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Episode 58: Chronic Illness Tribalism
43 Plays5 months ago
In this episode Amy and Janessa dive into the benefits and pitfalls of strongly identifying with your illness and the power (not always positive) of chronic illness communities!
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Transcript
Introduction to the Wounded Healers Podcast
00:00:00
Speaker
Welcome to the Wounded Healers podcast.
00:00:09
Speaker
I'm Janessa. And I'm Amy. we were brought together by our shared wound of an autoimmune condition in our early 20s. This is a place where we explore our wounds with our listeners and guests who recognize the challenges of being human in hopes of helping all of us let the light in. Hi
US Perception in the UK
00:00:29
Speaker
everybody, welcome back to the Wounded Healers podcast. You're here with me Amy and Janessa! Hey! I didn't mix it up. Mix it up again. Keep Janessa on her toes, so she ever knows when to come in or what I'm going to want her to say. Yeah, I was impressed. I almost missed that. And I was like, oh, How is everybody? We were just talking. Janessa was just filling me in on the mentalness that is the United States right now. And for anyone that is in the States and doesn't have any British friends, just for your information.
00:01:08
Speaker
you are being displayed here as like the country's back on track. It's so funny like there's been like um comparisons to the inauguration ball and like our royal family and and everyone's like yeah it's looking up in America after the decrepit corpse is now not in office anymore and like the markets are great and financially it's great and you're gonna drill baby drill and like the world's gonna be good.
00:01:37
Speaker
So I just wanted to share that because I feel like that's based on what Janessa said, that's not the message a lot of you are getting and in actual America. And I actually, now we've been talking a little bit, I'm like, I wonder how much of that is the oligarchs paying off the newspapers around the world to make it seem good. yeah
Unwanted Social Media Follows: A Discussion
00:01:57
Speaker
I didn't even tell you this when we were talking actually oh a lot of people who have the meta verified like blue dot at the top of their Instagram are noticing that they're all of a sudden following Donald Trump and JD Vance and they never followed them and a few people have posted that when they try to unfollow the account it won't let them so I just want to put that out there that that's a thing right now yeah and that's really interesting to suddenly be
00:02:28
Speaker
It's like having Tom on Facebook, but like worse. kind of con This is a controversial opinion, okay? And I'm just here for the controversy. Maybe you could see that as it's actually really important for everyone to follow the president of their country on their social media, because it's like not allowing people to step away from the democracy of it all.
00:02:56
Speaker
Maybe. I just think you can't force anybody to follow one particular party because I think everyone's keeping up with news sources. However, Trump's... I'll say this in ah in a fun way. Trump's social media accounts are more meme worthy and very outlandish.
00:03:18
Speaker
then yeah news informative. So some of this stuff is really entertaining, like not going to lie. I'm like, whoa, I can't believe our president is saying that. But then I think about it. I'm like, why is our president saying that? Anyway. Oh, yeah okay. Fine. Cause I was thinking like that just means everyone is going to get updates about you know, I don't know, security, shit
Following Political Leaders on Social Media: Pros and Cons
00:03:41
Speaker
like that. Like if they know, um but because there might be people that like choose to not watch the news and not read the news, that they want people to know what's going on in their country because that is important at the end of the day. And social media is like the final channel where they can actually reach them.
00:03:58
Speaker
And to counter your point, I don't know why I'm feeling so like debate-tive tonight. But it's not youre they're not following a party, they're following the president and the vice president. yeah It's not about party politics anymore, like that's the leader of your country. It's true. what Whichever party you vote for. That is true. I would say it's just it's mostly hard, I think, if you
Impact of Trump's Immigration Policies
00:04:20
Speaker
if you are a liberal.
00:04:22
Speaker
Person in general because a lot of rhetoric right now is like very racist and very and what I mean by that because it's not being displayed in the UK is so like he Trump has put in to order a mass deportation within the US and So we are getting a lot of images on our news of children. Literally, there he signed the ICE, which can go in and arrest, are now allowed to go into hospitals to arrest and deport people, and they're allowed to go into churches. So if you are worshipping, they can come in ICE, and they can request to make sure you are a US citizen. If you are not, they will deport you.
00:05:00
Speaker
ah with or without your family. So we're seeing on our news like seven-year-old kids, seven to ten-year-old kids who are just being ripped out of school even um because they they don't have documentation and being deported and the idea is they'll be reunited with their family but a lot of these kids don't ever get reunited with their family or die in the process of being deported because they're kept in essentially a concentration camp like a whole a holding camp i've seen so the amount of people that he has signed off on being deported is like terrifying so that's the other thing about following him is it's just like oh it's just kind of is like i don't support
00:05:42
Speaker
mass deportation of people. yeah yeah Especially when we're literally all immigrants in America, except for our native Americans. So bless you. That's true. The irony of like Trump's descendants were immigrants at some point. He was from Ireland on his mom's side.
