Summary:
On Episode 59 of the Arthritis Life Podcast, Erika Bustos and Rachel Albo share how their individual journeys with managing rheumatoid arthritis and holistic health coaching led them to connect on social media. They then transformed their virtual relationship to a “real life” friendship and business partnership in their podcast “Autoimmune & You.” Cheryl, Erika and Rachel reflect on the importance of friendships between people who truly understand what it’s like to live with chronic illness, and they give tips for navigating social media.
Episode at a glance:
- Rachel and Erika’s diagnosis stories for rheumatoid arthritis in their 20s
- Erika pivots from studying marriage and family therapy to becoming a holistic health coach after her diagnosis of rheumatoid arthritis, and Rachel pivots from traditional occupational therapy to health and wellness coaching as well
- Erika and Rachel both delve into holistic lifestyle changes that help them manage rheumatoid arthritis but also caution others not to fall into some of the common traps in holistic communities, for example “one size fits all” approaches
- How Rachel and Erika found each other on social media and grew from acquaintances to true friends before ever even meeting in person
- How Rachel & Erika combined their personal and professional passions (as autoimmune coaches) into their joint podcast, “Autoimmune & You”
- Rachel & Erika briefly discuss their experiences contacting Covid-19 and how that’s affected their rheumatoid arthritis
- Rachel, Erika and Cheryl’s tips for navigating social media interactions and friendships – how to get what you need out of it without experiencing the downsides.
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:
Rachel Albo & Erika Bustos: Two young women with rheumatoid arthritis, coming together to share a powerful message to the autoimmune community. Join us for raw conversations about our personal experience of roadblocks and setbacks while on a holistic journey, as well as triumphs and wisdom gained over the years. It’s our mission to empower you to become an advocate for your health and reclaim your life.
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:
- Erica and Rachel’s pages:
- Autoimmune & You Podcast: @autoimmuneandyou
- Rachel’s Instagram: @rachelalbo –
- Rachel’s Website: www.rachealbo.com
- Erika’s Instagram: @healing_arthritis_holistically
- Cheryl’s Arthritis Life Pages:
- Instagram @arthritis_life_cheryl
- TikTok @arthritislife
- Arthritis Life Facebook Page
- Cheryl on Twitter: @realcc
- Arthritis Life Podcast Facebook Group
Arthritis Life Program Links
Rheum to THRIVE, 6-month education and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. The next group starts in Spring 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.
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:
Hey, I am so excited to have two guests today on the Arthritis Life Podcast! I have Erika and Rachel, welcome!
Erika & Rachel:
Hi!
Erika:
Thank you for having us.
Cheryl:
This is so fun. I would love to just for you each to give a brief introduction, you know, of yourself, maybe where you live, and what your relationship to arthritis is.
Erika:
Okay. You want to go Rachel? She’s pointing at me. Okay, so this is Erica here. We’re from the podcast Autoimmune And You. But I’m also known as Healing Arthritis Holistically on Instagram. So, I live in California. I’m 34. But I was diagnosed with rheumatoid arthritis at 28, so it’s been six years of living with this condition. And yeah, its had its ups and downs. But I feel like mostly there’s been a lot of positive that has come out of this, especially like me being able to connect with Rachel and you and all these other figures in this autoimmune community that are trying to do something positive and just bring their own special light to this community. Like when I look at Cheryl, like, you have all these tricks and tips to, you know, help people have a better, you know, physically better. Oh, I can’t think of the word right now. Okay, we’re gonna have to edit that out. Rachel!
Cheryl:
That’s okay. Quality of life, maybe.
Erika:
This is us. This is us on the podcast. Yeah, anyways, you have all these tips and tricks to help people have a better quality of life with rheumatoid arthritis and to make things easier for them. And then I look at Rachel, she’s just like this energetic ball of energy that people love to see. And then I really like to write and share inspirational things on Instagram. So, it’s nice. It’s nice to connect with people that all bring something special and different to the autoimmune community.
Cheryl:
That’s beautifully said. Okay, Rachel, what about you?
Rachel:
So, my name is Rachel Albo. My handle on Instagram is literally just @RachelAlbo. I don’t have anything fancy like these two. I am 28-years-old. I currently live in Portland, Oregon. However, I spent four years in LA and before that I am originally from Michigan. And I was diagnosed with rheumatoid arthritis five years ago. So, I was 23-years-old, almost exactly five years ago, like in a few days. And I really dove into holistic healing pretty quickly. But I did it from a standpoint of literally knowing absolutely nothing, you know, coming off the standard American diet and like had always had issues with my joints and with my gut, and just no one thought anything of it. And finally, it like progresses and I was left like, I was on bed rest for two weeks, I was in physical therapy for months, like my entire life was just flipped upside down. And fast forward to now where I have been coaching clients with autoimmune diseases for years now, and we have our podcast and like, just the way things are blossoming is just so beautiful.
And it’s insane to think that this all came out of being diagnosed with something that is like one of the worst things that you can live with that really kind of sucks your soul at times, and being able to find purpose out of the pain and being able to show other people how to do that for themselves is just so fulfilling and exciting and humbling, and I’m just so grateful for the way that my journey has progressed.
And that’s not to say that I’m healed or everything is easy, because that’s so not the case. I mean, I had COVID over Christmas and I’m still dealing with a really bad flare up post-COVID, and I’ve heard that that’s a very common. But I’m really thankful for our entire autoimmune community especially over on social media like for meeting people like you, Cheryl, and meeting Erica and meeting all these other people and being able to connect with even like people that aren’t like, you know, quote-unquote ‘figures’ in the community, but just people who are following along being like, “Oh, my gosh, I had a flare up after COVID”, “Oh, my gosh, I’m so sorry, you’re dealing with that. I know exactly how that feels.”
And just having that validation, but also the like genuine support because when I was first diagnosed — and I know probably all of us when we’re first diagnosed — we go searching the hashtags and the groups and all this stuff. And I originally added myself to all the things that I could find, and followed all the people that I could find. And I realized that I was actually feeling worse mentally because it’s a lot of just like perpetuating that mindset of dis-ease.
