Have you ever wished you had a community of people supporting you, who just “get it?” On the five year anniversary of Rheum to THRIVE, members of Cheryl’s program share their personal experiences and memorable moments from their journey with rheumatoid arthritis and similar autoimmune conditions.
Cheryl, Marisa, Alice, Gittel, Meg and Annette reflect on the profound impact of community, the invaluable educational components, and the collective wisdom that has helped them cope and thrive.
The conversation highlights the importance of vulnerability, shared humor, and the supportive environment of the Rheum to THRIVE group, which empowers members to navigate their health challenges and advocate for themselves.
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.
Rheum to THRIVE,an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected.
See all the details and join the program or waitlist now!
Ep 172 - 5 year anniversary Rheum to THRIVE
[00:00:00] Cheryl Crow: All right. Hi, I'm so excited to welcome you to episode 1 72 of the Arthritis Life Podcast, this is a really special episode.
So this episode is a celebration of the five year anniversary of the Rheum to Thrive support program. So I'm recording this in May of 2025, and I first started my very, very first support group program in and course in May of 2020.
So the, this little conversation that you're going to hear today is between six different people who have not only taken the initial Rheum to Thrive program, but also who have continued on in what's called the Graduates or the alumni group where we keep meeting every week and supporting each other.
Actually, if you can see behind me these post-it notes,, please check out the video on YouTube or my website, arthritis dot the enthusiastic life.com. But these, each post-it represents one person who's joined one of the cohorts of the support group or the self-paced course.
I just wanna be really clear that all of our regular support group meetings are kept very confidential, and you're always welcome to speak off the record. I don't just randomly take conversations that have been said in the support group and share them on the podcast.
Today is a special one where I asked if anyone would like to stay after our support group meeting and share publicly, any reflections on the five year anniversary, on what the program has meant to them.
And just have a little, almost like a ceremony where we discussed what has been the impact and what do we appreciate about other people in the group. So I'm really, really excited to bring this to you today.
And I really encourage you to take a look in the show notes. The show notes will always have the latest information about the Rheum to Thrive, you know, self-paced course and the educational support group program. Because I have made some changes and iterations over the years.
So if you have any questions for me, I would love to answer them and I would love to welcome you into the group, the ongoing support group, if that's something that is of interest to you after listening to this episode or at any time in the future.
So thank you so much again to the six people who did choose to share their reflections about, about the importance of support in general.
There are many, many different ways that you can get support and and Rheum to Thrive is a really special one, and the Thrive Graduates is a really special one and obviously near and dear to my heart.
I also wanna take a moment to appreciate each and every person who has taken the time to join one of the cohorts to make those connections, to take the time to learn about your condition, because that is so important.
And I just, I cherish each and every one of you. And I'm just, I'm excited to share this episode with you today.
So without further ado, here is our conversation. Thanks again.
I thought we could just start by if anyone wants to share maybe some of your favorite memories from being part of the program? Any reflections you wanted to share?
[00:03:15] Marisa Levy: So I just wanna say, when I first started in this group, I was like freshly diagnosed as well. And so I really had zero to no background on related diseases or know of other people that you know, had the same sort of category of autoimmune disorders.
And so just having more information and like strategies for coping with it and understanding that, you know, going on my first biologic may or may not work and setting realistic expectations was just really helpful and made it feel far less scary.
[00:03:56] Cheryl Crow: Aw, thank you. I was jumping right to the support group part, but yeah, that speaks to the, you know, educational, educational component and it is scary, obviously , having to start new medications, having to learn all these coping tools, it's much more, much more fun and easier to do it with, with support. Whether that's one person guiding you through, whether that's a group.
But Gittel, what are your thoughts?
[00:04:21] Gittel Aguilar: To go along with that, like that, that education piece is so, important because it gives us a focus on which to to, to concentrate. Not just our, our anecdotes and sharing our experiences and stuff, but also just the number of times that we ask each other, "Hey, does anyone know about fill in the blank medication or treatment" or anything like that.
Or again, I feel like this fills in a lot of those missing gaps that we tend to get in those way too short doctor's appointments that it's here's your diagnosis, good luck.
And it's like, how many times did we come to the group where it's - I just got diagnosed with this, anyone else have experience with this? And then being able to have people talk about that.
