Real Talk About JA: At JA Family Summit

Released July 29, 2025

PODCAST OPEN: Thank you for tuning in to the Live Yes! With Arthritis podcast, produced as a public service by the Arthritis Foundation. You may have arthritis, but arthritis doesn’t have you. Here, you’ll get information, insights and tips you can trust — featuring volunteer hosts and guest experts who live with arthritis every day and have experience with the challenges it can bring. Their unique perspectives may help you — wherever you are in your arthritis journey. The Arthritis Foundation is committed to helping you live your best life through our wide-ranging programs, resources and services. Our podcast is made possible in part by the generous financial contributions of people like you.

This episode of the Live Yes! With Arthritis podcast is brought to you in part by AbbVie and by Bristol Myers Squibb.

MUSIC BRIDGE

Trina Wilcox: Hello, and welcome to the Live Yes! With Arthritis podcast. I’m Trina Wilcox, your host for this episode. My parents finally got my diagnosis when I was 6 years old. And as many of you know, getting the diagnosis and working through it impacts the entire family. Before we get into the episode, I can just say we have a few special firsts for you. First, we are super excited because today we are recording on-location from the Arthritis Foundation’s Juvenile Arthritis Family Summit. It’s the first time ever, and also the first time we have featured an entire family on the podcast. It’s the most guests we’ve ever had on an episode. So, let’s dive in.

Family is certainly one of the greatest gifts, offering unconditional love, support and safety. But family can also be complicated, even downright messy. And families who have a child with juvenile arthritis or any chronic condition know this fact all too well. Afterall, JA doesn’t just affect the child; JA impacts the entire family. So, in this special episode — recorded at the JA Family Summit — we’ll “get real” and explore JA’s impact on the family dynamic, the challenges it presents — to the child, caregivers, siblings and extended family and friends — and we’ll explore ways to cope and build resilience, how to best support one another, as well as some of the silver linings.

Today, I’m joined by a special JA family: the Auslander family. We’re first going to talk with JA mom, Jessica Auslander, PhD, who is not only a JA mom but also a mental health professional specializing in treating families and clients with chronic health issues and addiction-related disorders. Jessica is also a JA patient, who first showed signs of JA in grade school. We’re also joined by JA dad and Jessica’s husband, Dan. Both have been volunteers for the Arthritis Foundation for over a decade.

Jessica and Dan, thanks for all you do for the JA community. Welcome to the podcast. 

Jessica: Thank you.

Trina Wilcox: We’re going to talk with Jessica. You are a PhD, you are a mental health professional, treating families and clients with chronic health issues. And you also know a thing or two about JA. Can you tell me about that?

Jessica: Yes. I started having symptoms about age 8, but it was back in the 80s where my parents were told things like, “It couldn't possibly be arthritis because it was only one joint.” Or “It's only one side” of my body, right? Which today, you know, when I share that with people, they're like, “What are you talking about?” It's also the pre-biologic era, right? Biologics weren't approved for kids when we were little.

Trina Wilcox: "Take an aspirin."

Jessica: Right? "Take a Tylenol," "Take an ibuprofen." So, it was a lot of back and forth between NSAIDs and steroids and braces and physical therapy. And when I went to college, I was basically told, "Look, we know it's not osteo. We know it's not rheumatoid. We don't know what it is. But go live your life and good luck."

So, I went to college, met my husband, who also had a family member with arthritis, so he totally called me out, realized I was struggling to like opening doors and things like that. He was like, "So, do you have arthritis?" I'm trying to be cool here and be a college freshman with this cute guy, like, "Oh, my gosh."

Trina Wilcox: "How dare you say that to me?" (laughs)

Jessica: It was really funny, but it was a really good connection, obviously. It's worked. So, it wasn't really until 10 years ago I got my accurate diagnosis.

Trina Wilcox: Oh, my goodness.

Jessica: So, I just kind of dealt with it in the ups and downs through young adulthood. And about 10 years ago, I was having issues in my hips and my spine. I went to a holistic rheumatologist, and he goes through everything and asked me questions no one had ever asked me before. And he's like, "I think you have something called ankylosing spondylitis." I said, "My kid has that."

And he's like, "Wait, you didn't tell me that." I'm like, "You think I'm making it easy on you?" I have a history with rheumatologists misdiagnosing or blowing me off. I've even had rheumatologists tell me I'm too young. They don't know how to treat me. And I was like 25. So, I finally got my correct diagnosis of ankylosing spondylitis. And I added psoriatic arthritis to that a few years ago. 

So, my journey really was interesting when they show the data and when biologics were approved and all of that. Our family kind of represents that turning point, because I was kind of pre-JA-biologic era. But then when Jaden was diagnosed, he had access to those.

Trina Wilcox: How did that feel knowing that he didn't have to go through some of those clunky early medications that we did?

Jessica: Well, it was interesting, because his first appointment — and he was 5 years old — we kind of had an easier path than many families. We're very fortunate for that. His 5-year-old well visit, his knee was swollen, and his pediatrician’s like, “You're going to see a pediatric rheumatologist.” I was like, “Fair. OK, we'll do that.” Our very first appointment, she was talking to us about steroid injections. And I was like, “Hang on.” And she's like, “Wait a minute, what’s your story?” She caught the vibe pretty quickly. She was amazing.

And I’m like, “Wait a second, when I was growing up, that was a last resort. I didn’t have a steroid injection in a joint until I was 14, because we exhausted everything else. And now you're telling me you're doing that first? I have questions.” And she explained that basically the protocols have been completely reversed. So, for me it was a lot to kind of take in, because I was like, “Oh, my gosh, this is like, this must be really bad if we're doing a knee injection.”

Trina Wilcox: Right.

Jessica: And it turned out he got two years on one knee injection with no other medication, from 5 to 7. But yeah, I mean, you were a little more comfortable with it.

Dan: It was, of course, completely new and unsettling because it was my own kid. But at the same time, we had been dealing with it with Jessica, and I have a cousin on my side of the family who actually has the same diagnosis and had been through it with him. And he's a little younger than us but far older than our kids. And he had been through the era of rest and wheelchair and the older recovery path, before getting into biologics and doing extremely well and being in remission now for many, many years. But it was not a completely new or unexpected thing.

Trina Wilcox: Now, Dan, do you have any medical history to contribute, too?

Dan: (laughing) Surprisingly not.

Trina Wilcox: No? It's just in the family.

Dan: It is in the family. However, somewhere along the line we did the genetic testing for the HLA-B27 gene, which is very common in spondy. And in fact, it's not present on my side of the family. So, no, I'm technically not connected to it, but here we are.