00:06:01
Speaker
Pretty sure. Yeah, I might be misspeaking in Scotland or Ireland, and I'm so sorry. Trump. I wonder where. Trump. Wait, no, on his mum's side. Fine. um Anyway, right. We digress. Sorry. I'm sorry, everybody. This is very interesting because we and Janessa really only get together to talk when we're recording these things. So sometimes, yeah, it's just fun to hear from the other side. Yeah.
TikTok Ban: Effects and Reactions
00:06:27
Speaker
um But our hot or not today is kind of along this topic, to be honest. We're going to talk about whether TikTok is hot or not. ah what Or we were we going to talk about whether it was hot or not going to be if banning TikTok is hot or not?
00:06:41
Speaker
I think we're going to do banning, but I could go either way. banning No, no, no. Let's do banning. Let's do banning. So yeah, obviously got you guys did lose TikTok for a short 12 hours this week, 12 hours. um And again, from my side, because as you all know, the US s is just entertainment for the rest of the world now. I just saw hilarious TikTok.
00:07:03
Speaker
that of like movies where there's like I don't know like a Chinese guy out the window like in the rain holding his hand up to the window and they're just like saying goodbye to my Chinese spy who's given me like the best entertainment for the last two years like yeah from that point of view it was quality entertainment um yeah but how how was it for you Jess?
00:07:30
Speaker
So I also saw that meme and I loved it. I was like, yes. So, okay, I don't use TikTok, to be honest. I have an account, but the only person I talk to on TikTok is my friend Celia. And we just send each other romance, like romance book fan art. yeah That is all I do. And I don't even know how it works. Like genuinely I get on there and I feel very lost. um So that ages me right there, folks.
00:07:58
Speaker
But I have to say it was really interesting for me to witness the banning of TikTok on multiple levels because one, the ban was in place from Trump putting it in place in his first presidency and then he took it back because he realized like 26% of his votes were coming from youth on TikTok and on Instagram. So then he was like, oh, nevermind, it's not a national Problem which which kind of tells you something youre like wait wait a second our country could decide to shut down tiktok But they can't decide to like to have better gun control or ban guns when my kids are dying anyway really interesting priorities us But the way I feel about it is that it showed me how detrimental
00:08:48
Speaker
any kind of social media platform can be to the way that we live our lives because I saw a lot of videos of people genuinely crying and in serious distress around their TikToks being banned or going down. And to me, this is like a plight on society is when we are living virtually instead of living physically in our world.
00:09:14
Speaker
like The virtual world is a really weird cross between physical and spiritual where both can meet, but it's an artificial plane. like Nothing. You can't touch. You can't really feel like you are basically taking an emotional roller coaster ride when you are virtually there. yeah You're choosing. yeah um so It made me a little sad to see grown people crying and losing their shit over a TikTok ban. But yeah, Amy, you brought up a good point though about income. So I'm going to let you take it from here because I didn't really consider that. um Yes. Okay. Yeah. Two points. Cause I've just thought of another one while you were talking. So my first point was people, many people have made their livelihoods on TikTok.
00:10:04
Speaker
um And not even, not all of them are even making silly, pointless videos. Like some people really believe that they have a message that they're getting out and TikTok
TikTok's Role in Supporting Livelihoods
00:10:17
Speaker
is the platform for that. People have like had music that they they didn't, you know, like people's music careers have been sprung from TikTok. So it may have started on TikTok, but now they are fully certified musicians like living their dreams um and even if it's just someone who like makes mom content that's still how she's putting food on the table for her kids so I think ah ah that's small obviously like the majority of people on TikTok are just like either posting like harmful AI stuff or just random shit um but no there is a handful of people that that would that seriously could have taken their families from
00:11:01
Speaker
being financially stable to broke. So that is something to think about. um But they probably would have been, let's be honest, they probably would have been able to move platforms. Like their followers would have gone with them to another platform. But I have another question to ask Janessa.
