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. If you’re dealing with chronic pain, this podcast is for you. You may have arthritis, but it doesn’t have you. Here, you’ll learn how you can take control. Our host is Rebecca Gillett, an arthritis patient and occupational therapist, who is joined by others to help you live your Yes.

MUSIC BRIDGE

Rebecca Gillett:

Thanks for joining us on the Live Yes! With Arthritis Podcast. We are continuing our conversation about newly diagnosed with arthritis. This is a very important topic to me. It's the impetus of why I became an occupational therapist to begin with. And feeling so isolated in those first two years of initial diagnosis, not knowing what to do for myself to manage my arthritis or who to turn to or who to talk to about it.

And so, I'm really excited about our conversation today, because I am joined by two friends, who also have arthritis and also work at the Arthritis Foundation, to share their journey of living with arthritis. And our focus today is words of wisdom, the things that we wish we had known when we were first diagnosed, in those first couple of years.

And maybe some things we've learned along the way that might help you manage your arthritis, as you're trying to figure out your day-to-day. Joining me today on the podcast is my friend, Kevin Purcell and Bailey Bowman. Bailey, ladies first, will you share with our listeners a little bit about yourself?

Bailey Bowman:

I was diagnosed when I was 8 years old. I had just started riding horses. And all of a sudden, couldn't get on my horse anymore. And my knees were probably the size of baseballs. So, I was pretty lucky in the fact that I got diagnosed pretty quickly.

I would then find out probably 20-ish years later that I was diagnosed with extended oligoarticular JIA, which means that initially less than four joints were affected. And then within six months, more than four joints were affected. So, I've had it in my toes, ankles, knees, hips, wrists, fingers, elbows, jaw, all the places.

I started volunteering with the Arthritis Foundation when I was a sophomore in college. And I had never met anyone with arthritis that was around my same age until I started volunteering. I volunteered at the Jingle Bell Run. And next thing you know, I was helping with all of the events.

I helped plan our first kids camp, called Camp KODA, Kids Out to Defeat Arthritis. And I just never went away after that. Volunteered for about three or four years. And then a position became open. I was the community engagement director. And now I am the integrated marketing manager and absolutely love it. I've lived with arthritis for almost 20 years.

Rebecca:

I'm going into my 20th, but I'm definitely just about 20 years older than you. Kevin, can you share a little bit about your story?

Kevin Purcell:

Sure. My arthritis journey began when I was 10 years old. The ring finger on my right hand actually started swelling up, and my pediatrician actually said it was a fluky thing and it would go away. A couple of weeks later, I found myself at the beginning of a two-month stay at a teaching hospital outside of Boston, Massachusetts.

So, there was not a lot of things that could be done back then. And within my stay of almost two months, both of my wrists were fused. My left elbow was fused, and my knees, neck and ankles were well on their way. The fusions happened, they weren't medical fusions.

Rebecca:

Oh, wow.

Kevin:

What I wanted more than anything, was to somebody say to me that it was going to be OK. That your life was going to be a little bit different, but it doesn't make it any less of a life. So, unfortunately, that didn't come till many years later.

In my teenage years, my isolation, my body, not to mention my self-esteem, were the most serious parts of living with my juvenile rheumatoid arthritis. I felt like I was the only one in the world with it. I got to the point where I didn't like looking at myself in the mirror, because I hated my body for betraying me. My communication skills were awful. If I spoke to somebody, I didn't even look them in the eyes, because I felt like my words were meaningless.

In my mid-20s, I went to my first Arthritis Foundation support group outside of Boston. And for me, it was life-changing. For the first time, I met another person, or a number of people my age, living with it. Same sort of joint deformities as I have, but unlike me, who was angry and bitter, they were wonderful, happy, successful.

After that first support group, I went to my first Arthritis Foundation National Conference in Philadelphia, where my network grew from about a dozen patients to now over 100. And that really changed the direction of my life. I started volunteering for the Arthritis Foundation. I got my knees replaced, also in my mid-20s. So that made me physically feel a lot better. But I moved out to Arizona, started volunteering for the office, being a kids' camp counselor.

And I started volunteering at a national level for the Arthritis Foundation. I started my own nonprofit, called Arthritis Introspective. And our focus was to train people to run support groups in their local communities, as well as once a year have a national gathering of all of these groups.

