Podcast: Living With Arthritis: Silver Linings

 

Full Transcript:
Released 4/9/24


PODCAST OPEN:            

You’re listening to the Live Yes! With Arthritis podcast, created by the Arthritis Foundation to help people with arthritis — and the people who love them — live their best lives. This podcast and other life-changing resources are made possible by gifts from donors like you. If you’re dealing with chronic pain, this podcast is for you. You may have arthritis, but it doesn’t have you. Here, learn how you can take control of arthritis with tips and ideas from our hosts and guest experts. 

 

MUSIC BRIDGE 

 

Bailey Cook: 

Welcome to the Live Yes! With Arthritis podcast. I'm today's guest host, Bailey Cook. It doesn't seem like there would be any benefits to living with a chronic disease like arthritis. It can upend your life, causing unrelenting pain, keeping you from doing what you love and even change your plans for life. But surprisingly, many people say it also has positive effects, from lessons in gratitude and small but hard-won achievements to teaching others compassion and empathy. Living with or around arthritis can have some silver linings. 

 

I'm joined today by Sadiq Jiwa and Stacy Courtnay. Today, we're going to be sharing our stories and all of the silver linings we've had in our arthritis journey. Welcome to the podcast, guys. 

 

Stacy Courtnay: 

Thanks for having us. 

 

Sadiq Jiwa: 

Yeah, thanks, Bailey. 

 

Bailey Cook: 

Well, interestingly enough, today is March 18^th, and that's actually World Juvenile Arthritis Day. And that's actually where my story begins. I was diagnosed when I was 8 years old, and I actually found out by… I started riding horses, and my knees swelled up to the size of... I don't even know what. They were huge, and I couldn't get on my horse, and I knew something wasn't right. I always felt like my knees like needed to pop. And it was just a very weird feeling. 

 

So, I was pretty lucky in the sense that I got diagnosed fairly quickly. We have a great pediatric rheumatologist in the state that I'm in, in Utah, and so I was very, very blessed to get in and get a diagnosis quickly. But it definitely changed the course of my entire life. I was able to continue riding horses, thankfully. I was able to get my inflammation under control. And the more I've thought about it, I really wonder if my horseback riding actually was the reason that I didn't have such a hard time with coping with my diagnosis. 

 

I know that a lot of people do like equine therapy, and horses are just very healing. So, looking back, I'm wondering if that's kind of why I never really had those negative thoughts associated with my arthritis. But leading into high school, I took a step back from riding horses and thought that sports were way cooler. I started playing basketball, volleyball and golf. I actually had a flare during volleyball tryouts, and so I tried to try out, and it just didn't work. 

 

I still got to be the manager and travel with them and do all of that. And then we got into basketball season. So, I tried out for basketball, I make it all the way through all of the rounds, and then I get cut in the final round. And I was a little shocked because they had encouraged me to try out. The sophomore coach had the final say, and I went and had a conversation with her, and she told me that it came down to me and someone healthy. So, I essentially didn't make the team because I had arthritis, which was a lot all in itself. 

 

But silver lining: I was actually able to be the boys' basketball manager. And I learned so much being their manager and having to go to practices and go to games and support them. I actually remember one time when I was the manager, we were practicing, and the head basketball coach, he always liked to start practice with a quote. He says, "If you change the way you look at things, the things you look at change." And that has stuck with me for forever. And I just really have tried to live my life based off of that. 

 

Going from there, I was still able, thankfully, to play golf, because as Sadiq, I'm sure, will tell you later, it is very manageable to live with arthritis and play golf. I was not very good, but I had a great time doing it. Another silver lining with that is I actually was at the golf course every day doing practice and became really good friends with all of the staff there. And I actually was able to get a job at the golf course. So, I worked at the golf course all through high school and through college as well, where I was the wedding and event planner. I worked at the the front desk. I took pictures at golf tournaments. And it was the most fun job I probably have ever had. 

