[00:00:00] Intro: Welcome to AiArthritis Voices 360 the podcast solving

today's most pressing issues in the AiArthritis community. We invite you

all to the table where together we face the daily challenges of

autoimmune and autoinflammatory arthritis. Join our fellow patient co

hosts as they lead discussions in the patient community, as well as

consult with stakeholders worldwide to solve the problems that matter

most, whether you are a loved one, a professional working in the field, or

a person diagnosed with an AiArthritis disease, this podcast is for you.

So pull up a chair and take a seat at the table.

[00:00:43] Leila: Hey Everybody and welcome to AiArthritis voices 360.

This is the official talk show for the International Foundation for

Autoimmune and Autoinflammatory Arthritis, or AiArthritis for short, My

name is Leila P. L. Valete and I am the health education manager here

at the organization and person living with lupus, lupus nephritis, and

Sjogren's disease.

I'm joined here today by two amazing advocates, Estela and Kerry.

They've both been co hosts for the past few years and have a lot of

amazing things that they also do on their own, so we are so grateful to

have them here with us today. Estela, did you want to go ahead and

introduce yourself?

[00:01:30] Estela: Yes. Hello, everyone.

I'm Estela Mata from Looms 4 Lupus. I'm one of the co founders and

also support group facilitators and president of Looms 4 Lupus. I'm

excited to be here with my AiArthritis family to talk about things that

impact us. You know, I was just recently diagnosed with rheumatoid

arthritis and I have family members with autoimmune and arthritis

conditions.

So I'm excited again to be here. Thank you for inviting me and including

me in this amazing recording today.

[00:02:01] Leila: Awesome. And Kerry?

[00:02:02] Kerry: All right. Hi, everyone. I'm sorry that I can't be on

camera right now, but apparently technology thinks that I have a face for

radio. But I am Kerry Wong, also known as the butterfly of

FloatLikeAButtahfly

I have what my rheumatologist calls autoimmune soup, which is a

combination of some sarcoidosis, which is a rare inflammatory disease

that affects my joints as well as a whole lot of other systems. And I also

have rheumatoid arthritis and Sjogren's, and like most of us, a laundry

list of other things to go along with.

I am a writer and a patient advocate. I currently have a regular column

on a site called Sarcoidosis News. It's also called Float Like A Buttahfly.

And what I am most excited about is that I just released, my first book. It

is called Kaleidoscope Rare Disease Stories. It's a collection of 60

stories from close to 50 different people living with rare diseases.

So I am always excited to help rift other voices, raise other voices, and

share each other's stories. And so I'm looking forward to today for a

chance to, you know, hear from some of the other stories and see how

we can kind of jump back in to give you some suggestions and tips and

tricks to make things a little easier.

[00:03:23] Leila: Thank you so much. Yeah, exactly That is what we are

here to do today. So today's topic is social wellness with an AiArthritis

disease this topic came about in the past few months when we had a

social media posts that got a lot of response to it. If you all keep up with

our social media, you might see that every week we post a community

question to gauge the community's input on different aspects of life

having to do with AiArthritis diseases.

And so this post in particular asks about social life and AiArthritis

disease. And there was an overwhelming response that social life is

deeply impacted by our diseases, and it is affected in many people's

lives that do have our diseases. So we wanted to talk today about the

importance of social wellness, what that means and how we can have

some tips, tricks, modifications in order to make sure that we are still

socially fulfilled, even though there may be some barriers to that so

we're going to go into that. We can start by just first telling you all what

social wellness is. And so according to Northwestern University, social

wellness is defined as developing a sense of connection, belonging, and

a well developed support system. And so, you know, you can only

imagine that for the average everyday to day person, it is important to

have social wellness, but even more so for those that may have our

diseases.

And so why is social wellness important? According to the University of

Omaha, maintaining an optimal level of social wellness allows you to

build healthy relationships with others. Having a supportive social

network allows you to develop assertive skills and become comfortable

with who you are in social situations.

Surrounding yourself with a positive social network increases your self

esteem, and social wellness enables you to create boundaries that

encourage communication, trust, and conflict management. Having a

good social wellness is critical in building emotional resilience. And so as

you can see, all of those things that are important for those just in

general with social wellness are even more so important for those with

our diseases because we do need support.

No matter if it's physical support, emotional support, financial support,

we do need support from our support system every once in a while or

every day depending on how much you might need. But being able to

communicate that and feeling comfortable, like it says, to be assertive

and letting people know what you need is important.

So practicing that on an everyday basis is important to when you do

need that in a in a more serious situation. So I think that was a really

good explanation and definition of social wellness. Do either of you have

any more input?

[00:06:16] Kerry: Yeah, I think what I think is really important, I want to

touch on something that was included in that University of Omaha

explanation is surrounding yourself with a positive social network

increases your self esteem.

And I think that idea that social network is what is so important for us

and quite literally the social network. If you remember the old film, that

was what Facebook was originally referred to as and, and it's, it's all

social media, whether it's Facebook or Instagram or whatever other, you

know, TikTok or whatever it is that you're using.

