April 28, 2025 • 39 mins
How do you pursue your dreams when your body seems to have other plans? For slow travel nomad and empowerment coach Caitlin, the answer lies in adaptation rather than abandonment. With a background in environmental engineering and a life shaped by fibromyalgia and complex mental health challenges, she's crafted a unique approach to entrepreneurship that prioritizes well-being alongside achievement.
"I got very, very sick because I was trying to keep up with everybody else," Caitlin reflects, describing her experience in business accelerator programs. This pivotal moment taught her that entrepreneurship with chronic illness requires a different framework—one that might actually be healthier for everyone. "Having a chronic illness actually means that you are respecting your limits a little earlier than maybe somebody who's doing that for 20 years and getting really sick."
The conversation explores nervous system regulation as a powerful tool for managing chronic pain. Caitlin explains how understanding her body's signals transformed her relationship with pain: "When I was able to look at pain as my body saying slow down or I need something... that reframe honestly even reduced the time that my flares would last." This perspective shift—viewing symptoms as protective messages rather than evidence of a failing body—offers profound healing potential.
Perhaps most valuable is Caitlin's wisdom on boundary-setting. As a self-described sensitive introvert, she's learned to stop over-explaining her limitations. "A boundary is what you are going to do for yourself to keep yourself safe," she explains, "recognizing that energy is finite and if I'm setting a boundary, it's the best thing not just for me but for my work, for my relationships."
Whether you're managing a chronic condition, feeling burnout from hustle culture, or simply seeking more intentional ways of living, this conversation offers practical wisdom for honoring your body's needs while still pursuing a life of purpose and adventure. Listen and discover how limitations, when embraced with compassion, can become doorways to unexpected possibilities.
Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Welcome back to my Spoonie Sisters podcast.
Today we have a guest whoembodies resilience and
adaptability in the face ofchronic illness.
As a slow travel nomad andformer co-founder of a startup
in Colombia, she has navigatedthe complex intersection of
entrepreneurship, self-care andchronic illness management while
(00:20):
living life on the move.
She brings with her a wealth ofinsights on topics ranging from
energy management and gentlegoal setting to redefining
purpose and self-advocacy inhealthcare.
Welcome, caitlin.
Today we also have Anne B Byerswith us.
Hello, ladies.
Speaker 2 (00:38):
Hello, thanks for having me, hello.
Speaker 1 (00:39):
Caitlin, do you mind telling us about yourself?
Speaker 2 (00:43):
Sure, yes, I'm a slow travel nomad.
I kind of travel to differentplaces and stay for a little
while.
I'm a life and empowermentcoach.
I mostly work with folks wholive with chronic illness or
neurodiversity.
Previously, my background isactually in environmental
engineering.
I've worked mostly in wastemanagement and recycling, which
is a very trusted interceptionbetween like sustainability and
like environmental health, solike the health of the
(01:05):
environment.
Speaker 3 (01:05):
That's, I guess, me in a nutshell, the first time we
were scheduled to talk, I hadinternet problems and my
internet didn't want to internet.
Now I get to talk to you and soI'm excited.
So environmental engineering isthat what you said?
Yes, okay, can we talk a littlebit about that first?
What is that?
Even?
What is environmentalengineering for those people who
(01:27):
don't know?
Speaker 2 (01:28):
It's using engineering principles like
technical engineering, but forsolving environmental issues or
also to mitigate environmentalissues.
So environmental engineers canwork in a range of different
industries oil and gas andmining to help with companies to
reduce environmental problemsor anything that's environment
related.
It's using more technicalskills towards that.
I used it towards wastemanagement.
(01:49):
I'm really into waste diversion.
I started out in recycling andworking in like circular economy
, trying to reduce waste.
Have you?
Speaker 3 (01:56):
always been into saving the world waste reduction
at a time, or is that somethingthat you grew into and you're
like, hey, I think I want to dothis for a career.
Speaker 2 (02:04):
I just want to do work that's aligned with my
values.
I think that, particularlyliving with chronic illness and
as I got more illnesses I justgot more reinforced Anything I
do, I want it to feel reallygood.
I want to feel like I'mcontributing and I'm
collaborating with others andwe're working towards solutions
that make the world maybe even alittle bit better.
(02:25):
There's some big problems thatwe can't necessarily solve
overnight, but then we'reworking towards making some
changes.