And again, just those nodding heads and the knowing looks like you're just like, thank you. Okay. I am not alone.
Which I think is the number one part of the support group, is knowing that you're not alone and feeling that you're not alone are just so important.
From my experience, I remember talking about that, like going from a free support group to a paid support group. So it was like, okay, how do I find the one I wanna pay for, right? It was like, I know I wanna pay for one, but how am I gonna choose the one that I end up paying for?
And I remember, Cheryl, that it was all your Reels. There was a, a Disney one, and then there was like the fact that it was Rheum to THRIVE had an acronym.
So for this forever teacher, it was just like the biggest sign that I was like, oh my gosh, I think this is it, this is the one that I wanna pay for, like this, this makes sense for me. She's speaking my language on two fronts, not just the Disney part, but also the acronym part. And it just already made me feel like this was gonna be good. It felt like a good sign, you know?
[00:05:55] Cheryl Crow: I know, know, knowing you now, the only thing that could have made it even more perfect is if the Disney reference was "Goofy Movie."
[00:06:02] Gittel Aguilar: Oh my gosh. Exactly. I that I would've, I probably would've DM'd you right away and be like, I wanna be part of your group. This is--
[00:06:08] Cheryl Crow: meant to be. No, and I think, yeah, I think that it's, a lot of times people are like, okay, what makes this different than a general support group?
And I think, like you mentioned, it's that, that education piece. And it's not just like me teaching people stuff, it's also the having access to the collective wisdom of the group. 'Cause there's a lot, even though I've made this my life, arthritis is my life, I'll, there's still stuff I don't know.
Even if I know 'em by the book, I might not have had personal experience with them.
[00:06:37] Gittel Aguilar: Having a nurse in there, having a lawyer in there, having all these different perspectives. And again, like this being called the Graduates, right? Like realizing oh yeah, we have freshmen like Marissa who are like newly diagnosed and just into this world.
And then we had sophomores and juniors who were like, I've been dealing with this for a while. I wouldn't call myself a master at any way, shape, or form. But you know, it's not my first rodeo.
And then you had the seniors that were just like, I've been doing this a long time.
[00:07:04] Cheryl Crow: Yes!
[00:07:06] Gittel Aguilar: Let me, and then who could even share their perspective of what it was like before biologics were even a thing, right? And you're just like, whoa. Even that gave me the perspective to appreciate the fact that these drugs exist, exist now, whereas they didn't exist before. Like even just that perspective was huge, you know?
So, the appreciation of having different diversity of perspectives, not just in terms of our professions and our ages. The one that we need is more gender. Yeah. Shout out to our, our brave boys. But I, I, I would like more diversity of that perspective for sure.
[00:07:37] Cheryl Crow: Yeah. Yeah, a hundred percent. I love that. The analogy of freshmen, sophomores, junior seniors. And it, what's, what's unique, I think about chronic illness and autoimmune ill disease is that you might be a freshman or a newbie for one diagnosis, but a senior for another.
It's just really nice to have access to people who have experience of the different stages are also just the stages of life, right?
Marriage, divorce, kids, pets changing, jobs moving. I mean, in the course of this group, one of our lovely members went from recently divorced to dating, to now married and moved, and it's, it's just amazing to be able to be there for each other, through all that.
Who else wants to share? Yeah. Meg.
[00:08:21] Meg Zell: So I had been experiencing symptoms when I was around 25, but I didn't get diagnosed properly until I was 30, and that was right around the start of the pandemic, which is pretty wild. And I remember just being like, I -oh my gosh, what is going on? Feeling super alone. I was also simultaneously having some mental health issues as well.
And I remember finding you online and just being like, whew, okay. But there was this still this component of - and kind of how I was raised where you just have to figure it out yourself and you just have to do that. And, you know, trusting the doctor's word and not having that community, which I think made it much harder to get by.
And I had in the past few years done a few support groups for mental health purposes. And then I was like, you know what? I just need to do this. I need to be in this community and I am so thankful that I am a part of this community. It like, especially because you're also teaching us mental health approaches, which I'm just like, it's well-rounded, super educational, amazing support.
And I am like, I'm obsessed. I'm like, I feel so connected. I feel valued. And strangely loved. I've never seen anyone in person, but I feel loved from this group, and I just think as somebody who feels like a big portion of my life is out of my control, this support group gives me like, I don't know, just great feelings overall.