We often hear, you know, about the dark side of the internet or the dark

side of, you know, social media. There's so many problems here and

there, but what is really, really so important is that especially for those of

us with AiArthritis diseases, that social media, that presence there, that

community that we can find there is something that can really help us

keep going when we are not able to go out and, you know, especially if we don't, if we're not able to work because of our conditions, we're stuck

at home, especially if our symptoms keep us down a lot, we're stuck at

home and it's really, really easy to just become isolated and depressed.

And so, what is the greatest gift to all of us is the ability to find each

other through the internet to find other people living with the same kind

of diseases, other people dealing with the same kind of problems,

because we can build such strong relationships there that they really can

be life saving, life altering, comforting, and can just do so much for us in

so many different ways.

And I think that we really need to give things like social media the credit

for the great things that they do, even though we often hear about the

problems that we have from them.

[00:08:16] Estela: And for me, I, you know, I like that, Kerry, I like that

you're talking about, like, one of the aspects of like social wellness, right,

is that connection that people find in social networks.

Whether it's Facebook, Instagram, you know, Twitter or X now, but really

when you're looking at to me, when I think of social wellness, it's really,

you know, something that is vital for all of us, right? It's the ability to be

able to connect with everyone or with others and form those

relationships that you need.

Now, some people may think that this social wellness can come from, or

this social connection or these relationships can come from family

members. That's not always the case. Not everyone has family members

and others that may have family members, they're not as supportive and

they're not connected and they don't have that.

So I think it's looking at just basically the connection that you have with

others and that relationship that you form and not only fostering that

meaningful connection, but also having it impact our, you know, our

relationships or our lives both mentally spiritually and physically and

what do I mean by that?

I mean connecting with someone that provides us that that support,

right? So for me, I'm also besides being a patient advocate and also

living with a condition, I'm the number one supporter for my sisters for

my and for my mom and you know, our relationship is amazing because

I'm able to understand them.

I'm able to learn from them and I'm able to support them. So whether

that's with a simple hug, and that's the physical touch that I'm talking

about, the emotional support is anytime that they need me, they can just

call me and I will pick up or that spiritual where I will go to church with

my sister. So I feel like you know, these connections again are vital. So

whether I connect with someone on social media and I'm able to relate

to them or they're able to relate to me and provides that support, I think

overall social wellness is that connection, whether you're family or

friends or just simply someone living with similar chronic and or

autoimmune or arthritis or arthritic conditions.

[00:10:35] Leila: Absolutely. I think that you both made amazing points. I

think obviously, after the pandemic, we've learned that technology is our

biggest tool, especially with patients with AiArthritis diseases. I think that

us having to lock down really made sure that we knew that connection

can be formed in other ways.

So I am very glad that that has become more of the normal for the whole

world and not just AiArthritis patients so that it can be accommodating

for us to be able to make connections that way if that's how we prefer. Of

course, in person connections do sometimes hit a little different than,

you know, seeing someone on a screen.

But that doesn't mean that those relationships aren't just as meaningful

as the ones that you also have in person. So I think that's also to is

something that I've noticed that even if you are mostly just talking to

someone through the screen, that doesn't really mean much as long as

you both are genuine in your connection and, and making the effort to

have that relationship.

I think that you can definitely get support through technology and social

media and things like that as well. So I wanted to maybe talk a little bit

about our own social lives and how we deal with being able to make

sure that we have that social wellness. I know that for a lot of us, we

may tend to, you know, go and actually physically hang out with people.

It might be far and few between, or it might be something that you don't

even think about, that you're like, oh, this is a part of my social life and

my social wellness. So I would love to open up the conversation to either

of you to start talking about how you approach your own social life.

[00:12:18] Kerry: Okay so it's funny when we first, when I first saw that

you, we were going to do a show about this topic, what immediately

popped in my head and I just had to laugh is that gosh, it's got to be

maybe six or seven years ago.

I saw a post on Facebook. Somebody had posted something it said you

are the average of the five people you spend the most time with and as

soon as I saw that I just automatically responded. Okay. Well, that's

probably my husband my mom and I guess three doctors and It just it

was kind of the automatic maybe a little bit snarky but then I it just got

me thinking and how real that really was and I ended up, you know, I

had to kind of explore it further and write about it more and and what I

ended up doing was I sort of took a look at the past month and I made a

list of every time I I saw someone, had some sort of in person social

interaction with somebody throughout the month.

And it happened to be April, which is Sarcoidosis Awareness Month, and

so that's the time that I am probably busier than any other month

throughout the year. And I think I had maybe ten incidences throughout

the month where I actually saw somebody outside of my medical

providers, but then I looked at my color coded calendar and so all of the

red on there, which is what I use for medical appointments, and I had

something like 13 or 14 of those within that month, you know, so it just,

and that was actually a light month when I didn't have a whole lot going

on significantly that, you know, I didn't have a new outstanding urgent

problem to deal with. It was just, this was my regular thing. And I had like

13 or 14 medical appointments in a given month. And it just made me

think about how important it is to have that social interaction, to have

that social life.

