#140 - Kayleigh Staigh - Fighting for Answers When the World Doubts You - Long Term Podcast

Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Happens with so many people's chronic illnesses.
They go to a doctor and they've done their research, they know
their body well, they've lived with this illness for a long
time and they bring something upto the doctor and they say, no,
you're wrong. Like that's not what's going on.
Debilitating pain that leaves melaying in my bed with a heating
pad for hours and bleeding through like a pad every two
hours. Like, like I would get a pain in

(00:21):
my pelvis and then it would shoot down my leg and then I
would have to sit down because Iit hurts too much to walk
because of a period pain. Or like I would be crying in in
the middle of public because I heard so much and like, I would
change color because of the pain.
And yeah, so I'm like begging her for help at this point.
I'm like, please, please, you need to do something because I
can't live like this. And that moment I cried tears of

(00:42):
relief because I was like, there's actually something that
is wrong. And it's not just, it's not just
my normal. So I've been dancing since I was
four. We all share the same passion
for dance. We're all committed.
And I would say like the Ukrainian communities pretty
welcoming if if you're not Ukraine, you're welcome to come
dance with us or practice any kind of culture or do any.

(01:04):
I have endometriosis, a mass cell disease, and then POTS,
which is postural orthostatic tachycardia syndrome.
And it's like a autonomic nervous disorder.
But in that even in that you have the freedom to express
yourself, even if it's. Yeah, the initial decision was
so hard. And I like thought about it for
weeks and was to tell them I wasso upset.

(01:29):
I was like, I have to take a break and I couldn't get up
every day without without knowing that like Renton and my
family and my friends would be there.
Yeah, that's awesome. That's great.
I mean, a shared joy is double the joy.
A shared sorrow is half a sorrow.
Hello, You Beautiful people. Welcome back to the LONG Term
Podcast. I'm your host, Advan Villa.

(01:52):
Today we have Ukrainian dancer, child care worker living with
chronic illness, Kaylee stay. We will discuss culture,
physical and mental health and having a support system.
Kaylee is a wonderful person andshe's been dancing since she was

(02:15):
four and she's very dedicated toit.
But sadly, she's had to withdrawthe passion of hers with which
is Ukrainian dancing. And it's it's tough because
she's, you know, she didn't haveall the answers.
She just kept feeling so fatigued all the time and sick.
And, you know, the doctors tell told her that she everything was

(02:38):
fine, but she felt off. But she kept fighting for
herself and kept going. And she is a true inspiration.
She still remains positive despite the tumultuous times
that she's been through. I am immensely thankful for her
being here today and being so brave to open up with her story.

(03:00):
And despite everything that's happened, she still, you know,
has so much gratitude. And I, you could learn a lot
from her. I know I did.
And yeah, I this is a great one.Everybody welcome.
All right. Welcome, Kaylee.

(03:21):
Stay, everyone. Yeah, It's been.
It's an honor to have you on today.
Thank you. Yeah.
So what role has Ukrainian danceplayed in shaping your identity
and sense of belonging, especially especially during
difficult times with your health?
So I've been dancing since I was4, which is a long time.

(03:42):
And I mean 2 -, 2 years, still along time.
And I've had the same director since I was four and the same
group of people around me for a very, very long time.
And I've learned a lot, not JustDance, but so many life things
through Ukrainian dance. Like found a sense of community

(04:03):
with that because it, it's not just like one, like the base
thing is that we all share the same culture.
We're all not even everyone, buteveryone appreciates the same
culture. And but then building on that,
like as we get older, we all share the same passion for
dance. We're all committed.

(04:23):
And I would say like the Ukrainian community is pretty
welcoming. If if you're not Ukrainian,
you're welcome to come dance with us or practice any kind of
culture or do any like we make pasenka eggs, you know, it
doesn't matter if you're Ukrainian, come and do it with
us. It's lots of fun and.
Pierogies, yeah. Exactly everyone loves
pierogies. You know too Ukrainian to eat

(04:44):
pierogies. So it's just kind of built held
my confidence a lot too with dancing.
And when you are performing, youare performing right.
So your posture is good, you're smiling, you're most important
thing is you're enjoying yourself, but you're looking,
you look good on stage. That's very important.

(05:06):
And so that's really helped my confidence a lot.
When I was little, I was like labeled as shy and the quiet,
but I don't really. I don't know if I would say
that's I'm shy, but. You broke out of your shell
through dance in the community. Yeah, exactly.
Yeah, definitely. And then in like tough times at

(05:29):
a a different time in my life when I wasn't, I wasn't sick,
but I'm going through some mental illness and I know, I
knew, I still know, but that I could show up to dance practice
and put it at the door. That's an important thing.
You leave your whatever is negative or bring you down at
the door so that you can ignore it and enjoy the dance and enjoy

(05:52):
the practice and perform. So when that kind of time I was
able to go to dance and see all my friends and put that put
those troubles at the door and leave them there until I left
and have a break kind of from itand from thinking about it and.
Get into that flow state. Exactly.
Yeah, yeah, yeah, 'cause when you're you're there, you don't,

(06:15):
you ruin it too much in our troubles, right.
And it becomes intensified. But then when you park it a
little bit and then you go and you hang out with friends, you
dance, you come back to it and it's it's lighter.
Yeah, exactly. Yeah, yeah.
Do you know what kind of feelings kind of bubble up to

(06:37):
the surface whenever you're in that flow state?
Like how would you describe it? Kind of like, like kind of
freedom, like you're confined. Not unless, I wouldn't say
confined, but dance is strict, right?
If if you've ever seen a ballet dancer, they're very, very

(06:57):
technique and not just doing whatever they want.
It's very, this is the rules. You follow the rules.
But in that even in that you have the freedom to express
yourself, even if it's kind of like there's rules to it, you
still can. And how you show your face and
when you perform it conveys the emotions of the dance and how

(07:23):
you move your like, move your hand with your head is all very,
very important and how you are showing the emotions of the
dance. And with that you have, I would
say you have freedom to express yourself even however you're
feeling. You know, like if you're even if
the dance, if you're not performing, you're practicing

(07:45):
and you're sad, you show it on, you can show on your face.
It's OK for certain kind of dances.
And then aside from that, when you're in a, for me, when I'm in
a dance practice or focused on dance, right, it's not focusing
on what you did today or dancing.
And so with your friends, you'reexpressing your culture and

(08:10):
expressing your emotions and howmuch you love dance through
through dance. Yeah, it's very well structured,
Hey. And when you're up on stage
there or even when you're practicing, it's like, like,
yes, you're showing emotion. But when you're showing sadness
because you're in the routine, it's kind of like, like a happy
kind of sadness, you know what Imean?

(08:30):
Like it's like cathartic where like I've never really seen
someone dancing like with an actual sad look.
Like yes, it conveys emotion. Like maybe it maybe towards like
a sad kind of vibe, but it's notactually truly sad.
Like, boohoo me, you know what Imean?
Yeah, absolutely. Yeah, definitely.

(08:51):
I, I don't know how to dance myself.
I don't think I've ever any had like formal training.
But there's this private gym at my, the work at my work right
now. And then I could plug in my
phone and they got like a surround sounds speaker.
And I just love to just move thebody, you know, And they got

(09:12):
some mirrors there. And it's just like fun, like
whenever you I can, I can see the, the thrill the people get
out of it. And it's just so, so freeing.
It's like you're just moving thebody, you're expressing yourself
and whether it be like anger 1 from 1 moment to happiness and
you don't have to say anything, right?

(09:34):
And it must be so rewarding being with the the culture,
right? And being around people.
You're building this routine up.It's all structured.
You're following rules, you're doing it to the beat.
But yeah, it's since you were 4,you were doing it.
Yeah, and it's a lot different when you're a kid.
I mean, it's mostly just go on stage and remember the routine.

(09:56):
But like, I wouldn't even say training as a kid, you're not
training for me, I was not training.
I was just having fun and doing kind of running around.
But as you get older, like that's kind of to start as a
kid, you have I, me, everyone has pride in that.
They've been dancing for so longand you, you as you get older,

(10:20):
you begin to truly love it. Like maybe when you're a kid you
like going to dance and it's fun, but like it's, it's a
different kind of love as you get older is love for the art,
love for the community, and lovefor like expressing yourself
through movement. Yeah, yeah.
Did you ever have like, because I know whether you love

(10:41):
something, you know enough, likesometimes your parents going to
have to force you to go. I know when I was in when I was
younger, I I love going to school, right?
I love to see my friends, but just some days, right, Just like
didn't want to go. But then once you get there,
right, it's like, whoa, like I, why didn't I want to go?

