In episode 62 of the Arthritis Life Podcast, Erin and Heather share how they learned to manage rheumatoid arthritis in a supportive virtual environment through Cheryl’s Rheum to THRIVE program
This conversation originally took place as an Instagram Live discussion in September 2021.
Episode at a glance:
- Erin shares her diagnosis story: originally ankylosing spondylitis, then changed to rheumatoid arthritis
- Heather shares how she felt “desperate to find answers” after her rheumatoid arthritis worsened
- Erin and Heather share how they became more empowered through joining the Rheum to THRIVE program
- Heather shares how important it was for her to have access to a consistent set of resources and how she benefited from learning skills to “be the CEO of her care team!”
- Erin shares what it meant to her to have a supportive community
- Erin reflects on how she previously did not ask for work accommodations due to shame and guilt, before she became empowered and understood the power of counteracting your own internalized ableism
- Heather reflects on how she used to “fake it til you make it” or “power through,” then she gained the courage to talk to her boss about her needs for accommodations at work
- Erin and Cheryl reflect on how their experiences with Facebook “support groups” is different than Rheum to THRIVE
- Amy shares what she got out of Rheum to THRIVE
- Cheryl answers some FAQs about the program
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. Registration is open now through March 31st, 2022 – it’s only open twice a year so join the Spring 2022 group now if you’re interested!
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:
Erin (she/her) (@erin.on.insta on Instagram) is an artist and former visual manager/trainer who was very suddenly impacted by intense symptoms in 2018. Thought to be diagnosed with AS and later determined it was seronegative rheumatoid arthritis, though there is still some question to the “and what else” part. Now that I have a medication regimen, along with some natural therapies, under control, I’m working towards a grad school degree to become a psychotherapist. I want to provide accessible therapy, with a culturally responsive and socially just lens, specializing in work with the disabled /chronically ill communities.
Heather Leavitt Martinez (@corpgraffitiart on Instagram) is a virtual facilitator and visual practitioner who loves to share knowledge and provide exceptional online experiences for others. She created Tech Host Academy, which trains tech hosts to make meaningful online experiences for presenters, learners and team members.
Amy Bowers (@amymbowers on Instagram) is a lawyer and professor of legal writing, cat mom, and aspiring fiction writer who lives in Miami, Florida. When she’s not dipping her hands in paraffin wax or sitting statue-still with an electric heating pad wrapped around her feet, she enjoys watching TV, making cocktails, and coloring.
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:
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. Registration is open now through March 31st, 2022 – it’s only open twice a year so join now if you’re interested!
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:
[Introductory music]
Hi! My name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks, and how to respond when people say, “You don’t look sick”, stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness — no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.
Cheryl:
Hi, there. Thank you so much for listening to The Arthritis Life Podcast! I just wanted to give a quick introduction to today’s episode. So, this is actually from an Instagram live conversation I had with Erin and Heather back in the fall of 2021. And as you’ll hear, Erin and Heather were both in the position so many people with inflammatory arthritis find themselves in, which is you’re trying to kind of put together on your own a plan for how to actually live with this condition. And so many people, you know, they do the best that they can, but they need more guidance and need more support. And honestly, it’s just tough to go through it on their own. So, in this episode, you’re going to hear how the program that I developed, Rheum to THRIVE, has helped them on their journey. And if this sounds like something you’d be interested in, I just want to make sure you know that I open registration twice a year in the spring and in the fall, and registration closes on March 31, 2022. And then it will open again in September. So, I don’t want you to miss your chance. If you’re interested, you can find the links to sign up in the show notes or just go to myarthritislife.net. So, without further ado, here’s Erin and Heather stories.
So, Erin, so you were saying that, you know, you had a hard time initially even just knowing what your diagnosis was, right. So, that’s kind of it’s hard to find where you fit in, I would imagine.
Erin:
It was so exciting to finally get a diagnosis that felt like it made sense to me. Because, you know, as with any rheumatic disease, there isn’t one category, one checklist that works for absolutely everybody.
Cheryl:
Yes.
Erin:
I had a doctor once that said, you know, “We know what aisle of the grocery store you’re in, but we don’t know what shelf you’re on.” And really, you know, that resonated with me. But going forwards and getting the rheumatoid arthritis and then following the medication regimen for that, it really kind of hit home for me. And I was like, this makes sense for me. And that’s when I really started to see progress with improving.
Cheryl:
Yeah, yeah. And I would love to know a little bit of your state of mind, like when you first joined Rheum to THRIVE. Like, what — or maybe right before you did, like what was it that made you want to join? I know you had said before, that you were a little bit hesitant to join because you had gotten a lot of information, and you felt like you kind of knew a lot of tools. But what made you want to join ultimately?