Like, really, “You’re going to be on medications forever. If you don’t take your medications, you’re going to be disabled, you’re not going to be able to walk,” you know, “This sucks. Every single day is horrible.” And it’s just like, you know, even if you are on medications for the rest of your life, even if you are unable to walk, theres still ways to find a better quality of life and like really truly enjoy life, and be grateful for where you’re at. And I know, Cheryl, on your podcast, you talk a lot about meeting yourself where you’re at. And I think that that’s so important, and that’s a huge message that Erika and I have too; it’s just that mindfulness piece and meeting yourself where you’re at, and how do you get through from there?
Cheryl:
I love that. And one of the fun factoids about you that I connected to is that you’re also an occupational therapist.
Rachel:
Yeah, I was gonna say that, too. I was like, oh, my gosh. Honestly, I feel like I — I mean, I still work as an OT, I do consulting work through like this app for women. But like, sometimes I kind of forget just how much I use my OT background as a wellness coach. And then yeah, like, every time I go back to my memory, I’m like, oh, yeah. Like, it’s funny, because as an OT, we have all these skills. And it’s like, you know, I know you use the word ‘toolbox’ a lot. And it makes me laugh, because they say toolbox all the time in OT, like in school and stuff.
Cheryl:
So true.
Rachel:
Yeah, and I just think it’s funny because to me, this stuff is second nature. And I have to kind of pull myself back and be like, okay, a lot of this is actually the training that I’ve had through schooling, through working as an OT for six plus years. And the fact that I use that every single day with clients, but I have to remind myself, like, I need to explain the way that I’m thinking and how I can help people. And sometimes, that’s one of the most humbling parts of working with clients, is being reminded of, oh, I was there before. Like, even pre going to school, like way before my diagnosis, like I thought in a very different way. And I have to kind of pull myself back, which is actually really nice. I am a huge advocate for always, no matter what situation in life, putting yourself in the other person’s shoes, being like, how are they thinking, how are they perceiving this? How are they acting? And how are they looking to change that?
Cheryl:
Yeah, no, I love it. Yeah, it’s definitely a really specific lens that you end up looking through, you know, as an occupational therapist, and do these kind of activity analyses really quickly in your brain that actually take a long time for people who haven’t done it before. So yeah, it’s just really, it’s really amazing to connect.
And I mean, there’s so many directions we could go with this conversation, right? I mean, I was thinking, oh, we should talk about — so, as you were talking about both talking about social media and like the good, the bad, and the ugly. But that’s totally a tangent, we could go on.
But I am really curious, because you both had — tell me if this is right — you’d both kind of built your own separate coaching businesses, and which – that and of itself is really interesting, like being a chronic illness warrior or having a chronic illness and then starting a business itself is a big endeavor. And then you two found each other and then formed your own podcast and business partnership. I just love — okay, how do you — yeah, it’s like 20 questions in one.
Erika:
Okay. So, since Rachael kind of gave like a little bit more in-depth background of her journey with rheumatoid arthritis, I guess I can share more in-depth about mine so you have an understanding of how I got to this place as a health coach. But basically, when I was 28, that was the year of my diagnosis, and that’s when I first started my program to be a marriage and family therapist. And so, I had worked really hard to get into this program. It’s super exclusive. Like, I really wanted to help people.
And it’s really funny because before I decided to be a marriage and family therapist, I was actually going to school to be a physician’s assistant. So, I actually shadowed a physician at Children’s Hospital Los Angeles and the hematology oncology department. And that’s when I — I did that for a year. And at that point, I figured, like, you know what, I’m not really interested in doing like the procedural work of like being the physician’s assistant, like I was more interested in the emotional side of what the parents had to deal with, what the children were going through.
And so, I had to talk to someone else and they’re like, honestly, like, you sound like you’d be good for like a therapist. And so, I was like, actually, I never really thought about that. And so, I kind of went down that endeavor. Got my undergrad in psychology, started that program, and I was really stoked on it. And like, I was like, “Okay, this is what I want to do in life,” like, you know, I’m super stoked to do this. And then I got faced with a diagnosis. A lifelong chronic condition where I was like, I don’t know what my life is gonna look like. All of a sudden, like everything becomes uncertain and like this path that you have paved out for you suddenly seems unclear and you’re like, oh, my gosh, like, am I gonna have the mental capacity to be there for my clients the way that they need me when I’m struggling with my own diagnosis?
And so, basically, the first year I went through my first year, did really well. But I was also focusing on holistically trying to manage my disease. So, I didn’t immediately get on medications when I was diagnosed. I started deep diving into like, trying to avoid this, basically, like everyone, right? Because you’re scared, you’re scared of these medicines, and you don’t know what they’re going to do to you. And so, I started immediately, you know, working with a naturopathic doctor, changing my diet, and then eventually fine tuning my diet to one that works for me. And then I discovered all these people that were talking about mindset and how else to deal with chronic illness. And I was super getting into this holistic thinking, right, but I didn’t come from that, like Rachel said. Like, I came from a standard American diet, high stress levels, trauma, anxiety, depression, like all these things. And so, at the end of my first year, I was like, you know what, like, I had to make a decision to be like, is this aligned with this new life that I’m living after my diagnosis? And I was so interested in holistic stuff, and I was sharing my journey on Instagram.
By the way, at the time in 2016 like literally there was no one talking about holistic stuff. I will tell you, no one. And I used to get people reach out to me in the arthritis community at that time reached out to me saying, like, stop sharing about like diet and stuff like that, because this is misleading to other people. And like, we’re on medicines and like, who do you think you are? And I said, you know what? Like, this is my journey. This is my truth. This is what I want to explore. I’m experimenting on myself. And we should all have that ability to share what we think is right in our heart.
And so, so yeah, I kind of worked through that, and then made the decision that I didn’t want to follow through with my marriage and family therapy degree. And I just trusted my intuition that if I kept working on my health, that eventually maybe I could be a coach, someday. I didn’t know the word ‘coach’, I didn’t think about it that way. I just knew that I wanted to help people, because that’s what therapy is about. Helping people. So like, this actually is perfectly aligned with my whole education, my whole experience in life in general.