You know, I was able to see throughout those, you know, those 10

activities included seeing my mom for Mother's Day and my mother in

law for her birthday. And, you know, so there were a couple of holiday

occasions where I actually got to see family and a couple of times where

I maybe had dinner with a friend of my husband's because most of my

friends in person have kind of faded away or they're just too far away to

really get together.

So I just kind of really was thinking about how, you know, in addition to

just the fact that I had so many more medical appointments than fun

things, social things what I also looked at was the number of things that I

had to cancel. And there were probably more things that I had to cancel or say no to then there were things that I was able to actually do. And so

I think that's when, you know, yes, it's great to go and have dinner with a

friend. It could take a week of recovery after going out to dinner with a

friend. So that's when I think it is so much more critical to make the most

of what you do have.

And for me in person, that's my husband and my mom. And I know that I

am very lucky to have them. Beyond that, for the most part, it's my

sarcoidosis family who I see mostly online. It's my arthritis family who I

see mostly online. It's my rare disease family who I see mostly online.

And that, you know, like you said, Leila it's something that, you know,

people who don't have it might not understand, but just because it's

through a screen doesn't mean that we, you know, we can still have and

create some of the deepest, most genuine, closest relationships with

people because of the bond that we form from these other things. And

that really can't be discounted. You know, it's sad that there are a lot of

people who I thought were friends who have kind of faded and drifted

out of my life. But what I need to do and think about and kind of reframe

it is that I have the people who really matter, the people who really care.

They are the people who are in my life, who will stay in my life, and they

are the ones that matter, and they are the ones that make me feel better

when I need it. So, that is really kind of where the shift comes, I think, for

me.

[00:16:53] Estela: And for me, I think, you know, it's talking about what

are the components or what makes up this social wellness, right?

For me, you know, you're talking about emotional support, you know,

which is really, again, the ability to connect with others, right? And then

you have these social connections, right? Which these social

connections just like you were saying, Kerry, they're the people that,

that, you know, you connect with on social media, whether, or your

family members, right?

These people connect with us at a different level because not only are

we connecting, but we feel trust, we feel like heard, we feel included. We

are able to express ourselves. We're able to feel acknowledged and I

think that is really what helps us, right? This social connection that we

have is what is going to relieve our stress, which hopefully prevent our

flares and again, promoting both physical and mental wellness.

Now when you're talking about this social wellness that comes about

from these connections with these other people, whether again, family or

friends, or just, you know, someone that you meet online. We feel so

lonely. We feel alone when we are first diagnosed, you know, whether

you're just diagnosed now or whether you've been diagnosed for a long

time living with your condition, you're still going to feel lonely at times.

You're still going to feel stressed. You're still going to need someone,

right? We're just creatures of habit. We want to connect. We want to feel

loved. We want to be heard. And so what we need to do is try to connect

with others, whether if you're homebound, you know, you do it on social

networks. or support groups, right?

You form these amazing relationships. For me, I get my social wellness

from my family, from my friends, from the support group. So I actually

facilitate support groups with my sister and every relationship is so

unique, right? And they both, it's nurturing, not just for me, but I think

also for them, you know, you build this connection that you wouldn't

have otherwise, you know, you're vulnerable, you get to express

yourselves.

You get to feel heard and understood. And most importantly, I think you

feel seen. I mean, I, I can't even describe that feeling, you know, of hope

that you get from others when they're learning from each other, when

you hear about what can help you or what's helping them. I think just

overall, just again, you know, those connections that we built no matter

with whom or with, or what form or location, I think those are very, very

vital.

[00:19:33] Leila: Definitely. I think it's very interesting talking about this

topic for me because I grew up having lupus. I was 12 years old when I

was diagnosed with lupus, so it's always been a part of me prefacing,

like, with people who are my friends like they do know and they've

known for a very long time that I do have a condition where I will need to

cancel sometimes.

I will need to take some time for myself every once in a while. I think

there's a weird juxtaposition because when I was younger, I did not

really care about my health as much. And so I would prioritize

socializing. And so I graduated college in 2019 right before the

pandemic happened. So I went from having a very robust social life to to

having just the people that were around me.

And luckily I did live with two of my best, three of my best friends,

including my now husband and two of my best friends that were a part of

my wedding that I just had a few months ago. And so we were able to,

stay home and make a really great time during COVID and I'm so

thankful for that. But the transition after that was very hard for me

because I had gone from always being a part of a community, whether it

be dance or volleyball or the Filipino club that I was a part of when I was

in college, I had always been surrounded by so much socialization.

So moving then to you know, in 2020 on to now in 2024, I've struggled

actually to find a community that I wanted to be a part of and felt like I

was a part of. And I have been striving for that for a while, for maybe

about a year and a half and kind of picking my brain to see what else I

can be a part of.

And I've been a part of AiArthritis for about a year and a half, and that

has really brought me a lot more socialization, a lot more understanding

or feeling like people understand me and my condition, and also being

able to, you know, be a voice of being able to help others that have our

diseases too. I feel very grateful every day that I do have, you know, a

milder form of lupus where I'm not debilitated. I don't feel like it affects

my everyday life, but I know that it's taken a lot of work and a lot of help

to get to that point. So I still make sure that I keep the time for myself. I

probably only go out and go hang out with people once or twice a month.

