How to Love your Body While Living with Rheumatoid Arthritis, with Stefanie Remson 

 

Summary:

Stefanie was diagnosed with rheumatoid arthritis after the birth of her first child. In episode 75 of the Arthritis Life Podcast, she shares how her weight gain and difficulty performing daily tasks led to a negative body image.

Cheryl and Stefanie discuss ways to overcome ableism and shame, and gain a sense of body positivity or at least a “body neutral” stance. They also discuss the importance of self compassion and challenging societal norms. 

Video of Interview

Episode at a glance:

• Overview: how does chronic illness affect body image?
• Stefanie’s personal journey: postpartum diagnosis of RA, coping with weight gain and difficulty performing basic daily activities
• What is “normal?” Stefanie and Cheryl discuss how it’s hard to know what’s normal or expected as a first time parent, especially when you receive an autoimmune diagnosis
• Overcoming ableism and shame: how Stefanie and Cheryl have learned to grow in confidence and embrace their perfectly imperfect bodies
• It’s ok to feel “body neutral:” sometimes being neutral is a middle ground step between body shame and body confidence
• Self-Compassion: Cheryl shares why self compassion is so critical for people with chronic illness
• Stefanie’s best advice for newly diagnosed people who might be struggling with body image

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, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist for the next group, which starts in October 2022!

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

Speaker Bios:

Ms. Stefanie Remson MSN, APRN, FNP-BC is the CEO and founder of RheumatoidArthritisCoach.com. She is a family nurse practitioner and is a rheumatoid arthritis (RA) patient herself. She has spent her entire life serving the community as a healthcare professional and has refused to let RA slow her down. She has worked with The Arthritis Foundation, The Lupus Foundation of America, Healthline, Grace and Able, Arthritis Life, Musculo, Aila, and HopeX. 

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
  • Cheryl’s article on EverydayHealth: Adaptive Clothing for Disabilities and Body Differences 
  • The Happiness Trap Book & Programs
  • Relevant research:
    • Social Theory Applied to Body Image and Chronic Illness in Youth
    • Body image in patients with rheumatoid arthritis
    • Relationship Between Appearance and Psychological Distress in Rheumatic Disease
• Stefanie’s Links
  • Stefanie’s website
  • Stefanie’s Instagram
  • Stefanie’s Facebook
  • Steafnie’s  Pinterest.
• Cheryl’s Arthritis Life Pages:

• Youtube channel

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

Full episode transcript:

Interview between Speaker 1 (Cheryl Crow) and Speaker 2 (Stefanie Remson)

Cheryl: 

Yay, I’m so excited to have Stephanie Remson here today! Can you tell the audience a little bit about where you live, and what is your relationship to arthritis?

Stefanie:  

Sure. Thank you so much for having me. My name is Stephanie Remson. I live in Las Vegas, Nevada, where it’s very hot. I am a family nurse practitioner, and I’m also the CEO and founder of rheumatoidarthritiscoach.com. I’m also an RA patient.

Cheryl: 

So yeah, you and I are both kind of, you know, connected by the fact that we have this patient experience living with rheumatoid arthritis. And we also, you know, have some health care training. And we’re licensed health providers that, you know, understand maybe a little bit more than the average person what this disease is, for better or for worse, right. It’s like, knowledge is power but ignorance is bliss sometimes. So yeah, that’s a whole other topic. But today, I’m really excited to talk with you about how to love your body while living with rheumatoid arthritis and how to, you know, cope and maybe, you know, reframe some of the ways that our body image can be negatively affected by having a chronic illness. And I know you’ve done some research on it. What are some of the ways you found that chronic illness can negatively affect people’s body image?

Stefanie:  

Yeah, so before I start on that, like you said, we have a lot of healthcare experience. I have 17 in total. And I have to tell you, I don’t have any better body image than somebody with no medical experience at all. I still struggle, and it’s honestly probably been one of my biggest struggles since diagnosis and before. So, I don’t think, although being a medical provider does give me an advantage on a lot of things with rheumatoid arthritis, I don’t think body image has ⁠— I don’t think it’s done me any good at all.

Cheryl: 

That’s a really interesting point. Yeah, the knowledge gains in one area don’t always transfer to other areas. And we all have things that we struggle with in our mental health, you know, whether it’s body image, or whether it’s things like in my case, it’s a more anxiety about the future. I get in these thought loops about what about, what if this, what if that, what if this? What if I get COVID? What if I’m intubated in the ICU? What if, you know, but so, yeah, and my training doesn’t ⁠— that training helps me have mental health coping tools, but yeah, certainly, we can sometimes get in like, the grass is greener mindset. But like, “If I knew everything Stefanie knew, I would have no problems,” you know, but we all have problems. Okay, so yeah. Yeah. So, what are like, you know, the some of the ways that yeah, having chronic illness and even rheumatoid arthritis, specifically, in your experience, has affected, you know, one’s body image?

Stefanie:  

So, as you know, rheumatoid arthritis is an invisible illness or an invisible disability. And even when we do have a visible symptom, right, like a swollen joint, or something that hurts more because it’s flaring, it’s not always visible to the public. So, I think that rheumatoid arthritis is especially significant for body image because the world can’t see it, right. But we can. So, it affects how we feel about ourselves from the inside out. And even though we can’t, the public can’t see it, sometimes we can feel like everybody can see it, right? Sometimes you can feel like everybody’s judging you based on what you can and can’t do. So, I think that that makes it a lot more complicated than say, you know, a classic illness that causes somebody to not be able to use a knee and have to use a wheelchair, cane, walker all the time, or other things that are always visible.

Cheryl: 

Yeah, yeah. And I think the exception is maybe the more severe deformities, which I do want to touch on because what I’ve heard from a lot of newly diagnosed patients is that they Google rheumatoid arthritis, and then they freak out for numerous reasons. But when they look at the images, they get scared because they think, “Well, how am I going to function in life if my knuckles are so swollen and my fingers are pointing in different directions than I think they should?” and also, “Are people going to judge me?” and are people gonna think I’m like a quote-unquote, like a ‘freak’ because my hands are so, you know, different than everyone else’s. So, you’re right. 