So I'm, I'm so thankful.
[00:10:08] Cheryl Crow: I'm so thankful that you found it and that you took the plunge. 'Cause it really is an, you know, until you join it, it is an unknown quantity.
And so I'm just, I'm really glad that you've, you know, that you feel so loved by this group. 'Cause you are, you really are.
What, what about you, Alice?
[00:10:27] Alice Getchell: I just have to say, well, echo Meg, I can't tell you how much this group means to me. And every time I, I mean, I look so forward to each meeting and it makes me weepy. So that's all.
[00:10:43] Cheryl Crow: Thank, thank you, Alice. No, it is it, I look forward to each meeting too.
This month has been so special 'cause I've been really thinking about , what did I feel like, you know, in 2020, five years ago?
And I had so many fears before starting it, you know? What if, what if people feel worse after joining it? What if they have all these questions I don't have the answers to? What, there's always what ifs, the anxiety part of my brain.
I wish I could go back to that person five years ago and say, you know, that it's going to be okay. You just gotta start the, start it and, and the people will come and they will connect.
I think I put pressure on myself as the person who created the group. Initially, I thought it all had to be me, you know? And it's really not. Obviously I'm facilitating it, but it's you bringing your hearts and your stories and your vulnerabilities and your problem solving to the group, that that's what makes it really special.
So, Annette, I saw you had a thought too.
[00:11:41] Annette Leja: Yeah, it's so, oh, so touching what everyone's sharing. But I think similar to what everyone has shared already, I was also newly diagnosed, trying to navigate like this new aspect of myself, like being really upset at my body for not working the way that it had worked before.
And you know, I am, I'm a psychologist, so I was like, okay, you know, in problem solving mode and and I like had initially tried going to therapy, like individual therapy in myself because I am also just naturally very, like socially anxious. And it was, it was helpful.
But what I really needed, and when I really started to notice the change and when I really started to come out of that sense of loneliness, was when I started group.
And I think like this has been mentioned before, but like just being in a space where you can share an experience and everyone's like nodding their heads and they just totally get it. I don't have to explain, I don't have to explain why I can't work out the way I used to. Or feel like the, the shame, shame is something I talk a lot about in therapy.
And so that. That was just really helpful and, and being able to be vulnerable and share things. I had nothing to worry about, like in terms of being like just socially anxious and this being done in video.
But yeah, it was really nice to hear this, this term has been used already, but the collective wisdom, I really liked that term. Because you know, as someone who was like new to this chronic illness space, like anything that I was like, ah, I don't know! I knew that I had group and that I could bring it up and that it would be okay. And I would either be able to vent or get the collective wisdom from, from others.
So, yeah, it's just, it's just been amazing. Healing really does happen in community.
[00:13:42] Cheryl Crow: Oh wow. And that, I mean, it's, yeah, healing happens in community. I think that that's, that's beautiful. And I think you mentioned shame, and I do think that that's something that's come up over and over again is that maybe not just shame, but people feeling like they're the only one.
Like I can't tell you how many times in the last five years in either the newbie groups or the, you know, the Graduates group, people said, well, I'm probably the only one, or I'm probably a freak.. And everyone feels like they're the only one. When in, in reality, when you say it out loud, you see those nods.
No, no, no. I, I experienced that too. You know?
And even to me, again, being, having had this for 22 years, it's I have to learn that lesson over and over again. We all feel like we're a mess sometimes, you know? We all feel like everyone else has it figured out except for us, you know?
And and to hear other people say, no, I'm, I'm trying to figure it out, but I haven't figured it all out and i'm gonna proactively or share some productive tips for everyone. This helped me, this didn't. But also we can sit with each other in the messiness where we say, yeah, like I did all the things that were right and then I still don't feel good today.
And that's, a hard feeling and it's hard to explain to somebody who hasn't been there, you know, GT what are, what are your thoughts?
[00:14:57] Gittel Aguilar: I was gonna say that that honesty piece is so important, like being able to be vulnerable and honest with everybody. Not having to put on a brave face and being like, oh, but I'm okay. Which I think a lot of us actually did at the beginning. We would vent a lot and at the end be like, but you know what, it's fine.
