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General Education, Podcast

Mindful Social Media and Chronic Illness: Gittel and Cheryl’s Journeys

2 months ago
85 min read
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Summary:

On this episode, Gittel returns for her fifth appearance to reflect on her journey with Crohn’s disease and ankylosing spondylitis, her evolving relationship with the Rheum to Thrive program, and the importance of navigating social media in a healthy way.

Cheryl and Gittel explore the importance of being mindful with our social media use. While they highlight the risks of falling into negative patterns that can lead to isolation, they also emphasize social media’s powerful potential for connection and support among those living with chronic illness.

Gittel shares how participating in online support communities like Rheum to THRIVE has strengthened her self-management and coping strategies. Together, Cheryl and Gittel stress the importance of setting intentional goals for social media use, fostering connection, protecting mental health, and ultimately avoiding the trap of isolation.

Episode at a glance:

  • Milestone guest return: Gittel joins the podcast for her fifth appearance and reflections on her journey with Crohn’s disease and ankylosing spondylitis.
  • Rheum To Thrive: Gittel reflects on how her relationship with the Rheum to Thrive program has grown over time.
  • Mindful social media use: Comparing patterns of use, misuse, and abuse to drug use.
  • The double-edged sword of social media: Exploring both its risks (isolation, negative cycles) and benefits (connection, support).
  • Personal impact: Gittel’s story of how online support communities improved her coping and self-management.
  • Practical takeaways: Setting intentional goals for social media to foster connection, protect mental health, and avoid isolation.

Medical disclaimer: 

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

Episode Sponsors

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

Speaker Bios:

Gittel Aguilar

Gittel is a 36-year-old daughter of immigrants from Central America, who was born and raised in downtown Los Angeles. She is a “forever teacher” who is no longer in the workforce due to her diagnosis of ankylosing spondylitis (among other comorbidities). Currently, she lives with her parents and is learning to manage her illness as best she can—one moment at a time.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over twenty 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:

Full Episode Transcript: 

[00:00:05] Cheryl Crow: I am so excited today to have Gittel and she’s gonna be the first person to be in the Five Timers Club on the Arthritis Life Podcast. This is your fifth time, welcome back!

[00:00:21] Gittel Aguilar: How exciting. Thank you for having me.

[00:00:24] Cheryl Crow: Yay. Thank you so much for coming again. And it’s just, it’s wild to think that your first appearance was on episode 36 of the podcast in 2021, and that was a poetry reading.

So that was an event, the live event that we did in the thick of COVID, and then episode 63 From Overwhelmed to Confident, which was with Camille, our friend, who was in the, at that time, called the Rheumatoid Arthritis Roadmap, I believe . It was 2022 and then 2023 did your first solo episode, What’s in your Coping Toolbox and Overcoming Ableism and more?

And 1 72 Redefining Thriving, where we had a group discussion about the Rheum to Thrive program.

[00:01:05] Gittel Aguilar: Oh, that one was great.

We all got to just gush about how meaningful and impactful and powerful and everything this group has been for us. I love that episode. That’s a good one.

[00:01:15] Cheryl Crow: I know. I need to listen to it again. It was so great. Well, and you know, today we are gonna be talking a lot about mindful social media use and how we find balance in that.

But just to do a quick introduction for those who might not have listened to those previous episodes. Where do you live and what is your relationship to arthritis?

[00:01:34] Gittel Aguilar: All right. I’m gonna try to make this brief, but I make no promises. I currently live in Southern California. I live with my parents in Lake Elsinor.

My two major diagnoses are Crohn’s disease as well as ankylosing spondylitis. And then it took me a long time to realize that ankylosing spondylitis was in that umbrella of inflammatory arthritis. And ru what is it?

[00:02:01] Cheryl Crow: Rheumatic disease.

[00:02:02] Gittel Aguilar: That’s the one. Rheumatic disease. Yes.

All of these terms, right? Like I just learned about autoinflammatory versus autoimmune and all of these terms that I’m understanding for myself, right? Knowledge is power. But yeah, so I have those two big ones. The one that allows me access to Rheum to is the ankylosing spondylitis.

One, that’s the one where I can relate to everyone. But we all have a lot of GI issues as well. So, you know, Crohn’s helps me relate as well. And let’s see, that I’ve had health issues since I was like 15, but I didn’t get formally diagnosed until I was 30, which I do feel is kind of common around 30 to get diagnosed for some reason.

And then, I am managing my diseases through biologics and DMARDs and more vocabulary that I had to learn. Right? So, right now I’m actually on the biosimilar for Remicade called Renflexus and then the DMARD Methotrexate, which you helped me when I had to switch from oral to injections to the moral support and solidarity to inject myself with the methotrexate.

[00:03:09] Cheryl Crow: Yes, that’s a big transition for people, their first ever self injection. So my, I applaud you ’cause you did yours on live, on Instagram live, and that could be a good example of positive social media use.

[00:03:22] Gittel Aguilar: Exactly. Using it for connection.

Exactly. I’m like, for me, it was almost one of those things where I was like, I just need someone to like, I need to be pushed into the pool, but I need someone to either be already there or holding my hand or something.

I can’t do this all by myself. And having you be there, someone that I felt was my guru, because you’re the founder of the support group and also because you do so many methotrexate injections on your Instagram profile and stuff that like, it felt like why not do it with a pro? You know?

That was awesome.

[00:03:55] Cheryl Crow: Yeah. Yeah. No, I was, I was very proud of you. I know you’ve had very many, ups and downs over the years and you’re also, I’ve said a lot in the past about the Rheum to Thrive, you know, I call it an educational support group program or a self-management program. It’s really a hybrid program, but one of the things that’s been so neat for me, looking back on, like the five year anniversary of it this year, is that it really has been quote unquote co-created with the members.

In the sense that, over the years, I’ve taken the feedback from various members, and I wanna give you now on the record credit for giving me some great ideas and iterations, especially from your background as a teacher that you’ve helped me shape and mold the program over the years, and it’s been really amazing to watch it grow.

So, thank you. Oh, sorry, was there anything else you wanted to say about like your overall like relationship to arthritis or how maybe some people who may, might have listened to your episode a few years ago, might be wondering like, how, how is your ankylosing spondylitis right now? Is it pretty low disease activity or flare?

[00:04:59] Gittel Aguilar: I’m actually pretty lucky that, it’s pretty low to the point that my rheumatologist actually wanted me to go on a drug holiday a little while ago. And I thanks to, to the Rheum to Thrive actually, that helped me, like problem solve and figure out how I really felt about that. I realized I wanted to be in a more empowered place before we do that.

I want, and what I really mean by that is I’m in physical therapy and I want to be physically stronger before I start messing with the drugs and seeing what the different effects might be. But it’s so far so good knock on wood that these medicines actually do work for me.

The main fact that I feel like I have latched onto and why it has actually caused me a little bit of hesitation to now get off the drugs, even though it took me a long time to get on the drugs.

Because learning that, the medications help halt the progression of the disease that I have. So it was hard to wrap my mind around wait, so now you want me to go off of a medication that’s halting the progression of my disease? Aren’t, doesn’t that mean I’m taking the risk of the disease?

Like of either me having more fusions like I’ve had or you know, anything like that. But that, that’s kinda like the balance with everything, right? Like the, we always call it the risk cost. What is it?

[00:06:20] Cheryl Crow: The risk, cost benefit analysis.

[00:06:22] Gittel Aguilar: That one, right, the risk benefit analysis. Yeah. And we’re always like talking through the pros and the cons.

And that’s actually my favorite thing about our group is that everyone’s just well this is how it worked for me. This is how it happened for me. And we get to hear each other’s stories knowing that just because that’s how it happened for you doesn’t necessarily mean that’s how it’s gonna happen for me.

But it’s also good to know just these are the different possibilities of things that could happen and so that I feel has been extremely helpful to just feel, I’m gonna use that word again, to feel empowered in my decisions, right? To feel okay, this is what I’m doing and this is why I’m doing it.

Not just because the doctor said that that’s what they wanted for me, but because this is what I want for myself as well, you know?

[00:07:11] Cheryl Crow: Mm-hmm. I love that. Yeah. And I just, for people listening it, who might be going through something similar, it is possible that people who get into a state of remission on their medications, they’re, you know, I don’t think that most of the rheumatologists I’ve learned from don’t exactly understand how or why, but sometimes people need to stay on the medications long term because every time they try to wean down their body immediately starts flaring up again.

But other people, they’re able to wean down on the medication and sustain that remission even either on lower amounts of medication. This is commonly done with methotrexate or on the cases of the biologics, which tend to be like kind of not have a lot of wiggle room depending on the med.

They might be able to titrate down on the dosage or frequency or wean all the way off and sustain an unmedicated remission. And I think it’s like sometimes the medication puts that disease, it’s quiet those cells that are going over and overdrive, but again, other times those overachieving cells just come right back out the minute you hit the medicine away.

So I can see how, it’s really up to you and your conversations between you and your doctor, but it’s up for you to say what the risk and benefit, the risk benefit analysis for you. I think in the case from the doctors, they say, if you don’t need to be immunosuppressed, we would want you to not take immunosuppressants. Because then your immune system’s going to be more robust.