Erin:
Sure, yeah. So, for me, I kind of surprised myself at the beginning of this journey where the disease really came on strong. Because I, instead of kind of shying away from, you know, researching diseases because I didn’t feel good with the ankylosing spondylitis diagnosis, I really started researching and trying to find, you know, put these like really confusing puzzle pieces together. And that was empowering for me. It didn’t scare me, understanding the side effects, understanding the long-term possibilities of the disease. I was so surprised how empowered it made me feel instead of completely terrifying me. And I know that’s not always the way it goes. However, after feeling like I have my disease kind of under control to a certain extent, I still felt kind of empty. And I realized that, you know, I was trying to side more with the logic and more with the research instead of really tapping into like, what else do I need to get me through this as a human being with emotions? And I decided to join the group because I thought, I have support. Like, I have a few friends and family members that seem to really get it as much as someone who doesn’t have the disease can get it. And I feel good with the team of doctors that I have. However, it’s just not the same as having someone who really understands what you’re going through. And that was kind of what pushed me to join the group.
Cheryl:
Yeah, I totally, I totally get that. I see Heather, you’re nodding as well.
Heather:
Yeah, in fact, I don’t know how I came across it other than I was getting really desperate to find some answers. And I take a lot of alternative approaches to things, and I’m a visual person. And somehow, you came across my feed. I don’t know if it was online, or if it was through Instagram or what, but you had a roadmap. And I make roadmaps for a living. And I was like, “Roadmap? What is this? There’s a roadmap!” like, I would love to have a handbook that says ‘How to Get Through This’ and I just, I joined immediately. Like, it was like, here’s all my money, whatever it takes. And when I joined, I was like — I don’t know what I was expecting. I don’t think I knew it was a group of people who are going through the same thing. I thought I would just watch some videos, get some information and, you know, move on. And after the first session, I remember sitting there wishing that the meeting had kept going. Like, can this be longer? And I don’t even know how long we mean, an hour, hour and a half, two hours or something.
Cheryl:
It’s supposed to be an hour, but it’s usually an hour and a half.
Heather:
Oh, my gosh. Not long enough. And it just felt like, I’ve never been a part of a support group before. And I didn’t have any judgement towards it, but I didn’t really understand the value. And to be in a room with people experiencing all different kinds of things but we all still had something in common, made the chaos of having RA — I don’t want to say ‘normal’ because I don’t even like that word. But it was like, oh, good. I at least have a resource. I can ask questions. And actually, more of my questions get answered without me even asking them. Just witnessing everyone in the group has been so eye opening, refreshing. So, if you’re — for me, when I was alone with RA, I was scared a lot. And now I’m not scared. Oh, I’m looking forward to the next time we meet and learning more. Yeah.
Cheryl:
Oh, that’s amazing. That’s exactly why I made a group, specifically. But, you know, even after making Rheum to THRIVE into an actual group program, it’s still amazed me how quickly and how deep the bonds have been able to form between members. I mean, it’s just like, it’s, it’s one thing to maybe read an article online and say, “Oh, it’s normal to feel this way after you get diagnosed,” but it’s another thing to be in a live Zoom call and having someone be so vulnerable to just say, “Oh, my gosh, I’m starting a new medication. I’m a little bit terrified,” and have, you know, five people kind of say, “I was too. It’s normal. It’s okay,” you know? Like you said, you kind of don’t want — you don’t want anything to be normalized because you don’t want to have this disease in the first place. But given that you have it, yeah, it’s amazing to have that, you know, this knowledge that you’re not alone. It’s amazing how connected we are via social media, yet we can still feel alone.
That’s funny. You mentioned the roadmap, because yeah, in a way, Rheum to THRIVE is really like a blend of the information that I taught and that self-paced — I teach in the self-paced Rheumatoid Arthritis Roadmap Course, which people can just buy and take on their own. It’s for the people that like, they want to do the whole thing themselves and they don’t really want the support or feel that they need it at the moment. But I was using this analogy earlier today with Gittel, the Rheum to THRIVE, it’s like you have a tour guide, almost. Like, I’m the tour guide but I’m also like a participant. So, it’s like I live here and I give you a little tour because I’ve been here longer than you! You know, anyway, I’m just, I’m just talking about why I think the program is good.
Obviously, I made it so I think it’s good. I do tell people, okay, it’s not for you if you’re wanting to like have a methodology that’s meant to heal or cure the disease itself. Like, there’s Ayurvedic medicine programs; there’s other programs that are designed for that. And so, if someone comes to me and they’re like, “Oh, that’s what I want,” I will definitely refer them. It’s really meant to be a blend of here’s tools that can help alleviate the symptoms and help you cope and deal with the now, the here, what is exactly going on now and connect to our present live. So, what do you think has changed for you, as a result of being part of this group?