Trina Wilcox: Does that give you a different perspective? How does that feel sometimes when you watch your wife and your kids struggling, and then maybe you just have an ache one day? (laughter)

Dan: It certainly does play into the family dynamic and how things go sometimes. Because, you know, if we spent time digging holes in the yard or stacking totes in the attic or something the day before, and I wake up sore, I don't really get to say "boo" about it. Because that's just sort of the standard baseline level for a good chunk of our family.

Trina Wilcox: Very good. You said something else very important, that I picked up on, that, "We are doing things as a family," so it's not like an exclusion. Like, it was always a big thing for me, like, let's find a way that you can be involved. There's not this, "I can't." So, is that also always top of mind or just come naturally for you?

Jessica: So, I mean, sometimes he'll offer help. Because he loves us. I mean, he's been with me through the college stress and then obviously pregnancy and parenting and all of that, and the toll that took on my body. Two of our children are biologic, one is adopted, so going through all of that, yeah, sometimes he will open that jar before I ask and do things. And sometimes he has to be reminded a little bit, like, "Wait until we ask for help."

Trina Wilcox: There's a break point and they have to…

Jessica: It's OK to struggle. "Let me struggle. It's fine. I will get to the pickles eventually." But that instinct has always been to help and support. And then yeah, sometimes I'm like, "No, you lift that, you do that." And he's like, "Yep. Yes, ma'am," and he does it.

Dan: Can I answer the question?

Jessica: ...overprotected. It's a little overprotection we got to watch.

Dan: Yes, it's every now and then I slip on it. And for example, we'll suggest an activity that is, "Oh, wait, no, that isn't going to work." But in general, it's just become natural to our lifestyle and our choices of, you know… even down to some major decisions, like what vehicles are we getting? And where are we going to go on vacation? That kind of thing. Because we are parenting a full set of special needs kids. And so, everything requires a little extra planning and a little extra consideration. And also just becomes more thoughtful.

Trina Wilcox: Which is really good for you, being volunteers for the Arthritis Foundation: being compassionate and understanding. So, it was kind of a no brainer that you'd get involved, or was it?

Jessica: We really didn't become involved until 2015. We had moved from Ohio to Florida, and the 2015, at the time, JA Conference was being held in Orlando. And we had just moved from Ohio to a new state. I said, "Hey, this might be a great time for Jaden to meet other kids his age with arthritis," because I never met anyone my age with arthritis before.

Trina Wilcox: Same.

Jessica: So, I'm like, I don't want him to have that experience. We decided to go to the conference. And initially we had a conversation, and Dan's like, "I don't think we need to go. We kind of know what we're doing." I said, "Well, let's just go for the socialization and see what happens." And those who know me now in the… This is our 11th year, by the way, and how involved we are. Kind of laugh at this story, but our very first conference, I was quiet the whole time. I was taking it all in.

First, I was learning all the new protocols, right? And just being really mindful on the kids' experiences and, you know, if they were doing OK. It was a very large conference. But then I realized it was the first time I finally met someone my age with arthritis at conference. And we have mom sessions, like just moms networking, and it was the closing one. And we're making connections. We kind of call it the "Kiss and Cry," and, you know, being very emotive. And someone put a microphone in my face and they say, "Hey, you know, what have you taken away?" And I started talking, and it just hit me.

Trina Wilcox: Here it came. Yeah.

Jessica: It hit me. I melted. And talking about, this is the first space I'd ever been in where there was someone my age with arthritis. I met other moms that grew up with it, similar story to me. It was the first time I wasn't weird, let alone my kids meeting people. And so, coming off of that weekend, one of the moms group committee members reached out to me and invited me to be on the planning committee for the moms group for the following year because they want a perspective of first-timers that had been in the summit, conference. And we haven't left. So, we've been involved…

Dan: We're still here, 10 years.

Jessica: Yeah, we're still here.

Dan: Ten years on planning committees.

Jessica: Yeah, various planning committees. I ran the moms group for several years now. I'm working volunteer coordination with Jen Cox. We are wearing our matching Mickey ears today. It is "Be Yourself" day, so that's why I'm in my Disney... So, she was one of the first people I met and still one of my closest friends. And when we would have bumps in the road with Jaden, she would be the one I would call and get that support. So that's what really kept us engaged… are the connections you make.

Dan: I'm not nearly as exciting as Jessica is. I've been very involved with summit and conference prior. And a big reason, a big motivator for me, is that it's tougher historically for the dads. We don't have the amount of networking and outlets and connections that the moms group does. And part of it is that dads don't necessarily tend to be so open and interested in the conversation and that sort of thing. And so, I got involved pretty much right after Jessica got involved with the mom's group the next year. I said, "Hey, I saw how great that was for you," and I put my hand up and said, "Can I be on the committee for the dads?" And kind of helped plan dads’ events for a couple years. And then I co-chaired the dads and male care groups group, as we repackaged it for a couple of years. And I also do every year pre-conference session on traveling with disabilities.

I am professionally in the travel industry, and I share the knowledge and do a Q&A for everyone on: How do you get through the airport with a wheelchair? How do you arrange handling with TSA Cares, to ensure that if you're traveling with liquid meds that you don't have hiccups with screening? And think about the logistics of getting on and off of airplanes if you're traveling with assistive devices. We've lived that personally as a family. And also I live that professionally in my day-to-day. So, it's very much in my forefront to be able to share that and hopefully make everyone else's travel experiences easier.

Trina Wilcox: Yeah. I'm sure you're doing that. And I like what you're sharing that you're helping everybody get involved. Like we've said, that a chronic condition is the family's chronic condition. And then to support one another, like at the JA Summit, you're all getting the joy, too, and sharing those experiences. That's very important. So, thank you guys for what you're doing. We really appreciate that.

Dan: Thank you.

Trina Wilcox: One of the quick things I wanted to touch back on, when you were first diagnosed. Something that is very important about everything the Arthritis Foundation does is the advocacy and the support, and making sure people know they're not alone, especially young people. So, when you were diagnosed, even though you were around, you know, teenager, right? Or young adult?

Jessica: Yeah, the debate went on until I was about 14. They finally said, "OK, we'll call it arthritis." Yeah.

Trina Wilcox: Yeah. So, what insight though, for you, was that, like, "I don't tell anybody, this is so private." Or were you open with it?

Jessica: I tried to be open with it, but at that stage, like when I was a teenager, I was the youngest kid in my grade. I started school a year early, the youngest kid in my grade. I was very accomplished in music. I was kind of an outlier in a lot of other ways. I didn't need more attention. I got bullied quite a bit. If I was on crutches, people would take them during class and short them. Or they would write, "Jessica's a hypochondriac" on the board, so I got a lot of negative attention. One of the positives for me was that, because my father worked in a professional sports industry, I had great care through sports medicine, and I got to go to physical therapy with some really famous athletes. So, I had that going for me.