[00:08:41] Gittel Aguilar: That is exactly what my rheumatologist answered to me was I was like, so what’s the pro here? Because again, the, the detail that I had latched onto was the drugs are gonna halt the progression of my disease. So I was like, so, so what’s the word he is like, for you not to be as immunosuppressed?

And I’m like, oh yeah, that would be a good pro.

[00:08:59] Cheryl Crow: Yes. Yeah. Well, I think this is just such a good example to patients listening that like it really is when we say it’s a journey like that- ups and downs over the years. That’s really true, right? Because when we talked to you earlier, you weren’t in a state where this was even on the table.

So just know if you’re in the newly diagnosed stage, you know, it’s something where you’re gonna have to be kind of flexible over the years with, with these ups and downs.

I, I laugh when I say the word flexible ’cause it’s not the easiest thing for me at times. I just want, I want to just know the answer and be able to cling to it and not have it change, but apparently that’s not how life works.

[00:09:35] Gittel Aguilar: Oh, I still remember one of my first therapy sessions being like, I just need to know when to quit and when to grit. Let me know, am I fighting this? I will fight. Am I quitting? I will quit. Just let me know which one and then I can do it. But it’s yeah, that’s, that, that’s how life is with that.

[00:09:52] Cheryl Crow: Yeah. We get to that point with the, with the group too, where we talk about like, when do we accept and adapt to what’s going on? And then when do we, again, try to go into our fixing problem solving mode? And you know, I know we’ve talked a lot in the past about solvable problems versus perpetual, which I’m sure will come up again here too.

But I did wanna start going into, like delving into this topic of the day, which is how to use social media mindfully, or how to use social media as a chronic illness patient in a way that’s gonna be maybe helpful and not harmful.

Take the floor. This is your time to go on your soapbox note or share whatever.

[00:10:26] Gittel Aguilar: Oh, I know, right? Let me, let me perspective, get this over. Yeah. Yeah. Okay. Get my, get my bull horn ready. But no, yeah, it actually reminds me, ’cause it’s one of the things that drew me to your group, as we know, is the acronym, right?

The, the fact, the Rheum to THRIVE. And teachers love acronyms so much, and so I’m gonna bring myself back to my Ms. Aguilar days in the classroom, you know?

And for me, the, the T in Rheum to Thrive is tools for pain and fatigue, right? And using those tools. Well, when I used to teach I was a seventh grade teacher.

I taught reading, writing, history, and I also taught health class. And when I taught health class, I would teach the unit on drugs, ironically, or funnily enough. And I would say it’s not that drugs are evil. It’s that we have drug use, we have drug misuse, and we have drug abuse, right? It’s like you can use it if I have a headache, you know, I’m gonna take some Tylenol, I’m gonna take some acetaminophen.

That is a drug that you are taking for it to affect your body, right? You can misuse it in terms of I did the wrong dosage of this, right? And especially for us oh my gosh, how often? Like I took the wrong pill. You know, so, okay. And then there’s like abuse of it, right? Where you’re just like, you are doing harm to yourself.

Like you’re it. This is not helpful to you whatsoever. And so using that same framing, I think about social media as a tool, right? And this tool can be used, can be misused and can be abused just in that same way, right?

[00:12:05] Cheryl Crow: Wow. Yeah. I love that framing.

[00:12:07] Gittel Aguilar: Yeah. So when I think about, okay, what is that tool? What are you using it for?

If it, if the first part is the use, right? Then what’s the use, what is the point? What is your goal? And a lot of times, especially with social media, the goal is to connect, right? I wanna connect with people. I wanna know that I’m not alone in feeling this way, so I’m gonna express myself. And then getting people’s likes and comments and things like that let me know.

And sometimes I get direct messages from people that don’t feel comfortable liking and commenting, but directly message me saying thank you so much for saying this truth like that. And, and I have those moments of connection with people, and those are the beautiful things that social media is for.

But one person’s connection is another’s isolation, you know? And, and sometimes social media can actually be misused or even abused in a way that ends up making you feel more isolated rather than connected, you know? So that, that is also the part, ’cause I’m like, if the goal of social media for me is to connect virtually or to have a soapbox, right?

And, and talk about something that’s important to me then if that is the goal, then it helps me to use that tool more intentionally, right?

And to I mean, I am laughing because it’s like, it reminds me a little bit sometimes though of like when you go to a room and you’re like, wait. What was I doing here? You go to the, the kitchen, the, the fridge, you open it. What was I gonna get? Right? And you have that like almost a brain. I think that’s the closest to like brain fog that you, maybe you can describe like everyone’s gonna relate to and understand this moment where it was here, my brain was functioning and all of a sudden it just sat and now I don’t remember what I was doing.

But sometimes that does happen with social media for sure. Right? Yeah. Where you just open it and you’re like, wait. There was a reason I was opening this up because I wanted to connect with someone because I wanted to check out some, like what was the goal between what was I doing? Not a mindless, don’t go to the fridge and mindlessly don’t go to the, the, you know, and mindlessly scroll.

It’s like what is actually your intention here? And that also reminds me of speaking of the Rheum to Thrive, the toolbox and all that. And talking about when do we use our tools? Oh, no. Brain fog. It just hit me. There was a reason I was bringing all of that up, and right now it just, it just slipped my mind.

Oh, maybe there’s the, you go with the intention to use your tool, and then you’re like, why am I in this room? It was like supposed to be, yes. Yeah. It was like, what was, yeah, what was the intention behind this tool? What did I need it for? You know? And even then, sometimes it’s just a really good check-in for yourself too, where you’re just like, yeah, really?

What was I doing? What, what is, what is my purpose right now? Is my purpose to, does it make sense for me to connect with people? Or does, is this actually a time that I just wanna be by myself? You know? Like I, I actually don’t feel like, I don’t feel like socializing on social media right? Like that that is another thing that people don’t think about.

The fact that we socialize on social media. Like I sent you this one thing that said you know, something about people criticizing you for being on social media or, or that kind of thing. And it’s but my friends live here. Yeah, right. Like where my friends are. Yeah. This is where my friends are.

And it’s it’s true. This is, this is what keeps me from feeling completely isolated because going back to the whole drug holiday and being immunosuppressed on immunosuppressants, you know, and, and just like the anxiety of that is very real and that struggle is very real. It is really nice to be able to socialize with someone without thinking, without having to battle anxiety and without thinking in the back of my mind is this a moment?

Am I getting exposed or is am I gonna be, am I gonna regret this later because I ended up getting sick, you know? And instead it’s no, I get to be fully present in the zoom room. Also really good for when I’m in a flare or anything like that and I’m very uncomfortable. How many times have I gone to group and I am laying down, I am horizontal.

Sometimes we don’t even turn on the cameras because we’re just like, I can’t be seen, but I still want to be present. I still wanna be here with everybody and it’s just such a great way to once again, connect with people virtually, even if I was about to say something, that that would’ve betrayed my entire point.

Say even if it’s, even if it’s not real. And it’s well, that is the thing that people will say oh, social media is not real life. And for me, when I see that, when I come across that first of all, it’s a red flag where I’m like, oh, okay. Who that person is probably a jerk online because they don’t see this as real life.

They don’t see these as real people that they are interacting with. So they are taking liberties and making it like just doing whatever, saying whatever without a filter, you know, because they think it’s not real life, you know? So I’m like, Hmm, yeah.

[00:17:17] Cheryl Crow: Yeah. I, I so agree. , I like to think back maybe from a historical perspective, like about, you know, I do understand that, that there, the selective algorithms, and there’s certain aspects of technology today that are truly so different than any other technology in the past, but let’s just think about, you know, did you know that when they first started the printing press started being able to print books that, I’m sure you probably did know this from being a teacher, but the teachers were furious because they felt that students would no longer, they would lose the skill of memorization because they’d be able to look at a printout and what they were reading or that, you know, when telephones first existed, it’s oh no, we’re people are just gonna be on the phone and never socialize in real life anymore.

It’s when we had these panics, every time there’s been new technology again, I do think, that there are qua, quantitative and qualitative differences about things like AI and the the algorithmic nature. Now, it’s not just like you take a newspaper and you put it online, and we all are still in the same container of information with the same small set of, you know, curators of that information.

Yeah. Problematic as they may have been, now it’s just I think one of the things I think is the most perilous about, you know, if we’re talking about the negatives of social media as a patient or virtual environments, is the, the algorithms that put you into a bubble where you’re only ever hearing an echo chamber of the same potentially valid information or the same potentially invalid misinformation.

[00:18:53] Gittel Aguilar: You’re completely, you’re, you’re still with me. ’cause I’m like, and that is the, that’s an extra point for why it’s important to use social media mindfully as opposed to mindlessly, right? To be a critical thinker, especially now in the world of ai, like, how many videos and things do we see that it’s oh, this is ai, this isn’t real.

Right? And you’re just like, oh my gosh, this looks. I totally got tricked by the bunnies on the trampoline. There’s a tra bunnies on trampoline video. It’s ai, it’s not real, right? And that’s when it’s okay, that’s not real. Like social media say, like dismissing it as that’s not real life, you know?

