The Benefits and Challenges of Publicly Sharing Your Chronic Illness Story: Ep 107, Arthritis Life Podcast

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Summary:

Brianna shares what it’s like to live with Mixed Connective Tissue Disease, which is is a rare autoimmune disease that involves an overlap of juvenile idiopathic arthritis (JIA), systemic lupus erythematosus and scleroderma. Cheryl and Brianna discuss their experiences living with arthritis and the importance of sharing their stories and connecting with others in the arthritis community.

Cheryl* and Brianna discuss the challenges and the benefits of sharing your story publicly on social media, including how they deal with both positive and negative feedback from a growing audience. They also discuss the positive impact of finding support and inspiration online. 

Brianna shares her involvement with the Arthritis Foundation and the Lupus Foundation, highlighting the importance of giving back and helping others in the community. 

The role of support groups, camps, and patient advocacy organizations in providing a sense of community and connection for individuals living with chronic diseases is highlighted.  Cheryl and Brianna also discuss the value of adapting and accepting one’s condition to live a fulfilling life. Finally, they emphasize the importance of acceptance and adaptation in thriving with rheumatic diseases.

*I apologize that my (Cheryl’s) audio is much worse in this episode than usual because my microphone cord broke right before recording and I had to use my bluetooth headphones!

Episode at a glance:

• Sharing Personal Stories: Both Cheryl and Brianna talk about the importance of sharing their stories with the world, either through social media, podcasts, or in-person events. They discuss the benefits and challenges of opening up about their experiences and connecting with others who share similar health journeys.
• Living with Arthritis:  Cheryl and Brianna discuss their experiences, challenges, and strategies for managing arthritis.
• Quality of Life: The conversation touches on how arthritis impacts their overall quality of life, including daily routines, work, and relationships.
• Support and Coping Strategies: Cheryl and Brianna discuss the importance of support from friends and family and share coping strategies for dealing with the physical and emotional aspects of arthritis.
• Advocacy and Awareness: They discuss their involvement in advocating for arthritis awareness and the importance of educating others about the condition.
• Adapting and Acceptance: The conversation emphasizes the significance of adapting to life with chronic illness and learning to accept one’s condition. They discuss the need to find a balance between managing symptoms, medications, and treatments, and the importance of accepting one’s “new normal”
• Support and Community: The role of support groups, camps, and organizations like the Arthritis Foundation in providing a sense of community and connection for individuals living with chronic diseases is highlighted.
• Lifestyle and Work Choices: The discussion touches on how individuals with chronic illnesses may need to make adjustments to their careers and daily routines, seeking flexible options and accommodating workplaces.
• Coping Strategies and Self-Care: The conversation briefly mentions strategies like using arthritis gadgets, finding joy in pets, and the importance of living one day at a time as tools for coping with the challenges of chronic illness

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Brianna Ramos 

At the age of 13, Brianna was diagnosed with Mixed Connective Tissue Disease (rheumatologist defined it as an overlap of JRA, lupus, and scleroderma). She has been involved in some sort of advocacy or volunteering within the arthritis community since her diagnosis starting with attending Camp JRA for the first time in 2011. Brianna has continued her involvement volunteering with the Arthritis Foundation and especially loves working with her local chapter to plan Jingle Bell Run and other events. Driven by her unwavering commitment to raising and fostering community, Brianna launched her own platform “That Girl with Arthritis” in 2020 and the podcast “Those Girls with Arthritis” in 2021 to share what life is like as a 20-something year old living with a chronic illness. 

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

• Links to things mentioned in episode or additional listening
  • Weight loss & RA: 
  • Arthritis Foundation volunteering – jingle bell run
  • Arthritis Foundation camps for kids with arthritis: 
  • Arthritis Foundation JA Family Summit – whole families not just the kids
• Speaker links
  • Website: www.thatgirlwitharthritis.com
  •  Instagram: @thatgirlwitharthritis
  • “Those Girls with Arthritis” Podcast links 
• Cheryl’s Arthritis Life Pages:

• Arthritis Life website 
• Youtube channel
• Instagram @arthritis_life_cheryl 
• TikTok @arthritislife
• Arthritis Life Facebook Page
• Cheryl on Twitter: @realcc 
• Arthritis Life Podcast Facebook Group

Full Episode Transcript:

Interview between Speaker 1 (Cheryl) and Speaker 2 (Brianna)

Cheryl:  00:00

Okay, I’m so excited to have Brianna Ross on The Arthritis Life podcast today. Welcome!

Brianna:  00:05

Hi, Cheryl. I’m so excited to be here as a guest on your podcast, finally.

Cheryl:  00:12

I know, I know. I think I only virtually met you a couple years ago, but it’s pandemic year, so it feels like 10 years ago.

Brianna:  00:18

Exactly, right. I know.

Cheryl:  00:21

Yeah. And can you start by letting the audience know just where you live, and what is your relationship to arthritis?

Brianna:  00:29

Sure. I live just outside of Tampa, Florida. Actually, we just bought a house a few months ago. But I actually grew up in South Jersey. So, like Philly sports teams, Philly hospitals, Philly everything, is kind of like what I grew up with. And I was diagnosed with a form of arthritis at the age of 13. And I’m 26.

Cheryl:  00:55

Oh, okay. Oh, so you’re exactly at half your life ago?

Brianna:  00:58

Yes. Yeah. It was like kind of like a big year. Yeah, I saw your posts. I didn’t even put the dots together. I always forget. But yeah, today was my, like, this year was my, like, half life, I guess.

Cheryl:  01:12

Yeah, it’s such a strange thing to wrap your mind around. So, yeah, I’d love to know more about like your diagnosis story/saga. Like, when did you start having symptoms? How did you get diagnosed? All that.

Brianna:  01:27

Yeah, it’s always hard for me to like pinpoint it. Because a lot of the symptoms, I think, I was experiencing early on, I didn’t register that it wasn’t normal. And I wasn’t telling my parents about pain or anything like that, that I was experiencing, because I just thought it was normal. And the fatigue and things like that, like taking a nap every day after school and having to take that extra time really was just normal in my mind. The thing that I think the doctor started could, like, the first red flag, I guess, for my doctor’s was I was experiencing weight loss and had the, like, just wasn’t really able to gain weight no matter what I did. Protein shakes, changing my diet, changing, you know, a lot of things about my lifestyle. I was struggling to gain weight. And for quite some time, pediatricians’ kind of questioned me about having an eating disorder. And it was something that, like, it was hard to go through, because it kind of, it was like a trust thing, almost. Because then it made my parents question like, oh, does she have any disorder? And I was like, no, I promise I don’t have an eating disorder. Like, that’s not something I’m experiencing, but I’m experiencing all these other things. But their doctors couldn’t really find another way to explain what I was going through at the time until there was one pediatrician at my practice who finally went ahead and ordered lab work to be done, like a full ANA panel, and some other things. And a lot of markers came up in that from what I remember. I was 13. So, it was kind of like, a little blurry. And a lot of it was between the doctors and my mom, and then to me. But from what I remember and what my mom and I have talked about, it’s that’s what happened. And then, from there, the pediatrician said you need to go to rheumatology. And like I said, we were not far from the Philly area. So, we had Children’s Hospital Philadelphia within like an hour drive. So, we were pretty lucky to have great doctors really close. It took some time to get in to see a pediatric rheumatologist there. But once I did, with everything they had from labs, maybe some X-rays, I don’t remember, and doing like a full body exam. And me finally, like, being honest and recognizing some of the symptoms I was feeling, we were able to get a diagnosis in my first rheumatology appointment, which I was super lucky to have.