And you know what, we got over that, thank the Lord, with each other. I think with the validation from each other, with realizing we don't have to put on that mask for each other. You know? Like we don't have to be like, oh, but you know, I know I just complained and now I need to put on a little cherry on top to make it palatable to everybody.
No, we're, we're not doing that in this group, you know?
And, and so many of us, even if we don't know exactly what you're talking about, we have a similar enough experience to be like, I at least can put myself in your shoes even if I can't empathize completely with you. At least I, I definitely know where you're coming from with this, you know, and that is also super invaluable.
But what I was gonna say before, which had to do with the wisdom and almost the counter to that is an, and actually this goes with what I was just saying about that vulnerability and honesty is the fact that not just you, Cheryl, but because you are the leader of our group and everything, the fact that you do feel comfortable saying, you know what, I'm not sure about that.
You know what? Let me find a link for you. That also adds to the trust level because you know, to have someone who pretends that they have all the answers, who knows that blah, blah, blah, blah, who pushes you to be positive all the time and good vibes only? It's that's not, that's not what this group is.
And I'm so happy and proud about that, that we have made this group to not be that kind of space that -we have made this group to be a space where we can be vulnerable and be there for each other, and that there is a lot of love there and, and that is just, yeah, that kind of is the lightning in a bottle that's a little hard to recreate, but that, that is the, the beautiful part about this group for sure.
[00:16:56] Cheryl Crow: Thank you so much and I, I think that this is such a full circle moment for me because I remember distinctly in 2018 or 2019, so a couple years before creating this program. I was teaching at an occupational therapy assistant program and I was talking to my therapist about how I felt so anxious sometimes when the students would ask me questions that I didn't know the answer to, and I felt like I should know all the answers.
And he was like, literally your therapy homework this week is to say the words to your students "I don't know." And I thought, I laughed in my head a little bit 'cause 'cause humor is one of my coping mechanisms. I was like, oh my gosh, this is like therapy for a know-it-all, you know?
All my fears at the beginning were like, I know people need this. When I wanted to form this group and this program, I knew it because of all my experiences talking to people on social media and the volunteer work I had done with the Arthritis Foundation, with people in person, just knowing gosh, people are not getting enough support.
They're not getting enough education and they're not getting enough support. These are like complete afterthoughts, to people in the medical system.
But I was like, what if I don't know? And, I started noticing that some of my most, my favorite people that influenced me in a positive way that are like, whether it's a Glennon Doyle or other, you know, Brene Brown, people like that, that are really prominent in kind of this self-help in the mental health world.
They were, they were, the people who are the biggest experts in their, in their fields are the ones that are most willing to ad- say, not even admit, I don't wanna use the word admit, to just acknowledge that yeah, there's a lot we don't know.
And, further in deeper into that point is the idea of the work that we all have to do with a chronic, fluctuating illness of accepting or acknowledging or allowing the unknown, the fundamental unknown of what, is it gonna get better? Is it gonna get worse? And being able to sit with each other through all the possibilities.
So we, we help each other say, okay, there's the shoulder angel that can kind of say, a shoulder coach that can say, remember like most likely it's gonna be okay. But also the shoulder critics slash, the shoulder, like realistic, be like, no, you're totally valid to feel your feelings of anxiety about this.
But yeah. Alice, what are your thoughts?
[00:19:06] Alice Getchell: This is kind of piggybacking off some of the things that GT said, excuse me. One of the things that this group has given me is some, well confidence but empowerment that I can carry on, but I can also take with me what I hear in this group, what strengthens me out into my other personal communities that I can go out and not feel like I am judged somehow of, oh, you poor thing, you have these conditions.
But I can just have, show some strength in owning, okay, I have this, but this, I'm working with it. I wanna continue to do that. It's just the strength, so thank you.
[00:20:02] Cheryl Crow: Yeah, that's, that's so beautiful. I remember someone's once in the group said, shared that their spouse had noticed that, they said you seem to be in a better place recently, why do you think that is? It was about a month into the program into this group. And she like I honestly think it's the group, you know?
It's just true that there is something transformational about that, that community, that magic elixir mix of the education, plus the sharing, plus the support, the cheerleader.
I know GT mentioned we, we've had some dance parties and one of the songs is that cheerleaders song, you know? And " I think I found myself a cheerleader." I'm, I'm not gonna subject it to my singing voice, I already did that. If you wanna hear my singing voice, you can hear it on the Taylor Swift episode.