We slowly started building up our overall relationship with the Arthritis Foundation, ultimately merging with the Arthritis Foundation almost six years ago. I can't believe it's been that long.

Rebecca:

Wow. Yeah.

Kevin:

So, the Live Yes! Connect Groups, the Online Communities… A lot of the volunteers that were facilitators for AI, of course, are now facilitators for the Connect Groups. Currently, I work in the Helpline, and that is fantastic because I get to talk to people every day about what they're going through. One of the things I really like to do is talk to newly diagnosed people, and it's not only in this country; I'm very fortunate that I get to connect with other people from around the world.

Rebecca:

That's so awesome. Kevin is the reason we have the support group community that we have today, whether it's online or virtual now or in person. The first community event I went to at the Arthritis Foundation, I finally felt like I met my people. Like, these people around me know exactly what I'm going through.

They understand the pain, they understand the challenges, but they understand also that we need some hope. And we need something to hold onto. They know that, if I'm having a bad day, or they see me limping or walking funny, they know there's a reason behind it. And they don't have to ask any questions. They're just there to be there for you.

I wanted this to be a conversation among friends. Because we are. That for those of you that are newly diagnosed and listening, can feel like you're in the room with us and feel like you are not alone. You will be OK.

To kind of frame up our conversation today, I wanted to talk about a few specific areas when you're first diagnosed. What kinds of things were you surprised about when it came to your diagnosis? Let's start with you, Bailey.

Bailey:

It's actually interesting, when Kevin said that he didn't even want to look in the mirror because he felt betrayed by his body: Essentially, I 100% felt that same way. I had to take prednisone and things like that when I first got diagnosed. And my cheeks looked like I was a chipmunk that had things stuffed in them. And they were so big, and it was terrible. I had to take the prednisone so I could actually walk. Because of that, I didn't like the way that my face looked. So, it was really frustrating.

I think the biggest thing for me was the fatigue. I think, still to this day, I forget that, because I have arthritis, that's why I'm tired. Like, I'm not just tired because I didn't sleep good or I did too much; I'm genuinely fatigued, because my body is fighting against itself every single day.

Rebecca:

I went through the same exact thing as you, Bailey. I was in my 20s, and I was on up to 40 milligrams of prednisone a day because my flares were so bad when I was first diagnosed. And I didn't even know or realize that my face was that swollen. I think they call it moon face. And so thus begins your love-hate relationship for the rest of your arthritis journey with steroids, right? That's a really good one to point out. Kevin?

Kevin:

I don't want to continue to point out how old I am. (laughter) Back then, newly diagnosed, that's all it was. There wasn't anything else until probably gold shots. My mom was an RN, and she said no to steroids as a child. She knew that was all there was, and it would have been 40 to 60 milligrams of steroids for me every single day growing up.

I was not introduced to any sort of steroids until in my mid 20s when I was recovering from my knee replacements. So, I'm six feet tall, and I still have very good bone mass. And I do credit my mom for this. But like you guys said, it has its place.

Rebecca:

Yeah. When I was first diagnosed, it was my right wrist. I'm right-handed, my dominant hand. Naturally when you're in that kind of pain… Luckily my left hand wasn't hurting. I figured out that I had to start doing things with my left hand. This is something that nobody really teaches you, but until you're put in that situation, and you realize, "Oh, wait a minute, like, how am I going to do this?"

Start using your opposite hand on a regular basis, just to get used to using it. Because one day you might wake up and that dominant hand is swollen and stiff and not working for you. And you're going to have trouble getting ready; you're going to have trouble brushing your teeth and feeding yourself. But if you start practicing before the problem happens, it makes it better.

PROMO:

Want to connect with others who understand what you’re going through? The Arthritis Foundation’s Live Yes! Online Community features forums on specific topics where you can chat with those who know what it’s like, including health care experts. Or check out our local virtual Connect Groups for a more personal touch. Sign up at https://www.arthritis.org/liveyes .

Kevin:

One thing that's very scary at the beginning of a lot of people's arthritis journey is losing function. Joints … having a hard time walking … et cetera. And it could be very, very scary. But one of the things I like to tell people is, you have no idea how good we are at adapting if we need to. Our brains do a great job with taking care of what needs to be taken care of.

Rebecca:

Yeah. This is why I became an OT, because I learned from an OT in a literally 20-minute session things I should know to protect my joints. And nobody had taught me that in the first two years. Now those types of adaptive equipment are so easily accessible online.