Heather:
I have to say that so far, because you have themes every single month, and I read through what the upcoming ones were going to be. And I thought, “Oh, this will be really helpful. It’ll give me the autonomy and the agency over, you know, over this disease that I really need.” And I think we talked about mindsets. And I work for a leadership development company, where mindsets, behaviors, and skill sets are our framework. And so, I was able to plug a lot of the tools that you gave us into that framework that I already hold, and it was just like, oh, this is great. So, when we moved over to becoming the CEO of our care team, I have just been like in my element. This is my zone of genius. And everything you gave us from learning how to do all the different tools that you gave — I don’t know if how much of the secret sauce you want me to give…
Cheryl:
You can tell! [Laughs]
Heather:
It has been fantastic for me to feel like even though every day is crazy, I at least have — I am doing everything I can in my power to make this an easier journey, to make this an informed journey. So, the becoming the CEO of your care team has really empowered me to feel like I know what to go to each one of the people that are on my care team, with what information, and I feel more informed now, not only about RA, but about my own body than I’ve ever felt. Yeah. Yeah. So, thank you.
Cheryl:
Wow, that’s incredible. You know, I will say that, when I first posted it as executive functioning skills, or being the CEO of your care team, I was worried that that would feel like a burden to people. Like, you know what, I’m so tired and I’m feeling like I’m in a lot of pain, I don’t really want to be the CEO of the care team. But the problem is long-term, like we’ve talked on the group, you know, you are the one that’s gonna be in charge, kind of coordinating everything, or someone else on your team is, but you’re the one experiencing this. And so, yeah, I’m really, really glad to hear that was, in part because I was a little worried at first that people — it’s almost like a harsh truth. I want to be like, here, let me tell you like the magic person, you know?
Heather:
Well, and maybe it is going to be difficult for some folks, because they’re not ready for it. I was primed; I was just ready for that. And I wanted to feel that. And I know that if I would have been, if I would have gotten that three months earlier, I think I would have probably felt like, “Oh, this is too much,” but at least I’d have access to it to get it later. So, for those who may be in the group, that it’s like, oh, my gosh, I have to track what? I have to do what? You know, maybe it seems like a lot now. But when you have a little bit more energy, it’s been — it’s been so valuable for me. Yeah.
Cheryl:
Oh, that’s so good to hear. Thank you so much. What about you, Erin? What have been some of the things that you’ve taken from the group?
Erin:
I think the biggest thing, the biggest two things that I’ve taken from the group are how impactful the sense of community is on my day-to-day life. And I noticed a big difference between if there’s a week where I’m unable to join the meeting, although, you know, having the pre-recorded to be able to watch later is so helpful, because then you do stay connected to the rest of the group, especially the kind of community circle that we have at the end of each lesson. It’s just, being able to show up and have that opportunity to like, Heather was saying, sometimes people answer your questions before you even — you know, I noticed that a few times that I’ve raised my hand to ask something in the meeting and put it back down because the questions already been answered, which is great.
The other thing which really changed for me, or I guess I’ve become even more confident in it since joining the group, is that sense of self-empowerment in being able to like, you know, do something for yourself that makes such a difference in your day-to-day life, and to have that validation of knowing that what I’m experiencing is normal in this bubble. And it’s really hard when you don’t have anyone in your day-to-day life who can really relate to exactly going through because then you’re more likely to question what you’re feeling or the things that you want to talk about. And I think so many people with chronic illnesses are challenged with ableist views with, you know, “Don’t talk about it, just focus on what you can, focus on those things.” And I’m not saying that positive thinking is a bad thing. It’s certainly not, but there’s a time and a place. And when you have a disease that impacts every moment of your day, and you have to plan ahead more than I ever thought I would to be able to go out and do something or just even for my future what I want to be able to do, it makes such an impact to have this group in my life to kind of say like, “No, like, go for the things that you want, you deserve them. And it’s okay if you have to do them differently than you originally thought or differently than a lot of other people in your life have to do.”
Cheryl:
Yeah, that, I would say, is the most surprising, has been the most surprising part for me, has been how often ableism has come up either explicitly or implicitly. We realize that the shame that we feel, you know, and one of the weeks we talked about how our disease affects our work life, and how it can feel like there’s a sense of shame or reluctance to ask for a work accommodation, and realizing, why is that? You know, if it’s accommodation just brings me to the same playing field as everyone else, why should I feel ashamed of that? But yeah, so then when we questioned that we realize, oh, it’s because we’ve been taught that, you know, having a chronic illness means that you’re weak or that you’re, you know, that you should just try harder, you know. And that has, it’s been empowering for me leading the group just to see people support each other and seeing how they are saying, no, ask for that accommodation, you know, you deserve it.