I’m like, well then what? What about me expressing my very real feelings on this thing? You know, I’m a real person. I’m real life. But then it’s like AI is taking it a step further of no, that really is not real. That’s artificial. That is the whole point of artificial intelligence.

[00:19:45] Cheryl Crow: Yeah, no, I mean, somehow I figured out the bunny one, but the bunnies and the trampoline, but there’s other ones where I’ve definitely been lead led astray that that’s a whole being able to, the deep fakes, being able to take someone’s voice and likeness and that whole thing is just terrifying. But at the same time, we just, every one of the best things about the human species is that we adapt. We’re very, very, very adaptable. And that’s what we just, we have to do.

I’ll say from my own experience on social media, I think one of the hardest things for me is, and I love your opinion on this you know, you’re saying using it as a tool.

I might have an intention going on to social media and how I wanna use it and then I get distracted and it’s like squirrel! And then, and unfortunately the algorithms are so good at presenting things to me that I am gonna be willing and interested in going into and, and clicking, and clicking and clicking that, all of a sudden it’s become a time suck.

And even though I’m so mindful, I’ve tried different strategies, it’s still been hard for me to actually implement just being totally honest and humble here. I’ve had stages and booms and busts where I’ve been really mindful and really good about boundaries, and other times I just totally backslide in it.

And I’m, I’m wondering if you have, if anyone listening is like me, if you have any tips for us or anything that you, if you’ve stuck with that as well.

[00:21:04] Gittel Aguilar: Oh, definitely. Yeah.

Oh, a hundred percent. I, I think that just like with everything oh, one of my favorite metaphors for this actually just is just like with everything, there is a balance.

There’s a, a, a balance. Oh, here’s another Ms. Aguilar is that I used to say in the classroom all the time moderation is key, right? Like we tend to go one extreme to the other, and it’s like actually that Goldilocks moderation is key tends to be in most cases where you wanna be. Right? Not too hot, not too cold.

Like not, not those extremes kind of a thing. Yeah. Yeah. And there are like a lot of tools that do help you with that mindful soc mindful social media use. So for instance, if it’s a timing thing, right? I know that there are actual like apps and settings and stuff that can strictly be like, you are only allowed whatever time you gave yourself, right?

If you decided 20 minutes, if you decided an hour, whatever and that’s it. And after that, it locks you out of the app for the rest of the day and it won’t let you back in until the next day. And you know, if that’s a tool that works for you in order to get you to have mindful social media use, then cool that works for you.

But just like with most things, I don’t think it’s a. First of all, it’s definitely not a one size fits all, but it’s also not like a one time solution. And then this is gonna be the one thing that changes it all. And then once I’m there, it’s gonna be, it’s no, this is gonna work for a while. And then yeah, I’ll fall off the wagon, or it’ll stop working for, and then I’ll have to figure out another strategy.

And like that for me, returning to the T of the toolbox. Mm-hmm. Like that for me is the importance of having so many different tools, because then it’s not just the one. That that you’re depending on. And if that one doesn’t work, oh no, now you’re lost. And instead it’s well, okay, that one didn’t work this time.

I’ve also heard of the strategy of, oh, I sent it to you. Actually, it was a picture where someone made like a whole like dollhouse for their phone. Oh my God, that was so cute. Yeah. I was like, this, this might work for you, Cheryl. Because I was like, it’s just so adorable. And like you decorate the room and everything and then you put, you tuck the, the phone in at night, you know, you, or not even at night, but just whenever you tuck it into the dollhouse and you’re like, okay, I’m just not gonna use it for a little bit.

Whether that next little bit is too, watch a movie to spend time with my family, to take a bath, to cook something. Like whatever the case may be, that you don’t want to be plugged in for that you want to. Escape social media for, for a minute. Escape just your phone for a minute. Whatever strategy works for you.

Cool. And if it doesn’t work, try a new one. You know, like that’s, that flexibility is something that I learned from our group as well, where it’s yeah, these strategies aren’t gonna always work. They’re not foolproof and they’re not gonna work for, just these medications aren’t gonna work forever.

What? You got lucky and had 11 years for one of yours.

I had six years, but I’ve talked to people who’ve had 14, 16, 18 years.

[00:24:03] Cheryl Crow: Yeah, yeah, yeah, yeah.

[00:24:04] Gittel Aguilar: And I’m like they put me on Remicade in, I think at the end of 21 and switched me to Reflexus, but it’s like the same formula basically. And I’m, I’m still going strong on it, right?

Like they did antibody tests and stuff like that. Which again, I wouldn’t have even thought of if people hadn’t mentioned that, you know? But anyway so. I forgot the point of bringing this up,

[00:24:27] Cheryl Crow: Being flexible. I actually love that connection that we’re having to be flexible and pivot as things change.

The strategy that works today might not work tomorrow. I, in, in the case of social media, I, a week or so ago, or maybe a month ago, I found this Old Relic.

It was like my iPod. It was before I had an iPhone or even like this, a smartphone. And, and it was like 2010 maybe or 2011, and I hadn’t opened it since then. I plugged it in sure enough, it still turned on and I, it was so interesting ’cause I remember, you know, it was just like a nice little fun- I would look at it on the bus or something like that on my way, you know, to OT or listen to music on the way to OT school.

And it had eight apps on it, you know, I had mail and it had a couple games and I had my Kindle and it was like, maybe like before being like, I’m failing to, and you’ve heard, we’ve talked about this in the groups before, but before saying we’ve talked about like organization and like staying on top of things and is it, am I failing to quote unquote be organized or am I failing to manage my you know, tasks on my social media also ensure that you’re not just simply trying to do too many things!

If you have too many accounts or too many social media, you know, let’s say platforms that you’re on and you’re like, I feel like I’m always behind ’cause I can’t respond to all the messages and comments.

I don’t know how really big influencing people do this because I only have, you know, I have, you know, 20,000 followers on Instagram. And even that, that’s a for me, that’s a lot to, to manage and stay on top of. And sorry, this is now becoming about like kind of me, but, but point being that like, make sure that you are not for, well the first thing we were saying was pivoting and being flexible with your strategy over time.

And then also is there a way to like you think about it as or like organizing a home, you know, like it, there’s, if you have too many things for the physical space of your house, you just need to cut some of them out. And like on social media, if you’re trying to do too many different things, you’re trying to like, make a new video every day and make 500 friends like every minute, you’re not, that’s too many things.

[00:26:25] Gittel Aguilar: And again, it’s and what is the goal? Is the goal for outreach? Is the goal to connect with people? What are and are, how are you achieving that goal?

And something else we have talked about group that it talked about in group that fits with this right now is this idea of trying to fit the tool instead of the tool fit you. Instead of you using it, like you trying to be like, like I think the example we used was like the, I’m gonna wake up at five in the morning and blah, blah, blah. And it’s oh yeah, you’ve never done that before in your life. Like why? Why do you think that would be the strategy that works for you?

Are you a morning person? Does this even make sense for you to try? You know? Right. But it’s like one of those things where it’s or are you almost like looking for a way to self-sabotage yourself so that you can prove to yourself that, no, see I tried it and it doesn’t work. And it’s but did you really, because I feel like you didn’t, you didn’t put the good faith of the tribe.

This is like seventh grade, Ms. Aguilar come here. Did you really though come be honest with yourself here. You know, yeah, like did, did you go into this knowing that this probably wouldn’t be the best strategy for you, probably wouldn’t be the best tool for you? Or did you actually think this might work for me.

This was one that actually could be doable, you know?

[00:27:39] Cheryl Crow: Yeah. And I think another thing that you brought up before we started recording I thought you, you used a phrase that I think is so helpful, whether we’re talking about social media or quote unquote, you know, in-person real life interactions is comparisonitis.

So what is comparisonitis and why is it important to think about for, especially for people who are using chronic social media to connect with other people with chronic illness?

[00:28:04] Gittel Aguilar: Well, yeah, and especially with this kind of stuff, right? Where you’re just like, well, if so and so said that I should just disconnect and unplug and they’re able to do it and I can’t, and now, and it’s no. So like the common phrase that you hear is comparison is the thief of joy. You know, and for me personally, that always made sense in terms of not comparing myself to other people because it’s like, well, yeah, we’re living completely different lives with completely different experiences, you know, like I, why would I expect us to have similar it feels apples and oranges to me, you know?

And so for me in the past, comparing with my past self was the motivational thing, right? Oh, look, past, past me wasn’t able to do this even a little bit. But look at present me, you know, look at my trajectory I’m growing and when your progress tends to be linear and that kind of thing it, it’s motivational.

But I often will come across things like, you know, be grateful for what you’re going through now because one time once this was what you wished for or whatever. And I’m like, I promise you this is not what I wish for. Miss this chronic illness life is, is difficult. And if I had a say in it, like it would look very different than what it is now.

But so like for a while the thief of joy was even just comparing with my past self, right? I used to be able to do this. I used, you know, what, from like an aging point of view, I think that people will relate to this as well in terms of oh yeah, I used to be able to like twerk down to the floor and like to the windows, to the walls and all that stuff, and now I can’t.