Speaker 3 (02:31):
So you're a slow nomad.
What does that even mean?
So we know that you travel, andwhat is the nomad life?
Generically just the overview.
What does that mean?
What got you into it?
Speaker 2 (02:42):
I had immigrated to Colombia like what seven years
ago, and I was living there andhad my business.
I went back to Canada duringthe pandemic.
That's where I'm from.
I was quite sick for a whileand so I told myself, when I get
better, I really want to travel.
And you know, nothing'sguaranteed in life.
Some people wait till theyretire to travel, but that's not
guaranteed.
I really wanted to have anopportunity to travel a little
(03:03):
bit guaranteed.
I really wanted to have anopportunity to travel a little
bit.
I say slow because I stay inplaces for months at a time,
just because it is veryexhausting to travel in general.
It is exhausting to travel ifyou have an illness.
So, yeah, it's just in placesfor a few months at a time.
I also just try to do so in away that I'm connecting and
learning local culture, that I'mtrying to reduce my
environmental impact when Itravel.
So it's just traveling in a waythat feels a little more
(03:23):
aligned to my values.
So do you speak?
Speaker 3 (03:26):
fluently different languages.
Do you go knowing the languageor do you learn the language
while you're there?
Speaker 2 (03:33):
I mostly stay in Latin America because I love it
in Latin America and I speakabout intermediate Spanish, so
I'm not fluent yet.
Working on it, I just couldn'tgo to different countries and
language is not something I pickup easily.
I don't know, do you both speakother languages?
Very minimally.
Speaker 3 (03:48):
Not very fluently anymore.
Okay, what did you speak?
So I did speak relativelyfluent Spanish.
Speaker 1 (03:56):
Okay.
Speaker 3 (03:56):
And I could get my point across in German and I
speak a little bit of Korean andit's because I've been
stationed in those places.
But the Spanish is, you know,just family background.
But yeah, when you don't use itoften you really do lose it.
I can understand it, but it'sgetting my mind to convert it
now.
(04:16):
It's like what am I trying tosay?
And now I jumble multiplelanguages into one sentence
because I know a little bit of alot of languages.
So, yeah, this is such a coolconversation.
I'm so excited.
What are some unfilteredlessons you've learned about
resilience and self-advocacy assomeone with a chronic illness
(04:36):
in the entrepreneurial space asa slow nomad?
That was a lot of stuff.
I just asked.
Speaker 1 (04:42):
That was a lot of words.
Speaker 2 (04:45):
I had to.
I had a startup about six yearsago and I wasn't necessarily a
nomad then because that wouldhave been a lot.
But I will say thatentrepreneurship and chronic
illness is a lot of lessonsthere, as you both know.
Doing business and havingchronic illness, I think I just
realized I burnt myself outreally badly.
I got very, very sick because Iwas trying to keep up with
everybody else and being inaccelerator programs and seeing
(05:05):
other founders pollinators or dothings that I physically could
not do.
I got really down myself for awhile that I'm not showing up
the way that an entrepreneurshould show up.
It took me to get very unwellbefore I realized that
entrepreneurship is going tolook very different.
If you have chronic illness.
That's okay and actually theculture isn't sustainable for
anybody.
Having a chronic illnessactually means that you are
(05:25):
respecting your limits a littleearlier than maybe doing that
for 20 years and getting reallysick.
Speaker 3 (05:30):
So you, you said something that made my ear perk
up and it was about theaccelerator program.
So I struggled.
There too, I would be in theaccelerator programs, literally
trying to keep up with thepeople doing things, and my body
hated me.
It was just raging, my weightwas fluctuating, I couldn't
sleep, my appetite was trash andI really was spiraling because
(05:52):
I thought why can't I keep upLike?
This is my dream, this is whatI want to do, and what I
realized is I'm not supposed tobe able to keep up with them and
what they were doing wasn'tsustainable or healthy.
I tried it and tried it, and Iwas in that cycle for a really
long time and I was gettingsicker and sicker as long as I
stayed in the cycle.
It took a health scare for meto be like wait a minute, if I
(06:14):
just offload some of these or ifI just did this a different way
to conserve some spoons, maybeI wouldn't feel as bad.
And then I didn't.
I didn't feel as badly and I'mlike OK, it was the wrapping my
mind around.