I don't, we really, you know, stay in the house a lot, but I'm also lucky

that my best friend is my husband. So we socialize with each other all

day, every day, and have so many things to talk about. Also during my

wedding, I was able to revive my friend group of our middle school

friends. So I have a little group chat that's been going on for ever since

January.

We check in with each other every day and keep each other accountable

for the different goals that we have right now. So I feel like that's been

very helpful for me. And just in the past two months, I've been very

active on TikTok. Some of you who may have seen previous episodes,

but I recently got vertical sleeve gastrectomy surgery in June of last

year. And I did not know until recently that the weight loss surgery

community on TikTok is huge. So I have been jumping into TikTok lives

with a lot of different people who have gone through this surgery and

talking about all the different lifestyle changes that we've had to make.

But I've additionally, you know, on TikTok, you can have a little screen

name that kind of explains what your page is about.

So mine says Lei vsg and lupus. And so whenever I go live on TikTok,

I've been able to find three other people that have also had the same

surgery as me and have also had lupus. And so I've been able to find

such a very niche category of people on that. But it made me feel seen

and it even more so made them feel seen because I was the one going

live talking about my experience answering questions and things like

that.

So that has also really made a big deal in in my social life so far. So I've,

I've been striving to find a community and I feel like I'm kind of getting

there. I eventually do want to get back into dance and things like that,

but for now in the interim, I feel like this has been a really good option for

me to get the socialization and meet new people.

And I think one thing that we should also hit on is how hard it is to put

yourself out there in order to find these relationships sometimes. Like,

you know, I post on social media, Kerry posts on social media, and so

does Estela. But even just to find the right audience and get the right

people to see your posts sometimes can, can be hard.

So how have you all, like, put yourself out there to make those

connections online and kind of further that relationship? Because I think

that that, that might be something that our community would really like to

know. I mean, I'm a naturally extroverted person where I do like to put

myself out there, but there may be people out there that aren't

necessarily like that. So what kind of advice can we give to those people

to, who are looking for social connection but don't know, really know

where to start?

[00:24:48] Estela: I mean, I can, I can start. One of the things and kudos

to you Leila, because I have been following you on, on TikTok. And I

think it's amazing that you're putting yourself out there and sharing your

experience, because the one thing that we're talking about here, right, is,

it's about connection, connecting with others that may, may feel alone, or

even for yourself, if you're feeling alone, right?

We seek that connection. And I think, you know, putting yourself out

there, you know, it's, it's, it's that vulnerability that we, you know, that we

have, right? And I think that's what you could see that through you. So you're being vulnerable, but you're also being you're empowering

yourself and you're empowering others to let them know that it's okay to

not be okay and to be vulnerable and to talk about these things that not

everyone talks about right? Not everyone talks about their chronic

conditions. Not everyone talks about personal life experiences with like

surgeries or procedures Because you know it could be taken a whole

different level at a whole different level It could be a positive thing and it

could also turn into a very negative thing very quick, right? And you have

all these judgments. So, for me, I think the one thing that I would

recommend for everyone is to have that balance, right?

To be able to feel, you know, seen and heard and to be able to share

and connect with others, but also prepare yourself when you're exposing

a lot of things that you may not want to get any negative criticism or

feedback from and limit yourself and what the responses that you, you

give back to those negative comments, right?

Because that could be also hurtful. So you don't want to overwhelm

yourself. So I think balance is a good thing. And then also learning about

you know, recharging and taking time off of the social networks or just

social connections. Leila, you mentioned like you have taken time off,

like sometimes you're very active and then you take a month off or you,

you know, we have to look at those things, you know what is best for

you, right?

I'm very extrovert too. I could talk to everyone and anyone, but I don't

share everything on social media. I don't. There are things that I do keep

private, but anything that has to do with me helping others or sharing an

experience about something that I know can help someone else, I put

myself out there.

But when it's something super personal, I don't. So having that balance

is critical.

[00:27:20] Kerry: I definitely agree that balance is, is very, very

important. And there were actually a couple of things Leila, that you

mentioned that I think also are worth. noting. One is that you said you

had lupus since you were a child and so you grew up with this chronic

illness and how much you, you know, told people or didn't tell you,

prioritized your social life when, you know, not thinking as much about

health and, but you've grown up with this.

So I think in some ways you've kind of had a chance to sort of learn the

ropes or adjust and adapt to what makes you comfortable. Perhaps for a

longer period of time. Whereas, Estela, I'm not sure if you were

diagnosed when you were younger or not until later. But, like, for me,

everything started when I was in my early thirties.

So, the whole idea of, you know, what was a social life, what was my

social life, and how I interacted with people was just an entire world of

difference, and I was a very social, overactive, over, you know, super,

you know, I worked a million hours a week and volunteered a million

hours on top of that and, you know, somewhere in between found time

to, you know, go out, you know, for happy hour after work and all those

other things.

And then when I was still working, but I was getting sicker and especially

during the years when I didn't really know what was wrong with me, I

knew it was something, but I couldn't get my doctors to figure it out. It

was a lot harder for me because I didn't have an I, I didn't even have the

answer to say, oh, well, I can't do that, or I'm really tired.