It doesn't matter what joint it is, but having a professional help teach you why it's important to use some of these tools, even if you're not in pain, and also what things you can do to prevent some of the pain that you have.

It's really overwhelming when you're first diagnosed. So, you get the diagnosis, a lot of times it might be from your primary care physician, and then you have to find your specialist in rheumatology. Walk me down that, Bailey. In your transition from living with it and having your parents help you manage your arthritis, what that was like transitioning to try to find a doctor that fit with you?

Bailey:

I've had a very mild case of arthritis. I've never had like this excruciating… It hasn't been as bad as a lot of people have had. But I still, to this day, there's probably things that I can be doing to, one, protect my joints, or two, not be in the pain that I have right now. It doesn't matter how long you've had it, you can probably benefit from taking advantage of the different products and things that can help you.

As for my experience, in Utah, we have an amazing health care system, Primary Children's Hospital, and we have the best of the best there, in my opinion. My doctor was great, but my nurse practitioners, they are just the most kind and caring people. So, I obviously don't remember a whole lot about when I was younger, but one thing I do want to touch on is that transition from pediatric to adult. Man, nobody prepares you for that. (laughs)

Kevin:

Yeah.

Bailey:

One thing I would say is, pay attention to what your parents are doing, because I have never had the amount of appreciation for my mom as I did when I went to my first adult rheumatology appointment by myself. I had to call her to ask her how to fill out the form. Like, “Mom, when was the last time I got this shot?”

There's so many things that you just don't realize that your parents do. That, and then the insurance. When I turned 26, man, I was again praising my mother because she had done all of this stuff and advocated for me for all of these years. And I just had no idea. So, if there's one thing I can say, when you're a child getting diagnosed, pay attention, don't just take a back seat to your diagnosis. Be present, be asking questions when you don't understand what your parents are doing, ask as many questions as you can. Have them explain to you the process of getting prior authorization, which is not fun.

Kevin:

Whether it's, you know, you're an adult-onset RA or another autoimmune disease, or you're a parent that has a child who is newly diagnosed with JIA or even an older person, or in any age with osteo… I mean, it is really important to build up that health care team and to become that patient advocate.

Rebecca:

Yeah. And we have an episode about building your health care team when you're newly diagnosed, if you haven't listened to that, and I highly recommend it. Think of your journey of arthritis as you're on a ship. You're the captain, you're in charge of your care. You are the only one who lives in your body and knows what that experience is like and the pain that you're in and the struggles that you have. You need to make sure that you vocally advocate for yourself, whether it's within your family or within your health care team, making sure that you're communicating well.

So, when you fill out all those forms, Bailey, and you have… Your list starts to get longer of medications you've taken. I have somewhat, you would call it, for lack of a better word, a resume of my medical history, where I have all of my basic information: the history, the medications, the allergies, the family history is on there, and so are my lists of surgeries. I just provide that and say, "See attached." And…

Bailey:

I love that.

Rebecca:

It's amazing. And I actually have it saved. And I just go in and update when there's a change to medication or anything. And I highly recommend that you start creating your own little medical binder, where you keep some of this information that you might need to share with another health care provider. That is how you are the best advocate for yourself. Taking good notes. Come with notes prepared for your conversations with whoever your health care provider is.

PROMO:

Vim is a one-of-a-kind pain management app that can help you track your condition, set goals and connect with others. It’s free and it’s customized to your own situation. Download Vim at https://www.arthritis.org/vim . And take back what chronic pain takes away.

Rebecca:

One of the hardest things I think when you're newly diagnosed is sharing your diagnosis. "Who do I share it with? When do I share it? When is it appropriate? I don't want to share it. Do I have to share it?" Any tips or words of wisdom you have to share with our listeners?

Bailey:

It's totally up to you if and when you want to share it. I was pretty vocal about it because I was in school and would sometimes have to be pulled out of school to go to doctor's appointments and things like that. So, I always told people that I had arthritis. And the amount of times I have heard, "Oh, arthritis, isn't that what old people get?"

Yes. Yeah. I'm 8 years old with a body of an 80-year-old, essentially. (laughs) So you're right, but no, everyone can get arthritis. And I think the most important thing is that you don't have to share it with anybody. I think it's helpful to share it with at least some people, but you're not required by law for any reason to have to tell your medical history to anybody.