And it’s yeah, we’re, we’re definitely, we have that similarity and we can relate on that level, but it’s also just it’s a whole different boat that you’re in when. The reason for your changes is not something that you signed up for. It’s not like a, a decision that you made. You know, it’s not you just made a beautiful reel about this actually.

It’s not your fault, right? Like us getting sick is not our fault. Like even though for me I’m like, oh, this, I know that song. ’cause that one for me comes, stems from an illusion of control where I’m like, well, if I’m the one that broke it, then I should be able to fix it, right? That’s how it works.

But it’s no, unfortunately, sometimes bad things just happen. You know, it’s not. That, because that’s the other cliche you hear a lot, right? Everything happens for a reason and it’s I’m trying to find the reason and it’s oh, the one that I’ve heard instead is turn your pain into purpose.

And it’s I’m trying to turn my pain into purpose, but it, that doesn’t mean that there’s a reason for my pain. You get me.

[00:30:44] Cheryl Crow: Like Exactly. And, and just because there was a reason for something to happen doesn’t mean that you had any control over stopping that thing from happening. There are risk factors for cancer. You can do everything that you can to not fall into those risk factors that are under your control, you know, on like genetic predisposition. You could, you can not smoke and you can, you know, work out whatever, but people still are gonna get cancer.

The sooner you can accept that, that the better. And, and I think that’s one thing that we’re using that, you know, again, talking about social media can be a tool for good or for evil. And we’re trying to use it for good, but you know that, that in, in a way it can remind you, it, it’s a vehicle for people to remind each other of that perspective.

And that thing that the, I just saw a video yesterday, I have to send this to you. You and I have a love language of sending each other memes and, and interesting videos. And I just saw a great one. It was a wheelchair user and I’m gonna try to quote it, but I will put it a link to it and I know I saved it, so I’ll find it a link to it.

It was an Instagram reel. And this, this guy is a okay, I have to just explain. So, quad in the, in if, if you’re a wheelchair user, quad means all four of your limbs are involved, quote unquote, in some way are usually, that means usually not always. It means that your, your legs are totally, you know, you can’t move your legs, but you can move maybe some of your arms, or you can’t move, move your arms at all.

Para means you’re paralyzed, just usually at the waist, and you can’t move your legs or feel your legs, but you can move your arms and feel your arms. So as you see the people with, you know, adaptive sports like basketball, wheelchair basketball, where they’re like, whoa, they’re moving their core, they’re moving their trunk, they’re moving their everything except that their legs aren’t moving.

So what he, the guy said is he goes, quads wish they were paras. So people with all four limbs involved just wish they, they only had two limbs involved. Paras wish they could walk. Walkers, wish they could run, runners wish they could be bodybuilders and bodybuilders wish they could be God. You know, and it’s like, where does this stop?

Right? Everyone just wants the one, or I think he said bodybuilders, wish they could be Arnold Schwarzenegger. Arnold Schwarzenegger wishes he could be god. It’s like we be careful, right? It’s like the person with RA and me, me gastroparesis and RA wishes I just had RA in that gastroparesis the person when, you know, yeah, it’s each, everyone wants a little bit better than what they have.

And we have, that’s the human, that’s the flip side of the coin of the human, what we call like human nature, that we always want more, which is why we’ve been able to evolve and do wonderful things over time. But the flip side of that is that we have a hard time being settled and satisfied with what we have.

[00:33:24] Gittel Aguilar: So. Yeah, because on one side of the coin, right, you think to yourself like, well, it gives me the motivation, right? It gives me ambition, it gives me something to shoot for, like that kind of thing. But this is this, oh, this goes into the question that we’ve been talking about where I’m like, it’s important part of being mindful about things is checking in with yourself, right?

Being mindful is like, how does this make me feel? How am I like, and oh my gosh, as a chronic illness person with ankylosing spondylitis, like I’m constantly checking in on the physical part of me, right? Like, how does my back feel? Should I sit down for this task? Is there a way I can accommodate or be flexible about this? Do I have to get it all done in one sitting or can I get it?

You know, and just constantly checking in in that way for the physical aspects of things, but also for the mental part of it, right? Checking in in terms of, is this helpful to me or is this harmful to me? Is it effective in helping me reach whatever goal it is that I’m actually after right now?

Right. So if the comparison that you’re doing is in order to motivate yourself in order to achieve a goal, and it’s not to put yourself down, it’s not harmful. It’s actually helpful in that way. Well then more power to you, especially for like competitive people, comparison actually really works, right?

Like it, it, it’s a motivating factor, you know? But that’s also part of the whole knowing yourself and knowing is this motivating or is this self-sabotage? Is this actually something that’s helping you or is this actually making you feel worse and giving you more reason to put yourself down and say, I can’t do this, right?

Instead of figuring out a way that you can, ’cause maybe you can do it with help, or maybe you can do it with accommodations or with modifications, or maybe you can do it if you spread out the task over a long period of time, as opposed to expecting yourself to do it all in one go, right? Like just different ways to be flexible.

But those come from checking in with yourself first and saying like, how is this helpful to me? And that actually reminds me of what you were saying earlier in terms of being organized and who do you surround yourself with in Spanish? We tend to say which is tell me who you’re with and I’ll tell you who you are, kind of a thing .

And so when it came to social media, that was something that was happening was I was realizing like how much compare, especially when the pandemic first hit and the lockdown and everything. Well, well, actually, when it first happened, it was what you and I were reminiscing about at the beginning of this chat where like everyone and their mama was quite literally online and there were just so many options of things to do online. We could play games, we could do dance parties. There were just so many different ways to connect virtually, right?

Because we could not connect in person and we needed wow, did I finally understand the difference between social and emotional health? Because in my head, those two used to be grouped before and it was social emotional health. And now it’s no, no, no. I definitely understand the difference between social health, which involves socializing and being in community and being with people as opposed to emotional health, which is your inner world. From Rheum to THRIVE. Right? And doesn’t have to necessarily involve anybody else but yourself, you know?

[00:36:42] Cheryl Crow: They co-influence each other, probably if you’re more hyper social like I am.

[00:36:46] Gittel Aguilar: Yeah, yeah. That kind of, that kind of thing. Yeah.

[00:36:48] Cheryl Crow: And you’re like, I always think about that. If you’re more extroverted, then potentially, or maybe it’s my personality, not just extroversion, but my attunement to others and my desire to feel harmony in all my social relationships. Then those social relationships are really important for my emotional health, whereas for other people, that may be maybe value feeling more independent.

And you know, I’m not gonna be affected by other people ’cause I’m my own island. And that’s, again, I was jealous of people like that because I’m like, I wish you know that.

[00:37:16] Gittel Aguilar: And that’s the thing I’m like, if that works for you, if that’s helpful for you.

If the idea of being your own island gives you relief, gives you like like energy gives you like like empowerment, sweet. You know yourself. You figured that out for yourself, and you now know how to keep your peace and how to hopefully maintain your boundaries and how important it is to tell people no, because being alone is very important for you.

But on the flip side, for extroverts like you and me, ’cause I constantly will say I am an extrovert forced into an introvert’s life. It feels extremely isolating to be by myself.

[00:37:51] Cheryl Crow: Yeah. I’m sorry, I don’t mean to laugh.

[00:37:52] Gittel Aguilar: Yeah. Yeah. And it’s social media for me is like one of the, one of my outlets, like one of my, my ways, my windows into the, the real world.

And so to hear, once again, people say but social media isn’t real life. I’m like, damn. So the one little thing that I had, you’re now dismissing and saying that that actually doesn’t count because the way that you want me to count, I can’t count as anymore. Speaking of ableism, right? Like it’s a very ableist point of view to assume that everyone can access one thing in the exact same way.

And it’s no, actually there is a diversity of needs. And that’s the importance of inclusion, right? So like for, for instance, for me. And speaking of, I wish, ’cause that’s what you said earlier, I wish I could be red. Yeah. Like I wish I could be on the side of the people who were celebrating, like being forced back into movie theaters after COVID and who like only find medicine commercials annoying instead of activating, like I have to mute them or fast forward because I, I cannot listen to medical commercials, especially when they start listing all the side effects.

I’m like, ah, stop it. Stop it. You know? And it’s like I am obviously living a very different experience than other people. So back to comparison, like it makes no sense for me to compare myself to people who are living a very different life to me. And so, coupling that with the organization and back full circle to what I was saying at the beginning anyway, is that that’s when I decided to organize myself and actually create a public profile.

Yeah, so I actually have two media Instagram profiles. I have a private profile and a public profile. And part of the reason why was because, yes, now the online space and the social media world and everything was where I was now meeting people as opposed to people that I already knew in real life. And then being like, oh, let me follow you.

Like that kind of thing. It’s like now it’s like people that I’m meeting through Zoom oh, we’re gonna exchange Instagram handles or whatever. And I was like, how embarrassing. Like my private my private profile, like I will be crying on there sometimes. You know, like I talk about like hard things, like I, I’m expressing myself through my private profile and I didn’t feel comfortable giving that to people that I was just meeting.