And so, in 2019, I got my health coaching certification. And that actually happened to be like, one of the worst flares that I was going through. There was a period of time where I got really sick. I got a parasite out of the country, and it triggered my symptoms. Yeah, crazy. But I was doing really well before that, which is why I got the health coach thing.
But anyways, my whole point is that I stuck it through because I was like, you know what, this is the reality of living with a chronic condition. There’s gonna be ups and downs. And like, if I really want to help people and be at the other side of this, like, I have to know that it’s okay that we all go through this, but it’s about helping yourself with a better mindset. And so, here I am today. I, like from the beginning, I was like, I really only want to work with people that have rheumatoid arthritis. When I started coaching, I was like, that’s what I wanted to do. And I was like, I only want to work with people that have autoimmune diseases, specifically inflammatory autoimmune diseases. And so, even like people around me are like, “How are you going to get business? Like, that’s such a limited field and blah, blah.” And I was like, look, I have always lived my life by like, passion, and my heart. And so, I was like, I don’t care if this is not a popular thing now, I’m gonna keep doing it.
And now I look around, like so many people are health coaches on Instagram, everyone’s an autoimmune coach. And I’m like, I’m happy for that. But at the same time, it’s like, you know, I really have put so much work and invested into this community. And it’s like, I am happy to see people doing podcasts and helping other people, because I definitely think this is the mindset shift that this autoimmune community needs like for sure. We need this because back in the day, like Rachel said, when I, in 2016, you know, looking at hashtags #rheumatoidarthritis, it was terrifying. I was like, oh, my God. And so, that’s why I made a — like, I said to myself, I’m going to change the narrative. I’m going to create my own community of people that are kind to people no matter what situation; whether they’re on drugs, you know, medications or they’re not, or they’re using both, because at the end of the day, whether you’re doing it holistically or with medicine, we’re all suffering to some degree. Our life changes to some degree. And like, that’s the essence of it, is that we’re all going through it and we all have to learn to adapt. And it’s challenging for all of us no matter what way that you go. So, yeah.
Cheryl:
Oh, my gosh, so much, so many things I can respond to in that. And one of the things that struck me, because I was diagnosed in 2003, and so it was a blessing and a curse that this was before social media. This is back when I — I’m old enough to where I did get an invite to Facebook when it was, you know, ‘Invite only’. I had to have a college email address like ‘.edu’. But anyway, point being, there wasn’t anywhere to look up, really. I mean, there was old, you know, websites and stuff, like old school, you know, like WebMD. But there wasn’t anywhere to actually talk to another human being.
So, it was a blessing and a curse, because I didn’t see all the horror stories. Like, my doctor was basically like, “This is a serious lifelong condition. However, you’re being diagnosed at the best time in history,” at that point, because of the life changing medications that had been coming out. And so, she’s like, “Your prognosis is better than ever,” and I’m the freak person who like, I literally was just like, “Okay, just give me the medicine.”
Like, I didn’t have any sort of second doubts, because – anyway, everyone who’s listening might have heard my story already, but point being, I had actually been like, so traumatized, by being not believed and accused of being fake, faking my symptoms, that when they, when the medical system finally was like, “You have something. You’re legitimate, here’s some medicine,” I was like, okay, yeah, you’re actually helping me, finally. And then it wasn’t until my first biologic stopped working, that I started realizing that there’s this big gray area, right? There’s not just Western medicine either works or doesn’t, there’s like, you can blend, you can, you know, you can develop whatever toolbox — to use that word again — you know, it could be exercise, diet, lifestyle, and a small amount of medications, or a large amount of medications. And like Erika said, we all just want to be — right, everyone’s suffering, and we want to alleviate the suffering that we can possibly alleviate, and then learn to cope with the suffering that will be the perpetual or unsolvable problems, you know.
Erika:
I think the most important part is like, when you get diagnosed with autoimmune disease, the most important part that we could do for ourselves is take responsibility for ourselves, right. Does that mean we’re going to cure all of our symptoms through our diet, and lifestyle, mindset? No, but you really can drastically improve your quality of life.
And I think the shift that’s happened in the community is that back in the day, people only saw it as, “I can only take medicine, and my doctor knows best, and I don’t know my body,” and all those kinds of things. And now we’re more like, Wait, like, food does trigger my symptoms, stress does trigger my symptoms. Social support is necessary, like community support, all these different things.
And so, we’re much — we’re more in an empowered state than we were when I started my Instagram account. And it is really kind of amazing to see that transformation in front of my eyes. And to know that I was a part of that in the beginning. And it has nothing to do with like, me tooting my own horn. It’s just like me feeling proud that I stuck to my intuition, and I stuck to my curiosity, and my desire to experiment on my body to see what was working for me and to be able to share that with other people that had never been told that in their entire diagnosis, that hey, you can do something about how you’re feeling. Like, stop eating the fast food, stop doing this, stop doing that, and see what it can do for you. But no one had ever heard that before.
Rachel:
Yeah, and not only that, but not only just stopping things, but also picking up things, right. I think that there’s something to be said for the way that there are some people in the autoimmune community, some doctors, dieticians, just random people that are like, “You have to do this. And you can’t do that. And you have to do this. And you can’t do that.” And something that I think all three of us are super passionate about is do what works for you. And that does not look the same for any two people. Like, Erika and I have talked about this on our podcast episodes before. Yeah, I see it a little hands up. [Laughs] We’ve talked about this on our podcast episode before, but like Erika and I both notice huge differences in our symptoms personally, when we eat in a different way than we know feels good to our own bodies. But if I were to eat Erika’s diet, I would flare up so bad; if she were to eat my diet, she would flare up so bad. Like, every single person is so different. And that’s why I think that there’s a lot of really harmful content and programs and stuff like that out there that are supposedly holistic, that — I mean, they are holistic, but it’s not a one-size-fits-all. And I don’t think that those programs have enough leeway for the fact that everyone is so different, and everyone reacts differently. And so, people look at something like that and hold it as like the Holy Grail. And when it doesn’t work, they get super, super depressed and discouraged and probably more flared up. And then they have no idea where to go.