(11:02):
And then you ever get those? Yeah, there was at least a year
in my time in my life where my parents were.
My mom was mostly forcing me to dance.
What do you, what do you mean? You have a smile on your face
every time It's like my little brother, like he he whines every
time. Every time he he needs to take a
shower or bath. But then after it, he's like, in

(11:23):
such a good mood. Yeah, like, like sometimes as
kids, right? We don't know what's good and
bad for us, right? We just kind of go based on
emotion. And then that's how we have
guardians or parents look out after us and go, I know what's
best for you. You have to do.
You have to do this. You have to go to dance.
Yeah exactly. Heard something recent or my

(11:44):
boss said it to me. She said she tells the kids that
we don't quit on hard days or bad days, only on good days.
So like if you're having a bad day at something, you you don't
want to go to it, but if you truly don't want to do
something, you'll know on a goodday.
Yeah, it's like the reflection, right?
If you have a bad day and if that's like emotional based kind

(12:07):
of decision making, and if you do that, you end up regretting
it. But if it's like on a good day
and you've done reflection and you're looking back and there's
all these different iterations, like, yes, maybe you should quit
that because, like, you truly aren't passionate about it and
you're gritting your teeth. But if it's like a bad day where
like, maybe, you know, you stub your toe, you stepped on a Lego,

(12:29):
maybe you just, you know, you, you tripped and you somebody saw
you and it was just an embarrassing day.
You shouldn't make those decisions on the spot.
Give it some time. Yeah.
Yeah, you. Where do you work if you don't
mind me asking? I work at Kids Strong, which is
a like kind of athletic play thing for kids and they come for
45 minute classes and I'm a coach and also reception a

(12:53):
little bit. But we teach them like fitness
stuff. But it's really focused on their
confidence. So they come and like some kids
come and they they won't talk, but then they come to Kids
Strong and after like 10 classesor whatever, they're talking to
everyone because they're confident.
Oh yeah, how do you make a kid confident?

(13:14):
Well, the curriculum, like the program is structured so we do a
social greeting, which is like we go around and they introduce
themselves. We introduce shake hands every
single day and then it's they'reinteracting with their peers and
like people that they don't knowand high fiving all the

(13:34):
grown-ups in the lobby. So like grandparents, parents of
other kids that they don't know high family them telling the
parents are telling them good job.
So they're interacting with people that they don't know,
which is scary, but eventually they get comfortable and used to
it and it builds up their confidence.
And then all of a sudden, maybe not all of a sudden, but over
time, they're talking to anyone and they're not afraid anymore.

(13:55):
Yeah. Does it ever get did they get
too confident sometimes where they're like just talking to
everyone? Definitely sometimes.
They like to me, you can't just be talking to everyone.
Okay, a little little difference.
Exactly what are some good Ice Breakers for for kids like when
they get get to know each other?What's your favorite color is
the literally the simplest questions that maybe you

(14:16):
wouldn't think to ask someone like our age wouldn't be like go
up to someone and say, oh, what's your favorite animal but
like. But, but, but those are actually
some good ones, though. Yeah.
Like if somebody, if somebody came up to me like what's your
favorite animal? What or what kind of animal
would you be if you can pick howthis guy is.
This guy's on to something, you know, maybe a little bit weird,
but I'll talk to him. Yeah.

(14:39):
Yeah, yeah. What's what's your favorite
animal Floor bears? Well, they're bears.
They're vicious, though. They are, but they're they're
cute. They're.
Cute. They're cute and like a plushy
version. Exactly not a real.
Like pictures, but you saw one in person.
You know why is it like literally you take any vicious
animal and you turn them like ifyou just, they're kind of cute

(15:00):
and like a plushy, right? They're like a little drawing
like a crocodile, right? They're like.
Fuzzy ones. They're fuzzy, right?
You would want to pet it, right?Yeah.
Yeah, like hippos like hippos, but they're like.
They're very mean. They're mean.
Like they, they drown people. No, like they're really, really
mean. Like if they catch you.
Yeah, good luck. They're like, what else?

(15:21):
Snakes can't be cute, though. Snakes.
I don't know. When I was little I wanted a
snake so bad. Really.
Yeah. What about it?
I don't know, I I read a book I think and someone had a pet
snake and I'm like, wow, I want that wow.
And I did not get a pet snake. I have I've I can you This girl
in high school had a a pet snake.
Really. Yeah, I just rolling around

(15:41):
here. It was on her snap story all the
time. People like what?
Danic, What are you? What are you doing?
You're so cute. Is it looks like it's going to
strangle you. A little bit, yeah.
Like how do cultural traditions or your connection to Ukraine
help you find strength or healing through your medical

(16:03):
journey? So lots of culture traditions
actually are based on religion and we're my family is not
religious. We never were.
And so I know of some of them, but I don't really participate
in the religious ones. But Even so, if I happen to be

(16:24):
around it and there people are doing it, I will participate in.
I like them, like the praying and the prayers are very in
depth and very, I don't know, very like dedicated.
And again, I'm not religious, soI don't really know.
But I still, I don't know. I like to participate in them.
But lots of art we do. So Basenka like egg drawing,

(16:48):
writing the eggs. It's lots of fun.
It's hard, but it's lots and lots of fun.
And I've been doing, I did it last year and this year again.
And I did it when I was little, but like it's not really the
same. You're just scribbling on it and
not really doing much. But now that we, I'm older, I
made, I made a really, really nice one last year.

(17:10):
I'm pretty proud of it. And it was very detailed and it
was the second one I ever made except for when I was younger.
And it's lots of fun to like it in a way it can kind of be like
dance to just follow the patterns and like every, every
pattern and embroidery and like simple that are called ornament

(17:33):
means something. And you can arrange them into
words, kind of like letters. They there's different letters
that translate into different ornament shapes.
And then you can kind of put them together and make a word,
which some people do for embroidery, some people do for
Anipasenka. And yeah, so I make pasenkas at

(17:58):
Easter time, Easter time. I also make bread.
So it's called pastka and it is braided bread, which you
probably seen. We got Easter and it's it's
yummy, but it's lots of fun to make as well.
And then for Christmas, I made my mom these ornaments.
So it had our names like of my family.

(18:20):
So me, my mom, my dad and my sister, each one had a little
ornament out of the embroidery symbols.
I was talking about the letters which can translate to the
symbols. And so I made our names out of
that and from stepping away fromdance.
That's kind of what I've been doing to keep my culture like in

(18:42):
how do I say this like to. A life.
Yeah, exactly. Yeah, to keep practicing it and
isn't it won't ever live up to dance, but it's what I can do
right now, yeah. It's, you know, the you have to
find some sort of creative outlet, right?

(19:04):
And there's always something right?
Drawing eggs and just art. Yeah, it's you adore gets
closed, right. But like, there's so many other
ones that could be open, right. And, you know, through your
medical journey, all right, it'sbeen, you know, make sure you

(19:25):
can't dance now. But still, there's still a lot
of opportunity. Yeah.
There's still, like things that you can do, like, like this.
And hey, maybe you become a pro at this, you know, who knows?
Maybe this was the is for a reason, right?
Maybe you become, you know, teaching kids this and all that.
Yeah. Yeah, so after having to step

(19:46):
away from dance like due to illness, how did that affect
your relationship with your culture and creativity?
It was really hard. Like I said, I've been dancing
since I was 4, so it's been likethe kind of art that I've been
doing forever. And like I said, it brings me
lots of passion and joy and to make this decision.

(20:11):
To like take a break because at first I just took a break was
like the hardest one of the harddecisions I've had to make and I
had just just joined like a perfect semi professional
ensemble in Edmonton. I danced with Volley A Ukrainian
dancers. Oh, that's awesome.
Yeah, it was fantastic. And, and I just performed my

(20:33):
first two dances with them in Vegerville.
And then like two months later Iwas like, I can't do this
anymore. And I had to kind of tell them I
need to take a break. And then the break became a
year. And then it was like, well, I
don't know if I'm going back, soI'll probably just tell them I'm
not. And then if I do get to go back,

(20:54):
I do. But yeah, the initial decision
was so hard. And I like thought about it for
weeks and was to tell them I wasso upset.
I was like, I have to take a break.
And they they absolutely understood, you know, they can't
force me to dance. Yeah, it was really hard.
And I was I didn't have any kindof creative outlet for a while.

(21:19):
I could lost what I do, you know, I dance and I lost that
and it it was very hard and dealing with health and like
just getting up for a day and trying to find something to put
my creative art, something, anything into is like it was

(21:41):
hard. And actually I learned how to
crochet instead of dancing. So that's kind of what I
channeled it into, I guess because it's, you know, I don't
have to run around. I just sit there and crochet and
it's fun again. Nothing will really.

(22:01):
I can't even say that nothing sofar has lived up to dance.
I'm sure one day you'll find thesubstitution or if, you know,
I'm very hopeful. And I think there's going to be
a cure for everything, you know?So I think, like, you'll either
go back to normal or find a substitution.

(22:22):
And you look back and go, wow. Like, I'm thankful for all the
things that have happened, you know, good and bad.
Yeah, that's just me. But were you in denial at first?
Absolutely no. This cannot be it.
Like I need, I need to dance like I need have this in my
life. I thought it was going to be
with me forever. Like how would that go?

(22:44):
I first, because first it was mystomach.
The first thing that kind of made me unwell was my stomach.
Everything I ate was making my stomach upset and I was like
vomiting all the time and totally had no energy because I
couldn't really eat anything. And I was like, no, I just need
to eat after dance or eat beforedance or just tough it out.

(23:06):
And that was me for weeks and weeks.
And my mom was like, maybe it's time to take a break.
I'm like, absolutely not. I cannot take a break because,
you know, I just kind of accomplish my dream, you know,
and I'm, I was just at the very start of my dancing career
because just before my first twodances and then after that, it
only gets better. You only performing more dances
and learn more things. So to like, quit at the very

(23:32):
start is not what most people doand is not, not absolutely not
what I wanted to do. And I, yeah, I was very much, I
can just tough it out and keep going, but in order to have any
good quality of life, I cannot do that.
Yeah. What was what was it were you

(23:54):
feeling with with dance, it was kind of the biggest factor that
made you go, oh, wow. Like I cannot keep doing this
because you could tough it out, right?
But eventually, you know, the straw that breaks the camel's
back comes and you're just like,yeah, I can't do this anymore.
I went to the washroom during middle of class to throw up and

(24:18):
I was like, I I can't come here and then throw up and then go
back to dance. Like I was laying on the it's
gross laying on the bathroom floor in the dance studio crying
because I'm like, I need to go back but but I can't.
And then someone came to check on me and she's like, you need
to go home. And I'm like, no, I can't.
I can't miss the rest of rehearsal.