It was different when it was like fellow chronic illness, people who would understand. But honestly, when I post things sometimes, like Normies or the muggles or non-disabled people. We’ll freak out and be like, oh my God, her life is so tragic. How sad, blah, blah, blah. And I’m like, I’m here trying to make a joke of this because if you, if you don’t laugh, you’re gonna cry.

You know, or whatever they say, say, I’m, i’m, excuse me. While I use my, yeah. While I use gallows humor.

Exactly. Exactly. And it’s so it’s one thing when I do that with people like my fellow Rheum to Thrive, people with, with people who are in the, know that whole, if you know, you know, kind of thing, right?

[00:40:48] Cheryl Crow: If you get it, you get it.

[00:40:49] Gittel Aguilar: Once you get it, you get it. Yes.

And so, and that was such a re big difference too, was like friending so many more chronically ill people through my private. Where I was expressing myself and like my journey and the ups and downs of navigating chronic illness and now having people, like having an audience that I was expressing myself to that understood, right, that would write back messages like, I know exactly what you mean, or like that kind of thing, as opposed to people who didn’t reply whatsoever or who would say things like, you know, toxic positive type things, or just stay positive and blah, blah.

And it’s I just need to express my reality and I realize that my reality seems very negative to you. And so now I sound like I’m being negative, but honestly, this is, it’s either this or be silent and repression and everything, and I’m not gonna do that. So instead what I did was create a public profile.

So that my public profile was the one that I was friends with everybody and their mama. My public profile is the one that I give to people when I first meet them to be like, oh, okay, this is the more curated one. This is the one that’s more mindful and I think a little bit harder about what I’m posting.

I also will do the accessibility image descriptions and like I will basically spend more time and be more mindful about the things that I post via my public profile than I do on my private profile profile. My private profile is like a journal where I express myself and I am so blessed to feel the solidarity from other people.

My public profile is where I want to spread awareness and support and small businesses and, you know, talk about news that are, I think is really important and affects me and, I noticed that that really, really helped with my mental health because sometimes I’d be like, you know what? I cannot with the real world, I cannot with people going out to concerts when I’m like freaking out that I might die from COVID.

You know, and the comparison is the thief of joy. These are the last things, the last images I need to be seeing. You know, this is not right. It’s not nothing against you. Like you live your life. You take the risks that you’re gonna take. You know, I realized that people wanted to go back to normal and now that’s the Russia that we’re in, you know?

But just because that’s what everybody else wanted doesn’t mean that’s what works for me. Once again, is this helpful or harmful? And it’s very harmful to me to try to ignore myself and, and make myself uncomfortable for the sake of other people’s comfort, because they’re traumatized by seeing me in a mask as opposed to like my trauma of being immunosuppressed on immunosuppressants during a global pandemic, you know? Mm-hmm. Mm-hmm. But yeah. Anyway, so when that happens, and I’m like this too much, I, I, I can’t, with the normies, I can’t, with that world that I no longer fit into, I go into my private profile and I just stay in my private profile where I am friends with fellow chronically ill people, and we have very similar realities.

And I know I’m most likely not gonna be activated by someone’s post on there, you know, or

[00:44:07] Cheryl Crow: gaslit or,

[00:44:09] Gittel Aguilar: Yes.. Or you have all that toxic positivity like come at you, you know, because sometimes that happens and you’re just like, I wasn’t expecting this. I just wanted to feel connected to people. And now the opposite has happened, and now I feel extremely isolated in my tragic reality, you know, instead of feeling connected and to the solidarity of other people, you know?

Which is actually another thing as to why I am so grateful for, Rheum to Thrive discord group.

[00:44:38] Cheryl Crow: Ah, yes. Let’s talk about Discord as an alternative to social media.

[00:44:43] Gittel Aguilar: Exactly. Yeah. ’cause when we talk about social media, so many people think about Facebook and Instagram and we did have a Facebook group for a minute, you know, but so many people were like, I’m not on either one of those things, but I still wanna be connected to everybody and I still wanna, you know, laugh at the, we were just talking about sharing mees for the memes and stuff like Yeah, yeah.

So it’s I still wanna be connected in that. So having our Discord group where we’re able to be in community and virtually connect as I keep saying that, that’s, that should be the goal. That should be the purpose of a mindful social media use, right? Is to connect virtually with people. And I love that we do that via our discord.

And I love that because we are all chronically ill people. We all have, we, nobody has the expectations for an immediate response or anything like that. You know, like it’s just, we all understand that it’s gonna happen when it happens, you know? And none of us are taking it personally. None of us are saying like, oh, they didn’t want to respond to me.

And that’s why it’s no, I understand that life just happens and you’re dealing. With it, you know.

[00:45:47] Cheryl Crow: Well, and I just wanna mention one of the reasons I moved, so the, the Rheum to THRIVE, the, you know, four month long program, typically four months, sometimes with holidays it’s five months. Where we have the initial cohorts and then the Thrive graduates, which is the ongoing year round group for people who’ve done the initial group.

We, yeah, I used to have a, a Facebook group for each one, and then I started midway through 2025 saying, you know, no people aren’t on Facebook anymore. There’s all the concerns about privacy as well. So Discord is basically like a private online, you know, they say it’s a dedicated online space akin to a virtual clubhouse where groups of people with shared interests can communicate and interact.

Through text, voice and video channels. And so it’s just, it’s still private to the people in the, in our, you can still make it private, just like there’s a quote unquote private Facebook group. It’s just a lot of, yeah, it’s, it’s been a lot. It’s a bit, it’s also a lot easier to organize like, as almost like a discussion board.

”Cause we can have, we have the THRIVE outline of the different topics where we can say, okay, here’s something I learned about this this week. Like tools for pain, tools for fatigue or relationships in so social life, let’s vent about this. Or, Hey, here’s, hey, here’s, you know, a badge I acquired today, my chronic illness badge.

I you know, explain my condition and I felt validated by the person that I talked to about it. Like that kind of thing. So discord, there’s also discord for that are like open to general populations. There’s one for Taylor Swift fans and, you know, ask me how I know about that one. But and, and so that’s a great alternative that you can feel more like you’re.

There’s a really specific purpose to it. There’s no at least in my experience on it, there’s not like a scrolling, like the thing that gets me kind of, yeah addicted sometimes, quote unquote, or like this in these, this thing where I think that five minutes has passed and it’s actually been like 15 minutes or something, or 20 minutes, where you’re just kind of like, just getting this weird, like mindless scrolling.

And one thing, one little tip that I’ve done in addition from switching to Discord, I also have tried use checking on social media only a couple times in the day and doing it from a desktop computer. ’cause when I’m on a computer, my mind is like I’m focused. Versus when I’m on my phone, I’m like kind of halfway focused.

I’m all over the place. So that’s another thing that’s been helpful when I remember to do it. Old habits die hard. Yeah. So that’s the other thing. It can be hard to, no, or it’s be hard to be consistent, but we then we have to say, okay, self-compassion, do the best you can with the tools that you have, you know?

[00:48:21] Gittel Aguilar: Yeah. And you check in with yourself about what worked about that? What didn’t work about that? You know, oh, putting a timer while I scrolled actually worked. As soon as the timer went off, it helped me realize I was wasting time on that and I needed to get back on task. Something I do for myself is I will write down, I literally have a note that says, hopes for today slash this week.

And I will write down what I’m hope, hoping to get done. What are my goals, basically. And so if my goal, right, like I’ll be like, oh, that’s right. I wanna. Answer so-and-so’s message. I haven’t done that yet. And I will write that down, like answer so-and-so’s message. And so the next time that I’m like checking in with myself what do I need to do?

And I’ll see answer so-and-so’s message. Go to my phone. If I get distracted, start the mindless scrolling. Yeah, no, what was I doing? And then I have a answer. So-and-so’s message. Oh, that’s right. There are ways to get things done and it’s not gonna be the same one that works every single time.

And it’s not gonna be, like I said, foolproof and guaranteed. But the point is like. Making it work for you, right? Like you’re not trying to fit yourself into the tool, you’re making that tool work for you. And if that tool, it works so great before, and for some reason right now it’s just not doing it. Not being hard on yourself for that.

That just happens sometimes, you know, like and, and sometimes just. Reminds me a little bit of people’s eating habits and stuff, you know? And it’s yes, especially with us, with our like restrictions and stuff where it’s I, no, I’m not supposed to be having this, but every once in a while, you know, I’ll risk it, you know, yeah.

You know, and, and I’m in a good mental space to risk it, you know, like I check my calendar and I’m like, well, I don’t have any appointments coming up, so if I get sick, you know, it’s not the end of the world. I have the time to be rotting in bed if I need to. I’m gonna risk it on the ice cream.

I’m gonna take those. And I feel like it’s kind of the same with social media sometimes, where I’m like, all right, well, I don’t have a purpose, but I don’t really feel like doing anything. And I am gonna mindlessly scroll. But even then as I’m saying that, I’m like. I have literally set up a bookmark of things that I want to watch so that when I have that itch of oh, I feel like mindlessly scrolling, I still curated something for myself.

And so I will go to that bookmark and just mindlessly scroll through the stuff that I already pre-approved for myself. A lot of this came from me getting very activated and, and like triggered by things, you know, and just being like, ugh, like opening up someone’s story and seeing them making fun of someone for taking precautions for COVID, you know?