It’s like, depending on your severity of your illness, how long you’ve had it, it’s certainly for many that it’s invisible. And then, for some it, it’s not. And there’s kind of like privileges and downsides to both of those, right? Like, I know people with a visible disability who are in a wheelchair, so sometimes there’s total, like, there’s a lot of, you know, negatives that can come with that. Like, people thinking that you’re not, you know, people kind of patronizing you or like, touching you and thinking that you need help when you don’t, you know. So anyway, there’s all sorts. Yeah, but you’re right, that it’s almost, it’s like it’s a mixture for most people. There’s the invisible symptoms, like the fatigue, like the mental overwhelm. And then, there’s the visible ones that might be just like redness or swelling. So yeah, it’s hard to adjust to that.

Stefanie:  

And as females, I think we already ⁠— all women can say that they struggle a little with their body image. There’s so much pressure. And even you know, Cheryl, as you and I grew up, you know, we had magazines, right? We all read magazines, and some models. And now today, there’s social media with filters absolutely everywhere. Everything is airbrushed, filtered, edited, right; everything is edited. You can retake photos 100 times now, where when we were little, right, you got that one picture that cost hundreds of dollars. And that was it. So, things are a lot different now. I think women in general, you know, we have a lot of weight on us about body image. And then, rheumatoid arthritis definitely complicates it. It complicates it because of what the public can see, but also your self perception.

Cheryl: 

Yeah, yeah. And I know that you had found some really interesting studies, one of them on psoriatic arthritis. Because there are ⁠— I do want to make sure we touch on that ⁠— the skin, the skin changes with psoriatic, right, can be very visible and difficult to cope with.

Stefanie:  

Right. Psoriasis is very, very visible, like you said, and it can be very mentally aggressive. That’s what we actually call it in healthcare. We say really, it’s very bothersome, especially for young ⁠— especially young, young females ⁠— but young anybody. And it’s also, it can be in spots that’s really hard to cover, like the elbows and the knees. You know, like where I live is very hot. The thought of covering knees and elbows all year round is almost impossible. So, that can be really hard.

Cheryl: 

Wow. Yeah, yeah, it just started getting warm in the Seattle area. We’re recording this on like June 24th. But yeah, I was thinking that it’s so much easier to kind of cover yourself up in the colder months, you know, and I think it’s a balancing act for many people, you know, figuring out, do I want to say, you know, “I own this, I’m proud.” Like, when I wear compression gloves, that’s not the same as my body being different in terms of my actual skin or my joints, but it’s saying, you know, I didn’t even realize how many patients had felt ashamed or embarrassed to wear a compression glove until I started just, I was doing videos about other things like, “Here’s a toothpaste opener, and here’s, you know, a jar opener,” and I just happened to be wearing the gloves and it was like, “What are those gloves? Oh, are those those, you know, arthritis gloves that kind of help you with maybe pain?” And they’re like, “Oh, my doctor said to get one, but I was kind of like, I didn’t want to look like ⁠— I didn’t want to look different,” right?

Stefanie:  

Right. Well, I don’t know if you watch America’s Got Talent. Do you watch that show? So, Simon Cowell is wearing a wrist brace this year. 

Cheryl: 

Oh, I didn’t, I’m not caught up on this year. Okay. Yeah.

Stefanie:  

So, Simon Cowell the big man on the show is actually wearing a device on his wrist. I don’t know why and I haven’t looked into it. But I just think it’s becoming more acceptable, for sure.

Cheryl: 

Yeah, yeah. And I think there’s a lot of patients who go through kind of a ⁠— it’s like a cycle of grief, right, with your diagnosis; it’s a chronic long-term thing. And you might initially, like I was, get really optimistic like, “Oh, there’s these medicines that are gonna help,” and then they did help me a lot initially and then I got really optimistic and kind of didn’t process the disease any further. And then, I went through a stage of like, it was almost like a denial in a way but also like an ignorance is bliss. And then, I went through a stage of like, grieving again when I had a really bad flare up. So, it’s like we’re kind of going up and down but at the same stage, you can go through in terms of body image where maybe ⁠— I’m just thinking of this on the fly ⁠— but, you know, where at first, you’re like, “I need to hide it. I’m ashamed,” or, “I don’t want ⁠—” I know at work, especially a lot of people in like my Rheum to THRIVE support group have said that, “I don’t want others to know that I have this,” because if they’re in that grey area where it’s affecting their daily life, that rheumatoid arthritis or psoriatic arthritis, is affecting their daily life but it’s not so severe that they need formal work accommodations. But they kind of on the on the sly are like oh, I’m going to bring an ice pack, or I’m going to, you know, ’cause I’m afraid others will see me as ‘less than’, you know. And then over time, I’ve seen people vote go from that fear to saying, “You know what? No, this is part of me. I’m not less and anyone else because I have this condition. I’m going to wear it, you know, with pride,” and there’s ⁠— oh, it’s a Disability Pride Month isn’t it, or July is Disability Pride Month. So, we can have pride in having health differences and health challenges. So, little ramble. But yeah, but in general, what are some of the other research you found around, you know, body image and mental health?

Stefanie:  

So, there are many, many studies that show that rheumatoid arthritis and body image with rheumatoid arthritis can be strongly related to having depression and even anxiety. And then, we’ve actually talked about this before, but sometimes managing an autoimmune disease like rheumatoid arthritis can involve a specific diet. And we have seen firsthand and read many studies that have shown that those diets can often lead to disordered eating. So now, granted, there are a lot, there’s a big variation in extremes of disordered eating, right. But I think all of us with RA can relate somehow to having some sort of disordered eating at some point, because there’s so much weight on what to eat, what to avoid, you know, combining different diets, tracking what works for you. There’s a lot of pressure around that, so.