I have this condition and that's what is affecting me and so I hope you'll

understand or, you know, some other version of that idea of a statement.

I didn't have that. And so people just saw me go from someone who

used to do everything and go everywhere to someone who did less and

canceled more and I was just not as much fun anymore. And I think

that's a part of where I lost some people, you know, and then from being

active at work and working in a very community driven environment and

then suddenly kind of losing all of that. That was all these different

directions and avenues of people that I suddenly didn't have anymore.

So that was really difficult for me because it wasn't just a matter of

growing up with something and not to say that it's easy to grow up with it

because I know kids can be difficult. And so I'd feel for you with that. But

it is, you know, it's a different experience when it comes from having it all

or feeling like you've got it all to losing it all.

And, and so finding that balance, I think, like you were saying, Estela, it's

a little bit harder to get people to understand what that balance is that

you need when you don't have as clear of an answer, or when you have

a condition that people haven't heard of before, or just don't understand,

it's hard for them to understand more of what we're really going through,

and that's where I think, you know, sharing our stories is so important, is, you know, when the world shut down, my husband was still working,

but when he wasn't working, he was home with me. We were, you know,

in it together. And then, as time went on, and vaccines started to come

and treatment started to come and people saw the world as safer.

You know, my husband and his friends wanted to still go out. I still

couldn't. You know, we would see ads for vacations that we would have

loved to have taken and we would have taken a few years ago, but I

couldn't anymore. And so what was really difficult for me was trying to

find the balance between keeping myself safe, but not holding someone

else back.

Which I think is just a very, very fuzzy area, like it's, there's absolutely no

clear line. It's, it's just, it's a challenge. And you know, it's something that

I think I still kind of work on. I've been getting better at going out, but still

with limitations with, I have my own restrictions. And so what I've had to

do is kind of, you know, we together have sort of had to talk a bunch of

times and, and think about and work on figuring out what things.

I'm okay with him doing with his friends even if I don't go because I don't

want him to miss out. And then what things he doesn't want to do without

me anyway because he wants to be with me and I'm grateful for that.

And so that's, I think, you know, it's a, it's a fuzzy line to try and, and

figure. But it's one that really requires communication.

And that's, you know, the, the biggest thing is finding that really being

honest with yourself and with the people in your life who you want to still

have in your life. And I'm not saying being honest and telling every detail

of everything, but figure out what you need and what you are

comfortable with and go from there and communicate that the people

who love you and care about you and deserve to be in your life will

appreciate that and will respect that.

And if they don't it may sound cold, but you're better off without them,

and there are millions of people who are here for you, who do see you,

who do hear you, who do believe you. And who are with you.

[00:35:58] Estela: I love that Kerry that, you know, sometimes we do

have to be flexible and, and I'll be honest, you know, with a pandemic,

you know, one of the silver linings for us was to facilitate our support

groups, both virtually through zoom via zoom throughout the whole

pandemic.

Right now we are offering both the virtual support groups because we

know some people are not ready to come in person. We also host in

person support groups. So for those people that, you know, even though

they're autoimmune, they have their autoimmune conditions and their

immune compromised some of them would rather be in person.

So we do hybrid, so we do in person and we do virtual as well. And it

works, it works for us. It works for a lot of people. And I think it's amazing

because you're still being able to, to connect with both worlds, right. And,

you know, that is one of the things that I love about, you know, a lot of

this social connection is that we're able to do it through different

avenues.

You know, we host a lot of support groups live in Spanish, like just to talk

about everything wellness, right? We want that social connection, but we

also have those in person support groups where we're able to connect

with people and also the, the virtual one. So I think it's just amazing to be

able to do that.

You know, we hosted a, a conference and Leila was part of it in

February, it was a community event. So we were able to both offer it

virtually and offer it to those that were comfortable to come in person. So

I think, you know, that was one of the silver linings with the pandemic is

that we were able to figure out different ways to still connect.

Because again, this social connection is so vital, I think for all of us. And

even though, you know, COVID still around, it is not considered a

pandemic. We as people that live with these immune compromised

conditions still have to be careful and it is good to communicate to others

and have those boundaries and be respected and I think that's why it's

so important to have these connections with the people that you trust

and people that you love because those people that are your supporters

will understand because they have your back, right?

[00:38:09] Leila: Absolutely.

[00:38:11] Kerry: I just was going to say, as you said that, Estela, what I,

what just popped in my head, there's an old Dr. Seuss quote that I think,

you know, I've used a million times, other people have used a million

times, but it says, be who you are and say what you feel, because those

who mind don't matter and those who matter won't mind.

And I think that just really is the key, you know, and I mean, obviously in

this situation, but I think in any situation is, you know, to be true to

yourself and value your own. sense of self worth and comfort and who

you are and what you need. That all matters.

[00:38:47] Leila: I agree. I think that we've touched on a lot of important

points having to do with basically, you know, modifying how social life

looks for people who have AiArthritis diseases.