And it’s it’s a loved one who tells me that they love me, but they’re making fun of someone. You know what? I’m just like, whoa, whoa, whoa. This is, this is a lot, this is not what I was expecting. You know, and trying to figure out okay, how can I make this work for me? Because one option could be, yeah, just get off social media, right?

Just delete the app. There’s ethical issues anyway, you know, that kind of thing. But like I said, then I’m like, okay, but I feel very lonely because like my friends are there, you know, like I, I, I like how many people actually still genuinely text each other at all, you know? I literally just sent my cousin a text this morning and I was like, I I think I’m gonna get back to handwriting you letters like we used to when we were kids, because I want to just check in with you, but I don’t want you to feel the pressure or overwhelm that oh, now I have to answer her message when I’m like, no, that’s, that’s not at all what it is.

I just want to connect, you know? And I don’t want the connecting to be stressful and I don’t want the connecting to be something that’s harmful for you or me. Especially when so many of my friends and family members have you little kids, you know, where I’m like, yeah, that little kid is taking your priority and all your attention and of course I’m not gonna hear back from you right away.

And nor do I expect to, you know,

[00:52:16] Cheryl Crow: yeah. That’s so, that’s so true. That’s so funny you said that about, about snail mail. ’cause I’ve been trying to do that too. Like I’ve been trying to be better about having certain hours of the day that are like screen activities, like whether that’s computer or phone.

And then, you know, it’s really trying to use the evenings to be, not, not to say we can’t use any screen again. It’s it’s how is it being used as a tool, like watching a movie as a family, watching a a TV show as a family is different Right. Than just being in our little silos on our. Again, the selected algorithms.

And, and, but I’ve, so I’ve been trying to think what were some of my hobbies in those quote unquote old days. You know, when I discovered that old iPod, like when I used to only do two things on my phone, you know, it was like, oh yeah, I like to make little presents for my friends. I like to send them cards.

You know, I like to, I mean, of course swing dancing for me was, has always been like a hobby that for the last 20 years and that’s been fun getting back into that, you know, figuring out, you know, if you’re trying to reduce it’s, yeah. The quality versus the quantity of the screen time. Sometimes the issue is a little both.

You know, it’s too much. And that you’re, the quality of your interactions on there is not serving the purpose that you want it to and so o but other times it’s just okay, you know, if I can I find a replacement hobby or activity. If you’re like, it’s the volume, it’s just too much.

I’m spending too much time on it in, in a mindless way, finding a different. Thing to do, or just knowing for me, like having like office hours for certain kinds of tasks does that structure gives me a sense of ease and I like having that. Versus other people might, like you said, it’s all the hour there, it’s helpful for you.

Other people might feel boxed in and they’re, they wanna be able to use it when they want. So,

[00:53:56] Gittel Aguilar: exactly. It’s like, how does your brain work and what, how, like what makes the most sense for you and what makes sense for you is not necessarily gonna make sense for me. You know, just because it’s oh, I found a way that really works for me, so, and now I want to tell everybody.

[00:54:11] Cheryl Crow: And it’s okay, well that might help some people, but other people that might not

[00:54:15] Gittel Aguilar: work for them at all. And that’s, yeah. Not to say that they’re not trying, that’s just means it doesn’t work for them and they’ll find, they’ll hopefully find a strategy and a tool that does, you know.

[00:54:26] Cheryl Crow: Right. Well, I am mindful also about time, but this is just such an important conversation and you know, you mentioned getting triggered on social media, and I think that is such a common experience when you’re using it in a way where you’re sharing your story and part of your story is your chronic illness. It’s like, it’s every time, what is it? Every time a child laughs at Angel gets its wings or something, what is that thing from, it’s a wonderful way.

[00:54:51] Gittel Aguilar: Oh, it’s from a, yeah. Every time a bell rings.

[00:54:53] Cheryl Crow: Oh, a bell rings.

Yeah. So it’s but it’s every time someone says they have rheumatoid arthritis, someone comes outta the woodwork online and is

[00:55:00] Gittel Aguilar: have you tried, have you tried yoga?

[00:55:01] Cheryl Crow: Yeah. Is I think there’s a lot of, I is, is it social media or is it just how humans are?

Right. Because that, that same interaction probably would still be, feel bad if you were in person, but it seems to, the volume and frequency that that happens is a lot higher on social media. What are, what would you say? I mean, again, you were just saying it all is so individualized, but if somebody is I wanna share more about my, my chronic illness, but I’m finding it triggering at times to talk about do you have any general other tidbits or advice?

[00:55:36] Gittel Aguilar: Yes. i’m like, it, it’s all about like I said, the first, the first part is checking in with yourself, right? What am I doing this for? Is this helpful? Is this harmful? What goal do I have? If it’s connecting, how am I connecting, et cetera. But the second part from there is okay, now I have to enforce my own boundaries about it.

If, if this is the tool I’ve decided to use, like we said the time or whatever okay, so enforce your own boundaries about it and that that’s something that only you can do for yourself. No one else can do it for you, you know? So then it’s okay, I noticed that. Oh, for, yeah. Like I noticed that when I, whenever I post about this particular subject the re the responses, the replies tend to get me a little triggered.

So my option might be to just not post about it at all, but now I’m not expressing myself and actually this is more harmful to myself. I really don’t wanna repress this. I really want to give this oxygen and sunlight and really just and especially again, for me, the thought that always keeps me posting is even if there’s just one other person that can feel less alone because of this, who’s oh my gosh, you get it too?

Oh, I felt the same way. Like that for me. That’s it., Just that one. So I’m like, okay, so what can I do? To make it work for me. So one option that I’m thinking to myself is I might turn off comments. I might say this is just a video that I’m putting up and I might even write in the captions.

No comments are, are necessary. You know, I really just wanted to get this off my chest kind of thing. Or I might even be very specific about the kind of comments I want. Right? So maybe not turn off the comments, but say only looking for comments of a solidarity nature. Please keep unsolicited advice to to yourself.

You know, like that kind of thing. And then the second someone crosses a boundary, delete that comment, right? I don’t need to, I don’t even need to read it. I don’t need to see it. I don’t need to reply, I don’t need, I already said what it was gonna be like, I don’t Right. Right. Feel the guilt of trying to appease this person or, you know, basically Yeah, like appease.

Their comfort at the expense of my own. Like that just does not make sense. It does not compute for me, you know? So I’m like, I. Yeah, that is my advice is that you communicate your boundaries and you enforce your own boundaries. Don’t expect other people to respect your boundaries. Just because you put it out there, right?

Like I, that would be nice. That would be great. The, in the ideal world, right? That’s exactly how it would happen. But no, the point is, I have my boundary, and if someone crosses it, if someone violates it, someone pushes up against it, then that is. When I get to choose to enforce that boundary and that enforcement is gonna look however it makes sense.

I have blocked people. I have muted people. I, social media for me is my world, right? Especially my private profile. That is me. I mute people’s stories as much. I, I will even be like, I love you muted. You know, yeah, it’s not personal. It’s not about you, it’s about me. And like I, this is this is kind of like the other side of that echo chamber algorithm that we were talking about, right?

But it’s like I’m making it work for me actually, because in my private profile, like I said, that’s where I follow the majority of spoons and stuff. So that’s the kind of content that I get to see more than anything.

[00:59:02] Cheryl Crow: Right. That is different than like a corporate entity whose main goal, right, is keeping your eyeballs on the app for as long as possible so that you will eventually click some sort of advertisement and make them more money. That is different than you as an individual human, with your own human brain saying I’m going to create help, help curate this so it works for me and choose mindfully who I follow, who I don’t, who I interact with, who I don’t.

I mean, people have said so many times, like social media can bring out the best and the worst of, of human nature. The internet in general. It’s not just social media. I think it’s the, especially people who have a anonymously the anonymity of it, the, the thrill. People seem to feel at times in you know, saying something negative or riling someone up and I was joking with my parents the other day, but it’s you know. Wow. I actually did find like a, a cure for being a people pleaser, which is being on social media. ’cause you really realize

[01:00:02] Gittel Aguilar: you can’t please everyone.

[01:00:04] Cheryl Crow: Yeah. You really can’t. And if the only thing that would please everyone is like to please everyone say nothing.

It’s you know, to to avoid criticism. I’ll find who said this, but there’s a great quote that I had to teach myself a lot, especially when I was first. On social media and being public about my thoughts and, it was, you know, to avoid criticism. Say nothing, do nothing, be nothing like, yeah.

[01:00:28] Gittel Aguilar: And even then someone will criticize you for saying nothing.

[01:00:31] Cheryl Crow: Yeah. And well, it’s also like this kind of perennial, for me debate of would you rather be right or happy? Yeah. And I really wanna be happy, but I depending on the situation, I often kind of would rather be right when it comes to, I think the things that I’ve had to have guardrails for myself around are like the endless kind of back and forth about whether there are some individuals who, you know, do like a natural, like me, it’s med, the medication.