Cheryl: 

Yeah, I remember learning when I learned about eating disorders, a little lightbulb moment for me was when they said, my professors at occupational therapy school, said it’s not necessarily about body image, it’s about control. And as a control freak myself, I was like, okay, I can see that. Because when I ⁠— it’s interesting, I actually talked to my gastroenterologist and my naturopath about this related to my SIBO, which is small intestinal bacterial overgrowth. They said, you know, what happens is it’s like, your brain knows that something that you’re eating is triggering this discomfort, and then you start reducing what you’re eating, because you don’t want to feel the discomfort because you’re having it every time you eat. And like, that’s kind of how, what I experienced is that I was restricting my diet, because I felt bad every time I ate, you know, it’s kind of like Pavlovian response. Like, if you eat and you feel terrible, your brains gonna be like, “Don’t keep eating,” even though, like, I would always say, my brain is hungry, but my stomach isn’t. Like, my stomach this, like, don’t put anything more in there. 

So, so anyway, but back to the autoimmune arthritis standpoint, it’s like, there’s so few things we know we can control, right? Like, I can’t necessarily control on the cellular level⁠ ⁠— now, this is debatable ⁠— but, you know, whether, you know, one of my T-cells is going to decide to attack my synovial lining of my joints, but oh, you know, the food is so enticing because it’s like, something I control, I can choose to some degree. Now there’s a lot of privilege in the kind of clean eating thing where it’s like, oh, I have to like go to, you know, spend hundreds of dollars, but it’s very, it’s a dangerous trap to get yourself in where you’re hinging all your future happiness on, “If I just do X, or if I just Y, then I’ll be happy.” Or then, most people is like, they call it the hedonic treadmill. Have you heard of that? Yeah. Yeah, it’s like, okay, if I just, once I graduate high school, I’ll be happy because I could go to college. Okay, once I graduate college, I’ll be happy because they get my first job. Okay, once I get my first job, I’ll be happy because I can save up enough money for a down payment on an apartment. Okay, once I get the apartment, I’m gonna be happy when I get married. Once I get married, I’m going to be happy when I have ⁠— it’s like your whole life, you’re delaying happiness, you know, so.

Stefanie:  

So, with that related to body image, I think a lot of people with RA think, “Well, once I manage my RA, I’ll feel confident in myself,” or, “Once I get off steroids⁠ —” right, how often do we hear that, “Once I don’t need this prednisone, I’ll feel more confident in my own skin.” But it’s that hedonic treadmill, like you said, we just keep looking to the future or looking forward. But there’s also that reverse hedonic treadmill, right, where we think, “Oh, if I was just in college again, if I was just 20 again, if I was just a teenager again, I would feel confident, if only I could have that body back.” But that’s not true, either, right? It wouldn’t be that we’re 100% happy if we were back in time or forward in time.

Cheryl: 

That’s right. Thank you for connecting that so beautifully. Yeah, it’s so true. That’s where the mindset, you know, mindset work and mental health, whatever you want to call it, you know, learning how to examine our thoughts and detach ourselves to some degree from our thoughts. This is part of like Acceptance and Commitment Therapy and like cognitive behavior therapy to a certain extent, which is just recognizing these are just like, my thoughts are kind of like clouds passing through the sky, right. They’re not they’re not necessarily real. They’re not true. Or maybe they’re true, but do you have to let them rule your life with these thoughts saying, “Oh, my life would be better if this; oh, my life would be better if that; or I would only be happy if this,” you know, and I think that’s definitely true with body image, you know, “Oh, once I ⁠—” I think a lot of people, they hinge their happiness on, “If I get down to X pounds, if I get down to Y pounds, then I’ll be happy.” It’s kind of like, I feel like delaying your happiness like that is kind of like Whack-A-Mole, that game where it’s like, once you hit one mole, the next mole comes up. 

Stefanie:

Totally.

Cheryl:

So yeah. Yeah. And I would love to dig into your personal story as well. Like how, you know, we’ve talked to kind of generally with the clients we’ve worked with, or patients we’ve worked with, and also just being part of the autoimmune arthritis communities. You know, we’ve talked to lots of people about this issue, but what about your own personal ⁠— you alluded earlier to your own personal journey with body image and how rheumatoid arthritis has affected that.

Stefanie:  

Yeah, I would love to share. So, you said that you went through stages where you would go, many big emotions, but one you said would be you stayed in an ignorance is bliss stage. And I, begged to be in that stage for so many years now. And I could never get myself there. And I wish I could. Just for a minute, you know.

Cheryl: 

Maybe you know too much. See, because I wasn’t in health care when I got diagnosed. I was, as I was a junior in undergraduate. So yeah, you maybe, you know too much.

Stefanie:  

I never got there. 

Cheryl:

I’m sorry, I’m sorry.

Stefanie:

But girl, I wanted to get there.

Cheryl: 

Understandable.

Stefanie:  

So, my diagnosis came right after the birth of my first son. So, backing up a little bit, I’m not a small woman. I’m not considered thin, you know, it’s hard to tell online all the time. But I’ve kind of always struggled with my weight. It’s just been something in my life. I grew up on the east coast, where eating is what you do, eating is part of socializing. We always had chicken wings, chips, dip; it was part of our family, right? I grew up on Kool-Aid, Pepsi, right. I’m sure all of us did in the 90s. But, you know, it was just part of life. So, weight, for me, has always been something I had to keep track of and pay attention to. So then, when I got pregnant for the first time, I really struggled with my weight through my first pregnancy. I was still able to stay active. But I, as everybody does with their first pregnancy, I over ate and indulged in too many things. And, you know, I kind of played the lazy card sometimes. 

So, after I’d had my son, I was up a significant amount of weight. And right after that, like within days of having him I started to have these flares. So, with that being said, I was up a significant amount of weight, I had just had a baby, you know, you have all these changes. Your belly, your breasts, your legs are all swollen still from giving birth. And then, I was given this diagnosis, started on these meds, you have all these side effects, your weight can fluctuate with the meds. It was a very long road for me right after diagnosis, because I felt like ⁠— and not that I didn’t do it to myself, right, I’m not placing any blame on anybody but me ⁠— but I had like this baby weight. And this, you know, this mom body, and then I got sick right after. So, my journey was really hard because I had to really make some hard choices, change my lifestyle, lose weight, you know, just figure everything out all over again. And it probably took me a good two, even three years to really figure it out. And by that time, I was pregnant again. So, my children are three years apart. It was planned. We wanted them two to three years apart. But the second time, I did way better.