But, you know, is there anything else you would all wanna share or any of you would wanna share about about the impact of this? Did anything surprise you?
I think for me, something that surprised me was how much we talked about ableism and internalized ableism. 'Cause I hadn't even identified that as a main topic before, but idea of unlearning the shame that we might feel for having a condition and that it was our fault somehow, even though we know it's not.
Just being able to work through that together has been really powerful for me personally, that, that I would say that wasn't on my list of things that we would talk about in 2020 when I started it. What? What about you GT?
[00:21:24] Gittel Aguilar: Also the toxic positivity of it all, you know? Yes. Which is kind of what I was talking about before, where it's like feeling forced to put on that mask of having a brave face and "no, things will be okay, i'm positive." And being able to, once again, to be honest and to be vulnerable because I am amongst my friends, you know, and, and why would I lie to my friends? This doesn't make sense.
And again, that's the point that I wanted to make is that I have made so many friendships from this group outside of the group you know? Like we continue talking outside of these weekly sessions and that, that's an invitation to all of y'all as well.
But even just like on Instagram, like sharing memes, we talked about sharing memes being a love language, right? Just being able to do that. And again, being able to share the chronic illness means that for other people might be a little too much, or might be like, what?
Or they just will not understand whatsoever. But with y'all I can put it in the Discord group or I can share it directly with one of you and I know that y'all, you're gonna chuckle with me. You're not gonna start a pity party for me, and oh, her life is so sad. Like you're just gonna be like, yeah, that's funny.
[00:22:26] Cheryl Crow: Yeah, memes funny memes are one of our love languages for sure. And we, we also have differences in the group too, that there's people with different, religious views or different, just world views. And it's been amazing to see that we are so, we are so bonded by this unifying experience of having the chronic condition and that.
Even if we have different, you know, different worldviews and different approaches to medicine or approaches to whatever methods we're using to manage our conditions.
And we just, everyone's allowed to have those choices and talk about them, but we don't, we're not allowed to criticize someone else's choice outright, you know, in any sort of personal way. So that's one, those two ground rules I feel really passionate about maintaining that, those respect and confidentiality in the group.
I think that helps make it be a safe space. Alice, what, what are your thoughts too?
[00:23:20] Alice Getchell: I'm feeling like I'm talking too much, but
[00:23:23] Cheryl Crow: That's okay. Never, never too much. It's a talking group. That's why I tell people it's a -it's a talking group. It's literally support group so!
[00:23:29] Alice Getchell: Yeah, it's, well, what I wanted to say is just mentioned already, the humor is part of my toolkit.
As we can call it, of ways of, of getting through the day or getting through a tough moment or just remembering or thinking about something that was just said or done: what is there in that I can see gratitude for? Or what is there in that that I can see a bit of humor for? Because that helps me keep, Okay, going forward. I'm going forward all the time.
And just, I don't know if this is appropriate exactly, but I know a lot of people with chronic conditions are considered having a disability. And is that appropriate for me to say? I have a friend who also has a chronic condition. She sent me a meme.
Well, if you call it a meme, it's a quote. "Disability is not a brave struggle or courage in the face of adversity. Disability is an art. It's an ingenious way to live." Now it's a quote from someone named Neil Marcus, whom I don't know anything about, but I just felt some strength in that and so I just wanted to share that.
[00:24:54] Cheryl Crow: That's beautiful. Yeah.. Was there anything else about the, the groups that we wanted to, to say yeah?
Meg, wish you could put managing chronic illness for 10 years on my resume? Yeah. Seriously. Seriously.
[00:25:09] Gittel Aguilar: Yeah. Remember at the beginning we used to call ourselves life hackers? We're like, we'll figure out a way it's not gonna be the way that you're used to or that you've envisioned or anything, but we'll figure out a way.
Like we're like, we are the ultimate life hackers here of trying to figure out a way to do something. Yeah.
[00:25:26] Cheryl Crow: Yeah. I love that. Arthritis life hackers. Or thrivers. I think that the essential goal really is to empower you to feel a sense of thriving in your, in your life, whatever that looks like for you.
You know, sometimes thriving looks like getting outta bed. Sometimes thriving looks like running a marathon. It's everything in between. It's all about the context of your life.