Cheryl:  04:24

Wow. And it was that mixed connective tissue disease? 

Brianna:  04:27

Yeah, so that was the first time that I was diagnosed with mixed connective tissue disease. The rheumatologist team then said it was an overlap of juvenile rheumatoid arthritis — which is not called that anymore, but that’s what it was called when I was diagnosed — lupus, and scleroderma. So, since then, the diagnosis hasn’t really changed. My rheumatologist now still sees it as like an overlap of RA and lupus. It doesn’t fit perfectly into either bucket, but it’s still that MCTD, like, mixed thing. Yeah.

Cheryl:  05:11

Yeah. Well, and, I mean, first of all, I’m so sorry, you went through that experience of kind of having, not having answers, you know. And I’m trying to like, be better about speaking delicately about the issue of like getting — of basically being like accused or, with lack of a better word, of having an eating disorder, because it’s not, you know, eating disorders are a legitimate, you know, mental illness that is one of the deadliest mental illnesses there is, truly, so it’s important to rule out an eating disorder if someone’s losing weight. But as the patient, I’m just, I’m reflecting because I recently shared my diagnosis story in more detail. And I had a few people say that they listened, it was a bit triggering for them because they’d had a history of eating disorder. So, I’m kind of going on a slight tangent, but wanting to recognize that, like, it’s hard to talk about these things, you know, and it’s hard. And so, I appreciate that you’re bringing it up, and that I’m sorry that you have that experience. I think, for me, what it brought up was the idea that if they think that I’m doing this on purpose, and I’m lying about it, then they’re not going to try to figure out what it really is. And that was what was so frustrating, was feeling like they weren’t listening when I was like, no, I don’t have any body image issues, or I don’t want to lose weight, I want to gain. Is that — did you feel similar? Am I projecting?

Brianna:  06:36

Oh, yeah. It was definitely like frustrating because I was trying a lot of different things. And my parents were buying, I remember, like these bottled protein shakes to try to get more calories in me. And I was eating so much more than my sisters because I had two younger sisters. So, I was like eating more than they were but I just still wasn’t able to gain weight. And I didn’t realize that that could be like a very early, like, sign of lupus or some of these other autoimmune diseases. And looking back now, you know, it makes sense that that’s what was going on. But I think being at that age, I don’t know how old you were, but like being 13. Like, I had had people around me who were actually, who were really going through those sorts of things, like with an eating disorder, and it wasn’t something that I knew I wasn’t going through, but that’s what they were asking me. So, yeah, it was tough.

Cheryl:  07:44

Yeah, and like just as a piece of patient education for anyone listening, yeah, weight loss and unintended weight loss is listed as a symptom of both rheumatoid arthritis and lupus, you know. And in rheumatoid arthritis, it’s particularly like muscle wasting that can be the cause, like, rheumatoid cachexia for lupus I’m not as familiar with like the process, but, well, I know with lupus it’s just never straightforward. It’s unintended weight loss or unintended weight gain can be symptoms of lupus. So, you know, there you go. It’s never going to be straightforward with the autoimmune life. And so, you know, eventually, thank goodness that one pediatrician decided to order the full lab work done and they found both autoimmune markers. And then, so when you first got that kind of preliminary diagnosis, and I’m imagining it was hard to wrap your mind around just because it’s also like you have a mixture of this mixed connective tissue disease, plus kind of the RA and lupus and scleroderma. It’s not like you have this one definitive thing. Like, how is that to wrap your head around?

Brianna:  09:00

Yeah, I mean, so when I was first diagnosed, a family member of mine has lupus. So, I had heard of lupus before, but I didn’t know a lot about it. I knew about arthritis, but I didn’t know about rheumatoid arthritis. Like, I knew that, like, I thought old people got arthritis in their hands. And it was really just like joint pain. But I was 13, so, like, I don’t blame myself for not knowing any better. So, it’s like, it’s hard. It was definitely tough because I just didn’t know like, what it all meant, and that like what it was going to mean long-term. And the whole thing with the mixed connective tissue disease has always been like an ongoing, I think, like thought and conversation for myself. Even as someone who like volunteers for the Arthritis Foundation and has been trying to get more involved with the Lupus Foundation, there’s not a lot out there for mixed connective tissue disease. I don’t fall perfectly into either category, there’s not — it’s a more rare disease. So, there’s not a lot of people out there to talk about it with. But I think, like, at the end of the day, I’ve kind of just accepted like we’re all just experiencing a lot of the same symptoms and trying to treat it in similar ways. And I’m on, you know, similar medications as my friends with lupus and rheumatoid arthritis. And it’s just kind of a label on these symptoms that I have experienced. But I have had like an identity crisis about it before, like, not being the perfect, like — especially after I like made my Instagram page, @ThatGirlWithArthritis, and my disease started leaning more towards lupus, I was like, I’m having an identity crisis, like, do I need to swivel here? But yeah, it’s interesting.

Cheryl:  11:11

Oh, I totally get that. And even, like, you know, me calling my, you know, like my organization ‘Arthritis Life’, it’s really more like inflammatory and autoimmune, autoinflammatory arthritis. And really, arthritis is just like a tiny little sliver, like, sure, that just means joint inflammation, right. So, you can have joint inflammation from overdoing it with exercise, or you can have it from like a systemic autoimmune condition that’s affecting every part of your body. Like, it wasn’t even, it wasn’t even that specific. So, I totally, I’m glad that you’re bringing up this idea of like an identity crisis. I mean, I identify with it, too. Or even when you have a definitive label with, let’s say, in an imaginary world, I only had a diagnosis of rheumatoid arthritis. It’s still, like, I’ve never met a single person who’s like, “I follow the textbook definition to a tee.” Nobody does. I mean, maybe a rheumatologist listening can let me know that, like, “I had one patient once, in 1994,” you know, but the majority of people have, you know, maybe their rheumatoid arthritis is not fully bilateral, like they have one side that’s worse than the other, or their big joints and not the small joints, but still RA, or with lupus, maybe they don’t have the butterfly rash, or they don’t have, you know, some of the more common symptoms. So, I think it can be, yeah, and when you start living your life more publicly, it can become, it can be definitely difficult when your condition changes. And then, we’re going to talk more about like how and why you started sharing your story online, and connecting and other people through your volunteer efforts, but I wanted to first try to kind of go in order, because my brain goes in so many directions. So, I write down ahead of time, like, let’s sketch out, you know, order. A lot of times people who are newly diagnosed, they kind of like hearing from other patients, especially what treatments have you got and tried. You know, you mentioned you’ve gone on some treatments that are more typical for the inflammatory arthritis family, like juvenile idiopathic arthritis or RA, and you’ve tried some medications that are more typical, like lupus, like, is there a way to condense? Like, I know, it’s kind of hard to condense. Can you condense your medical history for us?