00:11:15
Speaker
So you thought it was silly that people were crying because they were losing TikTok. Would you think it was silly if people cried, if the government was like, no one can have any books anymore? Like books take, books take people away from their real life and they put them on an emotional roller coaster and we can't control what people put in books. So there's going to be no more books. yeah How would you feel? That would, I think we would be starting to go into a very serious sci-fi moment in history, but it's already actually happening here in the US. So I don't know if you heard, they're banning a bunch of books and they're burning a bunch of books in universities on gender right now. um So it's already kind of in motion here. oh So it's it's horrifying. But the way I feel about that is that it's so different to sit down with literature and be able to think for yourself
00:12:09
Speaker
on the book, social media presents a space where it's free reign for everybody to comment. And the thing is our brains are just not built to take in this many people's opinions on one thing. So when we read a book, we're actually engaging in unity with that book and that author to have sacred space and time to understand what they're talking about. If it's sacred text, if it's not, if it's something silly like romance and smutty stuff,
00:12:38
Speaker
That can be really fun, but you are devoting your time to that. So it becomes a time devotion thing. So something that someone spent maybe up to two to three years writing, I would give that more value than something that someone created in the span of 10 minutes.
00:12:56
Speaker
to try and make money off me. So I would think of it differently. um Books are a source of entertainment, but also that's the other thing. The book stays the same unless the printer decides to print it differently or they do like a limited edition, but it's constantly changing on social media. So if someone created books the way they created reels, I don't think I'd want to read all of their books because I don't think it would hold much quality.
00:13:25
Speaker
I think it would just be like fast fashion. Like, oh, I wrote about this because it was trending. Well, okay, that book's not going to be as valid through the test of time. Yeah. ah Okay. yeah So I think I do, what I do think in terms of whether it's hot, banning TikTok is hot or not. I don't think it's, I don't think I can say it's hot or not. What I do think is that it's not important. Like I agree with you that people shouldn't be crying um or anything like that. Like it shouldn't be such a big part of people's lives that it causes them a lot of distress.
00:14:05
Speaker
um
00:14:08
Speaker
So, yeah, I guess not. But equally, the world is so fucking depressing. like It's nice for people to just be cheered up by like cats springing around rooms yeah of an evening. You know what I mean? like I think there's ah so much yeah there's so much darkness in the world, and I think even a lot of well even a lot of produced TV, produced entertainment is also just depressing.
00:14:36
Speaker
And I think finding, there's no harm in finding joy in a few TikToks, scrolling TikTok. Like I'm like, how do I let the people have it? um So no, I think it's not hot to ban TikTok. I think we should be allowed TikTok.
00:14:53
Speaker
I'm with you there. I don't think it's hot to ban TikTok. However, I think it's very unhot and I think it's very unadvisable to make TikTok your idol in life. So if you are spending more time on TikTok than you are talking to the people you love in this lifetime, then I would genuinely suggest reevaluating because yeah ah this life is so stinking short and that's why it was so sad to see people so devastated over TikTok when you realize Oh my gosh, ah TikTok and any platform of social media can be taken away from you at any time, just as a loved one could, or just as you could from your family. So I hope it re-prioritized that for people. Yeah. Yeah. Good show. I i think it probably would have this one. That's very wishful thinking. I was like, I think it would have no, it would have just come back in 12 hours. They would be like, thank God. Yeah. Yeah. Carry on as you were.
00:15:49
Speaker
Wow. Okay. That was a good hot or not. I feel like that one was like, actually one of our more intellectual ones, like genuinely. I was like, oh shit, these are good points. Yeah. So, okay. Well, we're going to hop into today's episode. Um, the theme of today's episode is essentially identifying with chronic illness communities, influencers, social medias.
Tribalism in Chronic Illness Communities: An Introduction
00:16:15
Speaker
We're going to kind of follow that social media trend a little bit in here.
00:16:19
Speaker
um But our themes for the day are going to lead us to hopefully a good discussion around over identifying with things, groups, or people um in order to feel a sense of belonging.
00:16:34
Speaker
So I'll get that kicked off. ah So I wanted to start the episode with talking about the psychological term of tribalism. So tribalism is seeking a group where you feel you belong because there's commonality between the group and you. and This is different than just saying a tribe back in the day. However, it's very much has similar undertones. So an example of tribalism in psychology is going to be that it's this is one that a lot of people don't notice. If your friends wear similar clothes or have similar style to you, that is not usually
00:17:13
Speaker
um for no reason. People usually gravitate and navigate towards people with similar themes as them and who are similarly dressed. So that is one of the ways that we see things like branding is such a big thing in our culture. So you can deduce actually quite a bit psychologically whether or not you notice it on seeing what brand someone is wearing. um Unfortunately, we make a lot of preconceptions about their status, their wealth, and the way they may or may not live their life based on what we see. So that is all a part of tribalism.