(24:39):
She's like, no, it's time to go home.
And that was kind of, I was like, maybe I shouldn't.
Yeah. Be here and doing this, you
know. I'm sorry to hear you've gone
through that, but it's great that, you know, you, you're
still hopeful and you're still finding ways to be able to, you
know, get that creative outlet. You know, it's, it's, it's not

(25:02):
easy, right? But yeah, you've, you've gone
through like a, a road, a, a long road of misdiagnosis as
well, right? And waiting.
And what helped you stay grounded through that
uncertainty? My parents were like my biggest
support I was and seeing so manydoctors and going to so many

(25:26):
appointments and trying so many medications, doing so many blood
tests and other tests and there's nothing and nothing was
abnormal. And they're like, I don't know
what's wrong. OK, So I was kind of just in my
head being like, what if I'm faking all this and like not
knowing it and just making it all up.

(25:47):
It's like subconsciously and I said this to my mom one day and
she's like, have you not seen what's happening?
Like you are not making this up.She saw it every single day that
I was exhausted and in pain and,and I just, I still kept going
and she saw it every single day.So for me to like question if,

(26:09):
if it was real or not was like abig for her.
Like, why would you think of that?
And yeah, it was. There's so much that was normal
or like negative tests and so, so much.
That was all. There's nothing wrong.
We can't find anything wrong. And it was very like, it's hard

(26:35):
to just be sick and not have a diagnosis.
Like you can have all these symptoms and just have all the
symptoms, but not confidently beable to say there's anything
wrong with you. And that was kind of hard that
there to know at that point thatthere was nothing wrong with me.
I would just wasn't feeling wellevery day and any time I had to

(27:00):
go to a new Doctor or to any doctor, they're like, well,
what's wrong? I'm like, I have no idea.
Nothing. They're like, OK, well, they
haven't found anything, so sorry.
Do something else. Yeah, yeah.
It's like you go from one doctorto the next and then they're
like, oh, you're, you're fine. But I, I don't feel fine.

(27:21):
Like there's, you're like the 10th doctor I've seen right now
who, who said the same thing. And so I don't blame you for,
you know, second guessing yourself and going, yeah, maybe
this is all in my head. Maybe this is a delusion.
Maybe I'm in a simulation, you know, Matrix.
But yeah, it's just it's tough 'cause there's I've been in a

(27:45):
similar circumstance where I hadthis chronic pain in my ear.
It's called hyperacusis. And I felt like it's like being
stabbed in the ear Anytime you hear noise that's like exceeds
like 85 decibels. And for some people it gets so
bad that it's like 60 decibels, which is talking voice.

(28:08):
So everything hurts. Yeah, I was the same way where I
saw my general doctor, the MD clinic and yeah, nothing,
nothing was found. And yeah, recommended to go do
an audiology audiologist to do atest.
And yeah, the tests came back and my hearing is fine.

(28:31):
Check the structure is fine. Went to go get a second opinion.
Third opinion, same thing. Tests were fine.
Went to go see an ENT, which is ear, nose and throat specialist
fine. So everything was fine.
Went to go see A to get an MRI. It was fine.

(28:52):
Everything was fine. And so, and then here I was
driving all around and I'd shut the car door and it would, I
would be catapulted into excruciating pain by just just
the, the noise. And I was just like, am I going
crazy? And eventually the left pain
sensitivity flooded to my right.And then I just, it was like I

(29:14):
was going crazy. And I felt like, I think maybe,
you know, my like, living ain't so, you know, maybe death would
be a better alternative than this.
And it's just like I'd suffered with this for 2-3 years.
You know, I'd still go to the gym, I'd tough it out.
But there's just some days whereI just wake up with dread and
it's like, oh, here we go again.And then like seeing all these

(29:38):
doctors and it's just, am I crazy?
You know what I mean? Is it, is it me?
And then finally getting an answer and what's it called?
Is it was liberating because I, I searched it up on Google,
right? And I knew I, I hadn't ever
actually got a like a formal diagnosis.
But I, it's just, it's tough notknowing.

(30:01):
It's tough really just going about like the world to like
life and not having any answers and because you can't work
towards fixing the root problem.All right.
And eventually I'm thank God I, I healed.
I went through a lot of meditation, a lot of prayer, a
lot of I still don't know what cured me, but a lot of people

(30:23):
don't get out of it. You know, a lot of people end up
taking their own lives because it gets so bad.
But that's just, that's why I'm such a big advocate for just
health and just chronic pain because I know it's like so
debilitating, right? Chronic illness.
And I'd be up late at night, like scrolling through chronic

(30:45):
illness like subreddits and likeseeing the stories.
I'm sure you've seen this. Wow, my story's not that bad
compared to this person. You know, you ever see read
those stories and it's like theydon't have family.
They, they, they're suffering through the same things you're
going through. No job.
No, no, anything doesn't drive like, wow.

(31:07):
And like, I'm. I'm thankful that I'm in this
position. And I'm also kind of really
guilty that I'm in this positionand I feel bad for the other
person. Yeah, you know, Yeah.
It's sorry, do you still have the ear pain now?
Here and there it comes, it dissipates.
It's like, I'd say it's 90% recovered, which is, I'd say

(31:28):
it's pretty much gone. But it, when I do, when I'm
highly stressed, when I, you know, when I don't get enough
sleep, it comes and it's just like, it's scary.
It's so because I've never been in that much pain in my life.
And it's like before this, before the pain, I there's this

(31:49):
quote of like, if you think that's the worst thing that
could happen to you, then that'sa flaw of your imagination by
Sam Harris. So like before this, I thought
like my life was just, I need tobe better and all this.
And then it ache. Everything was just taken away
from me. You know what I mean?
Yeah, like, it's like the peace was taken away.
And I'm like, wait, I was actually living in a utopia

(32:11):
before, you know, and I took it all for granted.
And I should have been more in the moment.
I should have been this. And you like, I see so many
people on TikTok that have the same like that say the same
thing. And I'm like, it's not until you
actually like have like a drastic change in your life
where you're like, you realize that, oh, like I had it good,
you know, and now I'm, I'm just trying to project in the future

(32:34):
and I go, OK, it can get worse. So I'm going to, I'm going to
try to just live in the moment, you know, and try to love my
family and try to love myself and the people around me because
things can change with the in a dime.
Yeah, well, I'm glad it's better.
That sounds awful. And going back to what you said
at the start is that like no doctor could.

(32:57):
They'll just say you were normalhearing like a medical
professional and someone who knows more than you, like they
went to school to be a doctor saying that you're wrong
basically that there's somethingwrong with you.
They think you're wrong is like,oh, well, I should probably
believe them because they know more than me.

(33:18):
And that's like something even now that happens with so many
people's chronic illnesses, Theygo to a doctor and they've done
their research. They know their body well,
They've lived with this illness for a long time.
And they bring something up to the doctor and they say, no,
you're wrong. Like that's not so what's going
on? Or there's nothing wrong.

(33:38):
It's like, how do you speak up to that?
You know, and be like, well, canyou think about this again?
Or I think I'm right, you know, and to get a second and multiple
opinions for you, that's like that takes determination too.
Definitely. Because for like, like a medical

(33:59):
professional to say you're wrongand they're right is so like,
Oh, well, probably so free to goto find other doctors to see
what is wrong is very, yeah, takes a lot of determination.
Yeah, it's just, I was just in so much pain, right?
And I thought like, like I was also grieving the fact that, Oh,
I can't go to the bar anymore. I can't attend concerts, I can't

(34:20):
live a normal life anymore. And then like you really have to
stand up for yourself. And I actually, I, I agree,
where like a doctor may know more than you because they
literally have a PhD. They went to Med school, right?
And then maybe the been practicing for longer than we've
been alive. But I think for like a certain,

(34:41):
to a certain degree think you may know more about like if you
have diabetes, right, you're probably going to know more
about diabetes because you're onthe subreddits, you've read
every single website, you've gone through all the, the
communication with it. You know what, how it feels,
right? And when it, when it for your
like chronic illnesses, right? You, you probably know more.