The medication of it all. Yeah. Yeah, yeah, yeah. And also the kind of I actually think that the, the comments that are, that are the most heartbreaking for me to get, or actually when I post a video with the best of intentions and someone’s I feel worse after seeing your video. And I’ve come to realize that it is just, we just are gonna have, we’re humans that are gonna have our feelings.

And that’s not right or wrong. If I say, if I wanna post a video of myself swing dancing, and because my body right now is at a state where I’m able to swing dance and it brings me joy and someone else who has rheumatoid arthritis is upset by that video because they feel their perception and their perception is based on some reality that some people will look at that video and say this, this is a real situation where they’re like, I’m worried people will look at that video and think, well RA isn’t that serious because people like you are able to like dance with it, which is there’s so many like incorrect assumptions on that, but.

That’s true that some people, and one person even says, my husband looked at your video and says, said, I can’t believe she has RA. She’s moving so well. But it’s like a, you’re not seeing the systemic impact.. You don’t know that I have erosions on my joints. You don’t know that I have OA in addition to RA

You don’t know what the, how this is affected my, every aspect of my life from like fertility to like job choices, to marriage, to, you know, you’re just seeing me dancing. But but, so I think that, but, but on the other hand, it’s like, it’s been a life lesson for me. It’s like sad for me to be like, I don’t ever wanna my goal in life is to like, help other people and make them feel as empowered as possible.

And obviously not make anyone feel quote unquote bad, but there’s just no way to, to take effective action that never that and share my story authentically. That’s going to be beyond any reproach, you know, that’s gonna just please everyone. It’s just not gonna happen.

[01:02:59] Gittel Aguilar: And, and that goes back to the whole everybody is different, like even the same diagnosis.

We have different bodies and things will be different where it’s just again, will work for you. It does not guarantee that it’s gonna work for me kind of a thing. And it’s I guess instead of saying comparison is the thief of joy, sometimes it’s even like my joy is not the thief of your joy.

Just, just because

[01:03:20] Cheryl Crow: I, yeah. I love that

[01:03:22] Gittel Aguilar: this doesn’t take away from yours. Right? And, and if anything, I kind of wish that you could find joy in the fact that, hey, that this could be an option, this could be a possibility. Like you might find a medication that works so well for yourself there you are able to go back to one of your old hobbies.

And how fantastic would that be? Like I would not, what’s that word? I would not resent someone, or I would not like, wanna take that away from anybody because I really want that too. You know? Like I would love to be able to go back to one of my old thing and I was not even that physically active. I’m not a swing dancer soccer player,

[01:03:59] Cheryl Crow: Exactly. I wanna run a marathon now that I can’t. Dang it. You know, I was gonna run a marathon, I promise.

[01:04:05] Gittel Aguilar: Yeah. I just want the, I am like a cat. I just want the door to be open. I want the option of it.

[01:04:11] Cheryl Crow: Yes, yes. So true. And also I think this is really, this is really making me think deeply. I think you and I have both talked a lot about this idea of the very, very subtle ableism in the phrases of things like, you know, overcoming your rheumatoid arthritis or ankylosis spondylitis or having a normal life.

But you’re like, on the one hand I’ve always said I try to educate doctors and providers around there’s a little bit of a complication in saying things like, you can live a normal life with it. ’cause I know what you mean. The subject of that is that subtext of that is that you can do the things that you hoped and wanted for your life before this came into your life.

But it also reinforces that a normal life is only one that doesn’t have an impact of your illness which even if your joints are in remission, your disease is in remission. It’s gonna impact your life.

[01:04:58] Gittel Aguilar: Yeah. I, I remember my first rheumatologist told me, or was it my gastroenterologist, one of my first specialists straight out told me, but I don’t want this diagnosis to ruin your life.

And I was like, oh, okay.

[01:05:13] Cheryl Crow: You’re like, I wasn’t really imagining it would, but now that you say it, well maybe.

[01:05:16] Gittel Aguilar: Yeah. I didn’t realize that was an option here either. I’m living life as best as I can, like I’m just dealing with it, you know? I, I didn’t realize that ruining was in. It was a possibility, you know, even, that I need a fear. I know or they’ll say things like, don’t worry, not nearly as many people are, you know, have extreme deformities that require, you know, wheelchair assistance as they used to. And you’re like, oh, well I didn’t even know what yeah. So, or

what was it like a few months ago, I finally invested in a, it’s not a wheelchair, it’s a companion chair because it’s not the kind where I can push myself or roll myself. I guess it’s the kind where I need someone to be pushing me, but the point is I finally have one. I used to always rent one whenever I went to places like Disneyland or things like that. That right is gonna be a lot of walking.

So yeah. So I finally got one very excited for it. And yes, I’m very excited and very excited. And again, this is, this is probably a very good example, very excited for it on the private profile. You know, everyone’s excited for me. Everyone is like applauding and so happy for me and blah, blah. But then you have sometimes even doctors be like, oh, don’t give up and use a wheelchair. And it’s I am not giving up by using a wheelchair.

And the fact that that is the mentality that you have speaks volumes to me about the internalized ableism that’s in there. ’cause I had to deal with that a lot too. Right. And not thinking to myself that just because I’m finally investing in mobility aids like canes, like I have a cane with a seat.

I have that companion chair now. You know, like I got a walker. So many different things was not me giving up. Yep. You know, or like giving into this disease and you know, but it was me accepting and saying Hey, my quality of life could actually be a hell of a lot better if I accepted the fact that these tools beyond being necessary for me, actually make things very possible for me. Like the reason I got that chair was because we went to Vegas and there’s no way I would’ve been able to do all that walking that was necessary for Vegas. But because I had that companion chair, we were able to do the entire strip, you know, and, and not even have to take breaks because I was seated the whole time, you know, and for me, I’m like, this is awesome. I’m celebrating. But like able, seen through the eyes of ableism, it’s oh, how sad and how tragic

[01:07:45] Cheryl Crow: and yeah, I think, you know, it’s if you think of an analogy of glasses, they don’t say oh, she had to resort to wearing glasses.

[01:07:53] Gittel Aguilar: Oh, so sad that she wears glasses.

[01:07:55] Cheryl Crow: Yeah, yeah. But I think that the thing that makes it complicated in rheumatology is that there is this this elusive idea that’s kind of being, that’s hanging over every patient, which is that we can get them into remission. And that they can live a unencumbered life where the, or I, I like to say if I didn’t have rheumatoid arthritis, my life would be easier. There’s, if everything else in my life is the same except rheumatoid arthritis, like I don’t, and it’s funny because I’ve had, I’ve literally been in the middle of making this point in past interviews where I’m the interviewee kind of, I mean, and, and the people would be, no, but, but your life is gone.

I’m like, no, that’s a, I’m, I’m trying to make the point that they’re like, no, but your life wouldn’t be easier because they’re like, no, if there is a thought experiment where my life is exactly the same as right now. I’m married to the same person, have the same house, and all you change is I don’t have rheumatoid arthritis.

That is just, we can’t, we need to, we don’t need to overthink, but we also don’t need to under think like this would be easier. Yeah. Yeah. I wouldn’t need to deal with insurance. I wouldn’t need to deal with my medications. Exactly. I wouldn’t need to think about all the time am I, what am I gonna do to manage my, you know, to conserve my energy, manage my energy?

Can I tolerate going to this or that? Like with regards to some of my side effects of like being out in the sun, sensitivity,

[01:09:10] Gittel Aguilar: the number of appointments you have to go to.

Yeah. Imagine having all that time back,

[01:09:15] Cheryl Crow: It’s not saying that I don’t recognize that my life would be easier if I didn’t have rheumatoid arthritis, but I do -I wouldn’t say that necessarily it would be intrinsically better. No, because that’s the ableism of saying it’s better to not have it.

[01:09:28] Gittel Aguilar: I just wanna point out something though.

[01:09:30] Cheryl Crow: Yeah.

[01:09:32] Gittel Aguilar: Out of everything that you just mentioned, not one of them was actually the physical symptoms of RA Yeah, that’s the, and it’s true because like everything else, that’s why I say I’m a professional patient, you know?

Yeah. Because I’m like the things that are required of a chronically ill life to manage it. You know, just going to doctor’s appointments, getting your medications, getting your lab work, like all of that. That’s not even to say then the physical symptoms of it, the fatigue, how much easier would it be if we weren’t dealing with fatigue, with nausea, with chronic pain, right?

Yes. Yep.

[01:10:11] Cheryl Crow: I, yeah. Well, I was thinking like, if the magic wand was pulled up and then like they took away the physical, I mean it just, I think this is just a poignant point for people to, to, you know, I hope if your early diagnosis might be a little confusing ’cause you might be like, but I kind of do want the disease, want the disease to get remission.

But the fact, but what we don’t wanna do is focus on that so myopically that we forget that there are possibilities of living, living a good life with it. And, and exactly if it disease of remission, you still have the admin. Yeah. You still have, and,

[01:10:41] Gittel Aguilar: and also like thinking to yourself that that is the only goal, knowing that no, there are different possibilities.

That is one possibility, right? Forcing yourself to fit into that goal, right? Instead of looking at your life, being present in it and accepting where you currently are. Not closing yourself off to that saying Hey, maybe one day that will happen. Maybe it will be medicated remission. Maybe I’ll achieve unmedicated remission.