Brianna:  13:25

Yeah, right. I wish. So —

Cheryl:  13:28

Maybe highlight some of the highlights that you enjoy talking about.

Brianna:  13:33

I mean, I feel like I’ve done a little, tried a little bit of everything that you could at this point. And, you know, I’ve done in the methotrexate, the aneurin. Some things have worked for me for me for bits of time and then not worked again. I have tried several biologics, both injections and infusions, and some for arthritis, and then some for lupus. I just started on, like, one of the newest lupus biologics just last week. So, we’re kind of seeing how that works after. I was on Xeljanz for quite some time. And that stopped working for me. So, we’re kind of trying a different route. But yeah, it’s definitely, it’s never easy to find new medications. I’m always like, it’s so hard talking about my treatment history. Because I’m sure that the same thing happens to you, Cheryl. I, like, don’t — I am hesitant to share because to give people hope of, like, this is what worked for me, so it’ll work for you. Because there’s so many different paths out there and everybody’s body is going to respond so differently to everything. And even if it worked for me for like a year, it might work for you forever. So, it’s just like, it’s so tough to talk about out that, at least, especially with how quickly science is changing and moving even from when I was first diagnosed at 13. Seeing all the new options out there now, even between moving from pediatric to adult care, because not everything’s approved for peds. So, like, as soon as I moved to adult care, a lot more became available to me and was on the table as an option, so.

Cheryl:  15:29

That’s a really helpful insight. I sometimes forget that, because I was diagnosed at age 20 with adults’ rheumatoid arthritis, because I was technically an adult, right, even though I started having symptoms a couple years earlier, I was still technically an adult at that time, too. And so, in a way, I got kind of fortunate with the timing, because all of the medications that were available at the time of 2003 were on the table, whereas, yeah, if I had been 16, like you mentioned, some medications are like FDA approved for — just like with vaccines, they have certain vaccines but it has to be, you know, Shingrix has to be over 18, or something like that. But I wanted to echo what you’re saying about sharing medications. That’s definitely something where I had to learn, you mentioned like being hesitant sometimes, because, for me, it’s like I have these both opposite fears. I don’t want to give someone false hope that they’ll respond the same way I did positively to one med, and I also don’t want to give them false scaredness. Like, because I’ve had some, like, when I first started making videos, trying to be a little bit more on the humorous side alongside more like straightforward or inspirational or educational videos, I also did some that were like humorous, because it kind of, for me, it’s like if you can’t cry, laugh. So, I was like, oh, yeah, that feeling when you know, when your first biologic like works for six years, and then your body makes antibodies to it. And then, you’re like, I’m sitting here laughing one day, even though it’s kind of dark humour, and then someone’s like, oh, my gosh, they comment, like, “I didn’t know that could happen. Now I’m scared.” On the one hand, it’s like, well, you shouldn’t because knowledge is power, right. It’s good to know that could happen. So, you’re not blindsided if it does. But I also don’t want to give people false — false fill in the blanks, false hope, or false scaredness, or fear. So, yeah, it’s like easier. Sometimes, I find it easier to talk about the success stories, because it’s like, oh, it’s a scary taking methotrexate because you think, for sure, you’re going to be like vomiting or, you know, nauseous. Like, hey, there are examples — like, I’m one of them that there are people who don’t have those side effects. But then, if you’re like, “Well, I don’t get nauseous, therefore, you won’t get nauseous,” and the person gets nauseous then it’s like, well, then that’s problematic. So, it’s all about, for me, how you frame it and how you share it, it can make it more or less likely that somebody will have a good or bad experience based on your information. Sorry, that was a long rant. 

Brianna:  17:55

No, yeah, it was totally, it’s like, I feel like it’s something that’s come up more and more recently, I don’t know why. I don’t know if it’s just like new people are reaching, or are in our audience now. I don’t know if it’s happening to you, too. And I always feel the worst when it’s like parents of kids going through, because there are a lot of parents who are looking for advice and things like that, and pediatric care is so different. And a lot of the times, more, I think — what’s the word I’m looking for? Like, they’re just slower to jump into biologics or anything like that for pediatrics. Which there’s pros and cons to both. I’m super glad that I got started on the medications I got started on right away. But it’s like not everybody sees it that way, too.

Cheryl:  18:56

Yeah. Yes, this really comes, like, I file this kind of into the conversation of, like, medical literacy, which is this very kind of boring sounding term for like how lay people, like people who are not healthcare providers or not doctors or not, you know, nurses can kind of understand and make decisions about health, their own healthcare. And it can be difficult because I know that, you know, particularly in pediatrics, I have worked in pediatrics as an occupational therapist, I don’t get approached as often nowadays for like, you know, pediatric rheumatology, parents and stuff, I get more approached by other fellow adult patients. But it’s, you know, most people that have approached me with a medication question are hesitant about it. They’re nervous about trying medications, which is totally understandable, you know, and valid. But it’s harder when it’s like, when people don’t understand the potential, or they’re only looking exclusively at the risks and not the potential benefits. The also, like, you don’t know any one person, are they going to experience just the risk, no benefit, or are they going to experience the benefit. Like, even if 99% of patients do well on a medication, and you can tell someone that, but they’re never going to know if they’re going to be that 1%. So, I think that’s hard, too. I’ve started trying to say like, try to focus on the fact that you’re going to cope with this no matter what. Whether this medication does or doesn’t work, you’re going to figure out a way to cope. I don’t know if that is like something you do, or I don’t know if there’s other good — do you have tips for other people in this situation, who are maybe, yeah, who were — what do you say to those parents who approach you? Or are they just kind of different each time, depending on —?

Brianna:  20:46

I think it’s different each time. And everyone’s situation is so different depending on, like, some kids are diagnosed, and they have like, two joints affected. And then, if you’re talking to a systemic patient, like those are two totally different conversations. I mean, I just try to share, you know, a brief kind of what I shared with you of like what I’ve gone through about, like, you know, I’ve tried a lot of different medications, I’m still taking it day by day, and it’s still a part of my life, but you kind of just learn to live with. Like, you learn how to adapt to this new life. Because it’s, you know, it’s intimidating for, I think, for a parent to think about their kid’s future.