Kevin:

It sounds odd, but what was a benefit for me is nobody ever questioned what I had. If I got out of my car on the handicap spot, you know, nobody ever said, "Hey, what's the deal? You look young and healthy." A person having noticeable arthritis is a lot different, you know, emotionally and psychologically, from somebody that does have a hidden diagnosis.

Rebecca:

Yeah. And obviously I'm an open book or I wouldn't be hosting the podcast. So, I've always been a very upfront, direct kind of person since I was younger. I have a very supportive family. And so, I didn't feel like it was anything I had to hide. And it's more about the people you don't know who you might feel are judging you. And honestly, I just have never really cared what people thought about me.

Bailey:

(laughs) Same.

Rebecca:

For the most part, when people see me, they can't tell. But if you saw my scars all over, you know, from my neck surgeries and my hands, you'd see, but otherwise people have no idea. A few years ago, we went to one of the theme parks and took our son. And a few years before that, I decided that, "Well, I'm not going to worry about my joints. I'll be OK. You know, I want to enjoy this experience with my son." And that was a mistake. I suffered greatly. I flared for weeks, and I ended up having surgery on my foot.

Fast forward a few years later, we went to one, and I said, "You know what? I'm going to use a wheelchair. And I'm going to be OK with that." It was hard, but I enjoyed the day better. We did get in some rides a little faster, so that was a benefit. But I enjoyed the day better. And I wasn't flaring for weeks to create moments with my family, you know? I think it's your choice when you want to share. The most difficult part is when people don't know and you feel like they're judging you. But so long as you know that you're doing what's best for you, that's all that matters. Right?

Bailey:

I do want to touch on, too, that a really great resource for sharing your story if you're diagnosed as a kid or as an adult is to connect with the Arthritis Foundation. I think that the most beneficial part of being a camp counselor is that these kids are learning how to share their story, and they're doing it in an environment that allows them to feel open and be honest.

Kevin:

Yeah. I know after my first support group, communicating with other people became so much easier and I was able to talk to my family about it, my friends. I became completely open once I realized I wasn't alone.

Rebecca:

Yeah, right? I think it, it does, when you're exposed to a community of people who are going through similar things that you are, it does make it a little bit easier to share because then you don't feel like you are alone in your journey. But if there's anything that I would say, and leave as a tip, is learn as much as you can, ask as many questions as you can, ask for the referrals to the other health care team members that can help you, but ask other people who have it.

This is a great segue now into the listener section of the podcast, where we asked on social media the question: What do you wish you knew when you were first diagnosed with arthritis? And what words of wisdom do you have to share? And we had some really great responses. One of the first ones was: It's OK to not be OK. You're going to be OK. And it is OK to put yourself first.

Another one was: Try not to live in fear, as hard as it is; try to stay positive. And I think if there's one thing that I've learned from my friendships with both Bailey and Kevin, both of you speak to that comment perfectly.

Kevin:

One thing that I just want to add is: Just know that it's just a moment in our journey, that things could, and things will, definitely change. So, try not to focus on, “Well, it’s bad today, it's going to be bad forever.” Because I'm an example of, no, that's not how it really is.

Bailey:

I think that helps me a lot of the time, that whenever I am having a flare or I am struggling, I just remind myself that it's going to get better. It always is better. Nothing lasts forever. And I really do think that a positive mindset completely changes your diagnosis. You need to remind yourself that you're still able to do certain things. Even though you can't run anymore, you can still walk; even though you can't, you know, do these things that you used to do, there's always a substitution. And I think that that's the most important thing: You'll find something else that you love to do, as long as you stay positive and have the mindset that you want to find something else.

Rebecca:

Yeah. Give yourself permission to be not OK.

Bailey:

Right.

Rebecca:

But also know that there's a light at the end of the tunnel, right? I've found over the years that if I give myself a minute to process whatever it is that's happening, good or bad, especially the bad, I always will find the silver lining somehow. And in that moment of staying in a dark room and crying and feeling really frustrated and going back to the “Why me? Why this again?”, I realized, you know… I found humor. I found humor in needing a cervical spinal surgery because I realized that I can now say I have a loose screw in my head and mean it. (laughter) I literally have a loose screw in my head. I was like, “Oh my God, I have a loose screw. OK, that's really funny.” And so that got me out of my funk, but it was OK to be in the funk. I needed that. Right?