00:17:50
Speaker
What I want to go into is that when you are part of a group, it does it it's not a bad thing. Tribalism is a really beautiful thing in some ways because you can build each other up, it can be a really intentional community, and it's really nice to be friends with people who are on the same kind of vibe as you. like I totally get it. so I want to talk about in-group bias, and this will all wrap around what we're going to talk about later.
00:18:16
Speaker
So in group bias, and so it's a strong preference or favoritism towards ah members of one's group. And this part I'm going to read directly from Google here so I can link this later, but it's often leading to positive judgments and um in preferential treatment.
00:18:34
Speaker
So where I want to take that into is the chronic illness community. So when we first get diagnosed, depending on your diagnosis story, of course, there's a lot of ways this could go, we're often looking for a group. We're looking for that tribalism because now we've been plucked out of the way we've been living our lives and we are presented with an obstacle.
00:18:58
Speaker
and one
The Risks of Over-Identification with Illness Communities
00:18:59
Speaker
that we might not be able to overcome with the test of time, one that we might just have to learn to live with. So we go to the internet, if you're like me, you you go to the internet like we're talking about TikTok, Instagram, YouTube, and you are searching for people who are going through what you are going through. You are searching for a new kind of tribalism in that way.
00:19:25
Speaker
The internet is a beautiful horrifying place just as the world is and you'll most likely find some really amazing information and you will find some horrifying information if you are going through or have gone through a diagnosis. um What I want to have stand out here is that it's extremely important in my opinion that people are careful about the groups And the groups that they conform to and conform is like a triggering word. So just bear with me here. We'll end up somewhere. Be careful with the groups you conform to if you are joining chronic illness communities.
00:20:08
Speaker
because there's many variables and many outcomes for each person with their autoimmune condition or any condition or ailment they're having. And when we join into groups that are talking more on the extreme ends of things or are going through a valley and are really seriously struggling, we can over identify with that and we can actually work ourselves into a mindset of more stagnant,
00:20:36
Speaker
ill thought and that can really take a toll on our body and the way we perceive our healing journey. So I would say look for people who give you hope for your future instead of trapping you in the worries and fears of now.
00:20:53
Speaker
Yeah, that's how I want to start this because it is a tough topic you guys because it's it's serious like being sick you You need you want to know like you're gonna be okay And it can just be really detrimental to find people who are overly positive overly negative um Both extremes can be really detrimental to how you're leading your journey and how you're experiencing your pain So um in terms of Instagram, in terms of influencers, Amy has some notes on that. And I think we should bring that in now because I think that is so on point with the idea of finding your people.
00:21:33
Speaker
ah yeah Yeah, I mean me and you are an example of that. I mean we both put ourselves out there on the internet when we were diagnosed and met because of that and now here we are today with this friendship that wouldn't have existed without that. So I'd like to argue that's a positive outcome of tribalism.
00:21:58
Speaker
um and I'm sure there are many other examples just like that um but I think you get into the tricky spot as Janessa was just describing when you lose touch with yourself and how you really feel because you are so influenced by everything that you are seeing and hearing um and you start mirroring, you can even start mirroring, mirroring, can't speak, um how other people think and feel in your own life, which is the last, which is when the whole chronic illness influencer thing becomes tricky because this is people's health we're talking about. It's not even just like,
00:22:49
Speaker
encouraging someone to buy a t-shirt like this is literally people's life and everything that they form their life around so I think it's a really important topic to talk about and also we both hold some accountability here because in a way we are both i but I wouldn't count myself much anymore because I haven't posted on Rootoy Girls for years now um but yeah I think we both have a kind of small platform so we are both guilty of this in a way um but maybe not guilty of but we can be we have been there so I think we're well placed to talk about it in terms of like what those people are thinking and feeling and why it might be dangerous to listen to everything they say. and So I wanted to ask you what drove you to start talking about your RA on the internet? Yeah, so I started talking on my RA on YouTube, so if any of you here are my OGs from Jakes on RA, I started on YouTube one very lonely evening and after graduating college and it was a desperate plea. If you
Janessa's YouTube Journey
00:24:02
Speaker
watched my first video, I was like, I don't know anyone else who's going through this. I just need someone to know. I basically started it as a process of like journaling and
00:24:12
Speaker
being able to come back to it and I'm really thankful I did that actually. um I don't think it has to be on social media that if you document like I'm a fan of recording yourself and saying what you're going through and how you're feeling and come back to that annually and it's really amazing for for your growth. um yeah So I started that out of just a need, a need to know that I wasn't alone in it and that quickly started to become, I had like no followers, which was totally fine. I wasn't there for following. I was literally there just if anyone came across my page to be like, please message me. um so By the time I got to my diagnosis story, I think I had around 500 followers on YouTube and I realized that editing videos for me was really cumbersome.