And I think that, Cheryl, like you were saying like finding that middle ground and being able to be there to support people in ways whatever way we can. I mean, we’re all obviously passionate about that, especially on social media, of just being able — and another thing that I really like is that we all have such different ways of sharing on social media. And we help people in such different ways.
Like, I’m literally getting chills right now just like thinking about it. Because like the way that you share, Cheryl, on like your reels and stuff like that is very different than the way that I share on my reels, and my stories, and my feed. And Erika is constantly sharing these like beautiful inspirational quotes, and sharing like very real raw content on her stories. And so, I feel like that is so necessary.
And I am, first of all, so proud of all of us for making these waves in the autoimmune community, because it’s not easy. It’s not easy to share our truth, it’s not easy to share when we’re having really hard days, it’s not easy to, you know, to record episodes when you’re just not feeling your best, but you know, that it’s going to reach thousands of people and like really make someone’s day, and that they’re going to be able to connect and resonate. And that’s why we do what we do every single day.
I just think it’s a really, really cool thing to be able to be part of the shift in the community and also adding to that ripple effect outside of the community, right. Like, there’s plenty of people that follow me that are just like husbands of people that have RA, or they’ll tell me down the line that like their, you know, child — like I’m working with a client right now where the mom reached out to me to work with her 15-year-old child. Like, the fact that we’re able to reach so many different people and guaranteed, everyone out there knows at least one person with an autoimmune disease.
And although we talked a lot about like each of us has RA, there’s obviously so many other similarities between RA and other inflammatory autoimmune diseases. And it’s just a really, it’s just such a cool thing.
And that brings me to finding Erika. Like, just so insane how everything lined up and like, God, I literally just like get chills because Erika is literally one of my best friends and feels like a sister. And I mean, we’re literally like, we’re like working on our podcast, recording, editing, like putting promo content out there, like all the things for minimum five to seven hours a week. But then on top of that we’re on the phone multiple times a week, like we just get each other and that is something that’s so beautiful about kind of the autoimmune journey because you really start tuning in to that intuition. You start tuning into your soul, you start really understanding who am I below this diagnosis, because the diagnosis really throws a wrench in life plans, and it really messes you up.
But from there you have a decision. Like Cheryl, you talked about, like, you have a decision to control what you can control and be like, you know what, this factor I cannot change. And I’m just gonna, like, I’m gonna acknowledge it. Yes, it’s there. Like pain, inflammation, you know, swelling, all the things — inflammation and swelling. wow, Rachel. So, I meant to say stiffness, but that’s fine. [Laughs] Hold on. Okay, we’re back.
And so, beyond all of that, who are you? And I have been able to tune in so much of who I am, and be able to share that on social media in a way that feels very authentic to me. And honestly, when I very first started sharing my journey, it was freaking awkward. It was weird. It was awkward. I didn’t think anyone wanted to hear what I had to say. And I just kind of shared anyway. And honestly, when I very first started sharing, I would hear from my friends here and there be like, “Um, I don’t know how to tell you this. But like, you change your voice when you’re on social media.” And I was like, “Oh, I don’t know how to fix that,” like, and then I started realizing, let me just talk to, like literally talk to my phone screen as if I’m talking to my best friend. And that’s what I do now. I just share from this authentic place.
And then come down the line, Erika and I connect, and then we have this Instagram live, and it ran almost over 90 minutes. And we were like, we got to get off otherwise you can’t save it after 90 minutes. And we were like, we got to get off. Like, we got to end this. And we were both like, oh, my God, this could be a podcast. And we were like on the phone for half an hour afterwards being like, wait a second. No, like, really, we should think about doing this. And then everything, again, just kind of aligned perfectly to where we found someone to help us with the podcast that was a friend of a friend that happened to be in the right time — I was in the right place at the right time.
And then he helped us get our podcast up and running. And now we have 39 episodes out. Like, what? It literally blows my mind that in just over a year, like 17,000 plays, 39 episodes like streaming in all these countries; like, it is freaking crazy. And the fact that we’ve gotten to be together, like she came up to Portland, I went down to LA, and the fact that we literally met through Instagram right after I had moved away from LA when she lives in LA. I’m like, what are the chances?
Cheryl:
No, and I — and just for people listening in the future, the distant future, that this is all happening in like 2021, right. 2020, 2021. So, like during this worldwide pandemic, made, established friendship on social media. And just throwing in there that I also have, I have developed some really close friendships over the last year or two through these virtual communities.
And so, I think anytime like I hear — there’s some health providers that still are kind of like, “Oh, social media, like all that is is like a forum for misinformation.” You’re like, no, you know, it’s — I just say it’s like a giant waiting room, right, like we’re all waiting — let’s say we’re at a waiting room waiting to see our doctor and you’re like, you look over and you like, chat with someone you know, in real life. There may be someone really nice, maybe someone really mean like, it’s just a waiting room.
Obviously, you guys happen to both meet each other through, you know, obviously, you resonate with each other’s content and decided to do a live but yeah, I just love your origin story. Have you saved any of your initial like, like, do you have your first message to each other? Like, you should print it and frame it. Oh, my gosh.
Erika:
Yeah. Yeah, we have all that. So like, basically what happened was, I found Rachel on Instagram, like at the beginning of 20 — at the end of 2020? I get all confused with the pandemic. Okay, so I found her. And I started, like, you know, stalking her page, like, what the heck. I’m like, she’s got rheumatoid arthritis. Like, she looks like similar to me. Like, we’re into the same kind of stuff. And she’s literally like, I’m reading her posts. I’m like, wait a second. This sounds like my stuff. I’m like, but I hadn’t really up into that point, honestly, found any other person in the community out of all those years, that was literally coming from the same like place that I was coming from. And so, I’m like, what the heck.
So, I like messaged her. And I was like, hey — like, we hadn’t even talked and I think I had been following her and like, you know, maybe liked her stuff. But like, I hadn’t reached out to her. And I was like, “Would you be interested in doing —” Actually, you’re the first live I did on with another person with autoimmune disease.
Rachel:
Wait, really?
Erika:
Yeah, I think so. And then I started that whole series after you.