Cheryl: 

I just, yeah, I cannot imagine. I think it was so hard for me ⁠— I had already had rheumatoid arthritis for 10 years when I got pregnant and I had a great pregnancy and then terrible postpartum. But I think what was hard was everything about raising a baby and toddler is a moving target, right? I would tell my husband, the minute that I figured out the seven-month-old, “Okay, got this routine down,” he’s eight-months-old. Totally new thing. Figured out eight-months-old, now they’re nine-months-old, you know. And I found that, independent from the chronic illness, is just really hard to adjust to. And so, in your case, it’s like your life has been rocked by, first of all, having a baby which is a huge change in one’s life, and then having this diagnosis and not even knowing like ⁠— I wonder ⁠— one of the questions I find really hard to answer is, “What should my baseline be?” right. Like, our goal in healthcare is like at least and, you know, as a rehabilitation professional, it’s like what we’ve tried if someone has ⁠— they’re inhabiting X body they have Y thing happened, like get in a car accident. Okay, this your baseline. Pre-accident was X, we’re gonna get you back there. That’s the goal, you know. Then we say, is it realistic? Maybe we have to adjust our goal. But with having a baby, period, and then having an illness, like chronic or like rheumatoid arthritis, it’s very hard to know what should your baseline be, right? Eight months postpartum or two years postpartum? You don’t know, because you haven’t been there before, right. Sorry. I’m just empathizing, because that’s a lot. And then, by the time you figure it out, then you’re pregnant again. Oh, my gosh, okay.

Stefanie:  

It was hard for me to ⁠— that’s exactly it. It was hard for me to figure out my baseline. But then, you have all these people around you who, in my life, they were only kindness and love. But I had all these people around me that had this baseline expectation of me, too, that would vary from what I thought my baseline should be, you know. I had a lot of knowledge, almost unfortunately, right. I had a lot of knowledge about RA going into it. So, I had these expectations. And I knew what, you know, my thumb would come back as, and my wrist would come back as, and I knew the like, optimal outcome of treatment. But, you know, my children’s grandparents didn’t really know, my husband didn’t really know. And so, they had these different expectations. And I think that’s really hard, too, because you don’t know your baseline, and then the other people around you don’t know your baseline. And then it changes anyway, right? RA, you can wake up today and run 10 miles and you wake up tomorrow, not be able to walk.

Cheryl: 

Completely. I just had a conversation, you know, with my doctor, because it’s been 19 years now. And so, I’m like, you know, the further you get away from your age at diagnosis, the harder it is, right? Because if you’re ⁠— I got diagnosed at 20 right before I turned 21, and it’s like, okay, well, at that point, okay, we’re gonna get you back to your baseline of like, six months ago, or two years ago, before you started feeling really crappy all the time. But it’s like, but now, I don’t, again, I don’t have that baseline, and what is normal? What does a normal 40-year-old feel like? I mean, I don’t know what life is like, without rheumatoid arthritis, you know. The closest I got was the, um, you know, unmedicated remission during pregnancy for me, because at the time 2013, 2014, they were saying, you know, recommending to get off the biologic if you were having a good pregnancy. So, I stayed on my biologic for like five months just to kind of, that was kind of the recommendation, four or five months. And then it was like pretty clear I was having a good pregnancy; I wasn’t having a flare up. So, they’re, like, take you off the medicine and go back on postpartum. 

So, but that ⁠— and I felt amazing, like I felt ⁠— but I didn’t know how much of that is also just pregnancy, right? Like, a lot of people feel bad during pregnancy but, you know, in my case, the rheumatoid arthritis went into remission. And so, I was dancing. I was literally swing dancing; teaching beginners swing classes at seven months pregnant. I wish I’d taken more videos at that time. It’s hard to imagine the world was, you know, even just phone storage for video was much less back then. So, isn’t that weird to think like, it was only eight years ago. But anyway, point being. So yeah, that’s the closest. Because I remember thinking to my husband like, and like, I don’t feel exhausted at 7pm. Like, I’m used to feeling exhausted every single day. I didn’t realize that that was part ⁠— I didn’t know that that was possible for me. I thought that was just my body. But it’s like, oh, that’s maybe the rheumatoid arthritis, you know? So anyway, so it’s hard to know. And then, you had your other son. So, sorry. So then, you’re, so then you’re struggling to figure out your quote-unquote ‘baseline’ or your ‘normal’ ⁠— yeah, you said a second pregnancy went better. So, do you mean in terms of like emotionally?

Stefanie:  

So, I think the second pregnancy went the same, but I was emotionally prepared for it. But, you know, everybody, after you have a baby, you want to there’s always this this stigma of getting back in your jeans, right? Get back in your jeans. And I remember after I had my first son, not only did they not fit, but I couldn’t button them. And I still can barely button pants. So, I think that there was this huge shift in my life to just find different ways to be beautiful. And it was very, very hard to come. I mean, it’s taken me years to figure out like, what I can wear and what I can’t wear, what I feel good in and what I don’t feel good in. And, you know, I remember ⁠— sorry, that’s just my daughter. I even still remember having the little baby trying to breastfeed and getting that little hook off of the nursing bra. And I remember thinking, “I can’t do this,” like I cannot hook and unhook this bra. And so, I had to find different things to wear. Thankfully, there’s a lot of options now, as you know way better than me, but I just remember thinking, “Yeah, I can’t wear this and this is just not this is not going to be my future.” So, I had to find new things to wear and to put on my body. New, even down to like makeup brushes after I had my first son. I had to change my whole routine, because I couldn’t even just get ready for the day, let alone be sexy, right? Who doesn’t want to be sexy after they have a baby?

Cheryl: 

Right, right. Well, maybe not immediately. 

Stefanie:

Right, right. 

Cheryl:

Sorry.

Stefanie: 

No, but it was ⁠—

Cheryl:

Yeah, eventually. Yeah, you want to make, you want to make another baby. Yeah.