Heather:
Can I just say, I mean, I hate to interrupt, but I didn’t even know that accommodations was a thing? Like, I knew accommodations were a thing in meetings, because I run meetings, and if someone needs, if they need something for their sight, or hearing, or whatever, I completely accommodate, but I never thought about it in my job. And it had — when I first learned about that — it happened at such a critical time, because I was able to have those conversations with my boss of, you know, I don’t know where this is going to go, I don’t know what my capacity is going to be like, but right now, I’m at like, a quarter of the capacity that I was when you hired me. So, what can we do in this situation? Or, you know, I’m okay, if you need to let me go, like, I totally get it. And, and so they worked with me on that. And my boss did, she’s fantastic. And of course, and she’s been so graceful through that process, but I don’t know that I could have truly known how to do that or truly believed that it was possible without knowing that and learning that from this group. So, yeah.
Cheryl:
You know, the standard of care should be that all patients should be educated in all this stuff, you know, just as part of, you know, you get diagnosed and that you could obviously, make appointments with social workers, occupational therapists. But for some reason, that’s just not how the systems are right now. So, you know, that’s why I made Rheum to THRIVE to help plug in some of those gaps, you know, because, like, yeah, you could, you know, you’ve had this for 10 years, and you didn’t even know. And you’re very highly educated and like, very already, like what they would call like, you know, a good self-manager. Like, you’re being proactive, like you’re, you know, you’re reading stuff, you’re engaged in your health, and you didn’t know that this was possible. And it’s the same. I didn’t know a lot about managing my disease until I got a Master’s in Occupational Therapy. And I was like, wait, this information is all out there. Like, why aren’t patients getting the manual, or the handbook, you know, the roadmap? So, yeah, oh, I’m just so happy. This is making my day.
The themes of the months, you know, like Heather was alluding to, like, THRIVE is an acronym, I’m kind of obsessed with acronyms and you can tell too. But T-H, is the ‘Tools for pain and fatigue’, and then the ‘Healthy habits’ or ‘Helpful habits’. So, ‘Tools for pain and fatigue’ is like direct things you can do when you’re feeling pain, or fatigue, and prevention, you know. And the prevention is like the not sexy part. But it’s like if we can, you know, prevent — ounce of prevention is worth a pound of cure — and then the habits is just like making sense of all the different, you know, lifestyle things you can do. Nutrition, exercise, you know. And then R is ‘Relationships’, like how our disease can affect our relationships and social life. And we talked a lot in that section about how to explain to friends and family that you don’t look sick. And then the I is ‘Inner world’ with mental health and stress management, and V is ‘Valued activities’. And then E is ‘Executive functions’ of being the CEO. But so, I was gonna ask, were there any highlights in terms of like, ‘Aha!’ moments you’ve had throughout Rheum to THRIVE? I mean, you already mentioned some, but were there just any other things that took you by surprise that you learned?
Erin:
I think, for me, when we were talking about the ACT, the Acceptance and Commitment Therapy, I mean, I’m a believer in mental health therapy and it’s made such a positive impact on my life, even pre-diagnosis. But just really being able to talk about that like in the community group afterwards, it was a different understanding of it than I previously had. And to be able to apply it like, oh, my God, why didn’t I think of that? You know, what I need to be able to apply that to my situation, my disease, and what I’m going through, I found the Acceptance and Commitment Therapy to be like, even more helpful than it was in my previous not disease-riddled life. And like, even with all of these lessons, even if it’s something that I was previously tuned into, having it brought up again, you know, a year into your journey?
Like, that makes a really big impact as well. Because there, in the beginning, at least for myself, I was taking in so much information and I just, honest to God, I felt like I’d been like dropped in the middle of a really dense jungle and like, “Here you go! Survive,” and then, you know, joining this group, it’s kind of like you look around you’re like, oh, there’s like 15 other people in the forest and then you who’s like, really positive and happy and, you know, you have a very bubbly personality. And I appreciate that because that’s what you need when you’re like in the jungle. At least now I’m in the jungle with a whole bunch of other people, so it doesn’t feel quite so terrifying. The jungle is there, but at least I have this like, crew of people beside me now.
Cheryl:
Oh, totally. No, that totally resonates. And yeah, the acceptance piece, it’s been interesting because it is about saying, like, this is what the present moment is right now. And I used to be so stubborn. I was like, well, I don’t want to accept what the present moment is, right. Like, I want to make the program that’s like, how to never feel bad again, like how to make your pain go away. Like, if that existed, I would make that, you know what I mean?
Like, I’ve always said, like, someone actually asked me who’d done my previous program before Rheum to THRIVE — it kind of evolved into Rheum to THRIVE — she said, “Well, are you gonna be sad if there’s like a cure for arthritis?” Like, no. Because, first of all, there’s always gonna be — I mean, sadly enough, there’s always gonna be some suffering in life. And I think that actually being able to confront that head on and saying, “Okay, can I learn to function and have a good life even with some degree of suffering?” is actually more empowering than saying, “Oh, I have to control everything and make it so I never, I always feel great. And I never feel bad,” you know? Or badly. It’s hard to make people excited about that idea, I think, sometimes, because I think, well, doesn’t everyone just want the person who can make their pain go away, you know.