00:25:02
Speaker
um Now I think I probably would feel differently now that I have podcast experience, but the idea of editing audio and video at the same time, it's actually kind of harder than I thought. um So I decided to swap over to Instagram because I was like, oh, I don't have to make 20 minute videos. I can make short videos.
00:25:22
Speaker
So it started out of just purely wanting to know anyone else what they were going through and then it became slowly but surely a journal almost of what I was experiencing so I actually showed like how to do self injections on it. um Yeah, they're still up there. I talked about an anti-inflammatory tea I learned to make from a Nepalese woman I had met. um I started talking about my elbow losing mobility and then I recorded after my surgery. um And then I stopped because I was really in a place of gratitude that people were watching.
00:26:05
Speaker
but i started to get like hundreds of comments on my youtube videos and i know that sounds really silly but some of them were like i some of them just made me as someone who is like i really feel people's feelings a lot of these comments where i am so destroyed right now i am in like the darkest valley of my life and i just didn't feel like i was capable of Throwing the rope into the well for them to come out, you know, I just couldn't do that because I was barely holding myself together So I just voluntarily like removed myself. I haven't created a video on there maybe in like seven years um yeah But it still has its following. I don't know how I don't know why um But yeah, it and it still says Jay takes on RA. So it's still my old name um Yeah, so that's how it started for me. That's how it started was a need to just be like I need to know
00:26:59
Speaker
That someone else is going through this or like I need to know and then and then I did know and I knew in mass numbers and I was like this is so actually season wish i was like ah Yeah, like and that that I Relate to that so much what you're saying about people sending you like the heaviest messages and you just having no idea how to respond to that I think ah is one of the things that made me really be turned off from partaking in it all because it's just insane to like to have someone pull their heart out to you when you have like no qualifications you're also a mess um it's wild um so yeah i I relate to that so hard um
00:27:47
Speaker
But um that has made me, you're talking about YouTube. um I think that's actually... No, hang on. I'm going to rewind. You've thrown me so much. I'm thinking about like all the times people have messaged me. It's really throwing me off.
00:28:04
Speaker
um Yes, but it makes me think. um I almost wish it was like you had the platform and you had the expression and you were like able to help people but they couldn't talk back to you.
00:28:22
Speaker
yeah But that completely nullifies the whole concept of a community because like they have to be able to express themselves back to you um and you need to be able to communicate. um But I think from an... Because ah all of myself was on Instagram, I never posted anything on YouTube. um I think it like really changed with the DMs because like I think of a comment is still very like hands-off. It's like someone...
00:28:52
Speaker
I don't know, sending you a postcard and like and then that's it. You could choose to respond or you could not. But like when people were in your DMs, it felt way more like personal, way more like you're like having a telephone conversation with them. um And that's really deep when you're also going through shit to be like having private conversations with people about how they really deeply think and feel. People that you don't know is also, I think it's not really a natural human instinct to share really intimate things with people that you don't know. um But I guess because you're the one posting content, they kind of feel like they know you um and they're really open with you and you don't feel that way with them.
00:29:43
Speaker
um Yeah, it becomes very intense. Sorry, that was such a ramble. No, no, i I think that's on point. I do identify with the feeling of wanting there going to be no comments sometime. However, I totally get what you mean. Yeah, that is how we Solidify community and we learn about each other we answer each other's questions and it's just it's hard because it just goes back to the thing that like um There's so much more to everybody's life than yeah social media so this person can be vulnerable can be sharing their experience, but what I found and what I would highly caution people to be aware of is
00:30:28
Speaker
That at some point I realized that I was only existing in the social media realm talking about what was hurting me and I realized it shaped a lot of my day because when I was doing YouTube I'd be editing for like up to an hour and re-listening to me talking about like pain, talking about how RA was changing my life at that time. And it was almost like I was rehearsing and re-solidifying a script in my mind. And what I mean by rehearsing is that it's not an act, no. like It's all very real, but it becomes solidified through repetition, just as we would for studying for a test.