Cheryl:  21:36

Mm-hmm. Yeah, the first time I ever talked at an Arthritis Foundation event was at, I was asked to speak at the local camp, the summer camp for the kids. I’s actually a family camp, the whole family comes, siblings. And I remember, like, I had all these points I wanted to make, and these whole stories I was telling, but like one of the moms came up to me afterwards. And they’re like, it’s just great to see that you’re just, like, a person, like, out there doing stuff and having a life and getting married. And I’m like, wow, I want to make these big, lofty points. But they’re, actually, that is all that they wanted to know. It’s just that like, you’re gonna survive, you know, most likely. Yeah. And that’s kind of humbling in some weird way, too.

Brianna:  22:20

Yeah. I’ve had the same exact experience; I know exactly what you’re talking about. And I think I’ve also been on the other side of it as a camper at one of the Arthritis Foundation camps and seeing other young adults as my counsellors who were living life, going to college, and getting these cool jobs and things like that, while still like, you know, figuring out their life with arthritis as a young adult. Like, I realized that my life wasn’t over. Because for a long time, like, when I was first diagnosed, I really did, like, I had no idea what I was going to do, I didn’t know what the future was going to look like for me. So, just being able to see other people out there living life with it made such a difference.

Cheryl:  23:13

That’s beautiful. And so, that transitions perfectly and aligns to like, how did you start sharing your story online? Where did you first start? Like, I actually don’t know the answer to this. Like, did you start with a blog? Or did you start, like, in person sharing your story? How has that evolved?

Brianna:  23:33

It’s kind of like been going on for so long. But it’s just crazy. But when I was first diagnosed, it was the summer after, so, 2014 when I first — no, well, I was diagnosed in 2010. So, 2011 that I first went to camp. And I didn’t start sharing my story then. But I think, like, it definitely sparked something in me to, like, that I could share my story with other people, like realizing the power of connecting with others. And I kept going to camp year after year, and I had to do a project of some sorts to become a counsellor in training. And you could do like a fundraising project or a volunteer project, and I wanted to make a blog where I shared what my life was like with arthritis, and I was like 16 or something. And that’s the first thing, first time I remember sharing anything, that blog is hopefully off the Internet now, because it’s probably not very good. But from there —

Cheryl:  24:45

Oh, wait, just hold on for one second. When you say camp, I realize I know what you’re talking about. Like, what is the camp you’re talking about?

Brianna:  24:53

Yeah, I went to Camp JRA, it was in Millville, Pennsylvania. It was one of the Arthritis Foundation, like, summer camps, it was a week long. Mine wasn’t family camp. It was just the kid’s sleepover camp. And it was like kids with all types of arthritis, which was cool. Like, there was kids there with lupus, because there with JRA, kids there with all different things. So, I went the year after I was diagnosed and kept going as a camper, and then was a counsellor. And then, I haven’t been back in a few years since I graduated college and moved, but I’m still in touch with the people from camp all those years ago, and they’re still some of my best friends. So, yeah.

Cheryl:  25:41

That’s amazing. Okay, so you became a counsellor, you had your blog.

Brianna:  25:45

Yeah, I had a little blog. And then, when I went to college, I didn’t really share about it a lot at all. My mom actually picked me up after my first year and realized that none of my friends, like close friends, knew about it. I haven’t told anybody. I was in like a very low symptom, possibly medicated remission, like, era while I was in college, so I like didn’t really see the need to tell people this. But so, my mom realized that I hadn’t told anybody, and I ended up telling all my friends then. But anyway, I’m sorry, it’s a bit boring.

Cheryl:  26:26

No, no, I’m asking you to like literally condense your life story. But no, I had a similar — when I was in medicated remission, I didn’t — a lot of people, because it just didn’t — it wasn’t relevant because I was doing well, you know. So, I think, I mean, unless your medications had like a specific side effects, or, you know, there was some, like, I had to refrigerate my injections when I was on like a injectable biologic. And so, I would have to tell them for that reason, but otherwise, like, that’s the beauty of remission, right. It’s if you, you know, if you could get into remission, then you’re kind of living life normally, except for your appointments and stuff like that. Yeah. So, you weren’t talking about it a lot in college,

Brianna:  27:03

I wasn’t talking about a lot in college. And I was still going back to camps, like, in the summertime in college. But then once I graduated, I stopped. And I, like, flared again. And I was hoping, but I, like, didn’t have a connection to anybody where I was in Tampa. I didn’t know anybody in the area with arthritis. I didn’t have anybody besides my few friends from camp that I could text or call, which is always great. But it, like, I just was looking for new connections, I think, like, I don’t know. So, anyway, I got connected with the Arthritis Foundation in Florida, and met some people through that. And then, right at, it was like the end of 2020, or end of 2019, early 2020, that I first was like, I think I’m going to start an Instagram account. And I was talking to my now husband about it. And I was literally sitting, I remember, I was sitting in an airport flying back from the holidays. I had my computer and I was like brainstorming names and stuff like that. And I was like, I’m just gonna do it. Like, just, I always loved talking to other people with it. And I really think, like, I want to share my story as I kind of embark on this new chapter of, like, I was just moving to adult doctors, I was just moving out on my own, and doing all these things. So, like, why not share what I’m going through. So, that’s kind of where I started. I feel like that was like, there was always a chronic illness community. But I think a lot of us really started around that same time. Even though it was pre — I started mine pre-pandemic, which was like weird timing, but because then, everything changed so quickly, but.

Cheryl:  29:05

Yeah, so you started it. It’s @ThatGirlWithArthritis.

Brianna:  29:08

Yeah, so I started @ThatGirlWithArthritis on Instagram. I just started sharing my story, sharing whatever I felt like sharing, really, and I still kind of just do that. Just trying to keep it real. Not super, like, positive, uplifting. Like, if I have a bad day, I’m sharing, talking about that, too. But, really, just like a place for other people to connect, and learn, and what we’re all trying to do, you know?

Cheryl:  29:42

Yeah, yeah. And did you have any reservations before sharing more publicly? Like, were you worried about anything, or were you more optimistic?

Brianna:  29:53

I think I was really optimistic, to be honest. I didn’t really have any reservations because I had been, like, I’m sharing my story, like little bits here and there throughout my life, right. Yeah, I don’t think I really expected for it to grow as much as it did to where it is today, and all of that, so.

Cheryl:  30:16

Yeah, well, no, I think that’s a little bit of a generation thing. Like, I’m 41 and I grew up before social media, social media actually didn’t come out. Like, Mark Zuckerberg was literally making Facebook when I was a senior in college. So, you know, I didn’t have a cell phone until after college. Like, it’s hard to, like, and that, like, the generation gap happened so yeah. But yeah, for me, I was a little worried just about, like, future employers or someone using something that I said to discriminate against me, or just coping with the more audience, a bigger audience, you’d get some more sometimes unhinged comments, you can say, or like trolls. Like, has that, have you had to deal with any of that, or —? 