Erin:
But I mean, we’ve talked about in the group before too, how the control idea is just an illusion. And it’s really the same for anyone. And I mean, I don’t mean to be a bummer in saying this, but like, the floor can drop out from anybody at any time. And an autoimmune disease, rheumatic disease teaches us this, like, boot camp style really quickly. And I just think that it kind of makes it okay, to realize, wow, I don’t have a lot of control. And in that there’s like a weird gift. Because you kind of see differently than you would have had you not had this particular experience.
Cheryl:
I mean, in a way, the fact that I could have lived the first like 20 years of my life under this illusion that I was really in control, it’s like a very privileged view, right? It’s like, well, and I always say, I’ve had a very privileged upbringing, you know, I had a great family, you know, I didn’t want for anything wise, or, you know, like, base, you know, food or anything, shelter, all my basic needs, and my love needs were met. And so, you know, but yeah, I was able to have this illusion, “Well, I’m an athlete. Well, I don’t drink I don’t do drugs, like I do everything right. And so, I’m healthy. Like, that’s why I’m healthy.” Instead of being like, “Oh, I’m just, I’m doing those things. And that’s helpful,” right? It’s like, okay, because I’m so athletic or I’m so — I have a habit of exercising, I might be at less risk of like cardiovascular disease or osteoporosis, you know, long-term, but there’s no guarantees, you know? And like, yeah, like Audrey, The Amplified OT says, “Suffering will always be there. It’s just a condition of humanity,” you know. And so, we make our baseline assumption — like, our lives are going to have challenges. They’re going to look different for everyone. Every single person with rheumatoid arthritis or ankylosing spondylitis has a different challenge, even if we have the same disease. But can we persevere, and be resilient, and learn the difference between what we can control and what we can’t? And I think that’s what, Heather, you put a really beautiful comment on the Facebook group, where it was something like after the last meeting, like you’ve learned how to — what did you say? [Laughs]
Heather:
I don’t know! I think it was something about the kind of planning. So, it’s interesting because your posts said something about, you know, plans kind of fall through and that’s just a part of all of it. And I said, actually, I love having a plan, because it helps me feel like I’m in control. But then when that dumps, and it’s just not possible anymore, I learned how being a part of your group has helped me learn how to deal with that loss of control. And for me, that was a big ‘Aha!’, that I had to learn that for myself. And then it got much easier when I felt like I was disappointing everybody in my life, right. My work, my friends, my husband, and, you know, “I can’t go to that,” or, “I can’t do that right now.” Or I can’t even — I’m in the bathroom, like, whatever it is, like I cannot. And so, for me, being a part of this group has enabled me to, to really understand that I can try to be as in control as I want. And if that makes me feel good right now, okay. And also, when it happens, the fall isn’t so hard. It’s like, “Well, I should’ve see that coming. But isn’t that interesting?”
Cheryl:
Oh, right, right.
Heather:
But there are there are pieces that we can control, and I’ll go back to the whole CEO piece. I mean, I’ve kind of — I can’t wait, I want to talk about this at some point, probably in our group, about how I’ve been using, creating new tracking systems that are beyond any of the stuff that you gave me, but inspired by what you gave me to like, “Hey, here’s a new tool. Do you want to try it out?” So yeah, so that’s, that was my big ‘Aha!’ is that now, I feel like okay, I’m not in control of what my body’s going to do today. But guess what? I do have some tools and mechanisms in place that I can have control over and use over and over again. Like, this is repeatable. And then eventually, I’ll have more answers. Yeah.
Cheryl:
I love that. And I think that like, I’ve always wanted to be a specialist. But I’m not, I’m a generalist. Like, you know, occupational therapy is a perfect example of a specific degree. That is, in the case of Rheum to THRIVE, in the course of six months, you get what is, in my opinion, professionally and personally, the most important tidbits of information in the main areas that affect your life. Like, you get information about sleep, information about nutrition, information about physical activity, information about stress management, relationships, work, CEO skills. But then you can choose to then do a much deeper dive like, Heather, you were saying. It’s almost like the first analogy I used for my programs was like, a tour guide. And I also use it, I also think of it as like a job orientation.
Like, I used to be the orientation leader at the University of Washington Medical Centre. And I was like, you know, there’s when you get oriented to a new job at a large facility like that, it’s like, there’s a part of it that’s encouragement and welcoming, and like, rah, rah, welcome to our system. And then there’s also like, here’s the compliance training, and here’s like the boring stuff, you know. With Rheum to THRIVE, it’s meant to give you that orientation to the disease. And even if, you know, people have been asking me the last couple weeks when I’ve been talking more about it, they’re like, “Well, what if I’ve had it, rheumatoid arthritis, for a while?” you know, and it’s not even really about how long you’ve had it, it’s about how confident are you in coping with it right now. Would you agree?