(35:04):
So I think it's just to stand upfor yourself because I think
you, you could have a PhD withinthat disease, you know, like
I'm, I, I know so much more about hyperacusis and tinnitus
than like I say, 99% of the doctors 'cause they just never,
they're not living it. Like reading it from a, from a
textbook then like living it. No, I can give you like an

(35:27):
entire essay on how I feel and what to do, what not to do,
right. What it's like with the mindset
shifts, how other people are feeling.
It's like, I don't know. Would you say the same?
Oh. Absolutely.
Like this one time I let's go tothe emergency room because of
chest pain and I was kind of instructed by like my doctor to

(35:48):
go because of chest pain just incase.
And I'm like, OK, so I went because my chest was hurting and
I was explaining my mast cell disease to the doctor and he's
like, Are you sure you have that?
And I'm like, yes, I'm sure, thank you for asking.
And he's like you like search itup.
And he's like, I don't think so.And I'm like, sorry, but you are

(36:13):
like you're specializing in emergencies.
So like, I don't expect every doctor to know everything.
Absolutely not. They work hard, but they can't
know about every single disease.But to to tell someone who has
that disease that they're wrong is like, what are you even
doing? Like, did you, did you do

(36:33):
anything in patient care? Was she, were they compassionate
about it though? Or were they just like, like
straight up just like, hey, you think you're wrong?
Yeah. And I'm like, well, I didn't
diagnose myself, that's another thing.
So the specialist diagnosed me, right?
The immunologist or allergist diagnosed me and I've lived it.
So if if this is happening, if I'm having testing because of

(36:57):
this certain thing is probably true.
This is something I experienced over and over and over again.
It's not I'm coming here for youto diagnose me with it or to
undiagnose me with it. Yeah, it's like, at least, you
know, have a little bit of compassion, you know, for the
person that's literally in the ER.
Yeah. I mean, it's tough because they

(37:17):
see, I'm sure so many patients. I bet you a lot of patients fake
it too. You know, there's like you hear
about those people where like, but you have to I, I want to
assume like people or innocence until proven guilty, you know,
but like some people, they assume you're guilty until
proven innocent, which is like such a backwards, backwards

(37:38):
thinking. It's like, no, like you should
like approach people with the same kind of kindness and same
kind of open mindedness as, you know, just view them as a person
that needs help or that is good,you know, not because if you go
into the interaction and go, Oh yeah, they're they're totally

(37:59):
faking and they're guilty and they're this and you're just
going to have like a cynical mind and then you're not going
to, you know, do your best job. I think like for me, anytime
I've gone into an interaction with like preconceived thoughts,
I've always just, you know, comeout of it and with like, you
know, it's a negative vibe and Idon't, I don't like it, you

(38:19):
know? Yeah, definitely.
What's 1 misconception about chronic illness or invisible
conditions that you wish more people understood?
I think a misconception maybe isthat that on a good day that
they are cured. If you're showing, if you're

(38:42):
having a good day and you're outand doing things that you maybe
haven't done in like 3 weeks, that doesn't mean you're better.
You're just on a up and then it'll go down and up.
It's a roller coaster. It's not going to end.
And it's not linear at all. And I think that some people can
see or see that someone's doing better and they're like, oh,

(39:03):
you're better. But then the next day they're
not. And they're like, well, what
happened? Why you were better yesterday,
but why aren't you OK today? And that's because it's it's
chronic, like it's a long term illness and it isn't, it doesn't
get better. Like it you can have good days
and bad days, but it's not really going away usually.

(39:25):
And yeah, I think some people just kind of are like, why?
Why aren't you better? But I.
Don't know. Yeah.
They don't understand kind of the ebbs and flows like this is
something that I'm probably going to live with for the rest
of my life. Yeah.
And because the sickness, right,like a cold, they just view that
as like, oh, something where, you know, maybe do you have a,

(39:48):
do you need surgery for it? And then eventually you get
better and you're back to normal.
Or for people with chronic illness, chronic pain, like it's
you're reminded of it every single day.
And then one day you could just be at a 10 and one day could be
at a 2 and it's still there. It's still lingering.
Right. Yeah, definitely.
Yeah, have you, are you on like a support group at all?

(40:09):
Yeah, yeah, I'm on a few for different things on Facebook,
but it's booking it crazy. Yeah, no, I I don't know what it
is, but like, it can get really negative.
You know, I like to, I like seeing like the random +1 that
goes, yeah, I love my life even despite all the shit that I

(40:29):
can't do. Yeah, that I love that stuff.
But yeah, getting. It's like an echo Chamber of
negativity and you're swimming in the negativity of soup.
Yeah. And it's not good to go on there
all the time. Like, it's good to go on there
to like to know you're not alone, right.
But it's bad if that's all you do, because you're like, yeah,
is life really this terrible? Yeah, definitely.

(40:52):
There's this one that I was on for endometriosis and people
were like, so there's there's nocure for endometriosis, right.
And people were selling, trying to sell things that were like
this will cure your endometriosis.
And it was like some vitamin. And I'm like, I don't know if
you've done any research before you tried selling this, but

(41:14):
like, what are you thinking? But there's people.
That believe it though, like they're willing to like try
anything now because they're so desperate.
Yeah, like you become delusional.
Yeah, right. Like, yeah, like cold showers.
You're going to fix your your condition right away.
It's like no, no, no, like I'm not I'm not buying your course.
OK, like I'm not saying like they like there's some people

(41:35):
that prey on them and like theirfellow chronic pain community.
Yeah, it's terrible. Yeah, there's lots of people
selling like their courses and I'm like, yeah, I don't know
about that. I don't know how much I trust
it. Like I know I don't know, if I
had an experience that truly made me better and changed my
life, I think I would want everyone who has experienced the

(41:58):
same thing as me to get better. As well, but like the profit
though, like if it's like 50 bucks, you know for a course and
they're like you can just tell the vibe.
I don't know what it. Is.
Like I, I was listening to this podcast about hyper about
hyperacusis and this guy was just, he was so convicted about
the to the cause and he like just, it was basic stuff like

(42:23):
sunlight and like peace and likethis is like, yes, I'm it's
probably going to reduce your stress, but this is not a cure.
That's why I'm always like whenever I talk about kind of my
success story is like, yes, I'm like cured, but I don't know
what did it. I can't say which one is
causation. So I can't share that hey, this

(42:45):
is going to make you better. I can just give you kind of some
hope and kind of tell you, hey, like chatted, do your hobbies,
try to make friends, you know, still find some other outlet.
Yeah, 'cause like, I don't know if you noticed this too, but
like, you can still live, you know, you can still like
crochet, you can still go to work.
And if you didn't do any of that, like you're going to

(43:08):
deteriorate so much faster, right?
It's good to like push yourself,but it's, it's also good to like
not push yourself and like, relax.
But you got to keep living. You got to keep like going
forward. Definitely like some, some
people just give up, even some people that without chronic
illness, you know what I mean? Yeah, Like, it just that's life.

(43:30):
Like, I don't like, I've kind oflike accepted fact that, hey,
like there's certain things thatI just can't control, right?
And I'm going to actively work towards changing it.
But there's just, that's just it.
No, no, I'm not, not Superman. Like, I'm not going to be able
to do everything right. Yeah, yeah.
On the tough days when symptoms take over, how do you show

(43:53):
yourself compassion or keep yourmindset steady?
Give myself like time and rest if I need it.
Because what literally what you just said is pushing yourself is
not going to do it. And maybe if maybe if when I was
healthy or no, I hadn't didn't have an illness, I would push

(44:15):
myself and keep going. But like, I know if I do that,
if I push myself now, then I'm going to be out for three days
and laying down and sleeping forthree days because because I
went too far. And that's kind of the balance
you have to have is like knowingwhen what your limit is.

(44:36):
And it's, it's hard to discover that because every day is
different and your limit could be something, oh, something
different every single day. But it's yeah, it's important to
give yourself compassion and like the time that you need to
recover and don't feel guilty. Also, if you can't do something

(44:59):
like a lot of times I say no to things and then I'm like, oh,
maybe I should just do it and goanyways.
And then I'll just deal with it after.
But but it it's not good for youto just keep doing things even
if you shouldn't or you you can't because you're sacrificing
your quality of life at that point.
Like you, the thing about anything, anything in life is

(45:23):
sacrifice. You know you for chronic illness
for me, right? I sacrificed losing dance to
have a better quality of life, to not be sick every sick to my
stomach every single day. I mean, that was hard, but in
the end it was worth it. And that's like kind of you need

(45:44):
to sacrifice getting up or goingto an event if you need to rest
and get better. There are no solutions, only
trade-offs, right? And when you go to an event,
like you're going to have to sacrifice maybe sleep to an
extent, cuz maybe you get home at 2:00 AM, if you eat crackers,

(46:07):
you won't be able to eat an apple, you know what I mean?
Cuz maybe you'll have less room.You can make both work, but
certainly, maybe you'll be too full, right?
Maybe you'll gain some weight because of it.
But there's like all these things and it's always a give
and take pros and cons, right? And you have to, like, do a lot
of reflection, right? Because if you just go based on
impulse, you go, oh, yeah, I feel like it, let's do it.

(46:31):
And then without any regard to, like, what you're going to feel
like 2 weeks later, you know, orlike a day later, probably be
more realistic, then, yeah, you're going to put your
circadian rhythm out of whack. You're just going to, you know,
get out of your comfort zone toomuch and you're going to wake up
feeling dizzy and not be able tolive at peace, you know?

(46:53):
And is that really worth it? Is that really how you want to
live your life? It depends, right?
Maybe you've got, maybe it's a friend that you haven't seen in
a couple years and you want to truly catch up.
And maybe, you know, you want todo some surfing.
And if it's too much, that's OK.You don't chastise yourself,
right? You don't go, oh, I'm stupid on

(47:13):
this. Like, no, you're just, you're
human. You're like everybody's going
through something, right? And the guy that's kind of
something that's liberated me where OK, I may not be the
smartest, best looking strongest, but you know what,
this is my life and I can just Ican do what's best for me and I
can I can be happy like that. The level of happiness that we

(47:36):
all experience the same, you know, like whether you got a,
you know, like a, a video on YouTube went viral because you
made it with hard work or that dance routine that you practiced
and you hit that one, you know, move that was so difficult.
Or you get a new, new Lego set. You know, those are all kind of

(47:56):
the same kind of feelings, right?
And it's just to remember that, yeah, there's there's new
chapters, there's different doorways, different paths that
you can just live. Yeah, definitely.
Yeah, yeah. And yeah, if you I should have
gone through it at the start, but if you don't mind me asking,

(48:17):
like what are like the kind of the diagnosis diagnosis that you
have gotten? So I have the first one was a
mast cell disease and it's called hereditary alpha
tryptaseemia syndrome. Wow.
So I don't call it that because no one knows.