And I think we can go into the segment of, reading some comments from

this social media post that inspired this topic because it, it goes into a

few more things that I wanted to say also. But yeah, we basically are, we

wanted to ask the social media how they, how their social life is and

what they do to kind of modify it.

One of the green suggestions that we have here, I'm not going to read

everybody's names because it was on Facebook. I kind of want to keep

everybody anonymous if they choose to be. So I'm going to just read the

comment itself. But someone said, I've turned my house into a meeting

place. I'm socially active because everybody comes over and so I think

that that's a really great modification if that's something that you like

being able to host people. It can still get a little a little crazy becomes if

we're you know a little still very cautious of you know what's coming into

the house and if there's people who are sick and if we're worried about

being immunocompromised. But if you you do want to socialize, but you

you're more a little bit hesitant to go out because you're tired and

because of other symptoms of being in pain and things like that.

Having people come over to your place can, can, can really be a good

alternative for sure.

[00:40:18] Kerry: Another comment was somebody said, been a couple

of times I thought I felt too white, too much in pain to go to meetups. I

forced myself to go and was glad of it. Had some pain and fatigue the

next couple of days as I knew I would, but still worth it.

And I think that is also something to keep in mind. There are things,

there are times that it might be worth the consequence to do the thing

that we really want to do. You know, just as an example of that, when I

go on vacation, I will make sure that I make certain plans and, and my

plans include a lot of rest days and that's rest days while I'm on the trip and then at least a week of not having to do anything once I come back

because I know that I'm going to be suffering, but it's going to be worth it.

And so I think that's also something that we can all kind of keep in mind

when something comes up and we, we can think about, is there a way

that we can make it manageable, or think about how much we think

we're really gonna, you know, what we're really gonna feel and how long

that's gonna last if we do this thing, and, you know, sometimes we will

say, you know what this is so worth it, I'm gonna do it, and other times

we'll say well just like that second piece of chocolate cake, you know, if

we think about whether it's worth it or not, then that can make it a little bit

easier, whichever decision we make.

[00:41:49] Leila: Definitely, I think that's not something that someone,

you know, who doesn't have rare diseases thinks about is that we not

only have to plan for the actual time, but the consequences that are

going to come from that.

And nowadays, that's, you know, it's, it's not just the fatigue and the

pain, but also thinking about, yeah, if what's going to happen to my

immune system, when and what kind of sickness can I possibly have

from, you know, all of this going on, like with my wedding in January, I

was like, I know that I'm going to get sick afterwards. There's no way that

I'm not going to hug 150 people and, and be so stressed out about the

wedding that I'm not going to be sick afterwards. So I planned to know

that I was going to be sick after the wedding and knew that it was going

to take another week or two to recover after, but that's things that you

have to account for when you're making these plans, whether it be

going to Disneyland, going to a concert, whatever that may be, those,

those things are in your head, but that doesn't mean that you can't do it.

You just have to be prepared for the consequences afterwards.

[00:42:50] Estela: Yes. You know, and I think, you know, when I was

reading the comments on that post and, you know, you just, you, you

read so many people, like some of them were short, some of them were,

you know, were like explained to more, right.

But the one things that a couple of things that, that, that I was reading

through is like what social life, you know, you know, I don't have that, or

I'm always canceling and, you know, and all of that. And I think the one thing we have to just remember is. we get it like for me when I was

reading I'm like I get it because why?

My sister has lived with autoimmune conditions, you know, she has RA

she has lupus and so many others and you know me just recently being

diagnosed with RA but also having to live with fibromyalgia and and

having to be flexible is one of the things that we have to be okay with,

right? It's that flexibility and be okay and forgiving to yourself, right?

So it's okay to cancel the plans that you already had. It's okay if you

need to reschedule because you're not feeling well. It's okay to block

time when you get back from vacation or block time for rest time, it is

okay to do the things that are best for us. We have to be our own

advocate for ourselves, and we have to be okay with doing that.

So if that means like for me, I mean, I'll be honest, like to take care of

myself, like it takes a lot, right? Because I'm always trying to care for

others. You know, I'm a mom, I'm a wife, I'm a sister, I'm a daughter, like

I always try to put everyone first. But really what we have to remember is

one, you can't pour from an empty cup, right?

So you have to be forgiving to yourself and you have to be accepting of

yourself and accept that there are times where you are not going to be

the best supporter for someone else because you need to take care of

yourself. And for me, that's one of the things that I've been learning, and

it's been a struggle because I wasn't always that person that put

themselves first.

And you always have to remember that practicing self care is not being

selfish. It is just basically giving yourself some time and, and again, it's

okay, you know. And, and again, you know, you have to look at what's

best for you. If instead of going out for coffee, it's a phone call. If instead

of, you know, inviting others, like Leila was saying, like to your house,

because you know, you have to clean before you have to clean during,

and then you have to clean after it's like, let's do a zoom.

Let's connect. Because a lot of the times your friends just want to

connect with you. You know, they don't want you to host them. They just

want to talk to you. So virtual connections is something I recommend,

being flexible, being forgiving to yourself and allowing yourself some

time. So those, those three things to me, I think are vital and you know,

again, if you surround yourself with people that are supportive and that understand you, it is going to be a lot easier. And I think that's why it's so

great to be connected to these communities, because this post allowed

people to, you know, be heard, right? We're listening to them. We're

reading their messages.