Heather:
Yeah. Yeah. I just put in that — I just put in the chat that Rheum to THRIVE is an onboarding experience for those with RA. It doesn’t matter when you were diagnosed with it. It’s like, it’s about meeting, being a part of this and getting the information that you need. Yeah.
Cheryl:
Yeah. Were you gonna say something else, Erin?
Erin:
While you were talking about your onboarding, like, what a perfect person you are for that specific job to kind of welcome people in. And I think one of the things I’m really happy about the group is how inclusive it is. I really feel like, you know, we all kind of have different situations in our lives, like, whether it’s work or family, or even like the way we came upon our diseases and how we’re managing, you know. I’ve gotten close with quite a few folks in the group and learned a little bit more about them, even outside of the group. And it’s just such a great — I really feel like the world could learn a thing or two from the kind of mindset that we have in the group.
And I think like, an amazing thing happens when all of a sudden, this really terrible kind of experience — because let’s be honest, it’s not anything anyone would wish to come across — but you’re going through this experience, and you’re empowered because you have these other folks beside you that are also in the same crappy experience that you are, and everybody’s handling it differently, but kind of those like social norms are pushed to the side. And you’re like, worried about how we come across, or, I mean, everyone’s really kind. You don’t mean that, but you know what I mean? Like, worry about the small talk, let’s just get into it. And it’s amazing how, I can’t believe six months went past. It’s just flown by for me, and I’m so glad that, you know, I’m able to stay connected to the group because it’s such an important element. Because otherwise, I feel like I’d really be like, standing there with my arms empty, like, “Okay, what now?” you know what I mean?
Cheryl:
It really has floored me — it is so quick that people who have something in common like even if nothing else in our lives are common. There’s different ages, you know, someone who just joined, they were like, “Well, even though I just turned 40. But, you know, I’m kind of like straddling like the kind of younger generations and the older,” they’re like, “You know, I’m in my 60s, will I fit in?” And like, you know, there’s a huge range of ages, you know, some people have kids, some don’t, you know, there’s people of different you know, LGBTQ or, you know, there’s just different parts of the world, actually.
And then the new people who are coming in in October, there’s two from Italy and one from India, actually there might be two from India now, you know, so it’s really — like, in the past there’s been one from Japan, you know, so I try to be like inclusive of all cultures. Is there anything I didn’t ask yet that you wanted to say about the program or about just anything general? You know, this is like your time to have a microphone to give anyone listening advice on just arthritis life, like your life with arthritis? You both are very wise, I will say that.
Heather:
Erin’s my hero. Every time she likes something, I post it. Like, she gets it. Oh, yeah! My people. And she’ll post something and I go to her. You know how, I don’t know about the rest of you, but I get on social media, I see what falls in front of me, maybe there’s a couple of things, maybe I’ll go search for it. But I’m always looking for the people in the group. And each of you, your posts, and what are you doing, and what’s there, and it just, it always hits home for me. Because one of the things I think we all do is we say, “This is what RA looks like.” And some days, it’s awesome. I mean, I am a warrior some days, and some days, I’m on the floor. So, and I don’t have a problem showing those. And what I’ve learned by the modelling from everyone else in this group is that we can do it without emotionally vomiting all over everyone. We can do it by saying, you know, here’s what it is. And it’s also this, and it’s also this.
Cheryl:
Oh, that’s so, that’s so true. We have a question from Sassy Mama. Love the name. Oh, I just froze myself. How do you begin the conversation with your boss that you might need help or accommodations?
Erin:
That’s not something I had to deal with in my empowered state of disease. I am the example of what not to do. Back when this — honestly, when this flared up, I had so much shame and guilt about not being able to do things that I used to do. And now that’s like, completely flipped around. And, you know, the best advice I could give is, trust what your body is telling you. And respect the fact that you have different accessibility needs. And they’re not going to match what everyone else with arthritis, or ankylosing spondylitis, whatever it is. And I just think it’s a, it’s a big lesson in reaching out to others. And it’s wonderful that you’re asking that question of what you would do, because that’s exactly what has helped me to feel empowered is to, you know, follow people on Instagram who talk about disease and accessibility and ableism. And the more of that you have under your belt, the more you’re going to stand in your own power when you have to stand and talk to someone who perhaps can’t relate exactly to what you’re going through. And to be able to communicate in a way where you essentially just say, “I want to do the best job that I possibly can here. It matters to me. And these are the things that I need to be able to continue to contribute in the same, at the same level that I am now.”