[00:25:50] Gittel Aguilar: And that's why when you said that like sometimes we -I don't know what word to use, but I'm gonna use the word, sometimes we celebrate our small wins, like getting out of bed. I'm like, yeah, like me, I'm celebrating that right now. Yay. I was finally able to get out of bed and make myself a breakfast drink.
And the fact is that if I have this kind of conversation and I want to celebrate this win with non thrivers.
[00:26:11] Cheryl Crow: Yeah.
[00:26:13] Gittel Aguilar: You know, it, it, it, it tends to lead towards, it tends to lead towards, like I've mentioned before, like a, a pity party, right?
Oh, so sad, Gittel, your life is so sad, you have to celebrate the fact that you were finally able to get outta bed at 11 and make yourself a breakfast drink. Oh.
Whereas when I'm talking to you guys, I'm like, you guys, I finally did it, I finally was able to get out and the genuine like, yay, good job! And everything that I feel, it doesn't feel condescending.
It doesn't feel like I'm supposed to feel ashamed of it or anything. It feels no, I'm genuinely proud of myself for this moment, and this small win no longer feels like a small win, and it feels like a genuine win you know?
And, and that's something that I don't think I would've been able to have that reframe in my mind had it not been for having a group that celebrated those small wins with me you know? Because otherwise I would just resent it all the time. Oh, now I have to be settling for these small wins, you know? And it's no, I. Genuinely do feel excitement about this because I know how hard of a struggle this is. You know?
And, and not just for myself, but for everyone. And it feels if I'm not able to celebrate for myself, I can celebrate for someone else.
It's taking away the hypothetical abstract of it and giving me actual, concrete people to think about, you know? When I'm being hard on myself and I say, would I say this to someone I love? Would I say this to a friend? No, I specific, would I say this to Cheryl, the founder of my support group?
And it's like: no, I would not, you know? Like that. Would I say this to another friend that I've made through this support group, a fellow spoonie friend that I know is dealing with so many struggles and blah, blah, blah, and that, oh, you're really gonna celebrate that small win?
No, I'm gonna celebrate that small win with you. That's fantastic. And if I'm doing that for you, why would I not do that for myself?
Like why is that something that I only, Hmm. Think about when it comes to other people and not for myself, like these are all gems that I got from being part of this group and being able to no longer think about this just as a hypothetical, abstract thing, but as an actual concrete thing, and seeing your faces and having them come into my mind when I'm struggling, you know?
So thank you.
[00:28:18] Cheryl Crow: That's so, so beautiful. I love that. Taking it outta the abstract, putting it into the specific, it reminds me of the difference between knowing and feeling like you might know you're not alone.
You know that there, one out of a hundred people in, in the United States has rheumatoid arthritis, for example, but you can't always feel that. You know that logically, but feeling it, you can only feel that when you actually interact with people with that, a similar life experience, you know?
When I'm in the role of supporting someone, which you all are too, you're not just receiving support in a support group, you're giving support, right?
And when you give that support, you, I think almost everyone has experience of, wait, why am I telling them something that's so kind, that's so much more kind than I am to myself? Like, why is it so much easier to be kind to others than ourselves?
So it's like we often in, in supporting others, we say the things that we need to be saying to ourselves. Does that, anyone else find that? Okay. You're all nodding. So, yeah. Yes.
[00:29:19] Gittel Aguilar: All right. And I'm gonna keep on talking because I think that that you're on a roll. Exactly what Alice was saying about like the empowerment and the strength that you feel in this group.
I think that's part of the reason why, because we get to feel useful in the way of: I am offering support to someone else, you know?
And it's again, returning to my own personal example this morning I'm like, really? Like, I am crumpled up in bed in a heap right now, and yet I'm feeling valued as a person, because I know that my presence in this group is adding to that collective wisdom that we talk about, is adding to the collective support.
I think that that's part of the empowerment part of it, where it's: I'm, I'm contributing, you know? We had just talked about how your worth is not measured by your productivity. We talked about that in group earlier. Which is so fantastically true, but it also, you know, kind of points to the fact that like we do tend to feel more worthy, more valuable when we do something productive or when we do contribute or when we do give in some way, shape, or form.
And the matter of fact is that we tend to think of giving as material or very like in one direction. But no, we give our support, we give of ourselves in that way to each other. And I think that is the empowering piece of this.
