you don’t have anything wrong. You’re fine. And then like two months later, oops, actually you have severe. Gastroparesis like, like, okay, well then you shouldn’t have told me that nothing was wrong earlier, just based on one test. So, whereas rheumatologists are more like, they’re all their job all the time is these gray areas of like, it could be lupus. It could be this, it could be that like this medicine could work or it could not.

Cheryl Crow (46:10):

So that’s my long rant or happy rant about them that they, I hope that you have a good experience with your adult rheumatologists because I’ve had some good ones, at least so far, there are some not great ones and you always have the right again, speaking of advocacy earlier, you have the right to get a second opinion, at least. In Canada, can you get a second opinion? I’m not sure on the U S you can. Okay. Oh, good. Good, good. Okay. Is there anything else you wanted to say about the transition or like, are you nervous about it for yourself? No. Nervous.

Natasha (46:38):

Yes. Because I haven’t heard like the message where it’s like, Natasha you’ll be transitioning soon. Oh yeah. So I’m not nervous yet, but I think it’ll be different. I just, you know, hope that it’s okay.

Cheryl Crow (46:51):

Yeah. I think with all your skills and all your understanding of your disease, I think you will definitely land with a good one. Even if it’s not the first one that you try, you’ll land with a good partnership, because that’s what it’s really as important to see your doctor and medical team. It’s like a partnership, not just like a, you know, I just passively listened to them and do everything that they say, you know, so I know we’re coming up on an hour and I’m just really grateful for your time. Is there anything else that you wanted to share with the audience? Just this is your time to share anything. If you do, did want to speak about anything else. I just want to give you the platform

Natasha (47:31):

All. Thank you. Um, I definitely say check out Cheryl’s episode on Take a Pain Check.

Cheryl Crow (47:37):

Oh yes.

Natasha (47:39):

Cheryl was also a guest on take a Pain Check Podcast. And so you can definitely check that out. Literally search up, take, take a pain, check on Google, and then you’ll be able to figure it out. You can stream Cheryl’s episode on YouTube, Spotify, apple podcasts, all that fun stuff. It’s really interesting to hear show’s perspective. You know, I got to interview her. So check that out it and yeah. Let us know in the comments, what you think about Cheryl’s episode.

Cheryl Crow (48:03):

That’s so sweet that you’re taking the time to promote the episode with me. Thank, you know, you have a lot, you have a lot of good ones. I’m really, really impressed again, that I actually didn’t realize you had only started this in March 2021. I’m like, oh my gosh, you have been busy girl.

Natasha (48:22):

The school was in university, so I had more time, but yeah, it’s it, the thing is like, I didn’t expect it to kind of just like, you know, hit and it’s like, go, go, go now. Like, it’s real. Like you just kind of get into and you’re like, yeah, let’s just like, try this podcast thing out. And now it’s like, what just happened? Like now you actually have to like film all the time, but it’s really fun. And I have like a lot of people behind the scenes working as well. So it’s like, it’s very interesting and fun.

Cheryl Crow (48:52):

You’re really smart to get a team around you. Yeah. And to do it in seasons. I think that’s a really good idea too, to give yourself some breathing room in between episodes so that you’re not on, like, they call it the content treadmill. Have you ever heard that phrase when you’re like an online content creator? Kind of like how we kind of are with podcasts and now, you know, social media content and videos on Tik Tok and stuff you can get on this treadmill where you have to feel like you keep needing to produce more and more and more, and it’s good to give yourself like a breather. And I’m telling you that avice, that I’m not very good at taking, but do, as I say, not as I do, but well, I’m really excited for your future. I feel so old saying that, but I really enjoyed talking to you today and thank you so much for coming on the arthritis life podcast, and definitely everyone listening, make sure to subscribe and listen to the Take a Pain Check Podcast.

Natasha (49:42):

Two. Thank you so much for having me

Cheryl Crow (49:44):

Okay. Bye-bye for now.

Cheryl Crow (49:47):

Thank you so much for listening to today’s episode. This episode is brought to you

Cheryl Crow (49:52):

By Rheum to THRIVE,

Cheryl Crow (49:53):

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 Tik Tok. Check out the links in the show notes.