Stefanie:  

Yeah, my journey was pretty rough after that first baby, the pants thing. And then I love ⁠— I love the beach. I love the ocean. I love snorkeling. I love that. And so, finding a swimsuit was hard, because who wants to be in a bikini or a bathing suit at all after having baby number one. And then all of the ties and snaps and zippers and the one-piece situation. I just, like, it was very hard to find something after having a baby and having joint limitations that worked and still looked good. So luckily, I’ve had like eight years to figure it out now. So, I have a lot of great tips. But it took me probably the whole eight years.

Cheryl: 

No, I mean, yeah, it’s an ongoing journey, you know. And it’s funny because, like, the only thing I would say with regards to my own kind of body image, I guess, journey is I was very lucky in middle school and high school. I feel like the ⁠— I went to a really highly rated public school in Washington State, Mercer Island High School, Mercer Islander Middle School. But they did ⁠— I remember specific exercises that they, the counsellor, did with like groups of girls. And we went through magazines, and we cut out the image and talked about like things or put ⁠— or airbrushed, this is in the early 90s. So, people weren’t as kind of, they didn’t understand at the same level they do now because now you can ⁠— kids, they’re experimenting with the filters themselves and realizing, “Oh, I can make myself look totally different.” But back then, we didn’t know how it worked because you had film cameras. And so, and I went through this just really great social emotional upbringing. And of course, my parents. I always joke that I like, I mean not joke, I always brag in a way or say that I was just very lucky like to have a, like, grow up in essentially like what felt like Mr. Rogers neighborhood, you know. 

I had amazing parents and amazing grandparents, like, great schools like, and, you know, so I worked ⁠— I felt like I worked really hard to like, disentangle my worth from my body. But at the same time, like, my friend group, I don’t think any of them are listening. I’m still close to my high school friends, but I don’t ⁠— they’re always like, good job but I don’t think they listen to my podcast. But they’re like, literally just beautiful. Like Carolyn, one of my best friends. She looks like, she literally looks like Cameron Diaz. Like, she has the most beautiful, you know, and so I always felt like, I wasn’t as pretty as my friends. And I was like, I wish I was more pretty, you know, but it was also like, oh, well. I think I have a little bit of the gene of like, who cares? Like, a shameless gene. But I did ⁠— there’s other things, right? So, I’m very pale, I am very thin. And so, that is the kind of quote and the norm in our culture is, you know, that people are supposed to aspire to be thin, which is totally crap, you know, but I’m extremely pale. And so, I would always get comments when I’m swimming, “You’re so white. Oh, can I hold my hand up next to you and see how much I’ve tanned,” because they would want to ⁠— and even saying that sounds silly, but it’s like it did ⁠— I was like, subconscious. And I have dark, thick hair. So, I’d also be self-conscious about having hair. And even when I shave, you can see the little dots like of the hair underneath my skin, like literally, it’ll feel totally soft, or it’ll feel totally, my skin feels totally, there’s no hair coming out. But it looks like it’s there. Anyway. 

So, the thing is, we all have something, right? So, it’s again, if you think to yourself, “Oh, if I just, you know, had Cheryl’s frame, I would be happier.” No, because then I’m worried about being so pale. Or, you know, it’s like, everyone’s, you know, the grass is greener thing. But, um, but, you know, I think I actually got, you know, the doctors when I was first misdiagnosed thought that I was hiding an eating disorder. And I remember feeling so offended by that because I had worked so hard to not have body image issues. And again, now I understand that eating disorders are as much about control as they are about like a desire for control and kind of an OCD type mindset versus just being about body image. But I was like, “No, you don’t understand. Like, I would rather be obese right now and not feel the way I feel,” like, I just I’m jealous of anyone who just can walk through the world right now not feeling the amount of pain I’m feeling, you know, and not in this sense of desperation of like, no one believes me. You know, it’s like, the example I always use is it’s like your house is on fire and you call the firemen and they’re like, “It’s fine.” That’s what it’s like being undiagnosed with a chronic illness and going to the doctor, and they’re like, “You’re fine.” So, who do you go to? 

Stefanie:  

Yeah. I think what’s important to remember about body image is that whether you’re overweight or struggle with weight, like me, or normal weight, or even underweight, as maybe you have been at periods in your life, neither one of us is perfect, and neither one of us is completely happy when we’re at a normal weight, or completely happy when we’re not. And happiness is not related to a certain image of our body. 

Cheryl:

Yeah. 

Stefanie:

I remember one time when Dr. Phil was really big, you remember that talk show.

Cheryl: 

I loved him at the time. I know he’s problematic, problematic. But at the time, when he first became popular, I was like, huge fan.

Stefanie:  

Yeah, so I remember I was a young female watching. And he did this episode on body image. And they went around the audience. And this was before COVID. So, they were packed like sardines. And they pulled, you know, like 10 women that were normal weight, right, like, quote, ‘normal’⁠ ⁠— I’m doing air quotes. And they put the mic up to them back when we had the big goofy mics. And, you know, Dr. Phil would say, “You’re a normal weight. Are you happy?” And he would hand the microphone to the random audience member. And she would say, “No, like, I have problems, I might be 120 pounds, but I have problems.” And most of the women were gorgeous, right? They were beautiful. You know, they were casted from wherever, I’m sure they were planted. But I just remember thinking like, wow, I guess that that that perfect body image, you know, to look like Heidi Klum, or whoever, you know, they still have problems, too. And you forget that. And they still have diseases, and they still have, you know, beautiful people still get cancer. And I am beautiful. And I have RA. And that’s that, right.