[00:30:37] Cheryl Crow: That's beautiful. Wow. So, so well said. You certainly feel a sense of purpose, this group gives you a purpose in the giving of support . And if, if your best way of giving support that day looks like being crumpled in bed and just hitting the heart button when someone's sharing to show them , that you were happy, that you wanna send them love and support. That's your best. That's great!
That's just a beautiful, yeah, it's a beautiful reflection. Anything else any other thoughts before we wrap it up?
GT what are your thoughts?
[00:31:12] Gittel Aguilar: What I was gonna say was that this group has also really helped with my interactions with people outside of it and my relationships with people outside of it. So for, for instance, one, I no longer feel like I am flailing trying to figure myself out and possibly splashing water in people's faces or maybe even pulling them down, right?
I can understand the number -we, we talk about this in the R of Thrive, right? The relationships and why we have, we have a lot of issues with the non spoonie relationships. Because it, it's hard to "get" something that when you, when you don't have it, right?
How this group has helped me with that specifically is: I now have a more, I guess, compartmentalized way of looking at it. Like we mentioned before oh, I'll save this one for the group, right? Oh, this is something I wanna bring up in group. This is something I want to know, I want to hear the collective wisdom, I want to get those perspectives.
And this no longer is a thought that I am gonna share with my non-disabled, non spoonie, non chronically, right? Because it's like they're, they're not gonna get it. And that's not really the perspective I need anyway. I want one from someone who gets it, you know?
And so that has helped me as well as when we met in our group, sometimes we're like, I just need to get this off my chest, I just need to talk about this versus, I need advice, you guys.
I feel like we've learned more how to express our needs and how to how to ask appropriately and from the appropriate people, right, like what we actually need from them.
And I feel like this group has helped me a lot with that because I'm able to have the vocabulary for it, I'm able to think through it a lot more, right? Even just what I just did where I was like, oh, that's the R in Thrive, right? If I'm like, oh no, I need help with the E in Thrive, I need help with this, you know?
So it just, it helps me be able to organize my thoughts more. It helps me to be able to express myself more. It just gives me a lot more clarity, belonging to this group, the education part of this group. So all of that has been extremely helpful for not just interacting within the group but outside of it as well.
So I definitely wanted to bring up that point.
And last but not least, you asked Cheryl for any favorite memories we have from this group and one of the ones that just will forever. Bring a smile to my face, or maybe more a cackle to my heart is during the, during the lockdown when we couldn't be going out to our appointments and stuff, and so I, one of us had to do a stool sample through the mail.
[00:33:40] Cheryl Crow: Oh, the poop talk. Yes. Yes..
[00:33:42] Gittel Aguilar: And then so, and then this was like coinciding around the time when a lot of packages were being stolen from people's doors, stuff like that. And someone stole sample package. It got stolen and we were just like cracking up about this, imagining someone opening up this package.
[00:34:00] Cheryl Crow: Yes, I remember 'cause I was one of the people who had to do the stool sample. There are sometimes you do a stool sample, i'm gonna be a graphic here. Okay. Sometimes your stool sample is you just poop into a little, like a plastic, you know, bowl thing, and then you just scoop it with a little scooper and put it in.
You could just put that in this tiny little package, okay? No, this was a bucket, a literal bucket, like multiple gallons that you weren't supposed to poop that much in the, but I had to do all of my stool for a certain number of days into that bucket, and I kept thinking, oh my God, if this gets lost in the mail, like what?
But yeah, that was, yeah, we talk about everything that might be going on. So many of us are collectors of illnesses, collectors of diseases, collectors of whatever, that we have other things going on that, that necessitated those stool samples.
[00:34:57] Gittel Aguilar: And then the lockdown from Covid made it so that we had to, we had to life hack it, right? Okay, yeah.
So I am now mailing my poop. Okay.
[00:35:06] Cheryl Crow: Yeah.
And yeah, we do have so many lifelong learners in this group. People who really, I think that is part of the self-selected nature of it, that people really want to continue learning how to, the tools to thrive and manage their condition, but also a lot of people who are really emotionally intelligent.
People who are willing to examine their, you know, own "inner world" as we call it in the "THRIVE framework."