(48:38):
What I'm talking about? It's it's really not as crazy
and like bad as it sounds. So intellectual though.
Can you say that again? Hereditary alpha, chryptaseemia
syndrome, chryptaseemia syndrome.
The hereditary is the hereditaryalpha is the gene.
And then tryptaseemia. Tryptase is a chemical in your
body that has to do with with allergies, I guess, and

(49:03):
histamine and tryptaseemia is just the way it acts and then
syndrome is like a collection ofsymptoms.
Symptoms. Maybe you should specialize.
Lots of people have the genetic mutation, I guess because one of
my parents has it because it's hereditary.
I don't know which one because they don't display any symptoms,

(49:25):
but a third of the population who have it have severe
symptoms, which is why they thought about it and they tested
it for me. And the test isn't like no one
really gets tested for it. So they had to send it to Texas
my my blood sample to get testedfor the gene.
You've pretty much been to Texas.
Pretty much, yeah. So it's some doctors kind of

(49:53):
recognize it, some doctors don'tbecause it is.
I don't, I can't remember the percent.
I don't want to say it wrong. A small percentage of the
population has the mutated gene,but only a small percentage of
that percentage have severe symptoms.
OK. So like that, it's rare, but

(50:14):
it's very, very rare within the rare.
Yeah, yeah, exactly. So like you may have the the
mutation, but you you wouldn't know unless you had symptoms of
it. Yeah.
So like allergy symptoms, anaphylaxis and yeah, allergies

(50:34):
and anaphylaxis is kind of the main symptoms.
I think my my Prof was just on the pod last time a couple
podcasts ago which I have yet torelease.
And yeah, she, she called it theDiath, the thesis.
I don't want to butcher it, but essentially the genetic
components are all there and it just becomes immaterializes into

(50:57):
something real. If you're like stressed or if
you're exposed to certain, you know, certain external factors,
right? Like it's all there.
Like I'm sure we're all kind of schizo a little bit.
Like if you're if you're pushed to a certain degree, like we're
all just like something just snaps, you know?

(51:17):
But it's like for some people, maybe that takes like a broken
fingernail. For some people that may take
like their entire family and allgetting wiped out.
But but then yeah, it's just like I I wonder what activated
yours. Hey.
I wonder, I'm pretty sure it was.
I had COVID. I'm pretty sure, yeah.

(51:38):
COVID. Activated what happened And I'll
get in more into that too in a minute.
Yeah, I'm pretty sure COVID brought it out and gave me
starting to have symptoms. Wow.
And what does this do? What is this?
What symptoms does this? So this is what I'm pretty sure
is what caused all my stomach pain and like stomach issues

(52:01):
because basically what was happening is that everything I
would eat my body would have an allergic reaction to.
Not nothing like life threatening or anything but
making my stomach upset was everything I was eating and so
now I'm on antihistamines everyday and so I can tell what
actually makes my stomach upset.Like gluten and dairy and eggs,

(52:24):
random things like that. You're on Benadryl.
I'm on my Oh my goodness, reactin.
Reactin yeah, I was on Benadryl for or I guess I went through
all the I had like chronic hives.
Oh, OK. Yeah.
For months, I, I thought it would never go away.
I just kept getting hives everywhere.

(52:44):
I'd be at school, I'd just be out of all my arms.
And then I went through all the different kind of
antihistamines. And then the strongest 1 was
Benadryl. But it made you so drowsy.
Yeah, definitely. Yeah.
So drowsy. And I'm like, it was the
strongest one. I never got hives.
But that's good. Yeah, yeah, I think I'd have

(53:05):
went away, but yeah, it's so stomach pains.
Like was it like just, you know,was it just like pinching?
Was it like stinging pain? What kind of?
So it was like, I even, I get itnow when I eat gluten and dairy,
like your whole abdomen is kind of cramping, but kind of like

(53:28):
dull pain. And then what I've noticed is
like, I can kind of feel as the food is moving through my
intestines because it hurts in certain spots.
I can't actually feel the food moving, but I kind of tell
because like it hurts in certainspots.
Maybe I should have phrased thatdifferently.
You just feel, Oh yeah, that's yeah, that's the third bite.
From the Taco like it hurts in different spots as like

(53:52):
digestion is going on. You sure it's not a superpower?
Could you imagine? That would be crazy, but yeah.
And then that was kind of what started everything is my
stomach. And then I wasn't eating because
I was throwing up or my stomach was really, really hurting.
But then I was exhausted from not eating.

(54:14):
And then I also from that sometimes have anaphylaxis.
So that's like when your throat swells up after you eat
something. Surgic reaction which is so far
brought on by different random times, random foods I've eaten
that I've eaten before, which ithasn't happened in a while.

(54:35):
But with a mast cell disease this can happen for many people
is I can't remember the name of it.
And I again, I don't want to sayit wrong but it's like
anaphylaxis but with an unknown trigger.
So anything. You eat.
Could possibly give you anaphylaxis in some situations.

(54:57):
You have to have like an epinephrine with.
You all the time. Exactly, I have one in my bag
right now. Your like, throat shuts off,
right? And you can potentially, you
know, not be suffocate, oxygen suffocate, Yeah.
Yeah. So that's a symptom that comes
or I guess the thing that comes with that.
Yeah. So this is like a, there's many
mast cell diseases, but this is like the one that I have and

(55:19):
it's kind of different from the other ones.
And then after that I got diagnosed with endometriosis.
So that is when tissue that's kind of like the tissue lining
your uterus grows outside of your uterus and causes lots of

(55:40):
pain and, and heavy, heavy periods, heavy bleeding and
infertility for some woman. So that is like, it's estimated
that one in 10 women have this, but it's lots of doctors don't
listen to women, especially around their periods, because

(56:04):
the the the normal for the norm for periods is like different
for every woman, right? So what's normal for you?
Well, not for you, but for for anyone are.
You are. You assume it.
I don't know what. You like, it's not that bad.
But the normal for for one womanis different from another one,

(56:27):
right? So you might not know you're
having problems because it's been like that for your whole
life. But but for me, it's like in
like debilitating pain that leaves me laying in my bed with
a heating pad for hours and bleeding through like a pad
every two hours. Like the big Ultra maxi pads,

(56:49):
whatever they're called. Wow.
And so I got an IUD, which helped a lot actually, but then
then it moved and you can't. What's an IUD?
Oh, yeah, sorry. So it's a, it's like a
contraceptive birth control, butlots of women use it for like
heavy periods and pain and it's like a little T shaped device

(57:11):
and they insert it in your uterus and then it kind of
blocks. I also don't know the medical
term for this, but it like blocks anything going into your
ovaries. But it also doesn't depends on
the IUD, doesn't let you have a period, but it yeah, basically
it's birth. Control OK, but like a stronger

(57:32):
version. Depends it the nice thing about
it for what someone like about is you don't have to remember
take a pill every day. It's just always in there and
you get it removed or changed every five years depending on
the brand. I don't know if it's stronger,
but it's just a different type than like traditional pills.
Oh wow, it's a lot and all that's all three of the

(57:56):
diagnosis that. There's don't even work.
Collecting all of them. Exactly.
But yeah, so I got an IUD and then it got better and then the
IUD moved, like shifted. But take it out because you
can't keep it in when it's out of place 'cause it can like
perforate your uterus, which is like stab it and go through it.

(58:17):
I don't know. It didn't happen to me.
Thank God. Yeah, I know.
Right. So then I got a, a new one and
it didn't really work as well. So I, I went to the gynecologist
and I'm like, I had been asking her about endometriosis for at
least five years. And I'm like, this is five
years. Wow.
Yeah, that was, yeah, I've had painful periods since I started

(58:38):
getting my period, which was like preteen era ish.
Right. So yeah, a long time I've been
asking about this and been like,OK, I'm 18 now.
So can you like check or can you, can you help me please?
I'm at this point I'm begging her for help because this like
especially in the last summer was like seriously, seriously

(59:02):
affecting my life. Like I would get a pain in my or
pelvis and then it would shoot down my leg and then I would
have to sit down because I it hurts too much to walk because
of my period pain. Or like I would be crying in the
middle of public because it hurts so much.
And like I would change color because of the pain.
And yeah, so I'm like begging her for help at this point.

(59:24):
I'm like, please, please, you need to do something because I
can't live like this. She's like, OK, I will do an
explorative laparoscopy. So that means they have like a
camera and they haven't, I don'tknow, whatever else.
So I have two scars here and then one of my belly button
where they put a camera in and looked to surgery.