And then also for me on a personal note, it allowed me to say, gosh, like

I'm not the only one, right? I feel seen myself as well. And then one, you

know, we're here supporting each other and supporting that community.

So this all, you know, kind of just is a summary of what social wellness is

all about us connecting through social networks, being here virtually and

being able to connect and understand each other.

[00:46:41] Leila: Yeah, I think that one of the things, like you said, like

there's a lot of people that overwhelmingly had the negative comments

on the social media posts. And I wanted to adjust that because a lot of

people said, what social life, you know my, my social life is affected all

the time.

And I think changing also the mind frame of what a social life can be. I

think that we've done that in this episode is, you know, explaining the

other options that we have for social life and not just meeting in person,

going mini golfing, or going to do whatever other social activity you might

want to do.

But really changing that mind frame of a social life is just connecting with

someone on a deeper level, whatever that may mean to you, a text

message, a phone call, a zoom call, or anything like that, or an

Instagram live, whatever it might be. And having a mindset of gratitude

of being thankful that you do have this technology to be able to connect

with people or being able to see that as your social life instead of just

thinking that it is going out and going to the movies with your friends and

and dinner parties and things like that.

I think that trying to invest the time into social media or an online

connection can, can be very, very powerful for people if that's something

that you'd like to try. I personally do prefer TikTok because I feel like

TikTok is a little bit more unfiltered and that there's a lot of people that

are able to, you know, really express their, their true selves on there.

Sometimes, you know, for the younger generation, for millennials and

Gen Z, it can be Instagram is an ideal life and everybody is perfect and

beautiful and, and all of that on Instagram. And that's what, that's what I kind of see from social media and that TikTok is a little bit more raw and

unfiltered and real life.

So there, and it's not just the younger generation that's on TikTok too. I

think a lot of people have that misconception of TikTok, but I interact

with loads of people that are, that are older than me, that are in their

40s, even in their 50s looking for social connection online on TikTok. So

if that's an avenue that you in particular might not have explored yet, if

you just go on there and look for the community that you're looking for,

search any keywords, you might be able to find people that are, you

know, looking for connection as well.

So that's kind of one of my suggestions is maybe trying a new social

media platform that no one knows who you are. And if you're genuinely,

you know, kind of afraid to put yourself out there in, in the space that,

you know, people may already know you, then TikTok might be a good

place for that. Any other final words or suggestions that we might have

on social wellness and how to improve your social life?

[00:49:20] Estela: Well, you know, to me, I think you just gave a couple

of great examples of why you're turning into TikTok versus any other,

you know, platform. You know, you always hear Facebook is for the

older generation. You hear, you know, Twitter X is more for like, okay,

you know, it's It's a different audience, right?

You have a lot of like the politicians and a lot of the stuff and on in

Twitter or X. And then TikTok is more for like everyone. It's more

inclusive, I feel. And you get to interact with different age groups. So for

me, I mean, I'll be honest. I think just know there is no one specific way

to interact or to connect with, you know, with others, whether it's on

social media or whether it's a support group or whether it's the

community.

Whatever it is that makes you feel connected, that makes you feel seen,

that makes you feel heard, is really what's going to be the best thing for

you. So, there is not one single thing that I would suggest or

recommend. So, again, you know, what is the social wellness that we're

talking about? We're really talking about fostering those meaningful

connections, whether it's in person or virtual, right? And it is utilizing

these connections to impact both our mental, our emotional, and our

physical health. So look, whatever makes you feel good, whatever makes you feel connected, seen, and heard is really what, what I

recommend for everyone.

[00:50:57] Kerry: Yeah, I definitely 100%, second, third, what you both

have said, having the options and knowing that there is always another

option, what we are able to connect with and who we are able to connect

with and why we are able to connect, it, it supersedes any of that

superficial stuff, you know, it supersedes age or location or gender or

race or, I mean, yes, absolutely those things come into play in a lot of

reasons, in a lot of different situations and, and all of that and they do

matter. But chronic illness and AiArthritis conditions and rare diseases

and disability, those things happen to everyone.

That's something that we can all share because nobody has to be in it

alone. And that's really the single most important thing.

[00:51:54] Leila: Absolutely. I think that that was a really great stamp on

the end of the conversation. Yeah, it affects everybody. I'm sure that

there's people with without AiArthritis diseases that are still struggling

with figuring out where they find their place and how to be social and

where to find their community.

And so that's not something that we have to, you know, think that it is,

you know, there's some extra barriers for us. But, you know, we're all

still, you know, lifelong learners of trying to figure out what's best for us

and, and trying out new things and you know, finding that peace,

whatever may bring us peace.

So, thank you both again for being here and having this conversation

with me today. I feel like it was a great conversation and there's some

really good things that people can relate to that we talked about. So, I,

I'm, I'm, I'm, I'm I thank you again both for being here today and being

involved in the conversation.

I'd love to give you both again the chance to shout out anything that

you're working on. Let us know where we can find you on social media

and connect with you there if, Estela, you wanted to start?