Brianna:  31:05

Like, I don’t think I was prepared for that at all. But I’ve had to deal with it. I get comments or messages from people all the time. And I’m just like, sometimes I’ll, like, ignore them, sometimes I’ll respond. So, it’s like, hard, but I think it’s tough. And it’s tough to, like, when you go on to share your life — and I don’t know if you found this, too, Cheryl. But like, sometimes I just want to take a break. Like, I want to take a break from my doctor’s appointments. Like, I can’t do that. But I want to take a break from it. So, sometimes it becomes a lot sharing online all the time. So, I’ve been mindful about taking breaks in the past from sharing, or just like, even not scrolling my feed as much and consuming as much content and more so just posting my own content. Because it can be a lot to consume all of that all of the time. 

Cheryl:  32:03

Yeah. 

Brianna:  32:04

Yeah.

Cheryl:  32:05

Yeah. A hundred percent. I don’t know if you know that song, Olivia Rodrigo song, ‘Jealousy, jealousy’? There’s one part where she’s like, “I’m so sick of myself,” and I’m like, I get that sometimes. I’m like, I love talking about myself, like, and then — or talking about my story and sharing and connecting. And then, all of a sudden, I’m like, I’m sick of myself. I don’t want to talk about my story again, like, right now. So, I think, yeah, I think that that’s something I’m still navigating. There’s like, I just have to kind of, right now, it’s more like, I’m reactive to it rather than proactive. I think, long-term, it’s probably more sustainable to be like — I know, some people have built in, like, they’ll take a screen-free Sunday, like every Sunday, they just totally disconnect, and I think that’s probably a really healthy thing to d. Right now, I just do like sporadic, you know, cleanses where I just don’t use anything for a few days and, you know, or just be mindful, like, is this a good time? Am I in a good headspace for scrolling right now? Or is it going to, like, is it going to be kind of stressful? And I, yeah, so I totally, I can totally identify with that. And I think it’s hard it because, you know, you want to, you know, circling back to that topic of like you want to share the fact that you can still have a life with this condition, right. Most people can still have a life and it might look like how they want it to look, but it can be a fulfilling, you know, existence. But then, if all your days are taken up by thinking about social media content, you’re like, this is now my life, you know?

Brianna:  33:42

Yeah, and especially when the social media content is around, like, your health condition, I think it’s hard. Like, I don’t — I already am in pain most days, like, I don’t want to be thinking about it and doing that 24/7. So, it’s definitely tough finding a balance, but I think we’re all navigating that a little bit.

Cheryl:  34:06

Yeah, and it helps to like, again, it’s like a double-edged sword, like the cause is the cure or whatever, but like, connecting to other people on social media who has trouble with that, at least makes you feel like, you know, you’re not alone, you know, okay, we’re all figuring this out, you know. What have been some of the positives in sharing, you know, in sharing your story publicly? And you have your own podcast, too, by the way.

Brianna:  34:31

Yeah. So, it was like a year after @ThatGirlWithArthritis, after I started that, my friend, Becca, who I actually met through one of the Arthritis Foundation events in Tampa. We met and she’s was like — she’s a few years older than me, but we’re around the same age, and both work, you know, corporate jobs, and we’re trying to like navigate this life as 20-something-year-olds with arthritis. So, we’re both getting married around the same time and doing all of these things. So, like, it was a lot of, like, it lined up perfectly for us to start our podcast. So, we started a podcast in 2021, I think it was. Time is blurring. But that has been such a fun time. And we’ve connected with even more people, I think, that way, just like a different audience and a different reach, I’m sure you found, too. I think the biggest thing, obviously, is just been connecting with new people. I’ve learned so much new, like, coping things and different gadgets, and have changed my life, too, because of what other spoonies are sharing online. It’s totally, like, it’s so helpful. So, it’s, yeah. I think that answered your question.

Cheryl:  36:02

Yeah, no, and I think a lot of, like, social media gets a bad reputation because of some of the bad stuff that can be on it, like the trolls and the misinformation, but I always want to kind of give, you know, equal weight to the benefits, too. So, those are the same benefits for me. I think, I would only — just as you mentioned coping, and for me, it would also be destigmatizing talking about mental health. Because it’s hard for me to remember this, but I, I did not want to talk about having anxiety, and even a few years ago. I was like, I’m not gonna talk about that, because I didn’t want people to judge me, which, like, they’re judging you anyway. But, you know, and it’s, again, you have to be at a certain point where that, you know, that’s what you do want to do. I’m not saying it’s — there’s some people who will never talk about openly or publicly about their mental health struggles, and that’s the right thing for them. But for me, it ended up being seeing other people share about having anxiety, like, made me — it was so powerful to me that I was like, I want to also do this and help, like, decrease the stigma, you know, around people who have like an anxiety disorder being weaker or just failing at being positive, you know? So, that’s been a huge thing for me as well. Oh, when you mentioned being a young, corporate job lady on the town, do you — well, I’m sure people are wondering, like, it’s one of the questions, again, like, “What things do people do for work with arthritis?” Like, people have asked that before, like, “Oh, is OT an arthritis-friendly career?” you know, things like that. And that was something I thought about when I chose it. But do you want to share just a little bit about what you do for work?

Brianna:  37:43

Sure. Yeah. So, I work in marketing. I work from home for a marketing and PR agency, actually. I do travel a little bit for work. So, a few times a year, I’ll meet with clients and things like that. But working from home has been the biggest saving grace for me. I don’t think I would ever go back to working in an office, personally. It’s just like, it has just changed, like, the way I can build my day and all of that. So, that, you know, if I’m having a bad day, if I wake up feeling super stiff, like, I can work my schedule around that, too.

Cheryl:  38:28

That’s great. And I know that, you know, just a few years ago before the pandemic, work from home opportunities were really few and far between. So, it’s great that you have that. There’s some flexibility.

Brianna:  38:39

Yeah, I’ve seen so many people do so many different things, like, career wise when they have RA or any, you know, autoimmune conditions like this. So, I mean, think about, like, what your day-to-day is gonna look like when you’re considering a career. Like, something that I considered early on, like, around the time I was diagnosed, like, I wanted to be a teacher. That was something I wanted to do. I really thought, like, long and hard about it, I just didn’t think that the schedule, like the days were gonna work for me. My hands are so affected by my arthritis. They’re like probably my most affected joints that writing on a chalkboard, doing things like that, like, I really thought about all of those things. But I know so many successful who people who are teachers who have RA or other things, so it’s not — just because I didn’t think I could do that doesn’t mean that you can’t do that. But it’s like, I would just consider what your day-to-day is gonna look like in that specific career that you’re considering.