(59:47):
And so yeah, she's like, OK, I'll do it.
And I, yeah, I went to the mesocardia, whatever hospital
that is, and she had my surgery.But before she was like, if I
don't find anything, you can't be upset and.
I was like, OK, but that kind oflike made me think I'm like,

(01:00:09):
what if she doesn't find anything?
And like, what if it's just my life and there's nothing that
can do to change it? And then I was worried going
through my surgery, but it doesn't matter.
When I woke up, the first thing I asked the nurses only did they
find anything? And she said yes, They found
endometriosis on your uterus andligaments that hold up your

(01:00:29):
uterus. I don't know.
And they removed it. And yeah, in that moment, I
cried tears of relief because I was like, there is actually
something that is wrong. And it's not just, it's not just
my normal. Yeah, it's been like a massive
burden off your shoulder saying like, thank goodness it wasn't

(01:00:50):
just so psychosomatic. It wasn't just in my head that's
actually real. Yes, exactly.
And the doctor actually has tangible evidence.
Yeah, or it exactly. It's like you're laying there.
Must have been like. On anesthesia stuff, but happy,
yeah, yeah. And yeah.
So I have endometriosis, a mass cell disease, and then POTS,

(01:01:14):
which is postural orthostatic tachycardia syndrome.
And it's like a autonomic nervous system disorder.
So your autonomic nervous system, which is like all your
regular functions of your body. Like heart rate and a breathing.
Yeah, digestion, blood pressure,all that stuff doesn't work as

(01:01:35):
well. So I I get tachycardia, which is
hard beating very fast, dizzy, dehydrated, exhausted and lots
of other random things that comealong blood pooling my legs.
Yeah, I have. Yeah, I have POTS and then also

(01:01:58):
chronic fatigue syndrome, which is another kind of autonomic and
neurological disorder where yourwhere your body doesn't process
sleep properly. So you're not really, you never
really feel rested. Yeah.
You just feel exhausted all the time, right?
Yeah. You had like a sleep test.

(01:02:19):
I had a is it? Could be sleep apnea.
You know, a lot of people say that, oh, they they don't feel
rested no matter how many hours of sleep they get.
And lo and behold, it's just because they're not breathing
properly. Yeah.
I had a EE G wait, OK, I don't know if it's called that.
I had some type of test where I went to sleep there and it was

(01:02:45):
like a sleep to five test. So I had to stay up all night
and then go to the test and so Icould go to sleep and they
tested my brain waves or something.
I don't really know some electrical thing in my brain.
I don't know the scientific terms.
I can't say. But yeah, they tested my brain,
my breathing and something else during my sleep.
So I don't know if it's like a what other people have had, but

(01:03:07):
I have had one type of one, but I can't say I've had like all
the sleep studies done. So it's possible it could be
that. But right now the like consensus
is chronic chronic fatigue syndrome, which could still be
applicable even if I had an A sleep disorder because

(01:03:28):
regardless, you're still fatigued.
Yeah. And you know what?
Like, the way you explained all that was so, so coherent.
It's very, like, could tell you've really done your research
on to all this. Yeah.
Like you're very educated into your, you know, your own body,
your own mind, which actually takes a lot of work.

(01:03:51):
Good for you. That's awesome.
Like there's other people out there that don't know anything.
Yeah, You know what I mean? Like, I'm the same way.
Or if there's like something, some symptom that I'm feeling,
you best know I'm on MD Center. I'm on Reddit.
Like, I'm, you know, I'm, I'm mydoctor with the blood tests.
And I think this what's a great personality trait?

(01:04:12):
I think, you know, like, yes, it's I'm sorry you've had to go
through all that and all the pain and suffering and and
having to give up dance. I'm sorry.
But hey, in the bright side, youfound the answers.
You're working towards getting cured.
You're hopeful and you're realistic with yourself and

(01:04:33):
you're still going and I'm very proud of you.
Thank you. Oh, really?
That's that's awesome. And I think, you know, you, you
should give yourself credit right where it's due, right?
Do you do you struggle with thatat all though?
Yeah, yeah, definitely. Because like I could before I
had all these illnesses, I coulddo so much.
And now it's like looking back and comparing it to now is like,

(01:04:56):
Oh well, I don't do that anymore.
But then I look to like right now and when I first got sick
and I, I am a bit better. Like things have changed and
I've learned to manage these things better.
And so I am better from when I started and there is no, there
isn't really still a lot of medical interventions that that

(01:05:19):
they can do for these kinds of things.
So a lot of it is like learning how to eat properly and like
fuel my body with good things and learning sleep habits and
different kinds of movement thatisn't necessarily dance but can
still benefit me without making me exhausted.

(01:05:41):
Yeah, Do you, how do you deal with uncertainty?
Like do you worry a lot? Like do you go, oh, like 10
years later, 20 years later? Like, what's this going to do?
Like cancer? Could this be, you know, like a
pre, you know, a sign that things are just about to go to
hell? I already feel like I'm in hell.

(01:06:01):
You know what I mean? Like, do you, do you ever
struggle with that? Because I know for me, I
experienced 1 affliction. I'm like, oh, this is it.
You know, this is the start of something truly despicable,
truly horrible. You know, the atrocities are
coming and I'm just there in thecorner waiting for it all to
happen. Yeah.
Yeah, like with with endometriosis and I mean, I'm 18

(01:06:25):
so I, I can't say if I'm planning to get pregnant in the
whenever or not, but like even with that, lots of women aren't
able to get pregnant and. Well, you said one in 10 though.
One in 10 women have endometriosis, yeah, which is a
lot. Yeah.
Yeah. So some of them struggle with
infertility. So like in that kind of sense, I

(01:06:47):
worry about that, even if, even though I don't know if that's
what I plan to do or not. But I mean, the other things I,
I've kind of, I kind of have an idea of how I can keep them
under control with, with things that I can do by myself, right?

(01:07:09):
Like meditation, Like we just, you just said meditation.
Yeah. I'm going to send you that link
of the Andrew Heberman one. Perfect.
I meditated for an hour last night.
It was really that's. Impressive because it is hard.
It's. Tough.
It's tough, but yeah, sorry I cut you off.
Yeah, yeah. Yeah, things like that, like
journaling, lots of things to keep your yourself regulated

(01:07:32):
like mentally can help you physically with these kind of
things and like give you a good baseline so that you're you're
not all over the place when you're trying to get better and.
Don't forget that sunlight and that sunlight important water
that water have. You tried drinking?
Water. Yeah.
No, water's great. Yeah.
No, I haven't drank any. You reminded me Yeah.

(01:07:55):
What else is nature? Nature is a good one.
Yeah. Yeah.
It's like the little things, right?
They feel such AI know when off camera.
We were talking about how stressis like a massive factor on to
like if your symptoms are going to be intensified even just like
the quality of your happiness. Yeah.
Absolutely. Like stress reduction, like
working towards just like getting rid of or maybe not

(01:08:16):
getting rid of stress because then the stress is stress is
kind of needed for you to take action, but it's like unleash
unloading a lot of it. Yeah, it's, it changes
everything. Stress is like tied to
everything in your life, even the things that you're not
stressed about, You know, like if you're, if you're system is

(01:08:37):
deregulated, then everything is deregulated in your life.
You you need to find like a goodbaseline.
And that's like kind of what I've, I mean, I go to therapy
and so credit to my therapist for telling me this and teaching
me this, right? But need to have a baseline.
So then you know where your normal is AT and you can gauge

(01:08:59):
if you're good or bad based on your normal.
When I, when I have lots of stress or I used to, I was never
formally diagnosed, but I had like an eating disorder.
I would eat 3000 calories in like an hour.
Like it was, it was kind of cool, you know, but it was like,
but it was, I would run it all off.
Like I'd run. It was very unhealthy.

(01:09:19):
Yeah. But yeah, I noticed just like
things that I didn't want to do in high stress situations were
like ultimately things that I'd look back and gone.
Wow. I was just like very stressed
out, like I was taking on too much and I didn't really give
myself grace. And I, I've been wanting to get
into therapy and just like, I think, I think that this year is

(01:09:41):
probably going to be the year I start.
It's I heard it's just like opens up doors, you know?
It does. It's fantastic.
And like so many things that youthat you wouldn't think are not
necessarily a problem, but are like important things on your
mind. They all like kind of come out
in therapy and then can process it.
And yeah, I, I recommend therapyto absolutely everyone, even if

(01:10:04):
you're even if you think you're like good and OK.
You're not good. Literally no.
But there's there's always something you can work on and
always something you can. Everyone can benefit from
therapy. And you, what if you got a
friend like Kaylee? I just, you know, everything's
fine in my life. Like, I don't really need help.
Like, no, you have to get therapy there.

(01:10:24):
There are people to choose. I just literally don't have
time, you know? But yeah, I think everybody
could benefit from therapy, right, 'cause just like things
that you could learn more about yourself, right?
And you could gain access through it for like a person
that's studied that. Yeah.
Pick out your brain. Yeah.
I was. So you mentioned having an

(01:10:49):
amazing support system. Like what does real support look
like for someone living with chronic illness?
My support system is kind of consists of my family, my
friends and my boyfriend. Renton.
Yeah. Renton.
He was on the pod, Yeah, last year.

(01:11:09):
Check that episode out. Yeah.
And then I've found lots of doctors who are my doctors now
and are very knowledgeable and can learn from other people, you
know, and they do learn from their patients.
So thankful for them. But yeah, it's, it's important

(01:11:32):
for someone with chronic illnessbecause your life can be so
unpredictable and like your dayscan be very unpredictable to
have those people that you can, I guess, predict they will
always be there. And even if you can't do
something, they'll try to reschedule or they'll just say

(01:11:55):
it's OK, we can, we can call or like do something else or just
have a good sleep. You know, like sometimes you
make a plan and then it it gets derailed because you're not
feeling well enough to go. And it's important to have
people who understand that that's just what happens in your
life. Yeah.