Cheryl: 

Yeah. Yeah. Hold on one second, my cats making some background noise. Yeah, yeah. And I’ve talked a lot about one of my favorite books, which is the Happiness Trap by Dr. Russ Harris. And so, I’m gonna link to it once again in the show notes. He’s doing an updated version of it this summer, actually, but um, it really talks about how just the happiness trap is really this idea that you should be happy all the time, you know, because that’s never been the human condition. But at the same time, this paradox of if you unhinge your expectations, yourself from your expectations of what should make you happy and shouldn’t, you actually will be happy, but you can’t get there by trying to be happy. You know what I’m saying? And so, anyway, so, you know what, let’s, if you’re okay with it, let’s jump ahead to the strategies that you found helpful. Like, you were just mentioning, you know, saying, I mean, thinking of those examples, like the Dr. Phil one where, you know, recognizing the common humanity we have and the fact that no one is, no one has a perfect — even people who have what you think is the perfect body, their body image isn’t perfect. And so, that your worth is so much bigger than what you look like, you know. What are some of the other, what other pieces of advice or nuggets of wisdom would you share with people who are struggling with this right now?

Stefanie:  

So, when I was first diagnosed and I had all of these struggles, I was a victim to the happiness trap. And I kept saying, “I should be happy, I should be able to make myself happy.” And I put all of this weight and pressure on myself to manage my emotions to create happiness. And looking back, there is a lot of power in our mind and a lot of power in our thoughts. However, just buy the stuff you need. That’s my advice. If you can buy a better swimsuit that you can put on and feel gorgeous in, you should spend the $150, $200 and keep it forever, right? If you need stronger sunscreen or different sunscreen, because the cheap stuff at Walmart, Target wherever, you know, gives you pimples or makes you oily or you don’t feel sexy in it, buy the high-end sunscreen. And I know a lot of people are probably saying, well, I don’t have the resources or you know, there are limitations. But I really think once you prioritize those things that you will naturally find happiness because you will have so much more space in your brain to worry about what matters. 

And I used to fight — I used to buy jeans, right? I wanted low rise jeans so bad postpartum. And I would buy them and I would fight with them and struggle with them. And I remember we would go out for the evening and I would tell my husband, I can’t use the bathroom because I can’t get my pants on or off. So, we have to go this entire evening and I can’t drink, I don’t want to eat because I can’t, I can’t pull down my pants to use the bathroom. And looking back that was just so silly. I should have just bought different clothes. And I’m definitely not saying go drop thousands dollars and, you know, spend money like it doesn’t matter. But if there’s something that you can buy, like you’re always promoting, right, if there’s a product you can buy that’ll open that jar that is infuriating you, I feel the same about body image. If there is a swimsuit that’s adaptable, a sunscreen that’s better for you, a pair of pants that works, I really think you should just bite the bullet and buy it. And I think you will have emotional strength grow in leaps and bounds from doing that for yourself.

Cheryl: 

Yeah, I couldn’t agree more because I’m always promoting that, like you mentioned, you know. And I think if we peel back the layer — like, of what I’ve seen, I’m not saying this was in your case — but let’s say there’s a lot of adaptive clothing out there right now. There’s — I just, I’m trying out a pair shorts that look, they’re jeans shorts, but they have a Velcro closure instead of buttons or zipper. And that Velcro tends to be a lot easier. Now it’s not, not everyone with rheumatoid arthritis can do Velcro, it still requires some finger strength. But it’s easier for me. It also have a broad, has a magnetic closure; those are actually super easy to get on and off. And so, a lot of times people say, “Well, I don’t want to use something different, I don’t want to use something different, I want to do what everyone else does.” Now I know this is particularly true of children, like I used to work as a pediatric therapist. 

And, for example, I’d have a child that maybe really benefited from using a pencil grip on their pencil, which is like a rubber belt, you know, fatter thing that helps them with their grip and their grasp. And they’re like, “I don’t want to look different other kids,” and I want to respect that that’s how a lot of people feel, but I really encourage people to kind of think about it in the framework of ableism. Because ableism it’s like, you know, racism is saying that, you know, that discriminating on people based on their race, ethnicity, and saying that they’re worse than or less than because of some people are worse or less than right, because of their race. And ableism is the same thing, but with disabilities or with health conditions, is saying that some people with — people with disabilities and health conditions are less than people who are, you know, totally healthy or able-bodied, and it’s discrimination against people who have those conditions. And internalized ableism is when we, as disabled people or people with disabilities or health challenges, say, you know, we discriminate against ourselves, which is such a complex phenomenon. Because we say, “I should be able to just push through, I should just do the should be to just do the —” 

Stefanie:  

Right. “I should be able to button those pants,” yeah.

Cheryl: 

Yeah, I don’t want to have — I don’t want to give in or give up but it’s like, okay, well, like you have — you can choose to suffer and put yourself through difficulty, or you can choose to say like, F those expectations, or F that. Like, I don’t — like, normal is overrated, okay. There is no normal anyway. But, you know, it really is going to help you to kind of say like, why? There’s this technique called the Five Why’s, and it’s used in so many different settings. But in this case, it’s like, so why. Why is a set of jeans with a zipper and a button better than jeans with a Velcro? Oh, it’s because it’s what everyone else uses. Okay, well, why is something better because everyone else uses it? Well, because what, like why, you know? Like, ask yourself why, you know. And then, again, I feel like I’m coming from a position of like, already having no shame to begin with. So, it is easier for me to be like, I don’t care, I’m going to wear the glove, I’m going to wear the Velcro bra. But I really think that that can go a long way it when you kind of look at body image and look at your self worth from this perspective of ableism because it makes you, it leads you usually to the path of saying, you know, no one’s life is less worthy, you know, because they have a disability. It might be harder. It might be, you know, I’m not going to say it’s like, equally easy to have a disability versus not. Some things in your life are going to be harder. But your worth is, your innate human worth is there because you are a person, you know.