Rachel:
Oh, my gosh, I didn’t know that.
Erika:
Yeah. But basically, I was like, hey, like, would you mind talking to me like on a live, whatever? And she was like, yeah, and then yeah, instantly, I knew like, this was something special. This was something different. And I’m like, I could visualize us as a powerhouse in the community. Like, I didn’t even know her. But I was like, it just felt right. I can’t explain it. And then — I know, right, we both get all like, oh — but yeah, I found her. And then here we are now. I’m like, what the heck, it’s over a year of us like podcasting.
And this is the thing that I want everyone to know that if you find someone on Instagram, they don’t just have to be your Instagram buddy. Like, you can bring it to real life. Like, you don’t have to just direct message. Get that person’s phone number, call them. Like right now, Rachel and I are our biggest support systems. Like, of course, I have my husband, but he doesn’t live with this condition, right. And like, he already sees what I have to go through on a day-to-day basis.
So like, for me, it’s nice to have another person and also another female and another health coach and all the other things that I’m basically doing, completely understand what I’m going through. So like, we’ll call each other. If I know she’s flaring, she knows I’m flaring, we’re like, “How are you?” Like, you know, we offer each other support.
You know, if she’s exhausted, I’m like, okay, well, I’ll get these e-mails done or like, whatever. Like, we work together because we understand literally what it feels like to be in this body and to go through what we go through not just physically but emotionally.
Like, that’s the biggest thing with this autoimmune condition is that it’s more than physical, it’s definitely way more mental. And so, to find that companion that could be there through you — be there with you through those difficult moments. And to like just offer that, just the listening and the space to like, really hurt and be in it, you know, because a lot of people that don’t have an autoimmune disease, they always try to fix your problems. “Well, have you iced it? Have you just this, have you done that?” and you know, it’s like, it’s nice, they’re coming from a good spot, but you’re also like rolling your head, like just shut up. This is more than an ice pack. You know, this is a lot; this is like mentally taxing on me.
And so, no, to be real about it. It’s like, we all have been there like, you know, that’s why we see all those memes on Instagram about like, you know, people offering in our heads like stupid advice and like I said, I know people are coming from a good space, they want to help. But this, you know, living with a chronic condition. It’s like, it’s so much more than just getting a heating pad or whatever it is people have to suggest.
But we allow that space for each other and so I’m more thankful out of anything on this journey — like, we talked about it the other day, more than me becoming a health coach and us having the podcast and like all the things that I’ve been able to accomplish over the years, I’m most proud of gaining this connection with someone that’s lifelong. And that I will always know that I can depend on her and she could depend on me. So, yeah.
Rachel:
Full body chills every time. We were talking earlier this morning, we talked like three times today already, but we were talking about the fact that like, it’s so freakin’ cool that we have the opportunity to do interviews like this together, first of many for sure. And we have this vision, we’ve both seen it, like in meditations and just in visualization practices of the having like a TED talk together.
And, you know, we have this retreat coming up for autoimmune — for women with autoimmune diseases, and just things like that that we’re spearheading, and I am so grateful to have Erika by my side. And like, I mean, you really hit the nail on the head. I’m not very good at those sayings, I feel like I always say them wrong. [Laughs]
So, I’m just so grateful to have her in my corner. And even just yesterday, we were both talking about the fact that like, we’ve both been dealing with more chronic inflammation and like Erika’s blood levels have been higher, and my inflammation has visibly been higher, even though my blood levels supposedly are fine ever since COVID. And like, that’s been really brutal. And it’s something that we both get. I mean, unfortunately, but we both are in it and get it and know what the other person is feeling.
And like, you know, we’ll say something and the other person’s like, “Yeah, I know!” like, we’re like getting so hype about it. Because we really, truly get it, and we’re also just there for each other through every single bit of it. And it’s really special that this literally just started from us doing an Instagram live together.
And exactly like Erika said, anyone listening to this, please, if there’s someone that you really connect with on Instagram, or really, you know, anywhere, any social media, like, connect to them further. I have plenty of people that I’ve connected with outside of the autoimmune community too through social media that I now am like real life friends with or have been texting, FaceTiming, Zoom calls, things like that, that I know that I’ll meet in real life eventually. And it’s a really special thing.
I think that too many people have such a negative misconception about social media. And if you really truly curate your social media feed, you will find the right people. And I did like a whole training on this in my client support group about how to really curate that. And obviously, I’m not going to go way into that now.
But make sure that the people that you’re following genuinely give you good feelings and the things, the accounts that you’re following, don’t make you feel any sort of negative way. And as brutal as it sounds. If you’re scrolling your feed, and you see a photo that triggers you in any kind of way, like that immediate reaction is negative in any sort of way, it just doesn’t feel good, you can either unfollow or mute the person. If it’s like a really close friend, you don’t want to make them feel bad, go mute them. They’re not going to show up on your feed anymore. Because we all spend way more time than we like to admit on social media. And you might as well make it a space that is enjoyable.
Like, I literally scroll my social media feed, I’m following a very small amount of people because I curate so, so much what I am seeing. I scroll my feed and I see a bunch of positive quotes. I see really beautiful spiritual pictures. I see Erika’s posts. Like, that’s basically it. Like, I don’t see a whole lot on there besides like my very, very, very close friends because I really care about my mental health. And I know that that has a huge impact on it. Yeah, anyway.
Erika:
I think, no, I think that’s a really good point. And that’s something that we talk a lot about on our podcast is about being very intentional. And like Rachel said, in the beginning of your diagnosis, you do try to find as many people possible living with this condition because you’re trying to figure out what the heck your life is going to look like or predict it. But if you’re following the people that are perpetuating the worst-case scenario in your mind, that’s probably not the healthiest thing for you to follow that.
And like, even when it comes to like memes and stuff with in the chronic illness community, while I find some of those funny, if I’m flaring and not feeling well, that’s not the type of stuff that I want to fill my mind with. Because then I start to think, “Oh, I’m going to be that bed-ridden person, I’m going to have to give up on my dreams and feel like that,” you know, but I think it’s okay to like challenge your thinking. Like, I don’t think we all have to be following exactly the same thing. And like it’s good to expand your mindset and be exposed to other people that maybe aren’t living the reality of what you’re living with condition.