 

Back on November 19^th, 2012, I posted a thing on Instagram, which I would have never known would relate so much to what I do now. But I posted on Instagram: "My wish is to one day start a program for children with arthritis where they can all come together to play sports." And then I said, "Sounds dumb, but I honestly want it so bad." And little did I know, I would one day meet up with the Arthritis Foundation and have experiences where these kids can come together and have the connection, and everyone's on the same level. I think that was my hardest thing growing up. I was decent at the sports I played, but people without arthritis were always just a little bit better because they could run more and they could exercise more and do all the things that I couldn't always do. 

 

So, that leads us to my next silver lining. When I was a sophomore in college, I was in a sorority, and one of our alumni of my sorority was on the committee for the Jingle Bell Run in Salt Lake City. And I was like, "Oh my gosh, I have arthritis. I should do that to volunteer." So, I volunteered at the Jingle Bell Run, met the staff and was like, "Hey, I'm an event planner. I want to get involved." So, it has just spiraled from there. 

 

I volunteered for four years and then actually got to join The Arthritis Foundation staff in 2018 and have had multiple roles throughout my time at the Foundation. But one of my favorite roles was: I was the community engagement director covering Utah, Idaho and Montana, and I got to support our JA programs, which includes our JA camp, which is where these kids got to come together and do all of these fun things, and everyone was on the same level, and it was just a really full-circle moment. 

 

I really believe that my arthritis has shaped my entire life. It has given me such a great perspective on life, and I'm just honestly thankful for my arthritis. 

 

Stacy Courtnay: 

Well, Bailey, I've spoken to you a hundred times, but I don't think I've ever really heard your story. And that is so wonderful. I didn't know all that about you. And I would say a silver lining for sure is that you were diagnosed early, and it didn't take many, many years, and that also you had access to a pediatric rheumatologist because I know that is such a challenge. Even in Atlanta, one of the biggest cities in the U.S., we still have a shortage of rheumatologists, so that's definitely a silver lining for you. 

 

Bailey Cook: 

It was, thank you. 

 

Stacy Courtnay: 

Do you still ride horses? 

 

Bailey Cook: 

I still ride horses with my best friend, who actually got me into horses originally. 

 

Stacy Courtnay: 

OK, my turn, right? My name is Stacy Courtnay. I live in Atlanta. I hate to admit, I'm going to be 46 next month. I was diagnosed when I was 24. So, going on 22 years of being diagnosed with rheumatoid arthritis. It started right after college, and I think, like most people, you attribute all of your symptoms to something other than arthritis or a chronic illness. And I had just gotten this really great job out of college. I was actually in event marketing, and I did a lot of event planning for a software company. 

 

I bought new clothes and new high heels. And so, when my feet started hurting, my first thought was, "Oh, I'm wearing high heels at all these big trade shows, and that's why my feet are hurting." And then my shoulders were hurting, and I couldn't lift my arms. And I was like, "Oh, I've been lifting too much at these trade shows or whatever." I kept justifying all of my symptoms. And then one day my wrist just swelled up so huge that I could not pick up a coffee cup; I couldn't squeeze the toothpaste. 

 

I'm like, "What's going on with my body?" I was actually diagnosed quite quickly as well. I would say within a year, I was diagnosed, which is a lot sooner than most people. So, I feel very lucky that I had access to a great doctor, and he immediately saw what was going on. I had just met my husband, and we were newly married. And this was back in 2003, and biologics were fairly new, and they did not know the side effects of what these medications would have on women before pregnancy. 

 

We're newly married and we have this pressure, "Do we have a baby? Do we not have a baby?" And so, we decided to have a baby sooner than we had anticipated. I was pretty well managed on prednisone throughout my pregnancy. I hated to be on it, but it was safe enough at the time to stay on prednisone to get me through it. And then had a very healthy son, John, in 2007. And that was a blessing in a silver lining because I was just terrified my whole pregnancy. 