Heather:
Click, I think you just captured it perfectly. That’s exactly what you have to say. And sometimes you — it takes a while to get there, right. It depends on the relationship with your boss, it depends on how much they know. And what you just said, those that last few sentences, were perfect. But sometimes you can’t start there. And I look to you as having a lot of great language around it. We have a couple of people that really stand out to me in our group that they speak up and they’ll say things, and I’m writing it down. Like, I gotta figure out what that word means; I need to understand that context. And I think what you just said was beautiful.
For me, it was a lot of shame and a lot of faking it till I make it, you know. Like, maybe this will go away, maybe I can power through this. And then finally, after a couple of instances where I couldn’t deliver, I just said, “I’m sorry, I don’t think I can do this.” And she’s the one that said, let’s talk about it. And I just was open. I mean, I wasn’t, you know, I just said, I don’t want to disappoint. And this, like you said, “This job means a lot to me, and I want to do my best. So, is there anything — you know, can I work less hours? You know, what, what could this look like, and are you willing to work with me?” Absolutely. I’m not saying that works every single time. But you know, like you said, listen to your body and your gut. And it will tell you a lot of times what you need to be — what you need to — how you need to advocate for yourself.
Cheryl:
A common accommodation for rheumatoid arthritis would be giving someone an ergonomic work set up at their desk, allowing them to come in late if they have morning stiffness, giving them a break in the afternoon or multiple breaks, allowing them to work from home for fatigue reasons. And, you know, there’s so many different accommodations and what it’s meant to do is it’s meant to level the playing field. Because you have a disability or you have a health condition, right. And that makes it so that you are having to already scale lots of barriers just to do the normal things everyone else can do. So, it’s not like you’re asking for special treatment because you’re not at that. You need an accommodation, you know?
It’s like somebody who’s blind, you know, asking for something like a Braille book. It’s not trying to get special treatment. They’re just trying to get access to the same things everyone else has. So, that’s how I see it. And that makes me not feel guilty asking for accommodations like, but you’re asking, you know, you’re 28. And you’re saying like, how do I feel competent in how you deal with your boss, assuming you’re young and fit. And the thing is, at some point, most people have to confront the fact that somebody who looks well or looks not sick can still be sick.
The other thing is — we’ve talked about this in relationships, the relationship section — is that sometimes people take things better when it comes from someone else. This really applies to romantic partners. So, that’s why I also say, you know, if you can send them something from like the Arthritis Foundation, or from like a neutral third party, send that to your boss. Like, hey, this Arthritis Foundation says, like, you know, these are — first of all, explain what you have, but then say, here’s the top 10 accommodations that they say. Then it’s not just you. Like, they realize, oh, this is like, quote-unquote ‘a thing’. Does that make sense?
Heather:
Yeah.
Cheryl:
And yeah, and Medicaid visuals. Yeah. And you had to leave your career because there was no reasonable accommodation. I’m so, I’m sorry. That can be really hard. And I, I have to say that I was young enough when I was diagnosed, I thought about that pretty seriously. But when I went into occupational therapy, and I was interested in physical therapy, too, and I was like, you know, OT, is a more flexible career with regards to, you know, having a non-physically demanding job. And, you know, unfortunately, if you get diagnosed after you’ve already invested in a career that’s physically demanding, that can be a really, really tricky, tricky place to be. So, we just have to say what’s possible in the present moment, like recenter ourselves, and get support. One of the things I was going to ask you to, and I can’t remember, honestly, if you guys have done this, but had either of you guys, Heather and Erin, done Facebook groups before or like, you know, because I saw a lot of people come to my group and say, I joined these Facebook quote-unquote ‘support groups’. And I got immediately, like —
Erin:
One of the first things I did when I received my diagnosis was to join some Facebook groups. And it was like pulling teeth to get me to join even that, and I was like, fine, I’ll observe. And then I found myself wanting to give advice where I could, because that’s kind of more my comfort zone. And another — from this group is being able to be like, “Oh, wow, I’m struggling too, I need advice as well.” And I did not have that experience in the Facebook groups. I think it’s wonderful that people want to gather, but you do have to think about — and it took me a while to realize that the people that are often spending a lot of time in the support groups are there because they are struggling.
So, you have to take, when you ask a question, with a big grain of salt; a big giant tablespoon of salt. Because you will struggle with getting a whole bunch of often negative feedback. And it’s just because people who are having a good time, people who are in remission, they’re not going to sit on the computer all the time. And I just think that it can be a negative experience, because there are so many people in that group that you don’t really get to know anyone. And I think that’s what I benefited from most in this smaller group setting is like, I know these people. They’re not just gonna fling their own negative day at me and give me rotten advice. Like, if they’re having a bad day, they probably won’t contribute. And that’s okay, too.