But you still have to be mindful of like, how has this impacted me and how do I feel after I see that post? Is it the rest of the day I’m just dwelling on that and thinking of the worst-case scenario and feeding into the fear, or am I looking at something and going like — like me, I don’t share like always the most optimistic things but I share like, there is optimism in it but it’s also like the cold hard truth of living with this condition.
And like that’s the balance that I really try to delivered to this community, is that I will say the raw truth of how sucky it is to go through it. But I also, because that’s the way I’ve learned to live with this condition, is to find a better way to deliver it to this community so that they can leave going, they can read my post going, “Man, she gets it, she’s going through the same thing. But she has this outlook on it, and it helps her get to that moment so maybe I could do that for myself.” And so, I think that’s what fundamentally all three of us are doing, just in very different ways.
Cheryl:
I love that. Oh, sorry. I was just gonna say, what Rachel said about curating. Yeah, I had no idea what I was doing when I first was on Instagram. Like, I was on Facebook forever before Instagram, and I just reflexively followed each person back because I was like, okay, this is what you do, like, oh, they follow me, I want to be nice.
And then yeah, that was a little bit of a mistake because then I ended up just, yeah. You want to be intentional, like you said, about all of the energy that you’re kind of around. I don’t like to watch scary movies, you know, it makes me too stressed out and my brain doesn’t know the difference between me stressed out from watching a scary movie and like an actual real-life threat. It gets me into fight or flight.
So, you know, and I think just one thing to acknowledge, you know, for me now, having had it for 19 years — I feel like an old, an old soul here — but yeah, is you’ll go through stages where you need different things, you know? There’ll be times when you’re like, gosh, I’m just having like a rough, the roughest day, and I just want to see some like — I want to just complain and like, vent, you know, have a little vent session. Like, I’m part of a couple Facebook groups that have a weekly vent thread, and like, I have one from my Rheum to THRIVE support group and it is nice. We have one time a week where we’re like, this is where we, you know, we’re just gonna vent, just be like, “This sucks,” you know, but having knowing that, okay, I can visit that vent session and then take it, you know, then not be constantly bombarded with it every day. It’s like, a choice, basically.
Erika:
Yeah. I want to just quickly say that, like, I have a client that I just started working with last month, who has been following me, I guess since 2016. I didn’t even know that. She’s never commented on my stuff. She’s never messaged me. Nothing, right. But I guess like, for a couple years, like a year, I think just a year, she stopped following me because she was going through a really rough time and it was really hard for her to see me doing so well. And she’s like, “It had nothing to do with the content that you share,” she’s like, “I love it. You’re inspiring.” She’s like, “But I just mentally couldn’t accept that I was going through something so bad while you seem to be thriving.”
And so, she told me that before we started working together, and I said, look, I completely understand. I’ve been there before, where I just can’t follow people at certain times because they’re doing something that’s triggering me, right. But you also have to take a deeper look inside yourself and say, “Well, why is that triggering to me?” You know what I mean?
And I’ve had that, you know, with several other people in the community where, honestly, I think there’s a couple of people that I have followed on and off, you know, like, because maybe at that specific point of time, their perspective changes or the information changes. And so, I’m like, oh, actually, that aligns with me right now. You know, whether it’s good or it’s bad. But the key is that we all have to check in with ourselves on a regular basis, not just because like you said, it’s not just about social media, it’s about what you consume your mind with, in general, right? Like the movies, you watch the podcasts you listen to, the news you watch, like, literally, there’s so many things that affect us. And the more we can recognize that the better we, you know, will start to feel.
Rachel:
Yeah, you literally of course, you go right where I was wanting to go, which is we don’t realize just how much subconsciously things affect us, right. Like, we are like, “Okay, I’m going to curate my Instagram feed because I know that I’m going to be looking at these things that are gonna affect my mood,” but you don’t realize that sometimes you go on Facebook and you see someone’s photo and like, some of us don’t even pay attention to that initial trigger feeling. Or some of us don’t realize that the music we’re listening to, you know, the lyrics are affecting us or the vibrations in the music, like the type of music is affecting us, positive or negative.
Like, there’s a lot of times that things affect us positively and a lot of people including myself before I really dove into mindset work, don’t really realize how that affects you. And so, now I’m so in tune with how certain music affects me for instance, how certain podcasts that I listen to affect me, how different things that I’m looking at, how it how it feels to like walk outside and see the sun shining and just being more aware of your surroundings, being more mindful in every single moment of the day. That’s literally how I get through.
I woke up super stiff today. I still had to go to work at 6:30 in the morning, I still had to go about my day. I’m, you know, getting on a flight in a couple hours. Like, there’s things that we all have to do. And people look at me all the time they asked me like, I don’t understand how you’re rock climbing. I don’t understand how you’re just dancing around like it’s nothing. And that’s why I try to be very intentional about when I share on social media. For instance, literally yesterday, I posted a couple videos on my story of me dancing. And then my next one, I was like, I posted a photo and put this kind of big, long caption on my story about how like, yes, it looks like I’m thriving, it looks like I’m fine and dancing around. But you know what, I’m hurting really bad today. And this is kind of my coping mechanism. This is how I release; it feels really good to me to move. And I’m doing what I can to keep my mindset in check. And it feels — this is what — this is my truth. And that’s not the same for everyone. And I never, ever, ever want anyone to compare anyone’s journey to mine. Because while I quote-unquote ‘carry it well’, I am no less affected than anyone else.
Like it’s just, we all have our own level of where we kind of like, our breaking point, and how to get past that, right. Like, I definitely have hit a breaking point recently. And I was like, okay, I was there, and I got through it. And I’m gonna just keep going. And I’m going to get through the next one, too. Like, it’s going to always — there’s always going to be a breaking point, right. And we have to learn how to navigate that with the most grace for ourselves and compassion for ourselves, but also being able to empower ourselves and be our own best advocate for wellness, not even just in what we put into our body as far as food, but everything else that we consume.