 

Then, it was like, “OK, let's go on this journey of finding the right biologic.” Not just take prednisone to mask the symptoms, but actually find a medication that's going to control the symptoms. And that's where the real challenge was for me because it took about seven years before I found the medication that works. And I think it was because I was behind the eight-ball. Then, when I finally found my miracle drug, as I call it, it was life-changing. 

 

And I was like, “I want to give back. I want to help other people in this situation.” Help, you know, new moms, or women with arthritis who don't know what to do or what route to take. So, I got involved with the Foundation. It's the idea of helping others to help yourself. 

 

When I first graduated and got my job in event planning and all that, I had this goal of being this corporate woman and CEO. And I'm like, "Wow, that's... my whole plan has changed." And so, I struggle with the idea of not having this big, great career, but the silver lining is that I kind of did find a new career with the Arthritis Foundation. Some of my best friends are from the connections that I've made with the same, you know, chronic illness and struggles. A silver lining for me has been my family. 

 

I feel so grateful that we live in this generation of these amazing biologics and drugs, because when I'm getting my infusions, when I'm sitting in my infusion lab and there's like a 70-year-old woman who… her joints are deformed, and she has so many challenges because they didn't have these disease-modifying drugs back in her day. 

 

So, that's like a silver lining for us: that we have access to that. You just have to accept that “I’ve got arthritis.” And it ended up being one of the greatest things for me as well. 

 

Bailey Cook: 

That’s amazing. And I think that that really just shows how impactful the arthritis community is. I mean, you changed your whole world to support others with arthritis. And that's incredible. And I... the arthritis community… cannot thank you enough for that. 

 

Stacy Courtnay: 

Thank you. 

 

PROMO: 

If you want to learn more about juvenile arthritis and related diseases, count on the Arthritis Foundation. Explore our JA camps. The national JA Family Summit. And other ways to stay in touch and be-in-the-know about everything JA, for juvenile arthritis. Visit arthritis.org/ja. 

 

Bailey Cook: 

Sadiq, do you want to tell us a little bit about your story and some of your silver linings? 

 

Sadiq Jiwa: 

It's amazing listening to both your story, Bailey, and yours, Stacy. Experience tends to be the best teacher with things. And with having a condition like arthritis, that doesn't always necessarily mean the most positive experiences, especially with the symptoms that an autoimmune disease like that comes with: the swelling, the inflammation, the chronic pain, et cetera. And yet you guys have found a way to take some of those experiences and spin them around into some very positive, meaningful life experiences. 

 

Like Bailey, you were talking about playing volleyball, basketball; guys could run faster or do a few other things. What kind of different perspective did that give you over some of the other people you were working with around you? 

 

Bailey Cook: 

That's an incredible question. I think that I can find a connection in every single person that I talk to. And I give that all to my arthritis because I've had to really take a step back and understand people for who they are and not what they look like or what advantages or disadvantages or disabilities or diseases or anything that they have. 

 

So, I always try to get to know people individually, and I think that that's what has really benefited me most in life in everything. My husband actually has autism and ADHD. And so, I think that by me having arthritis, I have really been able to like understand him and understand things that he may need. 

 

Sadiq Jiwa: 

You never really know what someone's going through until you ask. 

 

Bailey Cook: 

Exactly. 

 

Sadiq Jiwa: 

What about you, Stacy? 

 

Stacy Courtnay: 

I was going to say almost the exact same thing, Bailey. But you never know what's going on on the inside. And so, just having compassion and empathy for people, and having compassion for yourself and what you need. 

 

Sadiq Jiwa: 

You guys sort of hit a big topic there: empathy. I think the biggest silver lining in my story is the empathy, the ability to connect with people and some of the amazing people that I've met along my journey. I was 6 years old when I was diagnosed, and I'm now 28, so coming up onto as well: 22 years… 

 

Stacy Courtnay: 

Oh, wow. 

 

Sadiq Jiwa: 

…of having juvenile idiopathic arthritis. It took about two and a half to three years for me to get diagnosed, which, as a very young kid, was just a lot of pain and testing. But it wasn't until I was connected with the pediatric rheumatology team at the British Columbia Children's Hospital, where I grew up, that I finally got diagnosed with JIA. 