Trina Wilcox: There you go.

Jessica: So, I stopped trying to explain it because I couldn't explain it. I would try to explain around it, like, “Oh, my ankle’s just sore,” just kind of explaining around it and trying to hide it. So, when he [Dan] called me out my freshman year, he saw it for what it was. It was really shocking to me, because I think you [Dan] probably understood it better than I did at that point. So, when Jaden got diagnosed and they had more concise language to put to it, we completely changed.

You know, I was raised to just show up, just do whatever. I can do anything anyone else can do. And if I chose not to, it was my choice. Right? With our kids, it's that same approach. Like, we show up. Inclusion, acceptance, doesn't happen in hiding. It's just: Show up. But the gift I could give them that they couldn't give me back then was that they now have the language to explain if they choose to.

Trina Wilcox: Yeah, yeah.

Jessica: Right? If they are getting bullied about it, they have better tools to use and better advocacy skills. Because, I mean, if the doctors couldn't explain it to me, how could I explain it to other people?

Trina Wilcox: Right. So, when you kind of go back, what's one of your best tips that you would give for some other parents that are dealing with a newly diagnosed child?

Jessica: When I talk to newly diagnosed families, one phrase I always use is, “for now.” “This is scary — for now. Nothing is permanent.” That beginning stage, you're still getting information. Your child is growing. Things could change. Someone's experience, you know… You hear someone's story that may not be what yours is, because there's so many factors. And as I use, you know, my son and I is an example: The science is always evolving and kind of quickly. Because, you know, as a kid, my experience versus his: 

wow, night and day. And it's not that long of a time. If we're looking scientifically and in terms of research, this is pretty quick. It doesn't feel like it some days.

Trina Wilcox: It doesn't feel like it some days, but you're right, yeah.

Jessica: But it’s pretty quick from a research standpoint. So, I encourage them to just embrace this idea of, “for now.” Right? So, “Today it might be hard. That’s just today. Tomorrow could be better.” And to try to slow down. Your child is still your child. They might have arthritis, but they are still everything else that makes up who they are. That doesn't change. So, you know, if they're into sports and whatever, it may have to be adapted for now, right? They can still love that. They can still participate in that.

So, I encourage them to take a breath. In most cases, these decisions that we have to make don't have to be made right away. You can leave that appointment with a list of possibilities and ideas. Even as a mom, I mean, I have a great rheumatologist who understood. I'm like, “I can't start that infusion quite yet because I'm about to make a medication change with the kids. Give me a couple months.” Because if that wipes me out and I can't mom on that medication, I need to come up with a plan B, right? So, it's encouraging that flexibility, getting information, and doing what's best for your family, and understanding that, you know, it's OK. You’re going to make the best decision you can with the information you have. If that doesn't have the outcome you're expecting, that's OK.

We just pivot, we try something else. Parents today, I think, they have all of these options that we didn't grow up with. So, I'm like, "Oh, you don't know how good you have. You got choices." It's not just Advil or Tylenol, you know, or prednisone. So, it’s encouraging them to kind of slow down. Let the journey unfold one step at a time, and involve your child as much as developmentally appropriate. Because they have to own their journey, too.

Trina Wilcox: Yeah, yeah. Good tip. How about you [Dan]?

Dan: I think the "for now" is a great point. And just about anything, I mean… Jessica's mentioned adapting sports, but just about anything can be adapted, you know. We can adapt a computer workspace. Just about anything can be adjusted to work with the person and their limitations. But the big challenge for dads is: We fix things.

You can't fix this. I can't run out to the toolbox and open any drawer and get something out of it to make my child better. However, there are things I can do. For example, when we moved into our house in Charlotte, one of the very first things I did was replace every single doorknob in the house. Because round knobs, where you have to twist them. You… (laughter)

Jessica: That's how I got called out in college. It was a round doorknob.

Dan: They can be very, very challenging. Lever doorknobs are a whole lot easier. So, I walked around the house, made a list of how many locking, how many, you know, hallway… how many whatever's we needed. And we jumped on the Lowe's website and we picked a style we were good with. That came in the color to match the rest of the hardware in the house. And I came back with two five-gallon buckets full of doorknob kits. And probably spent an entire afternoon, and maybe part of the next day, literally changing every single doorknob in the house. And so, no, I can't make the arthritis better, but I can help make their world better to live in it.

Trina Wilcox: And as a daughter with a dad that also was able to show… Both my parents were great at showing me ways around, over, under obstacles; but he specifically, "Let's go out to the tennis court. You can't do one-handed; do two-handed. We're going to figure this out." And I think you are probably giving your kids the biggest gift that you don't even realize. Because that ability to adapt and be resilient comes in all aspects every step of the way of life. So, it's a good testament to what… You're paying attention and doing what you can. You're doing a great job.

PROMO: Don’t face arthritis alone. The Arthritis Foundation’s Helpline is a valuable resource to get answers to your questions about arthritis. You can also get referrals to a variety of resources tailored to your specific needs. Our friendly Helpline team offers guidance and information to help you navigate your unique arthritis journey. Call 800-283-7800. Or look for the chat button online at arthritis.org/helpline.

Trina Wilcox: Alright, I think it's time to bring on the kids in the next segment. Jaden, if you want to come on up to the mic and tell us all about your experience. You've been busy this week at the summit.

Jaden: I've been running around like a crazy person today. Like Dad said earlier, he's found a new home with the entertainment committee. And I've kind of joined in that bandwagon. The last couple of years has kind of been just while we're here at summit. But this year I was able to take on a bigger step, bigger role, getting back on the planning committee side of things.

My junior and senior year was crazy. And it was like I can't do anything but school. But being in college, you have a bit more flexibility. I'm going into my sophomore year at Kent State, so super fun. But I have a bit more of a flexible schedule. So, I was able to hop in, in kind of planning stage, and I've been running around helping out doing bingo event. We have a big, big bingo game that we play all weekend, where kids kind of run around and find, you know, who's from a state next to yours? Can you find an authorized Foundation staff member? Have you met Rosie the Panda yet? So, all these cool little networking things, that was kind of my… My big piece this year was the bingo game.

Trina Wilcox: So, it doesn't seem like your diagnosis is slowing you down.

Jaden: Not particularly.

Trina Wilcox: But tell me about how it is trying to do all of those things and to share what your diagnosis is as well.

Jaden: I have spondy as well. I've had it for… I was, what, 9 years old? 10 years old? I don't remember ages.