Cheryl:  39:53

Absolutely. One of the things that I have factored in, even though I had mostly been in medicated remission then at the time, I had had some — perhaps I had one biologic stop working at the time — to just become an occupational therapist. And I was like, okay, I want a career that has real facilities to do it part-time. And teaching is a perfect example of that. If you want to be a traditional classroom teacher, like, K through 12, like, it’s practically unheard of to do it part-time. Like, there’s not a lot of like — there’s occasionally, they get someone to do like a job sharing where one teacher takes, like, three days a week to teach students, but it’s really not the norm, where it’s like, in the rehab fields, like OT, PT, speech, like there’s people that, you know, work two Saturdays a month, or they work3pm to 6pm an afternoon while their kids are at soccer practice. So, there weren’t, you know, there’s so many little things I can imagine, like, with your energy levels and stuff, like figuring it out, like having a flexible schedule and having part-time availability. Like, for me, those are two huge things that are helpful for chronic illness without having to be like — or another one would be like, even if it’s a chiropractor or a massage therapist, that’s what I meant to say, is like a career where you might have a lot of flexibility around your schedule, you could have like your own private practice, and be like, okay, I work from these hours. But during those hours, you have to be on, and you’re physically using your hands. Like, there’s not, like, you can have an adaptation, but that’s, like, the job basically is. And so, that would be kind of virtually impossible to do very easily, you know, with these conditions. But you’re right that so much depends on how well you’ve responded to meds. I mean, there’s people, like you said, you know, there’s people who are on the medication that worked for me for 6 years, there’s people who’ve been on it for 14 years, 20 years. And so, and they’re doing great. And so, you’re like, well, they just do whatever they want. So yeah, you don’t have that crystal ball, but I just say, like, err on the side of caution. Oh, my gosh, well, and I also just want to ask a little bit more about your involvement in the Arthritis Foundation, because I know that’s been so important for you and now, you’re saying that you want, that you’re also maybe getting involved with the Lupus Foundation. How did you get started? Like, I guess it was the camps, but.

Brianna:  42:22

Yeah, I got started with camp and my family did the first, did our first Jingle Bell Run, like 2011 or 2012, like right after I was diagnosed. So, we’ve always been. The Jingle Bell Run is the Arthritis Foundation’s kind of signature event around the holiday season. So, we were always like a Jingle Bell Run family, I call us. And I’m the event chair for that here in Tampa now. So, I help to plan that every year, which is super fun. But for me, it’s just always been so important. Truly, without camp, and all of the things early on from the foundation, like networking things, and connect groups, and even for my parents, things that they got to experience. Like, I just, like, I can’t imagine where I would be at if I hadn’t made those connections early on and realized that, like I said, my life isn’t over because of my arthritis. That was all because of those things that I experienced early on through the foundation. So, it’s just always been so important to me to give back to them, volunteer with them when I can, just speak, to connect with other kids going through the same thing and hopefully get the same kind of message across.

Cheryl:  43:52

Yeah, and I was not, you know — I didn’t have juvenile arthritis. So, I didn’t go to the camps as a kid. But I do — I found it so meaningful to volunteer our local, like, we call it the Catfish Camp for kids, families, kids with arthritis. And if you go — I’m gonna put a link in the show notes — but it’s at arthritis.org/events/ja-camps if you want to just go on it right now, you can see — I mean, there were unfortunately some budget cuts that have reduced, like, there were more camps that used to be there five years ago or so. But luckily, because these camps are so important to so many people, they still do have so many. And they are all, at least the ones I’ve been involved with, they’re run partly by staff and partly by volunteers, you know, so that’s a great way to give back, like you said, and become part of a community that’s like a little more in-person, too. Because I’m the biggest fan of online connection, like I obviously run the Rheum to THRIVE online support groups and everything, but it is really nice to see, to know someone locally, someone you could get lunch with, or like, you know, or share like, “Hey, who’s a good rheumatologist? Like, my kid’s transitioning from pediatric to adult, like, who’s a good rheumatologist in your area?” you know, it’s nice to have that connection. Yeah, the other one’s in California, Colorado, Georgia, Minnesota — and is Minnesota right? Yeah. Utah, Washington. And then, there’s also a national, there’s a National JA Camp via Zoom, I think, just this year it was — was it only Zoom this year?

Brianna:  45:36

I’m not sure about camp. I was at Family Summit, which was in Georgia this past year. So, it’s kind of like a more conference style, I guess. It’s like, same, like, purpose, I would say, is camp. I call it camp in a hotel because it’s like all the kids still get to meet.

Cheryl:  46:00

Yeah. I went to the one in Keystone, Colorado in 2014. I think that was the same thing. That where it was, it was kids and families. And it was, like, a lot of yeah, a lot of educational sessions. 

Brianna:  46:12

Yes.

Cheryl:  46:13

Yeah. But sorry, I didn’t mean to interrupt.

Brianna:  46:17

Oh, no, you’re good. Yeah, no, we’ve been, I’ve been to Summit, like, the conference the last two years. And it’s great. I think it’s like one of those things, like, I wish my family had gone to because I went to camp, but it wasn’t family camp. So, I think Summit is really cool for parents, siblings. There’s so many siblings at Summit who are like, surprisingly, so active in sessions and things like that, and looking to connect with other siblings and talk about their experience with it, too. So, it’s definitely a cool experience if you have the chance.

Cheryl:  46:55

Yeah, I found that with the Washington State Camp, I guess it’s one of the only ones that is the full family. And it’s only two nights. So, it’s a smaller camp than like a full residential, like, week-long camp. But I really, the siblings were the ones that almost seemed to learn the most, you know, they’re like, “Wow, I really understand, you know, what my sibling goes through now.” Is there anything else before we move to the — sadly, this has gone by so fast — but before we move to the rapid-fire questions, is there anything else you want to say about sharing your story, or volunteering, or anything else? 

Brianna:  47:29

Yeah, I don’t think so. I mean, it can be really intimidating getting started, connecting with other people, and sharing your story. And I’ve learned that, like, I was really open to it, because my parents really, like, not pushed me to meet other people and talk about it more. But they really encouraged that. So, I was really comfortable with it. But I’ve met so many people who are more hesitant to do so which is totally fine, too. Like, I just want to say it’s okay to take baby steps into it and do what you’re comfortable with at first when it comes to going to support groups or connecting with people online or anything like that, whatever you are ready for is totally okay.