 

I want to say my elementary school career and getting into high school, my arthritis was managed fairly well just with simple anti-inflammatories. And wasn't really until I started hitting puberty, and going through high school then college, where my condition really started to evolve. What used to be epicentered as just symptoms around my jaw and neck turned into systemic JIA, which affected everything — from basically every joint in the lower body to continuing to affect my neck, shoulders, jaw, back, and is now sort of across the body. 

 

The biggest silver lining that I've got from my story is the ability to connect with people. But in terms of the physical side, I was pretty competitive in hockey growing up. Started skating as young as 3 years old. Hockey was sort of the big thing that I had to give up playing, because I couldn't take a hit. I couldn't give a hit. And just the contact nature of the sport was not something that my arthritis could handle. The silver lining of that is it led me to change gears and go into golf. I am a professional golfer, and I'm training to get onto the PGA Tour. 

 

I was a late bloomer with golf, didn't really start playing until I was 11 years old and didn't really start playing competitively until I was 14. And with that, I want to say that my arthritis led to this ability to really focus in, mentally and physically, on the golf, on the training or whatnot. 

 

I wanted to prove to myself and prove to everybody else that, you know, you could be the best at something despite having a condition like juvenile arthritis. But it also turned into just a total love for the game. There was nothing that was going to stop me from trying to become the absolute best at the sport. 

 

And that led to me getting into a private club in Vancouver where I grew up. It led to being the captain of my high school golf team. It led to me getting recruited to play at Kenyon College. And then I just kept getting better and better and better, to the point where now I'm a professional golfer and trying to become one of the best in the world at this. 

 

I ended up running into a physio team, painPRO Clinics out of British Columbia, and they are probably the big reason that I'm still playing right now. We shifted from sort of being behind the eight-ball to, “How do we get in front of this?” How do we sort of do the things that will prevent any of the symptoms to really get to a point where I can't play, and then also just manage the overall condition to a level where I can get by on a day-to-day basis with all the training and the gearing up and et cetera? 

 

That led to me really getting into active rehab, physiotherapy and functional fitness. It led me to working with a rheumatology nutritionist and basically just changing gears, changing the approach. To right now, at 28, I'm only taking a biologic and an NSAID, and it's managing things pretty nicely. So, I'm very grateful for the team that I've got that are behind me and supporting me. 

 

I'm really grateful to my arthritis and grateful to the team that's been around me that sort of pushed me in this direction. And for the mentality that it's led me to, which is both this ability to sort of create this tunnel vision and focus in really on what I'm doing and having something that I can, at least when I'm on the golf course and in competition, block out to be able to perform at a higher level. 

 

I think one of the biggest positives that my arthritis has led me to is working with groups like the Arthritis Foundation and, up north, Arthritis Research Canada, working in an advocacy role and a mentorship capacity with younger patients. I would have loved to have talked to somebody that was in my boat when I was at that age to be able to help navigate through the arthritis. 

 

You don't really know what somebody is going through until you ask. And I think that sort of whole mindset has something that's evolved, and it's led me to connect with some amazing people. It's led me to have some very, very deep, strong relationships with my friends. Those would be the big silver linings on my end. 

 

Bailey Cook: 

I relate to everything that you just said. Some of the things that really stuck out to me, I'll start first with that: that friendship. Another thing was where you say you wish you would have had that when you were younger. That is exactly the same for me. And then also you mentioned the focus and the drive. I feel like, because we've had to fight so much for our health and for our success, it really does give us such a focus and drive in everything we do. I know for me personally, I want to go to every situation that I can and that I go to and just give it everything I have. 

 

Stacy Courtnay: 

Well, I like what you said about you take a very proactive versus reactive approach to your health. I know we cannot cure our disease, but we can definitely do complementary type therapies and alternative therapies. 