Jessica: You had a single joint at age 5. It was peripherals at 7. At 9, it hit the hips and spine, and they switched it from poly to spondy.

Trina Wilcox: OK. And you don't hear a lot about that. So, explain quickly how that differs from rheumatoid that directly attacks the joints.

Jaden: So, spondy has a fun little add-on: It also affects my muscles and my connective tissue, so pretty much everything in my body. I learned, we learned, a new thing when I was in seventh grade that it also goes to my stomach.

Trina Wilcox: You guys all excel, don't you? I mean…

Jaden: Yeah, we're all overachievers. So, yes, I have days where like my joints hurt. My big tell is my left knee. It's kind of where it all started, was my knees. So, whenever my left knee gets angry, I know something's about to go down. But I also have the added issues of, you know, my muscles will get tired. That tends to be more of where the issues are right now, is where my muscles will get stiff. I don't have a lot of joint pain, you know, knock on wood. But as of late, it's been more muscle issues, which is much more manageable, right?

For me, it's when I stop moving is when it starts hurting. So, these kind of events aren't always a huge issue for me because I can just keep moving and I'm fine. And then the connective tissue doesn't come out a lot. The only… Like I said, my stomach is the biggest place where I've had issue with the tissue stuff. But that only tends to become an issue when I'm having an arthritis flare-up.

Trina Wilcox: So, are you really good at knowing your boundaries? Or do does the family get involved to kind of pull the reins back?

Jaden: I used to be very, very hesitant with my boundaries. As in: I wouldn't push them. I would hide. I had an experience: So, I'm a band kid. And theater. I do band and theater. I've been doing it since I was in eighth grade. I'm a percussionist. And the way it worked at my school was you have to spend one year in front ensemble before you can move onto the field if you want to do something like drum line, right? I had to miss, it was like 45 minutes or an hour a week or something of practice, because I was doing therapeutic horseback riding, because at the time the big issue was my hips.

So, therapeutic horseback riding kind of helped the hips move. And the big issue that my band director had was, "Hey, he's missing time." He wasn't a big fan of that. I got moved down to auxiliary, and that kind of started the whole “not pushing my boundaries” thing. Throughout high school, it was a lot of, “No, I can’t do this because it’s going to be too hard on my body.”

As I've grown into an adult, especially now that I'm on my own in college… We live in North Carolina; Kent State is in Cleveland, Ohio. It's like just south of Cleveland, Ohio, so nowhere near Charlotte, North Carolina. We have, we call them "friemily," you know, friends, family members that are close by if I do need help. But I've kind of like, "You're on your own. Good luck." So, I've gotten better at pushing myself.

Trina Wilcox: Yeah.

Jaden: I do CrossFit now three times a week with my mother, sometimes with her, sometimes on my own, which I never thought I'd be able to do. And I am keeping up with it, right? I'm not… Yeah, sometimes it gets a little sore, but I'm finding what I thought was, "Hey, arthritis is mad at you" is just normal. And that leads into the big struggle I've had my whole life, which is: I was diagnosed when I was 5. And it was spread to everywhere by the time I was like 9 or 10. So, most of my active, like, grown-up life has been with this condition. So, I don't really understand what it's like to not have it. I don’t know what's the “normal ouch” and what’s…

Jessica: …the “danger ouch.”

Jaden: Yes.

Trina: So, you just kind of start to learn what you can do and what you shouldn't do as you go. But growing up when you could tell there was an impact on the family, what was that like? And what was that specifically that stood out to you?

Jaden: I think the biggest impact, it's like, when I first, you know… I was young. We lived in Columbus, Ohio, and there's a place up there called Magic Mountain, right? It's this little, like… It's not like a theme park.

Dan: Permanent carnival.

Jaden: Yeah, it's like a permanent carnival. I have a memory of, I think it was like a family outing, and all of a sudden, I could barely walk without being in a lot of pain. And we'd only been there for like two hours, and it was like, "Oh, dang, I have to cut the whole family outing short." So, that's always kind of sucked because it… I've sometimes been a limiting factor. Sometimes it's been Mom's arthritis that's been a limiting factor, where it's like, "Hey, we've only been here for like an hour, but I'm already done. I got to go home and go to sleep." It's definitely difficult. And oftentimes, I get the feeling of: I'm the problem. But I mean, yes, I'm the problem, but I'm not like… I’m not Taylor Swift. (laughter)

Jaden: I mean I'm not like 'causing the problem.

Trina Wilcox: He did say he was a theater kid, so...

Jaden: But it's hard sometimes. Because you don't want to be the reason you can't do something. Or the reason something has to get modified. The biggest thing has been sticking out in school. In middle school, I used my wheelchair a lot. But I didn't use it at all in high school because I was just, I was in a spot where I could, you know, manage without having to use it.

And there'd be times where I'd have to call in the middle of the day, and Dad would be on a conference call, Mom would be at work, and someone would have to shove it in their car, run it over, and I have to hobble up from class, because they can't go back in the building. So, I'd have to hobble up to the front office and go get it. And it's that feeling of like, "You're a burden."

Trina Wilcox: It weighs on you.

Jaden: But at the same time, it's like, "Yeah, you might feel like a burden, but it's OK." Right? Your parents are here to help, right? Even if they have their own struggles and challenges, being a burden is OK sometimes.

Trina Wilcox: So, Mom, with your background in mental health and stuff like that, how did you reach into your bag of tricks and deal…

Jaden: And I'm really bad at hiding my emotions and feelings.

Jessica: Oh, he cannot … 

Trina Wilcox: How do you deal with that? Because a lot of parents don't always know... Is my kid telling me everything they need to do so I can support them? What does a parent do when they're trying to support?

Jessica: Funny you mentioned telling me everything. I have to share a funny story. So, you know, we've always raised these kids to be their own self-advocate. I don't know what you don't tell me. It is also OK if you choose not to tell me something, but you're also choosing the consequences on your own. I'm not going to read your mind. That's just not a thing I do. That's not what the doctor says, so…

Trina Wilcox: One of the superpowers you don't.

Jessica: Yes. So, Jaden admitted he was talking about the stomach issue, right? So, he had an issue, he was vomiting blood, which is like…

Jaden: Like, I was that, overnight.

Jessica: No matter what, that's an emergency, right? So…

Jaden: It was like all of a sudden, overnight. It wasn't like slow…

Jessica: It was, you know… I get a call from school, "Hey, great." So, they scoped him, and they said, "Look, he's got all this inflammation. It's the lining in the muscle of his stomach."

Trina Wilcox: Oh, no.