(01:12:17):
And so like my parents, I mean, they live with me.
So they know exactly what's going on and how I'm feeling and
they see it first hand. But like my friends, if I'm if I
can't go somewhere, they they understand and they're not like
questioning me or or. Not making you feel bad.
Yeah, exactly. Like, come on, don't be a
bummer, Kaylee. You know, it's just just one

(01:12:40):
night, you know, just I know you're probably going to feel so
disheveled the next day and discombobulated, but, you know,
at least we're all going to havefun.
It's like, yeah, it's good to have that support system where
they know you for who you are, right.
Especially with your living withchronic illness and you want to
be able to prioritize your health Exactly.
And what you're like, if they truly know who you are, you know

(01:13:03):
how you operate and you know youcan't.
None of those late nights, you know, actually I don't or I
guess chronic pain or hyperacusis, but I just, I just
don't like how my body feels if I stay out too long, like after
anything after 10910, don't get me in there, you know, I'm out.
I got my bedtimes at age. Absolutely.

(01:13:24):
It throws everything off like anything that's not regular for
your for your system is changes everything for the next day.
No, I love waking out with an alarm clock without an alarm
clock. Yeah, that's my own alarm clock,
Yeah. Yeah, yeah.
Like, wake up naturally, you know, when I get out with my
green tea and the birds are chirping.
Yeah, none of that. Like, you know, like sleeping at

(01:13:46):
2:00 AM, waking up at, like, rushing to work.
It's like, I don't like that, you know?
I don't know. Yeah, I'm just like.
Old traditional, like that, but I don't know, I just see it.
Some of my friends, they just play video games until like 3:00
AM They seem fine. Like for me, if I did that, I
just feel like jumping off a Cliff.

(01:14:07):
I just don't, I don't know, likecertainly, yeah, it takes like
my, my family friends, they understand how you work, right.
Yeah, exactly. I'm not going to eat that
certain food. Like I'm just not going to eat
that. Yeah, that's just like, yes,
it's going to feel great for like the first two minutes, but
I'm like throwing up or I'm like.
Good luck in the back. Yeah, yeah, yeah, You're in the
washroom for like 10 minutes. Yeah, yeah, it's, but yeah, no,

(01:14:32):
Renton as well. You like that guy?
It's you're he's he's awesome. I every time I see him at the
gym and in person, he's always very encouraging.
He's always very compassionate, understanding.
Yeah. In fact, the North family, I
mean, it's time I see any of theNorth's.
It's always a good time. Yes, definitely.
Yeah, yeah, yeah. They're the best.

(01:14:52):
I couldn't, I couldn't get up every day without without
knowing that like Renton and my family and my friends would be
there. Yeah, that's awesome.
That's great. I mean, a shared joy is double
the joy. A shared sorrow is half a
sorrow. I've repeated that so many times

(01:15:13):
in the pod and it's just, I can't, it's so real, right?
You're just your joy becomes multiplies in abundance in the,
the, the sadness, it becomes half you just feel less lonely.
You know, you feel happier, joyful.
How do you maintain meaningful friendship relationships when
your energy or ability to be present is limited?

(01:15:36):
So having the support system that I just talked about is
important, like for people to understand what you're going
through and how you how you needto function is like so
important. But then also with that is like,
I have done it where I am too tired to maintain a

(01:16:00):
relationship, like mentally and physically and it kind of goes
away. And then I'm like, Oh, well, why
didn't that person reach out? But it's not just on them.
You know, you have to make an effort to the the best you can,
you have to do for a relationship to maintain it.
And yeah, you well, like it's important to give yourself like

(01:16:23):
compassion and grace and know when you need to blow down.
But if you want to continue having friendships and keep
people in your life, and you also need to make an effort, you
know, like just because I say this all the time is like
something like chronic illness, is it?

(01:16:44):
It can't be an excuse. It can be an explanation for
something that happens or like abehavior that you did, but it
cannot be an excuse. And I think that's that's for
anything like you, you can't excuse your bad behavior.
You can explain it to someone, but there's no like excuse for

(01:17:04):
for something I don't know. I don't know.
I say that all the. Time I that's, that's a great
point. A lot of people will use their
afflictions, something that's happened to them.
I'm like, yeah, I'm gonna treat this person badly because I was
wrong. I have this disease.
I was I dealt the wrong cards. That gives me an excuse, a

(01:17:27):
reason to be able to treat otherpeople badly, treat my friends
badly, put other people down. Now, if everybody thought that
way, we would be living in a dystopian kind of everything
would just be terrible. There'd be a lot of atrocities.
And like, what does that mean? That just means you put other

(01:17:50):
people down to boost yourself upand anything bad happens, you
don't build. You just keep destroying and
destroying and eventually you look around you and it's all
just ruins. And I've, I've talked to so many
people that tell me, oh, why don't you hang out with this
person anymore? And they tell me, oh, because
they just stop reaching out. And it's like, did you reach

(01:18:13):
out? You know what I mean?
And they're like, yeah, but I, Iwas always the one that reached
out. Why don't they?
Why do you change it then? You know, you were always the
one that reached out. So why did you switch?
Like it's because, oh, I just realized, like, no.
Did you voice it out to them? Like, yeah, yeah.
But it's like there's all these excuses, right?
And it takes 2. Exactly.

(01:18:33):
Relationship to deteriorate and like a lot of I've always been
the one to take initiative to golike, hey, let's hang out, let's
do this. And if I change that, I would
have a lot less friends because like the average person just, it
takes a lot of you know, it's you're vulnerable, reaching out,
right? Oh, what if they say no?
What if they do this like phone calls and it's like, but it's

(01:18:57):
all worth it because, you know, you strengthen the friendship
that you pick up, they text backand then if you're your, your
true self, you go walk in there and then you have a good time.
And it's just that's why we're here.
Yeah, exactly. You know, it just lightens the
burden. Yeah, convenience is like I
literally said it like an hour ago, but convenience is the

(01:19:18):
easiest way to have a friendship.
And so if if it's not if you're not seeing that person every
day, relationship will change. And because if you talk every
day and you don't see them anymore, then it, it will
change. And I think that's kind of what
happened for me with lots of people I dance with is that I
saw them three times every week.And so we were super duper

(01:19:39):
close. And then when I left, we had a,
a very different relationship because I wasn't in the
community anymore. I wasn't in the group and I
didn't see them all the time. So like to connect is, is a
different kind of way, you know,and you have to put lots more
effort into keeping a relationship that it's not
that's not convenient. Yeah, yeah.

(01:20:01):
And a lot of people will use that, like, to blame them, you
know, like, it's they're not making time for me.
And it's like, yeah. But like, they're, they have
their own lives, too. Exactly.
It's like you can't point fingers.
Like, you can. Yeah, you can feel sad about it,
but it's just not. You're not.
You can't force people to be friends with you or you can't
force people to do anything. Yeah.

(01:20:21):
Because, like, think about how hard it is to change yourself.
Why do you expect other people to change themselves to be
easier? Like, no, it's just, it's much
harder. Yeah.
But it's just, you know, it's you have the friends that you
do. So why don't focus on that, you
know, makes more friends and reach out more.
Exactly. Instead of complaining, just

(01:20:42):
try, try more. Yeah, Yeah, yeah.
What would you say is kind of the biggest factor to
maintaining a friendship? Would it be like texting,
reaching out, calling once a week, twice a month?
I don't know. I don't know about like this
that like once a week kind of thing, like it's, it would

(01:21:03):
benefit so many, so many relationships to be like, it's
for me absolutely to be like texting them all the not all the
time, but like on a kind of likea, you know, once a week basis
to check in. But I don't know.
I don't do that, which is I'm guilty of that, right.
Like I, I, there's always, I cando better to maintain a

(01:21:24):
relation, to do anything right, but like to maintain a
relationship. There's so many things I can do
better and possibly the other person can do better as well.
And I think to, when you're thinking of someone was is the
time to talk to them and say, oh, how are you doing?
You know, even if it's like every day and you're they pop
into your brain, text them or give them a call.

(01:21:46):
And if it's once a month or every few months and you're
like, Oh, I haven't talked to them in a while, You should
reach out to them. I I got to read you this this
newsletter which you'll love. Everything degrades over time if
it's not attended to. If you don't grow together, you

(01:22:07):
grow apart. Friendships, relationships with
their siblings and parents, and life partners, All of these
require nurturing on a consistent basis.
Otherwise, life pulls you apart,you change, they change.
Eventually you don't recognize each other.
This is an ugly truth. Disney's romanticism of
companionship is that once you've made a connection, it'll

(01:22:30):
be there forever. Everything degrades over time if
it's not attended to. The best friendships I've ever
had are with people who I'm sharing a struggle with or
helping grow. But at the very least,
relationships require attention and cultivation to keep alive.
Everyone is busy, and if you're not regularly involving yourself
with someone's life, the hole that you take up will be filled

(01:22:54):
by something or someone else. If you don't grow, you grow
apart is a great description because it's hard to reach
inertia with friendships. They tend to either be
strengthening or weakening. Rarely are they static.
One of the best solutions I found for this is to cultivate a
habit of texting people immediately whenever I'm
thinking about them. Friends, parents, podcast

(01:23:15):
guests, whoever. If a memory of us comes up, I'll
message and say I'm thinking about them.
It's a tiny effort to keep hold of a relationship that you
probably really care about aboutand will miss if it drops off.
Untended gardens wither and die.Try to keep watering yours.
By Chris Williamson. Yeah, yeah.