Stefanie:  

I think a lot of the struggle with body image is that we want to go from having no self-confidence to what you’re saying and having this big worth and having value and loving our body and feeling comfortable in our skin. But I think it’s really important to find a middle ground sometimes, especially in the process. For example, after I had my son, I had this baby weight. I had a post, you know, a post-baby body. I had a new diagnosis of Ra. And I wanted to just be a swimsuit model again. And it was impossible. So, I had to step back and go from having what I just described to simply having a body and I had to just find this neutral place of contentment of having a body that works, that has lungs and heart and digestive system. And I have a body. And then, slowly from there I could go to I love my body, and I care about my body, and my body serves me, and I am happy where I am, and I’m happy in my own body. But I think a lot of times we go from this, like, ‘I hate my body’ to wanting to be like in love with ourselves and, you know, be so comfortable in our skin all the time. And that’s such a big jump. So, like you’re saying, a lot of ableism, a lot of able-bodied people can really do that, because their body looks and feels exactly the same as it did yesterday, right. But that’s not the case for us. So, that’s my other big recommendation, is to find that neutral spot in the middle of contentment and just kindness to yourself. And forgiveness, right. It’s okay that I ate way too many nachos while I was pregnant. I forgive myself, I’m gonna move on, you know, and just finding a place of contentment and self-kindness before.

Cheryl: 

Yeah, I love that. I love that idea of a neutral ground. So, not trying to go between ‘I hate my body’ and then two hours later, ‘I love my body’.

Stefanie:

Right.

Cheryl:

That is not realistic, like unless you have a total epiphany, which, you know, let’s shoot for the stars. But most people, it’s going to be a stair step process. And I love that idea of what if you could just be body neutral, being like, I don’t — yeah, I think that is kind of where I’ve been a lot of times. It’s been kind of like, I don’t, I don’t really care. Like, it’s not like, “I love my body. It’s perfect just the way it is.” It’s more like, meh, you know? 

Stefanie:

Yeah. Like, it works.

Cheryl:

You know, it’s kind of like my ex-boyfriend said at one point — this isn’t like regarding me — but he said, he just said and in my mind, it stuck in my head, like, “The opposite of love isn’t hate, its ambivalence.” And so, because love and hate are both strong emotions towards someone. It’s about, you care about that person, you care about what they think, what they do. Ambivalence is actually kind of like, to really, they always say like — and this is totally a side note — but like to piss off a narcissist is to like, be just ambivalent. Because if you react, that’s what they want, they want control over you, you know? So, I’m saying like, what if you’re just ambivalent about your body? What if you’re like, it’s just a body, like it has stuff, my body has like little dark hairs that come out of my super pasty white whatever. Like, okay, like, you know?

I have deformities on my feet. And I know I occasionally look on my feet. And I’m like, disgusted. Like, ugh, like, you know, just like a knee jerk reaction. And that’s from, you know, living in a world where you’re supposed to look like a foot model and like, you’re supposed to — and then I’m just like, okay, I don’t, I can’t control that initial reaction. That’s just like an emotion that just flutters up. But I can just be like, “Yeah, they’re just, they’re my feet, you know. That’s what they are.” And, you know, and then I move on to, you know, again, I have some, especially being in middle age now, you know, being 40, it’s kind of it is this kind of midlife thing where you’re like, “Okay, I might have 40 years left if I’m very lucky, 50 years if I’m extremely lucky. Do I want to spend the next 50 years worrying about it, that I have toe deformities?” I can, you know, that’s a choice that I could make. 

But I could also choose to be like, what else is going on in my life? Like, what could I be focused on right now? It’s easier said than done. Believe me. Somebody who has a phobia where like, this all makes sense to me about body image, but when it comes to like my phobia, my claustrophobia, it’s much harder, right? Like, do you want to end the rest of your life phobic about small spaces and flying? No, I don’t want to spend the rest of my life phobic. But when I get in that situation, even after exposure therapy, it’s still very hard for me to cope with those thoughts and persevere, you know, I recently flew for the first time in a long time, and it was hard not to run off that plane. So, I’m saying I want to empathize. It’s easier for me to say about something that hasn’t bothered me as much.

Stefanie:  

Well, on that note, you can remember that rheumatoid arthritis will do nothing optimistic or positive to your body. We can all scientifically agree on that, right? There’s no good outcome, there’s only remission. But the best outcome that can come is your thoughts and being able to manage your thoughts and manage your emotions, especially about your body. So, although RA does change lives, it doesn’t have to change you. And it’s really important. So, that goes back to your fear of flying and planes and claustrophobia where, you know, that fear — there’s only one outcome that can come of that, and its fear and it’s in you and no matter how much you desensitize or make efforts, it may never go away. But what you can change, the positive outcome that you can produce all on your own, is your thoughts and your actions that you take surrounding that.

Cheryl: 

Yeah, yeah. The way my therapist focused on it in terms of the phobia was is to let go of trying to control my thoughts, but definitely controlling my actions to say like, I could literally — because it’s not, I’m not afraid of the plane crashing, it’s actually the worst when the plane is on the ground because we’re not moving. Once we’re moving, I don’t feel as claustrophobic for whatever reason. But like, as that of a dentist, anytime I can’t get out of a situation, it’s like, I feel like I can’t leave if I wanted to. So, you know, being in an elevator being in — and so, he’s kind of said, like, you know, “Look, you could say, ‘I’m never gonna go the dentist again, I’m never gonna go in an elevator again,’ you could do that. And your life would just get small,” right? It will get smaller. And that’s the consequence. So, you can choose to say like, “This sucks, I don’t like this, and I’m going —” and I will say, just FYI, for people listening. I still struggle, but it’s way better than it used to be. It’s just, it’s not like I’m totally at one with the universe and happy and peaceful if I get into an MRI machine. But I am, I used to have to be medicated with, you know, a benzodiazepine, whatever it’s called, benzo drug. Very rarely, just in these situations that I could not physically get myself to get into these situations, the claustrophobia ones without doing that. And now I’m able to numerous times not, and definitely deescalate. But yeah, I had to let go of that sense of control. And that’s, again, everything goes back to control. But anyway.

Stefanie:  

Yeah. But you can control how you feel about your body. You may not be able to control its response.

Cheryl: 

Yeah, you can definitely, you can definitely, yeah, alter some of those maladaptive thought patterns, or just, you know, and you don’t want to get too much — I know, and Dr. Harris talks about the struggle switch, which is like struggling with life at the present moment and kind of arguing with yourself, which is CBT sometimes goes haywire. Because then you’re like, is this a distortion? Is this wrong? Is this right? But in moderation, it can be helpful. Like, I’ve said stuff to myself, like, you know, “Would my life be so much better if X happens? Like, let’s look at that logically for a second. What’s the evidence of that? Let’s look at, you know, so and so who has that situation.” If someone who is in remission from rheumatoid arthritis, okay, well, yeah. Certain problems in their life have been eliminated, right. The Whack-A-Mole, you know, has been whacked. But then, no one — again, their life, they might have other challenges, you know. So yeah, it’s very dangerous to kind of say that, “If X, then everything would be better,” you know.