Cheryl:  48:16

Oh, thank you. Yeah, that’s so important to acknowledge. But there are definitely certain people, like, I always joke about myself that if the teacher was like, “Does anyone want to do show and tell today?” like, I was always the first kid that raised my hand, like, I want to show and tell. Like, some people, it’s like their personality, you know, and other people, it definitely takes, you know, people who don’t like public speaking, people who don’t like sharing about themselves. And it takes a lot of courage to do that. It also needs to be the right thing for you at the right time. So, yeah, it doesn’t, it’s certainly not something that everyone should do. It’s just that, you know, it’s something you can weigh the pros and cons of doing. And one kind of intermediary step I see people do sometimes is making an anonymous account. So, you can share without sharing your face, without sharing your name. You could at least connect with people that way, which, you know, can be nice, and you can make comments and participate. So, you’re making connections, but you’re just not sharing as much about yourself.

Brianna:  49:13

Yeah, that’s a great first step. Yeah.

Cheryl:  49:17

Yeah. Okay, so these are rapid fire questions, but they’re all ones that we could also spend hours talking about. What are some of the, you know, words of wisdom that you’d have for somebody who might have just gotten diagnosed with either JIA, adult rheumatoid arthritis, lupus, and mixed connective tissue disease? What something that might be helpful?

Brianna:  49:42

I feel like it’s really important early on to find a doctor. It doesn’t need to be like your primary doctor or your rheumatologist, but a doctor that you’re comfortable having open conversations with and asking questions to. It can be so dangerous early on to go down the Google rabbit hole. Like, I literally remember Googling, like, life expectancy of like, this person, of like mixed connective tissue disease the first time, like, right after I was diagnosed. So, it’s just important to find, I think, medical professionals that you’re comfortable asking questions with and someone who, like, you can have that those conversations with. Like, I have my rheumatologist now, like, if something comes up, I know I can message her on our portal, and she’ll get back to me. And right away, and I don’t have to go down the Google rabbit hole. So, that’s something I think about for newly diagnosed patients, because there’s so much out there on the social media, on Internet, everything now.

Cheryl:  50:48

It’s so important, yeah, to have, I think, to just have some context around it, like what you’re looking at, because you don’t know what you don’t know. Like, for example, with life expectancy, there are peer-reviewed research articles on rheumatoid arthritis that are about the life expectancy, historically, as someone with rheumatoid arthritis, is less. Like, over five years less, usually around seven years less. However, the context that a doctor would provide you with is that the people who are diagnosed in the current era of biologics that are putting more and more people into remission than ever before, like people like me who are diagnosed with rheumatoid arthritis at age 20, like, I haven’t died yet. So, we don’t have the data. Like, we don’t have the data on the current life expectancy, right. We don’t have — like, it’s a very long, long, long, long period. We’re talking like decades, but we won’t know until then. But theoretically, if the, you know, disease severity correlates, what you would expect to the mortality risk, aka life expectancy reduction, then you would say, well, if the disease is better controlled, then you have less risk of dying or, like, you know, so. But you don’t know that if you’re just on Google. And you, just, those words — those words imprint on your brain, “I’m going to die seven years earlier.”

Brianna:  52:10

Exactly.

Cheryl:  52:12

Yeah, that can be scary. So, yeah, bringing up, if you see something that scares you online, bring it up to a doctor that you’re having that open relationship with is so important. Earlier, you mentioned one of my love languages, which is arthritis gadgets, arthritis tools. Do you have any favorite arthritis gadget or tools in your toolbox?

Brianna:  52:31

Oh, I have, I feel like I have so many that I don’t even really realize that it’s an arthritis gadget. Or even my husband uses some of them because he’s just like, we always say like, it’s — I’ll be like, “Babe, this isn’t arthritis friendly. Like, this is — I can’t even open this,” and he’s like, that’s not even human friendly. Like, I can’t even open this and I don’t have arthritis.

Cheryl:  52:52

Mine does, too. My husband does it, too. 

Brianna:  52:56

It’s so funny, but I think like the probably my most used things are my heating pads, my heated blankets, and I have one that I love. It actually plugs into my car, which I don’t need a lot here in Florida. But when we do road trips, because we have family up North, it plugs into like the, like, car port, which is super cool and very convenient.

Cheryl:  53:20

Oh, that’s awesome. That’s really good to know that. Yeah, my favorite heating thing is, for the for the winter months, the heated gloves, and the heated shirt, and heated socks, because I also have Raynaud’s. So, I’ll lose circulation in my fingers and toes and those does help a lot. I guess you don’t need those in Florida, probably. Maybe when you go back to Pennsylvania. This is totally different; I love talking about pop culture and like what people are reading and watching. Do you have a favorite book, or movie, or show that you watched recently?

Brianna:  53:54

So, I just —

Cheryl:  53:55

Or any concerts you went to?

Brianna:  53:57

Yeah, I was gonna say, I have to talk about Taylor Swift. But the book, so I’ve just finished like ‘The Summer I Turned Pretty’ because they’re on Amazon Prime right now. So, and I just like any sort of like ROM com, like, light read like that, I love. I think I started like reading for enjoyment again last year. And not just like for school or like self-help books. And it’s, like, it’s just been so fun. But obviously, Taylor Swift has gotten me through all the times with her music. So, yeah, it’s like so funny to think about. Sorry, what were you saying?

Cheryl:  54:38

How long ago was it that you saw her Eras Tour?

Brianna:  54:41

So, I saw her in March in Vegas. And then, April in Tampa. So, it’s been so long.

Cheryl:  54:51

Oh, she’s coming, she’s going to Miami now, next stop. 

Brianna:  54:53

I know. I know. I have to keep my eye out for tickets. But yeah, truly though, Taylor Swift has been there with me. I remember listening to her, like, my first infusions ever in the hospital and, you know, things like that. Like, she’s been there with me through the whole thing. And I’ve been, I was at Red, Red Tour, and I was at Reputation. And then, got to Eras Tours. So, I’m, like, I feel like I’m a pretty OG fan.

Cheryl:  55:24

You’re an OG. I had tickets to Red but then my friends got married the same day. And I was like, darn it, I can’t miss her wedding. And then, we saw 1989 and Reputation. But yeah, I wasn’t like a diehard fan in the really early era. I liked her voice and everything. But I, but once I got into, like, you know, Reputation and 1989, I was like, oh, I’m like a big fan now.

Brianna:  55:51

Yeah, totally. 

Cheryl:  55:52

I actually want to do a whole — we should do a whole episode on — maybe a crossover episode for your podcast, too. Who knows? No pressure, but on like how we can — how we relate to like different Taylor Swift lyrics and how —

Brianna:  56:06

Oh, my gosh, yeah. 

Cheryl:  56:08

But all of them, that would take like five hours. 

Brianna:  56:10

I know, I know. I keep seeing ones of yours that you are posting on Instagram. And some of them I haven’t even thought of that you’ve posted, but so many of them can relate back.

Cheryl:  56:22

They’re rich texts, yeah, for sure. For sure. Totally different note, or actually, maybe related to the lyrics, do you have a favorite, like, mantra or inspirational saying that you go to when things are hard or things are rough?