 

PROMO: 

Whenever you need help, the Arthritis Foundation’s Helpline is here for you. Whether it’s about insurance coverage, a provider you need help from or something else, get in touch with us by phone toll-free at 800-283-7800. Or send us a message at arthritis.org/helpline. 

 

Bailey Cook: 

What advice would you all give someone who's newly diagnosed and feeling really overwhelmed and sad with their diagnosis? 

 

Sadiq Jiwa: 

Realizing that it's OK to be overwhelmed, and realize that you're not alone in that process. Educate yourself in terms of finding out what it is about: one, what the disease is; two, how it affects you and your body because you are going to be your best advocate for how the condition affects you. And then three, that's reaching out to all the other resources that are available, like the stuff that the Arthritis Foundation has, the different programs, the different community building initiatives that you can then reach out and meet other people. There are all these programs and resources that are available. 

 

Stacy Courtnay: 

I always refer people to the Arthritis Foundation website because there's a great section just for newly diagnosed. And then I always just try to connect them with maybe somebody in their area, just to answer their questions. And then my next thing is to invite them to the Walk or our Jingle Bell Run. The most trying times is in the beginning because you're so confused, you're scared. You know, you want to talk to people who have the same challenges and struggles and worries. It's just the connection piece of it. 

 

Bailey Cook: 

It's OK to have all of the feelings that you're feeling. I know both of you have been diagnosed for around the same time. You don't always notice the silver linings as they're happening, but looking back, you'll start to make those connections and just really be the best version of yourself you can be. 

 

Sadiq Jiwa: 

That is OK to have all the feelings, you're absolutely right. At the same time, you know, your attitude, your mindset, really changes the way you look at things, right? It makes you unique and a unique perspective that people will want to hear and that you're going to be able to help people with. 

 

Bailey Cook: 

For all of our podcast episodes, we ask a question on social media. So, for this episode, we asked: "What unexpected positive experience have you had as a result of living with arthritis?" And there were so many comments speaking to pretty much everything we talked about. There were over 200 comments on this Instagram post. Things like empathy, compassion, resiliency. And the biggest thing was the connection, finding people with arthritis, finding the Arthritis Foundation, having these lifelong friendships that you've met through your arthritis. 

 

But a couple of really fun comments that I just wanted to touch on. One person said, "I love this positive post. I stopped following a lot of the RA groups because it was so much sadness and negativity. This disease is such a struggle. At first when I read this, I thought it was a joke until I thought about it. It has taught me to slow down, not get so worked up and stressed about everything. I really focus on being more present and in the moment. I appreciate the days that I do feel good and make the most out of it." 

 

Stacy Courtnay: 

I remember when I was first going through this, and my mom said, "You need to get involved with the Arthritis Foundation or some type of group." And my first comment to her was, "No, I don't want to be around other people who are as miserable and in as much pain as I am." (laughter) 

 

I said, "That just sounds like a recipe for disaster." But what I realized is, once I did get involved, that's completely the opposite. Yes, you are going to have some really sad stories and some bad days that you're going to share with each other. But I think that I've had such a positive experience that it's not all doom and gloom. 

 

Sadiq Jiwa: 

I think on my end, it's in those moments that have led to some of the most amazing relationships and friendships that I've had. 

 

Bailey Cook: 

The next social comment that I pulled from this post, says, "My RA led me to quitting playing instruments — viola, violin and flute — but that meant I joined choir. My best friend, who I met because of choir, I'm her daughter's godmother." So, that just really speaks to that it puts you in a situation that you didn't expect to be in, and some of the best situations in your life could happen from it. 

 

Sadiq Jiwa: 

There you go, right? Keep singing, whoever posted that. That's awesome. 

 

Bailey Cook: 

And then the last social comment that I'll talk about says, "It made me so much more cognizant of my overall health and motivated me to exercise, eat cleaner, take daily multivitamins, et cetera." 

 

Sadiq Jiwa: 

Way to take control. That's called being proactive right there! (laughter) 

 

Stacy Courtnay: 

Once I became stable and felt good, I was like, "This is a gift that I feel really... I feel well enough to actually exercise." So, every day, what... I was like, " I'm feeling great, I have to exercise." 