One other point that I want to make is that, Erika, when you were talking about, like how you share on social media, and it’s not always positive, I wanted to touch on the fact that when we started our podcast, we were a little bit wary about what we’re sharing, and how, although we did talk about poop on our first episode, which is so funny to me, because like, you know, that’s a huge part of gut health.
But as far as really hard, vulnerable things, there have been times when we were recording. And during the recording, we just, you know, we just talk just like this. And then we’ll be editing and one of us will say, “I don’t know if I want to put that in there. Like, it just doesn’t —” and we always ask the other, like, does it feel authentic to you? Is this really like, is that coming from an authentic place? 100% of the time, we’re like, yes, it is. And we’re like, okay, then we’re leaving it. And we leave it in because we want nothing but to share from a completely authentic place, and to show that it’s not always easy, and that we’re not perfect, but sometimes it can be really great.
And we don’t ever, again, want anyone to compare their journeys to ours. But we have found that a lot of people are able to resonate in such a beautiful way to where we get messages all the time like, “This is almost exactly like my story. Oh, my God.” And that’s a really freaking cool thing. You know, we all go through I like to say ‘Same-same but different’, right? Like, there might be like little details that are different, we all get it. And that’s the beautiful part of the autoimmune community.
And anyone listening, like if you have not delved deeply into the autoimmune community on social media, I’m kind of — I’ve got to say — I’m kind of like the more positive side of things. Like, please do go follow Cheryl, go follow Erika, go follow me, like we are there for you, right. Message us, interact with our content. The more you interact with content like that, the more you’re going to see things like that on your feed, on your discover page, things like that. And we’re all here to empower you and like make you your best possible version of yourself regardless of what stupid diagnosis you have. Like, it’s not fair. It’s not freaking fair. But you can still be happy and you can still thrive.
Erika:
Yeah. And lastly, really quick, I just want to say that, although we share our journeys, and people are inspired by us, our main mission is to let people know that you almost you really do have to stay like focused on your own journey. Like, it’s okay to be inspired by other people. It’s okay to get motivation from other people. But really, honestly, the best way to live the happiest, peaceful life with this condition is to find what works with you, focus on your own journey, and find your own inspiration within yourself. Like, that’s the most important thing is that we don’t want anyone to feel like, “Oh, you have to become a health coach,” or, “You have to have a big Instagram to be a worthy person with this condition.” Like, you don’t have to do any of those things. You should only do it if you feel called to do so. But primarily, yeah, our mission is to let people know that just try to find the best way to live your own life and that’s going to look different for every single person.
Cheryl:
I love that so much and I’m really glad you touched on like, the different feelings that can arise when you’re consuming content because I do think jealousy — let’s just put it out there, you know — jealousy is a very common human emotion, right. And like Rachel said, that health conditions are not fair often, you know?
Like, there’s — I always say ‘You can’t define your self-worth by your health’ because in my group, I said this, it like literally just came out of my mouth and I was like, okay, this is kind of true, it sounds crazy, but you know: there’s people who are like mass murderers who have perfect health, like, are you — is your life less worthy because you have — or like less wonderful? Do you know what I mean?
Rachel:
Like, that’s such a good point. I absolutely love that.
Cheryl:
Or like, you know, there’s babies that get lung cancer, like they don’t smoke. They didn’t do any — it’s random. Like, health is random sometimes. So, and I think for me, I’ve had to learn like — this is through therapy — but just that it’s okay to feel jealous. It’s a normal emotion. It’s, you know, and I just asked myself sometimes, “What is that jealousy telling me?” Like, if I’m having a bad day and I see Rachel dancing — I get those same messages, Rachel, because I’ve done a lot of dancing videos. Not as much in the last couple months as we’ve been in the middle of moving and like, anyway, but, people were like, “I wish —” like, or someone said, like, “My husband said that he doesn’t think you actually have arthritis because of how you’re dancing.” And, and it turns out, she felt really bad when a bunch of people responded to her, like, “How dare you invalidate —?” And she’s like, no, no, that’s not how he meant it. He was just like, I can hardly believe that she had. But you know, the words have have weight, right. And it’s like, I started showing pictures of myself when I’m about to take a nap. Like literally, like, I take these videos, I always feel good in the morning. And I kind of deteriorate throughout the day and take a nap and recharge and then feel better. And then I feel worse again. But like, so if I only take a video of myself at nine in the morning when I feel my best, and you’re not going to believe that I actually have those down moments. So, I started kind of trying to document them. But we just have to learn to say like, “Okay, I feel jealous in this moment. And like everyone’s having their own journey.” And yeah.
Erika:
Yeah. I think I really quickly, I just want to go back to like kind of what you’re just saying about the jealousy thing, about that client that followed me and then stopped following me, and now she’s working with me. She recognized that she was jealous that I — not jealous. She didn’t say the word jealous. But I think it was more, yeah, kind of, like envious of where I was at physically. But then she had to ask herself, “Well, why is she there physically?” It’s because she puts a thousand percent into her health. It’s not — I don’t put 20% into my health to live the life that I have with this condition. It’s a thousand percent.
And I tell my clients, if you want to work with me, and you really committed to this, like, you’re gonna have to put a thousand percent in because either way, like, I can’t afford to not put that effort in, otherwise I’m really going to be in a bad place. And so, she recognized that for herself. And now she is at the place where she is putting a thousand percent in. And now, she can look at my stuff and feel good about it and feel happy about it instead of like, “I’m so bitter, like, that’s not me, like, why is she living that life?”
It’s like, we all have to just learn to put that, you know, effort into ourself. And it’s gonna look different for every person, depending on, you know, their circumstance with the disease and how long they’ve had it and all these different things. But yeah, it’s important to just check in with yourself and ask yourself, “Well, why am I feeling that way?”
Rachel:
Yeah, definitely so important. That reminds me of, there was this client that I had a few months ago. Actually, she was one of the first to go through my 12-week program. And she goes, she shared this on a group call with a bunch of other clients on it. She was like, “You know, I, when I very first found Rachel, I was like, okay, I don’t know what this girl is doing. But she is like dancing around with a smoothie and I’m sitting here sick in bed, and like she is objectively having a way better time than me with this disease. And like, I want to have a little bit of a better time.” And so, she started working with me.