00:31:14
Speaker
And I just started to realize that it I was becoming RA. I wasn't becoming someone with RA. And that's something that I, when I view on Instagram now, accounts that are based off of their chronic illnesses, I think one that We are very lucky to have such a variety of people who are now talking about um things like RA or any other chronic illness. It can be extremely helpful, but it also really concerns me sometimes because I'm only seeing them out of the lens of
00:31:51
Speaker
pain hurts some motivation around it ah but I only know this one facet of their life and my concern though is if if it was me and I was viewing these types of accounts sometimes back in the day 21 when I was diagnosed I was still very much looking for that tribe look for that tribalism if I had given myself fully to a group of people who only made everything they created about their illness, I may have actually adapted that into my own life and yeah only lived around my chronic illness, which is very much not what I wanna do because I don't wanna give it power over being like, i I'm not all right, like I'm i'm Janessa, i have ah I'm a good sister, I'm a daughter, you know, I'm a friend.
00:32:45
Speaker
um I'm a learner. I'm not someone with just RA. That's just not yeah true. So that is though where the caution is there because I started to just over identify with RA to an extent where I was like, I have pigeonholed myself into a category that I cannot ah pulled for the rest of my days on social media because I just can't keep talking about being sick like this. Even if it's happening, I need to show that I'm not just this. So that's where I, that's where I kind of fell off the train there and decided, okay, Jay takes honorary is going. um And I'm putting in the spiritual nutritionist because I was studying nutrition. And I was like, I'm going to introduce more themes on my page.
00:33:40
Speaker
Yeah. Yeah. And now I'm encountering that again, to be honest. I've like, well, any niche kind of traps you into something, but that is also the recognition is it's so sad. That's how the machine works. That's how Instagram works. They even tell you when you create an account, the more niche you make it, the more following you'll get, the more views you'll get. So everything is there to entice you to conform to one way of being on your page.
00:34:09
Speaker
yeah So I'm trying not to become one way of being. I i don't think you are. Thank you. I feel and you i have not i feel like I really was though. yeah no Yeah, absolutely. There was definitely a time. something
The Impact of Capturing vs. Experiencing Moments
00:34:28
Speaker
about it now where watching anyone know that you're not included in this. You're not. But like, you know, when you just see too many times people recording themselves doing something, like I'm just like,
00:34:46
Speaker
we need to stop this and it goes across everything like the people like opening their birthday presents in bed with like the tripod set up or like I've seen lots of recently lots of people um announcing their pregnancies to people and they're like having a one-on-one conversation with their friend holding the phone like with their arm extended out with the front camera to record just a moment between them and their friend and I'm just like this is good too far like you should be able to have those like
00:35:21
Speaker
precious interactions with people without um yeah recording it i think it's kind of getting weird but i think that was the issue was when the platforms moved to video content like back when it was just the little pictures that was fine like most people take a picture to um capture a moment, but you're not as different than having everything you're saying recorded. It was when they flipped it to video and everyone started feeling the pressure of like, oh, I have to to make video content now to grow my page. Everyone just started videoing shit that shouldn't be videoed. And yeah, it was a big turn off for me.
00:36:04
Speaker
It's you just reminded me of something. So in college, one of my professors, his name is Bob Haft. He was so cool. Shout out to Bob. Anyway, he he did um like he was professor for psychology, but also had a minor in art. So he did photography and psychology combined.
00:36:22
Speaker
And it was really beautiful because he warned us in a lecture one time. He said, I just want you to consider this, that when you take a picture of something, you have actually killed the moment. Like you have not you have chosen not to live in it directly, but the second you tried to capture it, the moment is already dead once the picture is taken. And he was like, so when you take pictures,
00:36:47
Speaker
Be mindful in this class of what moments you're willing to condemn to death. Like what moments are you willing to take your camera out and capture? And by that you are losing the experience of being in it.
00:37:00
Speaker
Wow. Literally stuck with me forever, forever. was like, oh my gosh. So there, I had that, this reminder recently, Amy, cause I was like on a hike and I, I saw some birds and I was like, oh my gosh, I gotta take a video of these birds. And I realized, I was like, wait a sec, these birds are here right now. Like,
00:37:22
Speaker
Yeah I could take a video but like I think I'd rather just watch them. So I just sat there with it and it felt so foreign to me which made me sad because I was like I'm so used to just capturing a moment instead of being in a moment.