Cheryl:
Right. Right. Yeah, I think my main issue with some of the Facebook groups and I don’t, I don’t envy anyone who volunteers to moderate a Facebook group. I think that it’s very difficult to moderate a Facebook group. So, it can be so easy for misinformation to slip through, or people to kind of shut down others when, you know, someone might say, “Oh, I’m so excited. I had my first — I finally got my diagnosis. I’ve been floundering in the medical system and I got my diagnosis. I’m going to start methotrexate,” and then you get 20 messages like, “Oh, don’t take it. It’s poison, or it’s chemo,” and it’s like, oh, no, you know, don’t bring this person down. Also, like don’t make them potentially miss out on an effective medication. But hi, Amy, thank you for impromptu-ly coming on this. We already had Heather and Erin share just a little bit about what they’ve gotten out of the Rheum to THRIVE group do you want to share as well?
Amy:
Sure. I mean, as somebody who was diagnosed during the pandemic — sorry, my cats are everywhere — it was like just a very, very isolating experience. You know, I don’t know anyone in in my real life, my offline life, with RA. So, you know, in the midst of such like an isolating experience that we were all kind of sharing in and then getting this kind of out of the blue mystery diagnosis of RA. It was just, you know, it was such a godsend to just meet with other people who, you know, newly diagnosed and, you know, veterans. So, it was, it was just incredibly helpful. Because the only other person in my life in Miami who I had to talk about RA was my rheumatologist. So, you know, that’s like 10 minutes every, you know, three weeks or whatever. So.
Cheryl:
I’m so glad. Yeah, and I just, I’m like, my heart goes out to everyone diagnosed during the pandemic, because, you know, it’s hard enough to just get this disease and have to wrap your mind around it. But you also have to wrap your mind around it during a worldwide pandemic with so much uncertainty, you know. And I think that’s been one of the biggest, for me, stressors in living with rheumatoid arthritis, has been uncertainty. Is it going to get better? Is it going to get worse? Or should I take this medicine, that medicine? So, I think just, you feel so alone in coping with uncertainty on your own, and you feel like maybe there’s some obvious answer that someone else has, but then when you go to the group, you realize, oh, we’re all coping with uncertainty. Like, I’m not just doing something wrong. It’s just reality. Weirdly enough, it can be, um, it can be really, really validating. So, is there anything else? Anything anyone wanted to say before we wrap it up?
Heather:
I can’t wait for the next meeting.
Cheryl:
Yes, yes. Yes. It’s this Saturday. Yeah. And so, one of the FAQs I’ve gotten some DMs about is right now that people ask like, what days and times are the meetings. And so, right now, the times that have worked really well for people are either like, Saturday around noon Eastern, 9:30am Pacific, or Thursday afternoon/evening, depending on what time zone you’re in. But I always do at the beginning send out a Doodle poll. And I’ll be doing that where we kind of make sure those are still the right times for people. Thank you, I’m grateful for all you for, you know, for doing this, for coming in and taking, I guess, a leap of faith on me. Because this is not a, you know, a widely done thing, like what I’m doing. There are in-person, historically they call it ‘chronic illness self-management group’, so — let me correct myself. There’s a wealth of evidence that chronic illness self-management groups work, and they help people improve their self-efficacy. But there hasn’t been a lot, there haven’t been a lot of people doing it online. And there haven’t been a lot of people specifically doing it for inflammatory arthritis. There’s a lot of groups, best practices for groups for like diabetes and for other conditions.
So, I appreciate that you all invested in Rheum to THRIVE. And, you know, I always feel very optimistic that would be really great, but it was even — that it’s been even better than I hoped. And I attribute that to the quality of the members. That’s why I’m like, tell me how you found me so I can continue recruiting such wonderful people somehow. And thank you, Don, I’m so glad that you’ve had a good experience too. It really is. It’s really the, they call it I guess in psychology, like the ‘group process’, like that therapeutic value of just being with others. Again, even virtually. It’s really, it’s really powerful. So, thank you again. I think I’m really bad at ending conversations. And the person on the phone is like, “Bye! I love you more!”, “No, I love you more!” [Laughs]
Erin:
I want to say thank you so much for creating this program, because you’re right. There isn’t really a lot like it out there. And it’s made such a positive impact. And you are a great leader in these groups. And I know we all, you know, despite the fact that we all happen to get along as well, which is like really exciting, it’s still great to have you leading this program, and the fact makes it even more accessible. So, it’s great. Thanks, Cheryl.
Cheryl:
Oh, thank you. Oh, my gosh. But thank you all so much again. Bye!
[Ending music]
Thank you so much for listening to today’s episode. This episode is brought to you by Rheum to THRIVE, a membership and support community where you’ll learn how to develop your own THRIVE toolbox so you can live a full life despite your rheumatic disease or chronic illness. Learn more in the show notes, or by going to www.myarthritislife.net. You can also connect with me on my social media accounts on Instagram, Facebook, Twitter, and even TikTok. Check out the links in the show notes.