 

PROMO: 

The Arthritis Foundation’s Live Yes! Connect Groups are empowering support groups that bring people together for informative events and engaging activities. Peer-run and volunteer-led, they offer a place of understanding and encouragement and cover all kinds of topics. Find a group that matches your interests at connectgroups.arthritis.org. 

 

Bailey Cook: 

We always end our episodes with the top three takeaways. So, Sadiq, we'll go to you first. What are the top three takeaways that you want somebody listening to this episode to leave with? 

 

Sadiq Jiwa: 

So, one, I would say that there's always the good in whatever it is that you're going through if you just look through it. Like, I love... Could you say that quote again from that basketball coach? 

 

Bailey Cook: 

Yep. And I don't know who this quote is from, but it says, "If you change the way you look at things, the things you look at change." 

 

Sadiq Jiwa: 

That says it all right there as a big takeaway, right? In terms of just your perspective, the way that you look at things. You have a unique perspective, and with a more receptive and a positive outlook, it'll really change the way that you look at things around you. One, and then, two: With that, I think it's echoing something that you said, is that you're not always going to see the silver linings or the good that comes as they're happening. And three, something that we've said here is to really educate yourself, reach out, find the community, find the resources that'll help you manage your own condition. 

 

Bailey Cook: 

Stacy, what about you? 

 

Stacy Courtnay: 

I would say lean on the Arthritis Foundation for connections and to meet others with the same struggles that you may have. We've learned empathy for others and ourselves and to be compassionate towards others and ourselves and then just remain hopeful. The Foundation is raising funds and putting millions of dollars into research to find better, safer, more effective treatments. So, I just feel like hopefully one day we all are going to have our miracle drug. I just encourage everybody to remain hopeful. 

 

Sadiq Jiwa: 

Absolutely. What Stacy just said: It's focusing on the things that you can control. Like, there are a lot of things that we're not necessarily able to control. And a lot of times it's very easy for us to go down the rabbit hole of, “Why me and why is this happening?” Or whatnot. Focusing on the things that you can control and that you can change have helped lead to just having an overall better experience. Stacy, I do have a question for you, if you don't mind. 

 

Stacy Courtnay: 

Yes. 

 

Sadiq Jiwa: 

How old is your kid? 

 

Stacy Courtnay: 

He is 16 and a half. 

 

Sadiq Jiwa: 

How much has your experience of having a condition like RA influenced the way that you've raised your kid? 

 

Stacy Courtnay: 

Well, it was really tough at the beginning for him. I remember when he was probably a year and a half, we were sitting on the floor playing with whatever silly toy at the time it was, and he hit my wrist with one of his toys, and I burst into tears. And he learned from a really young age that my joints were just so tender, and he was always... He was so sweet, like, such a young age, just being very sensitive around my joints. 

 

He began to learn compassion and empathy at that really young age. Like, "Mom's having a bad day. She can't throw the football." So, I feel like he's learned so much. I think John's learned a lot about being compassionate and understanding. We all look healthy, but sometimes things are going on on the inside that a lot of people don't see. 

 

Bailey Cook: 

I think that that is such an important thing to think about. This was an incredible episode. Thank you both so much for sharing your stories and your silver linings. And to those that are listening, I really hope that you are able to look back and find some silver linings yourself. Thanks so much, everyone. 

 

Sadiq Jiwa: 

Thank you. Thanks for having us, Bailey. 

 

Stacy Courtnay: 

Thank you, Bailey. 

 

PODCAST CLOSE: 

The Live Yes! With Arthritis podcast is independently produced by the Arthritis Foundation. Gifts from people like you make our podcast and other life-changing resources possible. You can donate at arthritis.org/donate. This podcast aims to help people living with arthritis and chronic pain live their best life. People like you. For a transcript and show notes, go to arthritis.org/podcast. Subscribe and rate us wherever you get your podcasts. And stay in touch!