Jessica: It's related to the spondy. OK, little med shift, like it quieted down. But then he realized, “Ooh, I can stay home from school. And I like doing things like playing with my laptop and coding,” and, you know, he is very technologically gifted. So, we realized he was maybe playing that part up a little bit.

Jaden: As a normal kid who was bored and didn't like school.

Jessica: So, when we all put two and two together, it's like, "OK, here's the choice you made. I am totally OK with playing the medical card, because I think these kids go through enough that, every once in a while, you’ve got to throw it to get out of something. You've earned it, you know. You've earned it. But I'm like, "But here's the consequence," and it was just a matter of walking the logic through. Because these kids are going to make these decisions on a larger scale without support as adults, right? So, when it comes to the emotional reaction and it's like, "OK, go have your feels, you have to experience this." We don't say, "Everything's going to be OK." We don't Band-Aid it. My kids will all tell you like, when he started the shots, that, to me, the bigger impact on the…

Jaden: That was a rough time.

Jessica: He did not handle the injections well. And we're talking a lot of scream, like we tried…

Jaden: I would run around the house screaming, crying up the stairs, down the stairs…

Jessica: Oh, it was epic.

Jaden: I had a horrible fear of needles. It was bad.

Jessica: Which he was, but he was fine with immunization, like the normal childhood immunization. It was when we had to start dealing with the arthritis. And if I say the words chocolate pudding, there goes the face. Because when he has started taking methotrexate, little tiny pills, he'd never swallowed pills before. He had been totally healthy until he wasn't. He never even had a fever until he was 2.

So, he had to start taking pills. I tried to put it in chocolate pudding. When he found it, took the bowl of pudding, chucked it across the room, where it hit the sliding patio door and like started sliding down. And at the time we had two little dachshunds who were like, "Yes," right? And ran. And dogs can't have chocolate. (laughter)

Jessica: So, it was this…

Trina Wilcox: No chocolate. (laughs) Save the dogs.

Jessica: It was this epic scene of: He's screaming, I'm yelling at someone to get the dogs, we're trying to clean this up, his sister is finger painting now in the pudding on the patio door, because she was 2 or 3 at the time. It was just like, "Is this my life? I can't believe this." He still won't eat chocolate pudding. And…

Jaden: Yeah.

Jessica: I used to, as the psychologist I am, "Exposure can be good." So, we had one bad experience with chocolate pudding. The brain is going to associate…

Jaden: You had... No, no, no, it was a couple, because there was one time where they ran out of the little pills, so we had…

Jessica: Oh, the big...

Jaden: ...fat ones. Because I would have five or six.

Jessica: Probably this big, but he's going to tell.

Jaden: I was 6, so they were big for me. And you crushed it up in the pudding.

Jessica: Yeah, I tried.

Jaden: That's what ruined it.

Trina Wilcox: So, the gritty pudding ruined it.

Jaden: It's the gritty pudding.

Trina Wilcox: Yes, I can see the texture.

Jessica: So, every once in a while, we'd go shopping and I'd just casually put a six-pack of a Snack Pack in the cart, and it would go right back and get shoved on the shelf with some gusto.

Jaden: Yeah.

Jessica: Or it would be put in at random, so soon as you realize that, it's like, you know, it's in with the eggs now.

Trina Wilcox: Oh, my gosh.

Jessica: I'm like, OK, you know? That is that association, right? That irrational fear. And we know things like methotrexate, the color yellow, kids can respond to it. A developing brain is going to associate these things. So, we tried to keep the shot and experiences as consistent as possible. Then, when we, you know… the screaming and the carrying on, you just have to grab them, pin them and go. And research actually backs that.

Dan: That was my job.

Jessica: That does not actually traumatize them. That was Dad's job. I would do the shot, he would do the holding, because again, arthritis… I don't need to take it, you know, hit to a joint either. But then I started kind of going into my neuroscience background. My biggest tip for new parents, which really worked for him [Jaden], was: confusing the brain signaling. So, if you...

Dan: Shock candy.

Jessica: Yeah, shock candy. So, the brain is wired to protect us, right? So, giving him a shot in the leg, but at the same time I put a really sour piece of candy in his mouth. This neural pathway is shorter than, you know… Mouth to brain is shorter than leg to brain. So, the brain's going to freak out and go, "What's in our mouth? Is this dangerous? Is this poison?"

Trina Wilcox: And then, boop.

Jessica: He's not going to feel the shot.

Trina Wilcox: Did it work?

Jaden: Yes.

Jessica: Yes.

Trina Wilcox: No way. But could that work in the same way because it's something…

Like, so it's overriding the…

Jessica: It's similar to, like, parents will use the Buzzy to like vibrate that. He was super sensitive to the Buzzy.

Jaden: I don't like vibrations.

Jessica: He doesn't. That was overstimulating for him. And then the numbing cream doesn't get, like… At the time, we had Humira with citrate, with the preservative. It would burn.

Jaden: Now, they have a non-burning option. She's on it. She is the non-burning option. I was on it for so many years and I had to get… It was burning every two weeks.

Jessica: He's not bitter at all whenever I pull out my Humira.

Jaden: No, not at all.

Jessica: He flips me off. It's great, because mine doesn't hurt. But the numbing cream doesn't get into the tissue where it's burning. But if you do the sour candy, it confuses the neural signal.

Trina Wilcox: Interesting.

Jessica: And so, when he got older, he's like, "Can I just have my candy? I don't really need it, but I just want the candy." And we kind of kept that tradition. And then when he was 15, we had the conversation, and I'm like, "OK, you have two choices. We can work you into that independence, or I'm going to college with you." (laughter) I bet I could get a job as a professor. He's like, "Give me the shot."

Jaden: It took a couple weeks to get there. I think the next rheumatology appointment I had actually, because we had one like a week later. My nurse, Anna, she's my rheumatologist head nurse, she's amazing, she brought in this little like training pad they use on the nurses. And I was like, "OK." She kicked Mom out the room. And it was just her and I. And she put the little pad on my leg and just like, "OK, this is how it works." And she talked me through it. And they had… I was on Orencia at the time, I think. And they had a model syringe there that was the same shape as the Orencia syringe. It's got this plastic auto retract thingy on it.

Jessica: The trainer.

Jaden: Which is nice. And she walked me through that. And that was like the big first step into getting that independence. And now I just do it on my own. I've been on my own for a couple years now. So, I bring a little lunchbox looking thing, and I just bring it wherever I go.

PROMO: The Arthritis Foundation provides essential support to families living with juvenile arthritis, or JA, and other childhood rheumatic conditions — through education, resources and community connections. We offer programs and events that bring families together, fostering a sense of belonging and shared experience while encouraging emotional well-being. See what’s available at arthritis.org/ja.