Brianna:  56:37

And I guess it’s pretty like cheesy, but I’ll get very overwhelmed when I have a lot going on. And I’ll look at, like, a month and be like, how am I gonna get through this? So, really, just I always tell myself, “One day at a time,” if I can just make it through.

Cheryl:  56:54

That’s helpful. 

Brianna:  56:56

The one day at a time thing is just like, if I could plaster that on every wall in my house, I think I’d be okay.

Cheryl:  57:05

Yeah, no, that’s great. I mean, the one that I say a lot is like, “I can do hard things,” because it acknowledges and validates that it’s hard, but like, I also can do that, you know. But I wonder at times, because it’s so true, like, if you’re, you get overwhelmed when you start thinking about everything. Like, did you ever watch the ‘Unbreakable Kimmy Schmidt’? 

Brianna:  57:27

Oh, no, I haven’t watched that. 

Cheryl:  57:29

Oh, okay. There’s a part of the show which was like, you could do anything for 10 seconds. And she was just like at this wheel, “Oh, I can do anything for 10 seconds.” Oh, also, on romantic comedy, or romantic comedy, like, books. If you haven’t read ‘Red, White and Royal Blue’, that’s a really good one, too. 

Brianna:  57:48

Okay, I think that’s actually on my list because I rent them from the library. I think it’s on there right now. 

Cheryl:  57:55

It’s good. I love it. I’ve read it twice. It’s really, really good. Okay, this is kind of similar but what’s something that’s bringing you joy right now?

Brianna:  58:06

Yeah, we have two dogs. So, that’s first in my head, first one, you know. Jojo’s our mini golden doodle. And then, we have Daisy is our golden retriever. And we have a cat, Stella. I can’t forget her. But my girls bring my lots of joy and lots of cuddles.

Cheryl:  58:23

Oh, same. I’m looking at my little floof, my little floofball right now, Teddy. And I have Eva the cat. She’s very, very sweet, too. She snuggled me a lot this weekend. And last one, what does it mean to you to live a good life and thrive with rheumatic disease?

Brianna:  58:46

Okay, this is plenty to prepare for, and I’m gonna have to think for a second.

Cheryl:  58:49

What is the meaning of life?

Brianna:  58:53

Let me think. I just, it’s like what I was saying earlier, just like learning to, like, that you can do you know a lot of the things that you’ve dreamed about doing, you just have to learn and accept that you’re gonna have to adapt them a little bit along the way. But I feel like I’ve, I live a pretty full life. Like, a lot of my friends without rheumatic disease, but even with my rheumatoid disease, I just — you have to find a balance of, like, you know, your disease, your medications, your treatments, and then your symptoms, too, and finding a balance that works for you because you might not be able to get the perfect mix where you’re, you know, pain free with the perfect medication that has no side effects and all of that. And I think you have to learn to accept that, too. And like, just find a balance that works. That was a little bit dribble-drabbley, but that’s where I’m going with.

Cheryl:  59:55

No, you used two of my favorite words. One that I reluctantly came to, which is ‘Acceptance’, and two, which I liked from the beginning, which is ‘Adapting’. So, those are like keys. Like, I know when I talked to Stephanie Remsen — now it’s like two years ago that I talked to her — that Rheumatoid Arthritis Coach. She’s a nurse who’s been living with RA for a while. She also, like, we talked about how adapting is a superpower, like knowing how to adapt, because I think — sorry, I’m on my soapbox now. But yeah, like, adapting to what life is. Not the life that you thought you’re going to have maybe when you were, you know, before you were diagnosed, that this is the life that you have, you know. And like you said, accept it and adapt to it and lean into it, rather than fighting it. It’s going to be a lot easier battle for you than if you try to say, “No, I gotta, like, find — keep trying to find the perfect thing.” 

Brianna:  1:00:54

Yeah, you have to work alongside your disease, almost. Like, I use the term ‘Warrior’ a lot. And it’s like, that has connotation of fighting against it. But I feel like it’s just like you — it’s just like anything else, like you’re gonna learn to live with it. And kind of keep living your life alongside your disease. You have to.

Cheryl:  1:01:19

Yeah, yeah. And I know, there’s a lot of, I mean, this is what social media opens you up to, right, is the fact that you can use language that resonates with you, it doesn’t resonate with someone else. Like, it’s just it’s like I do resonate with the idea of being a warrior, because I’m like, it does take a lot of effort to live with this. But I don’t consider, I don’t conceptualize myself as fighting against my own body. I’m more of think of it as like, as a former kind of athlete who I used to kind of have to just, you get that point. And like, you’re three quarters of the way through the mile. And you’re like, I’ve got to keep going, like, I just can’t stop. But I’m like getting that little gumption to be like, okay, I want to keep fighting, you know, and not give up. That’s kind of the part that I like about the word ‘Warrior’. But yeah. Yeah, yeah, I love, I love that answer. I know, I always end up putting, like, 20 qualifiers on that, because I just know it’s a really hard answer. But that’s like, I think that’s probably the central question of all of my work is like, how can we do this? How can we thrive and, you know, and to live, like, fully embrace our reality with rheumatic disease, so I appreciate your answer. And I know you, we mentioned that you are @ThatGirlWithArthritis on Instagram. Can you share the — I’m just looking it up as we talk, but is there any periods in it or anything? Or is it just —?

Brianna:  1:02:51

Nope, it’s just @ThatGirlWithArthritis, and then Becky and I’s podcast pages at Those Girls With Arthritis as well. But it’s all linked on my page.

Cheryl:  1:03:02

I love it. I know, it’s so, it’s so cool. I love it. You’ve, I mean, I did not know that you started sharing your story so early. I genuinely, I was like, wait. Like, you’re like, “Yeah, I started sharing my story when I was in —,” you know, I was like, oh, my goodness, that’s amazing. Yeah, that’s so cool. And you should try to find your old blog just for yourself. So, you can — I had a blog. And I found it a long time ago on this old platform called blogspot.com. And what’s funny is I didn’t, this wasn’t when I was in full remission. And it was like, I didn’t even mention arthritis in it. It’s interesting. Yeah, like what you’re saying, with your college, for me, it was like the years after college, my last year college. And then, I didn’t blog about a lot my last year of college, because I was adjusting, like, taking meds and everything, so I started the blog after college. And it was just like, I’m swing dancing and I’m working and, you know. I mean, I just didn’t share it publicly. I wish I could remember better. But anyway, so hopefully everyone will follow you and listen to your podcast. So, Girls with Arthritis as well. And thank you so much for taking the time. I know that both you and I like sharing our stories, but I always recognize that it takes, you know, some emotional labor and energy to share your story. So, thank you.

Brianna:  1:04:17

Oh, yeah, of course. Thank you.

Cheryl:  1:04:20

All right. Well, hopefully we’ll talk to you later and maybe about Taylor Swift, but for now we’ll say bye-bye. 

Brianna:  1:04:21

Bye.