[00:52:58] Estela: Yeah, I can start. So again, I'm Estela Mata from

Looms 4 Lupus. I also co host a lot of the support groups with or

facilitate the support groups with my sister Juana.

We provide support not just for those living with autoimmune conditions

like lupus and overlapping conditions like fibromyalgia and mental

health, but we also provide support for caregivers. We provide these

services both English and in Spanish. We have toolkits to help you, you

know, continue to thrive despite living with these conditions.

And I think most importantly, we have support groups, both virtual and in

person. We host conferences, symposiums, both virtual and in person.

And I just want everyone to know that even if you don't have the

conditions that we're talking about, right, we're encompassing so many

autoimmune conditions and overlapping conditions.

We are connected, right? We're a community connecting others

together. So just here, even if you don't have the conditions that we

mentioned, we can connect you with others. And I think this is why I love

working with AiArthritis is because we are really all of us working

together to making a better community a better resource creating

resources for everyone and you know just remember like we're really

just knitting a community of hope and we're here you can find us on

@Looms4Lupus on Facebook, on Twitter, on YouTube, on X.

And if you are Spanish speakers or you know someone who speaks

Spanish, my sister has her TikTok account. We have our personal

accounts, but everything you can find under our link tree, which I think

you're going to post, Leila. Everything there. We also have a consulting

company called MAS, MATA Advocacy and Support, and we realized we

were reaching to more than just lupus, more than just fibromyalgia, more

than just the caregivers, and which is why we launched that.

So if you want to book us for any speaking engagements, we're

available to do that as well. But we support, we advocate, and we

empower those living with these conditions. So I hope that, you know,

We were able to give you a little bit of insight and connect with you all.

[00:55:18] Leila: Thank you and Kerry?

[00:55:20] Kerry: Well, how am I supposed to follow that?

But I am Kerry Wong. You can find me. I am also, you know, also known

as the butterfly from Float Like A Buttahfly is what I kind of do most of

my advocacy under. I, and just a quick spelling note on that butterfly. I, am from New York. And so you can find me at @ButtahflyK on pretty

much all of the social media.

And you can see the social media, all the links on my link tree at, at

ButtahflyK as well. And the, you know, again, like I said earlier, what I

really always want to do, my goal in kind of every direction is to help

people living with these conditions to feel seen, to feel heard, to feel

understood, to feel believed, and to know that you are not alone.

And along with that, to kind of help educate the people around us to let

them get a better understanding of what it is that we're living with and

what it is that we're going through. And so, I do have, I mentioned

earlier, I have a regular column at Sarcoidosis News. Column is also

called Float Like a Buttahfly.

I, most recently, I am super excited to share, once again, I just published

a book called Kaleidoscope, Rare Disease Stories, Elevating Other

Voices to Share More Stories to Reach More People. And, you know,

that is just, I think it's one of the most powerful things that we can do is

to share our stories and build those connections.

And so, this book is available on Amazon now. And it is also going to be

a series with the next book. Not starting it yet. But keep your eyes out for

the next book is going to be a Kaleidoscope of Invisible Illness Stories.

And I know that just about everybody who is watching this or listening to

this knows where we're coming from with that.

And so again, it is you know, the Kaleidoscope Stories. I will be sharing

voices and sharing stories because what you say matters and you all

have a story to tell. And more than that, there are so many people out

there who need to hear it. And I'm trying to help with that.

[00:57:33] Leila: Thank you, Kerry. We really appreciate that.

And you can find AiArthritis on all social media platforms at ifairthritis.

You can find me on Instagram and TikTok at Lupus.Lifestyle.Lei. If you

or anybody that you know has an AiArthritis condition and is also

considering weight loss surgery, I would love to be able to talk to you,

talk to you about any concerns that you might have and let you know

about my experience with the weight loss.

I have had a lot of really big improvement with my lupus symptoms and

my joint pain and everything like that. So if there is anybody that you

know that is considering a surgery, please send them over to me on

TikTok and have them take a look at my page. If they have any

questions, feel free to ask them to me.

If you are looking for any other resources about any other AiArthritis

conditions, you can visit our website. site at www. aiarthritis. org. We

have a lot of different things going on. We have World AiArthritis Day

that's coming up in just less than two months. So we are prepping for

that coming soon.

Along with that, we also have our Grace and Abel compression gloves

that we have been promoting. Our chili red color that any of the

proceeds that come with those gloves, part of the proceeds does go to

our organization. If you're looking to order anything else from Grace and

Abel, we do have a coupon code that is AIARTHRITIS10 so that, you

know, 10 percent of your purchase can also help donate to our

organization.

Yeah, if you are looking to find any more information about us, please

make sure to take a look at all of our social media platforms. And thank

you again to Estela and Kerry for being here with me in this conversation

today. And we'll talk to you soon. Thank you.

[00:59:21] Outro: AiArthritis Voices 360 is produced by the International

Foundation for Health for autoimmune and autoinflammatory arthritis.

Find us on the web at www. aiarthritis. org. Also, be sure to subscribe to

this podcast and stay up to date on all the latest AiArthritis news and

events.