Trina Wilcox: So, oh, we have siblings sitting over there in the background, too. Let's bring them into the conversation and see what it's like to be a sibling to someone else that is dealing with a chronic condition. Or if you have a chronic condition and want to share about that, too, what that's like. So, we'll introduce Lillie and Nick.

Dan: Hey, we're all here now.

Trina Wilcox: Awesome. Welcome.

Lillie: Hello.

Trina Wilcox: What's it like to be a sibling with chronic condition all around you? And do you have one of your own that you'd like to share?

Lillie: I do. I actually have quite a few. I live with a few neurological disorders. I have epilepsy and something called autoimmune encephalitis. My immune system will actually attack my brain instead, which results in brain swelling and behavioral changes, seizures. I'm not like myself at all when I'm in a flare. And then —was it almost two years ago? — I had a seizure that paralyzed me waist down. For four months, I couldn't walk. And that has then left me with my own lovely connective tissue issues. So, I am hypermobile with everything but my lower spine and my right elbow. It's my good joint. But that has kind of led me to a deeper understanding of how his life has felt, because the last six-ish years I've dealt with my own form of chronic pain. I have neuropathy in my butt and my legs. And so, I've always kind of had that pain. But until I was on steroids and actually a biologic, we're like, "Oh, I feel great now."

I've learned about this at Summit, so like, cool, that's probably a joint issue, because I've learned so much here learning about his condition that it gave me a little more insight on my body and how I feel, and kind of what I need to do for myself, which kind of also gives us a deeper mutual respect for each other. Because it's now, like, I give him one look, and he knows I'm not OK, and he should probably leave me alone.

Trina Wilcox: Yeah. (laughs)

Lillie: (laughs) Does he? No.

Jaden: I still have to have some fun and some sport.

Lillie: Yeah. He still likes to annoy me for sport. My aim at throwing a sock ball is great. And he likes to come in and out of my room when I don't want to get out of my bed, so I just keep sock balls in my bed, and I throw them at him. But I mean, it's given us more of a respect and understanding for each other and kind of how we've grown up. You know, I've always grown up with a chronic illness in my life, whether it's my mom or my brother and now me. But I was diagnosed with chronic migraines at 6. I'd had them since I was 5. My parents just thought I was a really creative kid, because there's fireworks on my walls. But really, it was affecting my optic nerve. It wasn't until I was 7, almost 8, I got diagnosed with epilepsy. And then I didn't get diagnosed with encephalitis until I was, what, almost 11?

Jessica: The first flare was 9 and they…

Lillie: It was almost 11 before I properly got diagnosed.

Jessica: ...didn't know what it was. Yeah. That was a hard road.

Lillie: So, but I had seen him go through it. And he's gone through it. So, he was really able to support me and be like, “Hey, this is an MRI.” My MRIs take two hours because, you know, sometimes longer, because they do my brain and my eyes and my spine and my hips. It takes forever. We don't go through the same tests and procedures, but it's similar. So, I've kind of been able to be like, "Hey, I know what this is." When I started doing methotrexate for my own conditions.

Jaden: Phew.

Dan: She said, "methotrexate."

Lillie: Trigger word for him, but I also don't like the color yellow. Gross. Get it away. Because they…

Trina Wilcox: I feel like I can taste it.

Lillie: It's bitter. It's gross.

Jaden: Oh, my God. Yeah, it's disgusting.

Lillie: Same thing with prednisone. You say, "steroid," I get so mad. I don't do those. I had learned here through the Panda Clinic how to give an injection. They didn't make the autoinjector for the dose I needed. It was too high of a dosage. I would have to do two to three syringes every other day, sometimes every three days, for almost a year, something like that, to suppress my immune system for my other treatments. And so, it's like, "I got this, give me this syringe." And boom, boom, boom, did it. I was done because I had grown up watching him do it and…

Jaden: She was able to do it right away. It took me so many years to get to that point.

Lillie: Yeah. No, my parents never did my injections. I did them myself.

Jessica: It's not a competition.

Jaden: Let the record show she was also older when she started them. It wasn't…

Lillie: This is what we do. This is what you do.

Trina Wilcox: Well, since you're all involved in the Foundation, and you were just on a panel, and it was about sibling support. So, what would you say to other kids out there that have siblings, or even the sibling of someone that is dealing with a chronic condition? What's the best way to be supportive and as empathetic as possible?

Lillie: Communication. That's a big thing I've touched on in all of the sibling sessions today. The panel I just did was the parents talking to siblings. It was a great thing. But the big thing they came up with is “how do we treat our kids?” Because a lot of kids with JA tend to get more attention, especially if their siblings don't have their own chronic illness. I had brought up the point that their kid actually started faking being sick, because she wanted the same attention that her sister got. But she didn't understand. I mean, she's 6; she doesn't understand that, "Hey, my sister actually has this lifelong thing. She's just not sick for a week like I can be."

You know, figuring out how to communicate with your kids, like, "Hey, your brother's doing this," you know. "This is what's going on. This is why he's more upset. He's not mad at you; he's mad at the world; he's mad at the situation." You know, "You didn't do anything wrong," because for a while, especially when you were younger, when he was in a lot of pain, he couldn't describe what's going on.

Especially when I was younger, I didn't understand it. I thought he was mad at me, and I had no clue what I had done wrong. I'd walk around, I'd try to bring him things to cheer him up, I'd bring him random stuffed animals or a cupcake. I was doing everything in my power to be like, "Hey, I don't know what I did, but here you go. Let's hope this is right." And it would only make him more upset because he wanted to be left alone. So, it’s…

Jaden: Yeah, I don't like people.

Jessica: Yeah, we know.

Lillie: So, it's figuring out that mutual connection of like, "Hey, let's…," like, "I'm in pain, I need an hour to myself." If my door is closed, that means don't come in. Or you know, for a while we had a sign that says, you know, "do not disturb," or "do not knock." Things like that. So, we knew like, "Hey, he needs this time alone. I need my time alone," or like… For me, it's easier to put my emotions into words. Like, I can't speak them; it's easier for me to write them. So, I would leave little letters for my parents, be like, "Hey, I'm feeling this right now. I need to talk to you." I'd slip it under their door and I would go to bed. And the next day they would talk to me or would go for a car ride or a walk or something like that where... I sound like a dog. (laughter)

Those are the things that distracted me and helped me, because I knew, like, "Hey, this is a safe space. I get to sit in the front seat for once, and I get to pick the music for once." But it's like, you know, I get to be in control of the situation. So, it's kind of giving us the siblings the autonomy to pick. A lot of siblings have to go to doctor's appointments. That can be scary for a sibling who doesn't understand what's going on, nor do they really want to be there. Sometimes it's like, "Hey, you know, you're the only parent at home. You have a 6-year-old you can't leave home alone. Yeah, bring him." But if they're an older kid or a teenager, there's someone that can stay at home with them, let them stay home. They don't need to be involved in every aspect, as long as there's some communication about the situation.