Bailey:

And that's the thing, too: You can think like, yeah, that sucks that you have to have another surgery, but how lucky are you that you have the opportunity to get a surgery to make you feel better? So, although you are forever going to have that loose screw in your head, which we all know…

Rebecca:

(laughs) Yes.

Bailey:

But how lucky that you can actually get the surgery that you need to help you live a better life.

Rebecca:

Right. Exactly. Kevin, did you have something that you want to add?

Kevin:

Just that, all the time I've known you, Rebecca, you've always had a screw loose. (laughter)

Bailey:

And that's why we love you.

Rebecca:

It's so true. A couple other quick comments I wanted to share that came through Instagram is: Don't slow down, movement is medicine. I think we've all learned that, you know, whether we want to or not: Staying active is actually better for arthritis. Right? Fear of the disease more than the side effects of the medications. I think that's an important one, too. I know a lot of people are afraid of some of the medications. I'm grateful for the fact that we have brilliant scientists out there coming up with medications that help us to live life. Right?

Bailey:

Exactly.

Rebecca:

It may be different…

Kevin:

Yep.

Rebecca:

... but we can still live it.

Bailey:

Exactly. I think that it's so important to realize that feeling better now is much better than anything else that could come on later down the road.

Kevin:

There's no cure, but there are so many things out there — surgeries, medications, therapies — that can improve our quality of life every single day. That's the most important thing to remember when newly diagnosed.

PROMO:

Get tips to help you take control of arthritis and put your mind at ease with the Arthritis Foundation’s free e-books. They’re packed with trusted information from the experts on all kinds of topics. See the full menu at https://www.arthritis.org/liveyes/expert-advice .

Rebecca:

I want us to each share our top three takeaways of what you want our listeners to know, whether they're newly diagnosed or not. Let's start with you first, Kevin.

Kevin:

I think for me the major takeaway is, regardless of where you're at in your arthritis journey and whatever age you are, you're not alone. There are supportive people out there that you could connect with. There are so many ways to get involved, whether it's an Arthritis Foundation support group or the online community, there are social media groups, and there are ways that you can get involved in your own community. So, meet others, whether it's just a social situation or, like Bailey, start volunteering. We're all part of the journey together.

Rebecca:

That's awesome. Bailey, what's your takeaway?

Bailey:

The number one takeaway for me is to find a community, to find people that get it, and to find people that you're allowed to just be yourself around. The next I would say is to appreciate the people that you do have and the people that support you in whichever way it is, whether that be your health care team, whether that be your family, your friends, just really appreciate what all people do for you and let them do it. And then finally, I would just say to find the positive in your diagnosis. To find the positive, whatever it might be.

Rebecca:

I guess my takeaways would be: Get educated, understand the disease, understand the medications, understand what it means, ask the questions, come prepared to your doctor's appointments. And you navigate the ship. You're the captain.

Kevin:

Get yourself educated but use credible websites.

Rebecca:

Oh yeah. That's true. Yeah. Don't use Dr. Google. I wish that, when I was diagnosed 20 years ago, the resources that we have at the Arthritis Foundation were available back then. Ask your health care providers all the questions you need to ask to understand your diagnosis and your prognosis, what it means for you for the future. And let them know what's important to you. You just have to find out who the right people are for you to go to, to learn those things. Then you can take control and then get connected. That's the last thing I have as a takeaway. Clearly, it's changed all three of our lives.

It is my mission to make sure that anybody listening knows that, one, they're not alone; two, you're going to be OK; and three, you can take control. So, on that note, thank you guys so much for joining me in this conversation today. And for those of you listening, if you haven't checked it out and you are newly diagnosed, the Arthritis Foundation does have an app that helps you manage your arthritis and set some goals to manage your pain, but also connect with other people in the community. It’s called Vim, V-I-M, and you can check it out at https://www.arthritis.org/vim . Thanks, guys.

Kevin:

It was great. Thanks for having us, Rebecca.

Bailey:

That was awesome.

PODCAST CLOSE:

Thank you to Amgen, our sponsor of this episode, Words of Wisdom: What I Wish I Knew, which is part of a 4-part Newly Diagnosed With Arthritis series. The Live Yes! With Arthritis podcast is independently produced by the Arthritis Foundation, to help people living with arthritis and chronic pain live their best life. People like you. For a transcript and show notes, go to https://www.arthritis.org/liveyes/podcast . And stay in touch!