Like I, I don’t know what, what new speaking of technology, right? I don’t know what new technological advances there might be. I mean, I was a lot more optimistic for all the research and, but we won’t get into that. But you know, like in the future, future maybe, hopefully when we get back to all the research and everything you know, my parents and I are big believers in clinical trials.

Not only is that helping, with learning stuff that we need to know about ourselves and our bodies and how they work and everything. I love the fact that they track you so much more diligently than my experiences have been at doctor’s offices where you only get like 15 minutes with a, with your doctor and then a follow up every three or six months or whatever.

It’s no. Now I have to check in with my clinical trial specialist person who is asking me, TMI, but is asking me like what kind of bowel movements I was having, you know? It’s yeah, no, it’s the level of tracking. Yeah, it is yeah. That kind of thing. You’re like, all right. Yeah. And so like hearing that my dad’s trial might be canceled because of lack of funding and stuff like that, it’s oh, this is painful.

But the point is that who knows because of all these trials, because of all the technological advances, because of everything, who knows what. Possibilities are gonna be there for us in these diseases. You know, like always have my fingers crossed for a cure. You know, but I’m not holding my breath for it and I’m not holding my life and I’m not like waiting for that time to begin on this kind of again, full circle of what we were just talking about, where it’s okay, you’re gonna find one tool and it’s gonna work and you’re just gonna, it’s just gonna be the one that you use and you get to use forever.

No, that’s not how it happens. And I’m not gonna wait until the, a possible cure that’s in the horizon at some point, and I’m just gonna hold off life until that happens. No, that doesn’t make sense either. You know? Like I need to be accepting of and be present of. My life right now with the goals and the hopes of a different future, right?

Yeah. But that’s taken me a long time and a lot of therapy to get to.

[01:13:15] Cheryl Crow: Yeah. I mean a hundred percent. And just, you know, I’m not gonna go through all the rapid fire questions to start wrapping it up, but I mean, I think that’s a beautiful message to share with a newly diagnosed patient. Is there anything else you would just specifically wanna share just somebody listening who might be newly diagnosed? It’s okay if there’s not, ’cause we’ve covered so much.

[01:13:35] Gittel Aguilar: I know. I was trying to remember what I had said in the last one. ’cause I, remember that you asked about mantras and stuff and I’m like, oh yeah. Did I say this one? The, my one moment at a time? Because you normally hear one day at a time, but for me, a day of those 24 hours are way too long. So for me it’s,

[01:13:52] Cheryl Crow: you’re in pain 24 hours.

[01:13:53] Gittel Aguilar: A long time. It is a long time.

So I’m just like, no, no, no. One moment. And I get to define that moment however I need to. So if that moment is the next three deep breaths, then one moment at a time, and I’m, if the next moment is just one deep breath, that’s the moment I need to live through.

I need to survive. And I, and like that, that’s what I’m going. But one moment at a time and I get to define the moments as need as it needs be.

[01:14:19] Cheryl Crow: Yeah, I’m looking and and that is you did

[01:14:22] Gittel Aguilar: Is that the one I used? Yes. Because I love that one.

[01:14:24] Cheryl Crow: I, we have transcripts for those of you listening that, that don’t look at the website, arthritis dot, the enthusiastic life.com.

[01:14:31] Gittel Aguilar: Well, in that case, I will stick with the other theme of our episode for today and just say that remember that everybody’s different, as in every body is different. And just because you have similar circumstances or even the exact same diagnosis as someone else, in no way guarantees that you’re gonna have the same experience with that disease as someone else.

[01:14:56] Cheryl Crow: Yes. Yeah. That’s so true. That’s so true. And then this is kind of a central thesis or question of the Arthritis Life Podcast, which is what does it mean to you to live a good life and Thrive with your autoimmune arthritis slash disease.

[01:15:16] Gittel Aguilar: Again, bringing it back to what we were just saying, it means that I’m not waiting for my life to begin. It means that I am actually present in what’s happening and trying to find joy. ’cause that was another thing that I was like, what is the difference between enjoying something and trying to find joy in something? Mm. And it’s yeah, you’re not always gonna be able to enjoy something. I was like, I am struggling to enjoy my current moment like this.

This fucking sucks. How am I supposed to enjoy it? But to find joy in it, right? It’s oh, but you know, I am cat sitting and I have a little kitty that’s purring next to me. And that is the joy that I have found. You know, I’m not enjoying the moment, but I have found joy in this moment. And yeah, I think those are the big, big things I would say.

[01:16:04] Cheryl Crow: I love that. And that’s, it’s just, I can hear the English teacher in you, you know, that you, you, even if you’re not in choice,

[01:16:10] Gittel Aguilar: word choice, it’s all about word choice.

[01:16:13] Cheryl Crow: That’s, but I, you know, I, it almost broke my heart once I did have, but, but I was, it was a good learning experience for me. I usually have as an icebreaker when the very first meeting of our new Rheum to THRIVE cohorts all people share, where they live and their relationship to chronic illness in the sense of, you know, what illness they have, whatever they wanna share about that.

And then something that brings them joy just in general. You know, usually it’s, it’s your pet or a book. Or a movie and there was one cohort where someone was like, you know, just, I’m having a hard time thinking this. Today about what, what brings me joy, which is just, you know, it’s, it’s just it, that, that is a valid and hard place, you know, to be.

But I do think it’s a good practice to always see if we can find a small pocket of joy, even in the hardest times. Or maybe, maybe downgrade from joy. Maybe, maybe make it a more, maybe joy is too aspirational at the moment. ’cause your life is, it’s, it’s just too rough right now. Maybe think a, a small moment of peace or a moment of happiness, or a moment of, you know, something that, what, what’s something that’s easier for you to accept at this moment?

[01:17:18] Gittel Aguilar: I have clean sheets. Thankful for the clean sheets I’m am in right now.

[01:17:23] Cheryl Crow: Although your body might not feel safe if it’s really flared up, you know, so, but I just, I love that answer that you’re not waiting for my life to begin. I just love that. So I wrote that down and I highlighted it.

[01:17:35] Gittel Aguilar: Well, that’s something that came to me because of this group, man. Because again, like my big struggle at the beginning with my therapist was like, when do I fight? When do I, you know, just accept things or give in or give up. Like even just figure out the difference in those terminologies was really difficult for me and the experience of being in Rheum to Thrive and being around so many people that A, we’re not forcing themselves to enjoy the moment.

Right. And we’re just being every single Yeah. Real. And, and, and with that realness, like being unapologetic, even if it is negative and then realizing how many of us like, don’t feel that way, you know, it’s just no, that’s not negative. That’s just what you’re dealing with. And oh my God, it sucks and I’m sorry that that’s what you’re dealing with.

And just like having those moments are so healing to be able to, to. I’ve, I’ve mentioned this before and I think I definitely said it in that five year episode where it’s like being able to have concrete people that I think of, not a hypothetical, would I say this to someone going through the same thing as me, but instead of would I say this to Cheryl, the founder of my support group?

And most of the time the answer is no, not in a million years. Why would I be telling

[01:18:52] Cheryl Crow: for self-compassion, whatever. Yeah. If you’re saying something self-critical.

[01:18:55] Gittel Aguilar: Or yeah, where it’s just like why are you being so negative? Would I tell that to you if you were like telling me about something hard that’s going, that you’re going through in your life? No, no, I would not like, no.

[01:19:06] Cheryl Crow: Yeah. I love that. I love that. Well, you mentioned your public profile. Can you share what that handle is?

[01:19:13] Gittel Aguilar: Yes. It is my first name was just Gittel, G-I-T-T-E-L underscore, and then my nickname, which is gt. And I am fine with either one. People can call me Gittel or gt.

It’s up to you. Up to you.

[01:19:29] Cheryl Crow: Well, this has been so great. I knew we said at the beginning where it was gonna fly by. And I know we both did our self-care. Like you took a nap before recording, which Thank you. Because,

[01:19:38] Gittel Aguilar: and we also postponed this because, and we postponed it two times twice. Yeah. ’cause we were making this work for us.

We were not forcing ourselves to work at this. ’cause trust me, if we had done this the first time, this would not be, what would this, this energy, this being able to articulate myself would not have been possible last week when you weren’t able to I was. I was in denial that I was normal people sick, but I was getting sick and the symptoms were kicking me hard.

And so I ended up napping most of that day anyway. So again, this would not have been what, it would’ve been two people who were forcing themselves to be part of that interview because we had already postponed once. And why would we postpone again instead of just. Being realistic about it and saying, yeah, we need to postpone once more.

And now we had a fantastic conversation.

[01:20:30] Cheryl Crow: Yay for using our strategies. No, it is really hard. I I, I have a hard time rescheduling things ’cause I just yeah feel guilty or whatnot. Yeah. But thank you so, so much. And for those of you listening, make sure you check out the YouTube video version of this conversation if you wanna see us talking in real time or and there’s also the detailed show notes on the website.

So thank you all again and we’ll talk to you later. Thank you gt.

[01:20:57] Gittel Aguilar: Bye.

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