00:37:36
Speaker
um So yeah, just food for thought there. Things, yeah. I feel like I completely took us on a tangent. There's nothing to do with trifugism. I'm sorry. No, no, no. That was really nothing to do with chronic illness communities. It was just me being finished out. I think it does. I think it does, though. Because I actually think it directly does, personally, because there's been times, and I'll use myself as an example, where I have brought a recording into a very almost kind of what could have been a sacred moment or could have been like a real moment of intuition for myself and what I mean is like I brought a camera into like right before my surgery
00:38:20
Speaker
and right after my surgery I filmed some some stuff to make content with at one point and to me I was like oh it's like documentary style and I can share this but what I didn't do is it means I didn't put it down before I went into surgery and I didn't like Pray for the well-being of myself, you know, I was just fully in the creation of content mode I didn't stop to think about what I was going into and maybe that was the way to avoid fear um Yeah, but there's there's gonna be a lot of beautiful Beautiful moments and I know this is gonna sound maybe bizarre to people who are newly Diagnosed but there's the potential for a lot of beautiful moments in your journey
00:39:10
Speaker
And yeah I just hope we don't miss those moments by trying to mirror back what we see others doing because all those moments are unique and they're very individualized.
00:39:23
Speaker
Yeah. Oh, sorry. No, no, no, Hugo. I was gonna say, amy okay, I want to know, did you ever feel this? Because I definitely did. Like, so another thing that is hard, and we'll relate it back to finding kind of that tribalism within chronic illness community, is when I got onto to Instagram and there was a plethora of chronic illness communities, I almost started to feel like I was doing things wrong or I was behind.
00:39:53
Speaker
in some way um did you ever feel that like viewing other people's journey like wow like i i'm behind in some way or i haven't healed like that like what's going on yeah i think yeah yes that I think the word that's like really coming to me more though is like I would just envy people so like envy people that were in a remission spot or envy people who like had access to things that I didn't have access to um like oh my god was that like the higher dose sauna blanket
00:40:36
Speaker
not specifically that's so funny um but yeah like not necessarily yeah i think it was more like envy that came through for me um and like awful bitterness feelings And yeah, that's that's kind of what I would always think. Just like, why is why is that for you and not for me? Not specifically talking about the higher dose blanket. I mean, if they were feeling if they were feeling good and strong or like weightlifting or whatever they were doing. and Yeah. And I actually kind of, I guess I kind of found that the opposite of inspiring some days. I found that like pissed me off, yeah which is not in a good state to be in when there's tons of other stuff pissing you off.
00:41:22
Speaker
Yeah. No, I definitely, that's interesting. I never thought of the word envy, but I i'd identify with that too. Totally. A hundred percent. Or like the juicer they have is really nice sort of just like everything. And you're just like, wow. And and that's the other part about, ah you know, this, chronic the chronic illnesses, and ah illness communities. Oh, I can't talk. Um, is that it's just, you can almost feel like an outsider.
00:41:48
Speaker
in the group of people with this diagnosis. Because they're like, wait, is everybody drinking celery juice now? Like, what are we doing? Like, what are we doing to help our, it you know, and it's just becomes ah consuming in that way. um I think it's really interesting too, because like one thing I remember feeling, and sometimes I still feel it today, is when I view someone in a spot of chronic illness who is really capturing the attention of a lot of people in the community, whether it be they did something really amazing or they're really ill again. Um, sometimes I think, and this is controversial, but sometimes I think like I have gone through that, but I would never post that personally. Like I just don't think yeah I don't, I don't feel like sharing
00:42:47
Speaker
all of my lowest moments with the world. And it's not because I care about what they think. It's just that I don't care about what they think. I'm sorry. I care about how I feel and what I think about yeah myself in those moments. So it's been it's been hard. and then Also, oppositely, there were were times when I was first diagnosed and I'd see people rock climbing, hiking, biking, and I just was like, screw all, because I'm never going to get there. That's how I felt. I'm never going to get there. And that's the other cautionary thing is in chronic illness communities, a lot of the time we don't remember that like.
00:43:27
Speaker
the person you're watching, they might be eight years into their diagnosis, eight years into their journey and you might be on day one or you might be on month four. And it's just so hard because we lose the context and the knowledge around that stuff often. So we we're comparing ourselves to people who have had more time to get to know their own bodies and how they respond to the autoimmune conditions for illnesses. yeah And that is detrimental to us. it It's so detrimental to be like, why and why am I not there yet? Well, yeah yeah. It's also really important to have in the front of your mind that you do not need any qualifications to be a leader in one of these groups. And that's really terrifying. especially because let's be real, a lot of people that have chronic illness are not mentally stable. It's very hard to be mentally stable. Like when you're in pain every day, when you're facing like some of the toughest shit, like it's actually very unlikely that any of them are mentally stable. ah And you don't want to be following people who aren't mentally stable. um But we do all the time. Me and Janessa both have. And we've seen their journeys go, you know, we've taken what they've said for Bible and then they're just suddenly like, actually, I don't feel like doing that. You're like, Oh God, no. Okay. We're not doing that now. all We're going to do what this person does because this person says it's this. Um, and yeah, just remembering the like all.