Stefanie:

Right.

Cheryl: 

Yeah. Is there anything else you wanted to touch on when it comes to, you know, advice for people who are just kind of — words of wisdom, I mean, we’ve covered so much but when it comes to body image, and you know, inflammatory arthritis or rheumatic diseases like RA? I never know how to talk about that. There’s like 19 different ways to refer to it, like autoimmune arthritis, rheumatic disease, inflammatory arthritis. Yeah, so many. Rheumatoid disease.

Stefanie:  

I think it’s very important to remember that life is really what you make of it. And you can tell your own story. And you can write your own guide book. And you can make your own rules. There’s no reason to follow rules that were written by somebody else or for somebody else. So, I think what you share with the world is your choice. And a lot of that can apply to having RA. So, whether you love your body, or are neutral with your body, or are struggling with your body, the world really only sees what you share with it. So, sometimes you have to follow that old quote from Sheryl Sandberg, you know, and just fake it till you make it and lean in.

Cheryl: 

Yeah, that’s a good point. And maybe just like, in terms of being confident while wearing a compression glove, or wearing a splint, or anything else like that, to say like, “What if I just try on the persona for five minutes of somebody who’s doing this?” It’s kind of like, I remember, it’s interesting. In psychology, it’s like, we always think that beliefs inform behaviors. Like, “I feel confident, therefore, I walk in a confident way, and I do these confident things.” But it’s actually sometimes the opposite, that when you change your behavior, and you say, “Let’s just pretend that I’m —” I almost said ‘that’s happy’; that’s not possible, not really going to work in that case, I don’t think — but pretend that you’re confident in your body. And you might be surprised, you know, that you actually start feeling more confidence. 

So, I think, you know, the only thing I would add to that is like accessing images or stories of others who have maybe been where you’re at and how, and yeah, and because that’s something I didn’t think of when I set off to do what I’m doing online, you know, with just videos and stories and all the stuff I share on social media, I was initially thinking more straightforward, like sharing life hacks, right. Like, sharing life hacks and sprinkling in mental health tips, you know, but hooking everyone in with the life hacks. But what I’ve realized is that again, when people see that, “Oh, Cheryl is not afraid of, of using a jar opener. And she doesn’t, you know, care that, you know, that her —” I don’t know, I do have mild, very, very mild, some, you know, deformities, the untrained eye wouldn’t see them. But so many people comment all the time, “Oh, I wish —” I was doing my little like hand dance the other day, and someone’s like, “Oh, I wish I had your range of motion.” And it’s like, it’s true, it is really good for 19 years into it with a severe, you know, aggressive RA diagnosis since 2003. But anyway, yeah, knowing that, you know, seeing that you’re not alone, because we all tend to feel that. I can’t tell you every single day, I’m saying this to you right now. And every day, I’ll have an experience on social media or in my regular life, and I’ll be like, “Oh, I thought they had it all figured out,” you know, I thought that their life was perfect. Like, why do I keep doing this, you know? And then I’ll see like, oh, yeah, they’re struggling, too. I’m not alone. So, it’s really helpful.

Stefanie:  

I agree. Surrounding yourself with people that also have RA, I think, is actually really helpful. Because there are truly amazing people out there that have RA, and they blow me away and impress me every single day.

Cheryl: 

Really, it’s been the silver lining of the pandemic for me, has been being able to connect so much deeper with so many people like, you know, you and Ally and like Kristen Brogan, she’s not as active online anymore, you know, but so many. I don’t even want to like name names because then it’ll sound like I’m just picking favorites, because it’s just my free recall memory. But, you know, Ashley Nicole doing all her Food, Fitness, Faith, and it’s just been really, really amazing. So yeah. Yeah. And, you know, you can find the social media corners that work for you, you know, some people find some of the Facebook groups too negative, or, you know, but you might be in a place where you just want to vent and that works for you. So yeah, this is so great. I really, really appreciate you sharing. I know it’s very — it’s hard to be vulnerable about these topics, right, about body image, and so I appreciate, you know, your honesty, and I just, I want to make sure that people know where they can find you online if they want to connect further or find out which, you know, see your content and such. Well, thank you so much for your time and vulnerability. I know this can be a really challenging topic to talk about. So, I really, really appreciate it. And I’m sure some of the audience are wondering where they can follow you online and how, where can they find you?

Stefanie:  

So, again, thank you for having me. And you’re right. It is very vulnerable to talk about this. But I find it helps so many people to share my story and to share it with you even though we are so different, we’re really still the same and finding that is so beautiful. Again, I’m Stefanie, I’m the Rheumatoid Arthritis Coach. You can find me at rheumatoidarthritiscoach.com. I’m also on Instagram and Facebook as Stefanie, The Rheumatoid Arthritis Coach. I believe Cheryl is going to link all of my pages and social media. I’m also on Pinterest. I do publish articles quite regularly, and I also have a book coming very soon.

Cheryl: 

Oh! Oh, my gosh, what? I didn’t know that. That’s very exciting.

Stefanie:  

It is so exciting. I never thought, but.

Cheryl: 

That’s on my bucket list, too. Do you want to say the title? Are you allowed to say the title or is it like, stay tuned? 

Stefanie:

Not yet. 

Cheryl:

Okay.

Stefanie:

Stay tuned. 

Cheryl:

Oh, that’s so great. Well, thank you again, and I will be taking these lessons with me as I get ready for a finally sunny summer here in Seattle.

Stefanie:  

I’ll give you so much sun. I’ll give you all of it.

Cheryl: 

I know. Everyone else has been in a heatwave and we’ve been like, it’s dreary and cold and rainy again. So yes, thank you so much again. Bye-bye for now.