(01:23:37):
Just reminded me whenever he said the like texting people,
which I do all the time now, youknow, or yeah, it goes a long
way. I what I do is I go, hey, hey, I
I was just thinking about you. What's up?
Or like, hey, I'm I'm thinking about you.
Remember this time this like, Ohyeah, it goes a long way.
Absolutely. It happens everyday, which like

(01:24:01):
I think about my friends up, butnot that much, you know?
Yeah. What do you, what do you do?
What do you send as a text? Just mostly like, hey, how are
you doing? How's whatever going And I I
this is actually something that I've been trying to be more on
top of and like good about is actually texting people when I

(01:24:22):
think of them because it it is alot of work and it is hard to
have a friendship and maintain that and friends like they do
come and go. And I think a lot of that is
because because you didn't maintain or not you, but like
the the people in the relationship didn't maintain it.

(01:24:46):
Yeah, it's, yeah, it's, it's a lot of work.
You know, the more friends you have to, the quality goes down
because you just have less time to be able to divert the
attention to. So that's why, you know, choose
friends that are actually there for you of quality, because you
can choose the wrong ones. You can put so much effort into

(01:25:06):
that, but they don't make you feel you.
Yeah, exactly. You know.
Can you share a moment when someone in your life really
showed up for you in a way you didn't expect but needed most?
A couple things when I kind of talked about earlier is that
like not being able to go to things or like hang out with

(01:25:30):
people, But like when someone isinviting me to things or someone
invites me to something and I say no, and then they invite me
to something again, like a couple weeks later and I say no
again, I or not, and they keep inviting me to things.
Like I love that. I love.
It's nice to feel included and be included.
Even if you, even if it's not something that can happen for

(01:25:53):
you, Like it's, it's a, it's nota nice feeling when you're
sitting alone or doing nothing and then you're looking on
Instagram and you're your friends are like hanging out and
exactly. And, and they didn't invite you,
you know, and like, it hurts. It does.
Even if, even if you can't go toit, it hurts that you didn't get

(01:26:13):
invited. And so someone in my life is
continuously inviting me to things that I wasn't necessarily
invited to before because I I talked to them about this.
We actually had a conversation about missing out and not being
invited even if we can't go. Yeah.
And so now they're inviting me to things.
And that is like, I really, really appreciate it.

(01:26:36):
And I think other people with chronic illness miss out on a
lot of things because they can'tgo or they're not feeling well
enough to do something. And even if they can't, just to
be invited is is a nice feeling.And yeah, so I like when people
invite me to things. And a teacher of mine, my bio
teacher, misses Hardobe's if youknew her.

(01:26:58):
She was always very caring. Absolutely ever on Instagram,
really. Yeah.
Yeah. Yeah.
He was the best. Yeah.
She was very compassionate. Yeah.
And then I was, I was a rough kid.
I was going through a lot when in high school, and she always
checked up on me, like, very genuine.
Yeah, and she was always so, so caring and I actually invited
her in the pod, but she yeah, she rejected.

(01:27:20):
But next time though, maybe maybe next time she'll change
her mind. But yeah, shout out to this is
her to be. Absolutely.
Yeah, She's you're awesome. And yeah, I probably up there
for favorite teachers too. Definitely, yeah, When I was
missing a lot because I kind of this all kind of happened in
grade 12 when I got diagnosed with stuff and start getting

(01:27:41):
sick was October, November in grade 12.
And I miss so, so much school. And I don't know, like one
person of the one member of the staff was kind of being like,
oh, you need to keep coming to school because you might not

(01:28:03):
graduate. And I'm like, what am I supposed
to do if I can't get out of bed because my grades are going to
get worse if I come to school and do a test and I'm exhausted
or distracted by pain? And if I come to school everyday
exhausted, I like my grades are going to get worse and that's
not what I want. But you know, I want to keep
coming to school because it needto learn, you know, you need to

(01:28:23):
pass and do well. So it was like a hard kind of
internal like fight, you know, like I'm too tired to go to
school, but I need to go to school because I need to
graduate, right. And this members member of the
staff was not not very compassionate and kind about it.
They've heard all the excuses, right?

(01:28:44):
They've probably just jaded, yeah.
And that's fair, but. No, mine's real, OK.
I'm I'm different, yeah, but Missus Hardaby's was very
accommodating. Like if I missed 2 quizzes in a
row, she would find a time for me a different time for me to do

(01:29:06):
them and not say, oh, why did you miss that?
Or like being like, you miss it so you could study more
something else. You know, genuinely believe me
and and listen to why I'm not coming to school and find a
different solution for for something because because I, I
couldn't go to school. And I remember I told her I was

(01:29:31):
having a really hard day becauseI just learned something.
Or there was like a there's a possibility that I had a cancer
because of the these doctors. They were like, maybe you might
have cancer. And I'm like, well, what?
And then they didn't do anythingabout it.
Like they didn't kind of test anything.
And they just kind of left me with that.

(01:29:52):
And I'm like, why would you say that?
Yeah, don't get me started you. Might have cancer, OK.
Yeah, anyways, I did not clearly, but I told her and I'm
like, this is really like, I don't know what to do.
And so she like took because I have like that little science
prep room. So I sat back there with her for

(01:30:13):
like 10 minutes and cried and she just let me and listen to
me. And maybe I hadn't been
vulnerable with a teacher like that before, but also I didn't,
I haven't like felt comfortable to do that with a teacher.
And so her like, showing up and being so accommodating was

(01:30:33):
something that like I wasn't expecting any teacher to do, but
was really, really appreciated. Yeah, and she goes above and
beyond. Absolutely.
I remember when I had an incident at school where I
downed a bunch of Adderall and like, I just, you know, yeah.

(01:30:54):
I'm like, all teachers got notified.
I was sent to the hospital. And I was, like a bunch of dumb
stuff. Yeah.
And I remember she was like, shegenerally cared.
Like, ask everyone in the class,like, how's Advent doing, you
know, And I'd like, remember talking to her after.
She's like, hey, Advent, how areyou doing?
And I just, like, it felt like something in her voice just,
like, actually touched my spirit, you know, touched

(01:31:17):
something, made me feel like I was a person.
Right. And that's kudos to her and all
for making you feel, but oh, this is, we're connected.
You know, it's not just, you're not just here to learn, you're
actually here to be a role model.
And like, she's like the, if I ever become a teacher, she'd,
I'd want to model her ways of, you know, proven like you, every

(01:31:41):
single student as like her children, children essentially
pretty much 'cause the way, you know, she just let her students,
you know, take their own time and when they missed it.
And like a lot of students did, you know, study more mixed a
quiz because. And you know what, she, I'm sure
she knew that, but she still gave them that compassion that,

(01:32:03):
oh, maybe they, they, they may be struggling at home or maybe,
you know, they're up too late. Maybe they're the family home
situation is not that good. And she was always aware of
that. And she made us.
She had good teachings and she always had these stories.
I'm sure she told she told you about stories about like, not to
smoke and about her uncle. I always remember that.

(01:32:25):
And a lot of people, like when Italk to people, they're always
like, yeah, no, I remember that story.
She's repeated that many times. And I'll, you know, thanks to
her, I don't smoke. But yeah, no, you have been a
great inspiration. Like, even to me, when I read
your post, I'm like, I have to get Kaylee on the podcast.

(01:32:48):
Thank you. Yeah.
And you've been very brave. And throughout your journey,
it's it's great. I think you would make you are a
great leader. I think for people out there,
you know, going through all these myriad of chronic
illnesses and pains, you know, what would you say to them right
now? That it, it probably does get

(01:33:11):
better and once you, once you'reable to find something that
helps, don't like give up on it,even if it seems silly like like
journaling, you know, maybe it'sjust, it's not actually helping
with your physical symptoms, butit probably is helping for your

(01:33:33):
mental health. And things like that are still
important, even if they're not something that's medically doing
anything, but things to keep yourself grounded and, and
mentally well at this kind of time where it's hard to feel

(01:33:53):
happy when there's like so much,so much hard things you're going
through. Keep those things that make you
feel happy if you can and find something that makes you feel
happy. Make that a priority if you can.
Yeah, thank you so much for your, you know, for coming on
today. I, you know, I really appreciate

(01:34:16):
the openness and honesty and theyou still view life with a lens
of positivity and you don't let it break you.
And you, despite kind of the hardships that you've gone
through, 'cause I know a lot of people experience pain.
They go, oh, why me? But I don't sense any
victimization with you. Like, you seem to be very

(01:34:37):
hopeful and very, you know, verypositive.
Yeah. I think everything does happen
for a reason. Even if he can't see it now, it
it will show eventually why it happened and and good good
things eventually come out of everything, even if even if it
absolutely doesn't seem like it.True.

(01:34:59):
Yeah. Thank you again.
I appreciate you. Thank you for having me.
And as always, to everyone listening and watching, there is
a place for you in this chaotic world.
Never lose hope, strengthen yourfaith and keep it long term.
Kaylee stay everyone. Stay.
Kaylee stayed you every. Do people ever use that as a
pun? Absolutely.

(01:35:20):
He's You won't be staying now let's go.

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#140 - Kayleigh Staigh - Fighting for Answers When the World Doubts You

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.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}#140 - Kayleigh Staigh - Fighting for Answers When the World Doubts You