Trina Wilcox: Well, Nick, that brings me to asking you what it's like to be a sibling with everyone around you having a chronic condition and dealing with all the stuff they deal with.

Nick: Yeah. For me, it's definitely hard on what I try to think of when it comes to my brother having a chronic condition. I think that a lot of times when I was younger, I was told by my parents, "Hey, can you not be in the room right now?" You know, "We're doing shots," or "We're trying to talk about something." I go in my room. You know, our rooms are right next to each other, so I can really hear a lot of things. So, hearing that he's in pain or he was mad about something that happened at school today, or even me being younger that I didn't really understand, but seeing my brother not as happy as he is, it was definitely hard on me.

Through the years of me being older, and me understanding, and him being in college, he can drive, I've gotten to talk to him more about it. And me being a serious runner, I can't relate, which is hard. And trust me, I would never want to have that condition, but

not having a person to talk to when, I mean, he does; he has friends that he can talk to, but as an only brother, I can't really compare or say, you know, "I get it." It is also hard for me, but there are sometimes where it's like, you know, after a run, my knees are hurting a lot, and it's from the impact. And I talked to him about it because he understands where the pain in his joints are from. And like what I can do to help: ice, heat…

Jaden: Yeah.

Trina Wilcox: Jaden, what is the silver lining for you being a part of this family?

Jaden: Like Mom said, playing that medical card sometimes when I need to. (laughter) Yes, there are days where I just need to not do the things, right? Days where I just… I've had a stressful week or stressful day. School is stressful even for a normal kid. So, the way I had it set up, and the way I have it at college now, too, which is really nice, is I just have a letter from the university where I say, "Hey, doctor whatever, you know, Dr. Smith, I'm not having a good day. Can you send me lecture notes? Here's the letter from the university explaining why." And it's just having that flexibility where I can also just take the break as I need to. Pity candy on Halloween.

There was one year where I went as Harry Potter. It was, what, two days before I had started a giant flare. So, Mom came up with the idea, "Let's take the broomstick and strap it to the bottom of the wheelchair." So, I still had the broomstick…

Jessica: And Hedwig was on the handle.

Jaden: And Hedwig was on the back handle. And so, Mom was one of the two of them who wheeled me around, I don't remember who it was, wheeled me around, and I got so much candy. It was awesome. So, people definitely give me pity candy.

Jessica: Well, because one of our driveways is up a hill. And so we couldn't get him up to the door. So, people were coming down and giving... (laughs)

Jaden: Like handfuls of candy.

Lillie: So, I'll go: Especially the last few years, I'll use my crutches or my cane on Halloween, um, and I mean…

Jaden: Because you need it, not for the…

Lillie: Yeah, no.  No, because I genuinely need it, not for the pity candy, but an added bonus is: People are like, "Oh, poor child. Here." Like, one house gave me five full-size candy bars. And I'll have candy, especially if we go together, it's great, because I'll run up to the door, and I'll get the candy for him (Jaden); I'll bring it back, and they're like, "Oh, you're such a good sister. Take extra candy." And so, we'll have Halloween candy until like March. It's great, because then, by March, you get all the candy on sale at the store, which lasts you until Christmas, and then you get all the Christmas… It's just an endless cycle.

Trina Wilcox: Nick, are you also a candy fiend?

Nick: When I was younger, I used to be. Now that I'm allergic to dyes, I don't kind of participate in having the candy that I can't have.

Jaden: Used to get a bunch of chocolate though.

Nick: Yeah, I do. I definitely do go out with my friends.

Trina Wilcox: What's the silver lining for you?

Nick: I think that it's awesome that we've been in the Arthritis Foundation for years now. And again, now that I'm older, I'm starting to understand a lot and definitely experiencing every moment of it counts. And like, yes, seeing my brother in pain does not always make me happy. And like having him at college, I never know what's really going to happen. If he's in pain that day, I can't just go and call him because he's miles away, but he's also in class, he's busy. I know that there's friends and family to help him there, but it's definitely hard to not know what's happening.

Jessica: It sounds like a silver lining is trusting other people.

Nick: Exactly.

Jaden: Yes.

Trina Wilcox: Yeah.

Lillie: I want to say another major silver lining, especially for me, I've experienced quite a bit this summit, last summit as well, is: I've made so many really good, lifelong friends here, whether it be because I've been on planning committees — I was on the high school committee for three years; I shadowed the sibling committee this year; and the next drop I'll be on the sibling committee. But I've made some of my closest friends through this.

Trina Wilcox: That's not the first time I've heard the benefit of friendship coming out of this. So, we've learned that candy is a big silver lining for a lot of you. (laughter) Mom and Dad, what are your silver linings?

Dan: The candy the kids can't eat.

Trina Wilcox: (laughs) Alright.

Lillie: Because of the dye allergy, he gets all the good stuff.

Dan: But, no, seriously: I think it's we've had a lot of experiences and done a lot as a family that we maybe would not have done otherwise. And for me, one of the big pieces is I've gotten to be a lot more involved with a lot of activities that the kids have done, I think, than I would've been otherwise. And sorry, Nick, I haven't been able to do it so much for you, just because you're out there and you're doing your thing and you're on your own and you're awesome at it. But Jaden and Lillie have needed some help along the way with some of their activities. And I've gotten to be places and experience things with the family that probably I wouldn't have had the opportunity otherwise because we're on the sideline ready to be of help if help is needed.

Trina Wilcox: Jessica, what's your silver lining?

Jessica: I think the silver lining is just the inclusivity, right? So, as you're saying, "OK, sorry, Nick," right? Because honestly, going back to the earlier part, he's the one that has to lift their equipment. I get to be more present with Nick's sports. I used to go back and forth between coaching baseball and softball, right? I get to go to the track and field stuff and the cross-country stuff. So, the variety of experiences it's brought to our family has really kind of underscored this idea of inclusivity. And we've all gotten to do different things we typically probably wouldn't have been able to do otherwise.

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Trina Wilcox: Well, you probably know: On social media, before each episode, there's a question, and there's always some great comments. The question this time: "What's the greatest impact juvenile arthritis has had on your family?" And Tamara Schultz said, "It's been almost 10 years since our daughter was diagnosed with JA. One of the biggest impacts on our family has been how it changed the way we see others. We've learned that educating others is a more powerful tool than just ignoring comments or trying not to judge others." I think that is so true. You get a different perspective, and it's so valuable.