And I mean, I think another person I can think of in the group who's already shared her story publicly, I won't say her by name here, but that she went into becoming a counselor. And I, I said after meeting this person in the group, you are so gifted at just reflecting back to people and, I said have, have you ever thought about that?
She said it's funny you say that because yeah, I've always wanted to be, you know, a mental health therapist and, and it's been amazing to see, now she is! And so we celebrate all, all of these things.
Sorry, GT, what are your thoughts?
[00:36:00] Gittel Aguilar: Two things. So one is the podcast the existence of the podcast, the fact that we can be guests on this podcast. We can share our voices, we can share our experiences. I can hear other people.
I'm so excited to listen to Alice's episode right now. , Even that fact, the fact that once again, it's not a random person that I've never heard this is Alice's. I wanna hear her story. This is my friend, I wanna know more about her, you know, so I am so excited.
And also the fact that you record the meetings. As I mentioned earlier, I was like, one of my favorite activities to do when I have a flare, one of the things that actually does help when I have a flare is putting up one of the recordings. Maybe I'm not even, I, maybe I can't even process, but just the fact that I can see your voice, I mean, see your faces and hear your voices is very soothing to me.
And we talked about that being like almost like a comfort show, you know? So it's like I'm still laying in my crumpled heap in bed, but now I have my friends here too, you know? And so those two resources are invaluable as well, and that's part of this whole support group thing that you offer. So I definitely want to make sure that that is mentioned.
[00:37:01] Cheryl Crow: That's, that's so sweet. And this is not the most important part of what you said, but in case you're worried about the fact that it's recorded , I do have a rule or an agreement that if anyone ever wants to speak off the record, they are welcome to do that. You consent to recording, and then you can say, no, I don't want this part to be recorded.
So that allows people to make sure that they, you know, feel most comfortable sharing and connecting.
But yeah, I love that when I heard that you, that you did that. I listened to the recordings or watched them as like a comfort show. I just think that's such a beautiful, it's a beautiful thing.
And then, because we often joke, 'cause we all have brain fog sometimes that it's also nice we're like -I'm so glad this is being recorded, 'cause someone's saying something really smart. Right now my brain's not like completely retaining all of it, but I, I can go back and I can listen!
[00:37:49] Gittel Aguilar: Oh my god, when I was starting the methotrexate injections.
I went back and listened to. I was like, I remember there were so many people in the group who had questions about this. And blah, blah, blah. I don't need to recreate the wheel here. I'm just gonna go back and listen to the people talking about the methotrexate and watch your reels about the methotrexate.
And then Cheryl, you still did an IG live with me to do my first methotrexate injection. Like the, this is the special stuff, this is the, the, the, the -thank you so much.
[00:38:16] Cheryl Crow: You know, it's this community. I mean, it's, yeah, and I, it's, I honestly don't know if it wasn't for the pandemic, if I would've done this all virtual, and I'm so glad that it is virtual. Because if I had done it locally, the only person in this little group that would've been there is Meg, which I love you and we would've had so much fun. But it's just great to be able to meet people from all over the country, all over the world.
There's been people from Japan, England, other places, and we can do things like you said, do you know if some, someone is doing their very first injection? They mentioned in the group, they don't wanna feel alone. You know, other people have said, okay, well call me you know, here's my number. I'll be there for you, and we can, I can walk you through it or, you know, give you the moral support in your case.
Well, thank you all so much. I have to go right now, but I really appreciate these reflections and you know, it's been wonderful just celebrating with you all.
We have a lot of inside jokes and one of them is "Arthritis the Musical." So stay tuned. Stay tuned for "Arthritis World Tour," stay tuned for "Arthritis the Musical," which Chris and I are gonna co-write with Lin Manuel Miranda and Taylor Swift.
And stay tuned for Rheum Island, the magical island we imagine where we always say so and so, if they're a good provider or a good friend or whatever is invited to Thrive Island where all the thrivers go and certain people are, are not invited to, to Thrive Island.
So where there's no, no health insurance barriers and no, no one bringing you down. So Teddy is also part of our meeting, so I thought he should be in here.
Yeah. You really have to watch the YouTube video of this one because, or the video version, because then you can see my little, my little puppy Teddy who's six years old.
So thank you all so much. I know he's the best. I'm gonna squeeze him 'cause he's my best friend. Okay. Love you all. Thank you.
Bye. Bye.