And everyone has different goals, right? Like, her goal was not to be like dancing around with a smoothie. But her goal was to feel a little bit better in her own body and connect more with her own mind, and she absolutely did. And she was just like, blown away. And that speaks to everyone has a different path. Everyone has different goals. Everyone has a different purpose in life. But we can all get that same outcome of feeling happier, feeling healthier, regardless of, again, whatever diagnosis you have, whatever disease you’re living with, whatever symptoms rear their ugly head into your beautiful sunny day.
Erika:
Exactly, exactly.
Cheryl:
Oh, my gosh. Well, this is so — I just hope everyone who’s listening feels really inspired by this. And I’m proud of myself for resisting the urge to ask you a million questions about what it was like to have COVID because that is one of the things people keep asking me about.
Rachel:
We’re gonna release an episode about like, in a couple weeks.
Erika:
Yeah, yeah, we’re gonna share what’s been going on with both of us. It’s definitely a necessary conversation to have. And I didn’t think I would be here after six months of post-COVID that I would still be trying to manage a flare after that. So, stay tuned for that. But yeah, maybe there’ll be a round two podcast interview with you on to our podcast, because this year actually, because this year, we’re actually going to start to have some guests on our podcast so we can continue a conversation with something on our podcast.
Rachel:
Yeah, so the first 39 episodes, we have not had guests and now we are planning on opening it up here soon. So, it’s really exciting. Definitely stay tuned at Autoimmune And You.
Cheryl:
Well, and that was it. You definitely led to my next question which is just, yeah, where can people find you? Of course I’ll put all your links in the show notes, but just in case, where can people follow you both?
Rachel:
Yeah, so my handle on Instagram is @RachelAlbo, R-A-C-H-E-L-A-L-B-O. Like, octopus. People always think it’s an A, like Jessica Alba. I love her. And then our podcast, we have a podcast Instagram page as well, it’s @AutoimmuneAndYou spelled out. And then our podcast is called Autoimmune And You.
Erika:
Yeah, and mine is Healing Arthritis Holistically as I said in the beginning, but I really just, quickly, I think a lot of people get confused by my Instagram handle because it implies that like — I, okay, just really quickly, in the beginning of my health journey, I thought very much like you can cure rheumatoid arthritis, like you’ll never have to live with it again. You know, that was like me being super optimistic, you know, and believing that that was 100% possible.
Now, I’m more about just managing the disease the best that you can. But when I’m talking about Healing Arthritis Holistically, I’m talking about the mental, emotional, spiritual part of living with this, with rheumatoid arthritis. So, just disclaimer on that because I think it aligned with something different when I first started my account versus what it means to me today. So, yeah.
Cheryl:
Yeah, that’s really — that’s super helpful. And yeah, I’m very much like, I feel this tenuous balance. For me as like, I’ve considered myself kind of like a health educator, patient educator, right? And I want people to have access to the most accurate information and as optimistic as I am, yeah, I have to like, help correct people’s misunderstanding sometimes about, you know, that, you know, that arthritis can be definitively cured or healed for every individual. There are always going to be individuals that have, you know, adopted a diet or lifestyle or anything, but yeah, so, but that’s — I definitely, and I curate who comes on the podcast, just FYI, for the people listening. So, I definitely appreciate that disclaimer.
Erika:
Yeah. And you would see through my content that I’m not like, perpetuating the idea that you just do one thing and you’re cured. I’ve like, if you looked, I’ve never used the word ‘cured’ on my page, like ever, because that’s just, that’s misleading, you know. But back in the day when I was talking about, like improving your symptoms through diet and stuff like that, that’s not misleading. That is the truth. Like, there is truth to the things that we do. And it may not be the cure, but we can definitely improve ourselves by you know, focusing on all areas of our lives.
Rachel:
Yeah, and you’ll notice that on our podcast, I mean, we always joke about it, but it’s absolutely true that we always come back to mindset and intention. Those are like, the two literally pillars of our podcast. Like, we are always coming back to it whether we try to or not.
Cheryl:
Oh, my gosh, no. So similar. Like I literally say, every single — this is like the first episode where I haven’t talked about Acceptance and Commitment Therapy, which is like the mindset approach I use, but it’s like every single episode it comes, it all comes back to that. And like I’ve joked, like, my tagline for Arthritis Life is like ‘Come for the life hacks, stay for the emotional support’, like that’s my internal, you know —
Erika:
Yeah, that’s cool.
Cheryl:
Because I, yeah, I think that, and I think that one of the hardest things is to sell the idea of like, acceptance to people, right? Because it feels like, it’s a word like ‘healing’ that can be very misunderstood, or it feels like giving up. And it actually is like — to have people in the community like you too and hopefully me who can show that like, look, we accept the bad parts of this and like, we are still persevering despite it is hopefully really encouraging to others who feel like that. Because I think there’s this idea that you can’t really have a good life until you’ve healed it, you know, or take care of it, or your symptoms go away. And I’m trying to, hopefully, you know, through all these podcasts and through directing people to your podcast, help people understand that there’s a lot of ways to have a good life, you know?
Rachel:
Changing the narrative of the autoimmune community, one episode at a time, one post at a time.
Cheryl:
One dance at a time.
Rachel:
Yay!
Cheryl:
Oh, this is so fun. Thank you.
Erika:
Thank you for having us.
Cheryl:
This is stuff I wish we could talk for nine more hours, but I do want to respect your time. And Rachel literally has a plane to catch.
Rachel:
Yeah, yeah, I literally gotta get on a plane.
Cheryl:
Yes, we’ll say just goodbye for now.
Erika:
Yes.
Rachel:
Goodbye for now. Thank you so much for having us on. This was a lot of fun as we knew it would be.
Erika:
Yes, thank you. We appreciate you having us on here. And not only just sharing our personal stories, but being able to have another platform to share our podcast to reach more people.
Cheryl:
Yes. Wonderful. Thank you so much. Bye-bye for now.
Rachel & Erika:
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.