Amy said, “Finances and time. We drive 12 hours each way to see our daughter’s rheumatologist. She’s had the disease for 14 years. And money from all the travel, missed work for doctor’s appointments, fighting with insurance companies.” We can all relate to that.

Jaden: That one as well.

Trina Wilcox: “But my daughter is 16 and plays soccer, both club and high school, with these medications, and doctors make it happen.” So, those are great ways that people are fighting against it, for lack of a better term.

Jaden: Yeah. I think it's one thing we've lucked out on is: We've been lucky enough to live in areas with a lot of rheumatology specialists. There's several of them in the Charlotte area. We haven't had to travel a whole lot, at least for my care. With Lillie's, we've had to travel a good bit.

Lillie: Yeah, sorry about that.

Jaden: But I've lucked out on that, which has been awesome.

Jessica: But that's been intentional. When we lived in Florida, we're moving to Charlotte, we're thinking about this general area. His pediatric rheumatologist in South Florida actually said, "I strongly recommend you move to Charlotte. You see this doctor in this practice." By the time we got home from that appointment, the Charlotte doctor's office called me to set his first appointment.

Jaden: And I've been with that provider since we moved to Charlotte. He's awesome.

Jessica: So, it did have an influence on where we lived.

Trina Wilcox: Yeah. You always have to think ahead with stuff like that.

Lillie: The educating is definitely a big thing. You know, I walk around with a service dog, and now I have things that people say, "Oh, you're too young to have it," which I'm sure everyone watching this has heard that phrase before: "You're too young to have this."

Jaden: "You're too young."

Lillie: “You're too young to be in pain." Well, I’ve been in pain since I was 5. Different kind of pain for my brother, but it’s still that education piece. And people say, “Service dog, oh, you didn’t fight in a war. Why do you have a dog?” I have a dog because of these seizures. Yeah, I hear that now at least once a week.

Trina Wilcox: Wow.

Lillie: At least once a week, I get that. And so it's like, you know, "I didn't fight in a war, no, but I have seizures and mobility issues that he helps with." That education piece is a big thing.

Trina Wilcox: I know you guys have a plethora of takeaways from just your whole experience. But from this episode, what's been something, one thing, that stood out to you that just kind of lit up when we were having this discussion? We'll start with you [Lillie].

Lillie: With me?

Trina Wilcox: Yeah. On your toes.

Lillie: (laughs) I'd say one top takeaway, which I mean I've been learning this over years, but especially on this episode, and just being here this weekend, is that how important communication within your own family is. I just talked about this quite a bit on my sibling panel. But right here, you know, hearing my parents' perspective, my older brother's perspective, living with it, you know, that I'm hearing my perspective of, you know, I live with something similar, but it's not the same.

He doesn't have enough mobility. I have too much mobility. So, opposites there, but you know, it's hearing how much that communication between us has helped. We do get an argument sometimes, but being able to communicate keeps us out of a lot of those arguments. Or, I guess, be like, "Hey, I'm in pain, therefore I'm going to be a lot meaner than I usually am," has been able to keep us out of a lot of typical arguments, I would say. I think hearing the two of them, they go on car rides, just talk it out and you'll see how each other… Just a little life check-in. My parents do that with us. I think it's really important that we do that with each other as well.

Trina Wilcox: How about you Jaden? One takeaway from this episode?

Jaden: Oh, well, she stole my communication one.

Lillie: Score.

Jaden: I think being aware, right? Because I'm not. I suck at being aware of things around me. I will, like, fully walk into things that have existed in that spot for years.

Lillie: Really funny.

Jaden: Being aware of what's around you, being aware of the people around you. As Lillie says, I have a tendency to get a little angry when I don't feel great. So, remembering to calm down, talk in a nice tone, they're just trying to help, is definitely a big one.

Trina Wilcox: How about you, Nick?

Nick: I think one of the best takeaways from this episode is hearing my brother talk about how he feels, and how my parents and my sister feels about all of this. And just like, it's a lot to take in. But at the same time, I did not know some of this stuff until now.

Trina Wilcox: All right. Dad?

Dan: I think to sum it down to one piece that needs to go forward and that can be super useful: I hate the term chronic disease. I mean, it's just, yes, that's technically the description, but it's going to be a lifestyle change. No, none of this is a sprint; this is a marathon. This is years, and it's day by day. There's really good days. There's OK days. Every now and then there's terrible days. You hope that there's more good days than terrible days. And OK, this isn't going to work today, so are we going to move it to next week, or are we just going to find an alternative and keep on? But it's just step by step, piece by piece, and we'll get there.

Trina Wilcox: How about you, Jessica?

Jessica: I think the biggest takeaway is that, you know, you guys did it. You've made it. 

Lillie: Score.

Jessica: Right? Smartass. You know, we've talked about kind of this arc in our family that really began when you were 5 [to Jaden]. Right? You were 3 [to Lillie]. You weren't here yet [to Nick], so you miss all of the scary stuff. And this arc that's been going on in our family since you were 5, this is what I was hoping for as a mom, that we get to a point where that communication piece is there, that self-awareness piece is there, the self-advocacy piece is there, right? You are navigating it in a way that, you know, you're still connecting with your siblings, even though you don't have this in common, which is totally fine.

So, I feel like, OK, this is kind of what I was hoping for 14 years ago when this journey with you started. And definitely, this is not what I ever dreamed would've been possible when I was growing up with it, with like zero guidance. So, this gives me a lot of hope.

Trina Wilcox: Yeah. Well, thank you all for being here. I think my takeaway is the reminder of how important family is, and compassion and understanding and empathy. But also your point as to what's going… It's for now. Things change. They can change for the bad, but they can darn well change for the good, too. So, we will leave you with that for now. Thank you for joining me. I appreciate your time and everything you're doing for everyone with a chronic condition, osteoarthritis, all kinds of arthritis, rheumatoid arthritis. And we hope that you'll learn more. Find out about the summits. Go to arthritis.org for all the information.

Jaden: Come join us at Summit. It's a lot of fun.

PODCAST CLOSE: Thank you for listening to the Live Yes! With Arthritis podcast, produced as a public service by the Arthritis Foundation. Get show notes and other episode details at arthritis.org/podcast. Review, rate and recommend us wherever you get your podcasts, on Apple, Spotify and other platforms. This podcast and other life-changing Arthritis Foundation programs, resources and services are made possible in part by generous donors like you. Consider making a gift to support our work at arthritis.org/donate. We appreciate you listening. And please join us again!