00:45:05
Speaker
like They're not, they shouldn't be in a position of influence. They've found themselves there because um they are talking on topics that people want to hear about, that they are not vetted and then they're not okay. they're not okay we're not None of us in the chronic illness community are really okay, but we can do a lot of work and self-reflection and become more mindful but at the end of the day we are all broken people because our bodies are broken and it's very hard not to be a broken person when you have a broken body and yeah and it's really it can actually be really dangerous we see it it's the same one it's like it's kind of similar to like cult leaders right like they really give you something to believe in and then next thing you know you're all drinking like poison Gatorade
00:45:51
Speaker
what drink vanilla one they like drunk yeah Yeah, no, no, it's true. It's I totally hear what you're saying and and just to kind of re reiterate it too is it's like It's okay I think to listeners if you too are Realizing that you may have worked yourself into a bit of a rabbit hole here with your Instagram feed or your social media feed just being a Chronic illness people telling you what to drink telling you what supplements to take telling you what to do. That's
Shifting Focus from Illness Influencers to Wellness
00:46:24
Speaker
somewhere where we've both been. And um the best part about that is like we really encourage you to expand and contract. So expand to allow new perspectives in and to allow new things in that are not just around autoimmune, ah but also contract. Feel free to unfollow, feel free to unsubscribe from things that no longer are fitting your journey.
00:46:49
Speaker
That's something that um that I wish I did sooner. I really do. so yeah yeah I was going to say, like my piece of advice from this episode is don't even follow chronic illness influences. like If you're sick, follow wellness influences. And like you never know like they if you're going to follow anyone. Probably the best idea is to not follow anyone. But yeah let's be honest, we all like to follow someone. um yeah So people that don't talk about like surgeries, being sick, symptoms, like just people that talk about living a good lifestyle. um And that isn't necessarily just
00:47:31
Speaker
food or anything like that, but it's also like spiritual and like intellectual and everything else um that comes, that I think can fall into wellness. um Yeah, just follow people that are inspiring you with wellness, not like meeting you where you're at with sickness, I think is is a good way to use platforms or be part of groups mindfully, you know, like if you're going, even if it's not on the internet, even if it's in like the real world, like you're gonna, you want to go to an exercise class where everyone's, I don't know, everyone's exercising, yeah. I don't know, just scratch that, scratch that example, but you know what I mean.
00:48:19
Speaker
Yeah, no, it yeah that's spot on. And to kind of also real quick point something out before we start wrapping up is I just wanted to say, like you said, spiritual in there too, Amy.
Balancing Physical and Spiritual Realms in Illness Context
00:48:33
Speaker
And ah one thing that has been extremely helpful for me to not over identify with any particular group in my life right now is that I realize the very real reality that I mostly am considering my existence in the physical realm.
00:48:53
Speaker
And what you create and what you put out while that's on the internet, it was conceived physically. You made the video, you put it there. ah suddenly in the past like six to seven months I have had a very real realization for myself that the spiritual world is here it exists it's all around us and that our own hygiene around what we believe for our own spirits is just as important as how we take care of our bodies physically so with that said
00:49:29
Speaker
Know the impact of like what you're watching and what you're taking in Especially when you're chronically ill like Amy said we can at times be more susceptible to things Be mindful of what you're taking in because everything does really over time Impact your spirit you'd like the your core of who you are and that's very sacred like for everybody like everybody has a soul and I really believe it and I believe it's our responsibility to become the caretakers of our souls and what they need. So we can't tell you what your soul needs right now. We can't tell you any time what your soul needs, but this is what we've noticed that our souls have pointed out and how we're taking care of that and how we're doing that in the physical realm as well.
00:50:18
Speaker
So just want to put that out there. When we overly identify with any one thing in the physical world, we kind of lose our grasp on the very real spiritual world around us. Which is why you should be taking comfort in because it's the one thing that is kind of unchangeable and ever present and that you can always rely on. um Yeah, you it's much better value to invest there than it is to invest on Instagram.
00:50:48
Speaker
Yeah. Oh, anyway, cool. What a journey. Thank you all. And um yeah, again, i I love these conversations cause like we are growing with you guys and we are coming to your realizations with you all and it's really beautiful and we're glad you're here. And like we said, we support, we support you, whether that means you continue on the journey with us, you take a break, you come back, whatever you need to do,
00:51:15
Speaker
we'll be here we'll be here chatting it up yeah yeah yeah um so yeah hopefully this gave you guys some food for the lot maybe something for you to check yourself on and we'll see you again in two weeks and until then remember to let the light in bye