This looks different because Iam different and I had to be OK
with it.
But my difference also supercool and what I realized is that
(06:35):
are different.
Other people try to emulatebecause they realize that the
hustle culture for real isn'tsustainable for anyone.
I didn't realize how manypeople look at the entrepreneurs
in the chronic illness spaceand go, wow, I wish I could do
it like that.
Speaker 2 (06:50):
Yeah, that seems nicer.
Oh, like you're trying to getbalanced, you're actually
prioritizing sleep.
That seems like that would feelbetter.
Speaker 3 (06:58):
Yeah.
Speaker 2 (07:01):
Stay up all night?
No for sure.
Yeah, I love that you were alsoan accelerator program, because
it does feel really lonely atthe time when you're like, oh,
like, trying to explain to otherpeople what it's like.
And it was.
Speaker 3 (07:11):
Yeah, I'm in one right now and I am the only one
that's sick.
I'm like, oh, I can't be inthere.
I had class and I had meetingsand I'm like something's got to
give.
And I guess today it's going tobe the accelerated program that
is further down on my list ofpriorities, but I'm in one now
and it's exhausting becausewe're doing these meetups and to
introduce yourself, and it'sthe constant.
(07:32):
Hey, I know that you want me tobe super active in this pod and
I may not be able to, andhere's why.
And then the fielding thequestions, but also hearing the
disappointment in the emailcommunications like, oh, you
missed another meeting or youleft out early and I'm like, but
you don't actually get why I'mso glad we're having this
conversation.
I'm just over here calling,Thank you.
Speaker 2 (07:53):
No, I love.
I get two points about why.
I think I learned one be alittle bit more vocal about what
you're experiencing.
I didn't tell anybody except mybusiness partner that I had
health issues, and so whenpeople would make comments, I've
really internalized it.
And the other thing I think isjust like not caring if other
people make comments or don'tunderstand what you're
experiencing.
I remember so many times sittingin meetings.
I remember one time inparticular I just had like a
(08:14):
massive flare.
I have fibromyalgia, so it wasjust like pain all over.
And I'm sitting in this meetingand someone looked at me and
said you have to try a littleharder with Spanish.
I literally was having a hardtime processing English at this
point.
I've done everything just toget myself out the door.
I was sitting there justwaiting to clean it through the
whole meeting and stuff, andafter I just that's not mine, I
don't need to, it doesn't matterwhat that person thinks, it
(08:35):
does not matter, but it is hard.
It is hard when you feel you'rebeing judged or someone thinks
you're living with chronicillness and you're showing up.
That is taking Herculeanstrengths.
That is like you know, that'slike tenacity to another level.
Speaker 1 (08:48):
I have a question for both of you, for the people
like me out there that have noidea what you're talking about.
What is an accelerator program?
Speaker 2 (08:58):
Oh, my gosh sorry.
No, it's okay.
Speaker 1 (08:59):
I'm just listening to both of you going.
I have no idea what you'retalking.
Speaker 3 (09:02):
So think of it as business mentorship.
On speed, they got X amount ofweeks to get you through a
program and a lot of the timesthey're grant programs, so at
the end you get some monies ofsome sort, but they want to make
sure it's value added.
They cram it at you in a smallamount of time and several of
those have decided I couldn't dothat anymore, I couldn't pitch
(09:25):
for competition.
It is a lot.
Speaker 2 (09:27):
It is supposed to accelerate your growth, so
supposed to help with, like,getting your meeting investors
and helping you to get, like,your pitch deck ready.
So that can be very helpful.
But yeah, it's very intense, so, on top of running your
business hard pass for me.
It'd be interesting there'saccelerators for chronic illness
, though I think it would beinteresting if they had more
accelerators that were gearedtowards entrepreneurs that had
(09:48):
like neurodiversity or whoneeded a different approach to
how they're doing their business, because how typical
accelerators are is very hustle.
Speaker 3 (09:56):
Yes, that might be on a to-do list.
Speaker 1 (09:59):
I feel like that would use every spoon I have and
you wouldn't see me for a monthbecause I'd be sleeping for a
month just to catch up.
It's a lot and it doesn't.
Speaker 2 (10:08):
Honestly, there are points too, when you almost
resent your business, eventhough you love what you're
doing so much.
I think it's like what am Idoing to myself?
I'd be like what am I like?
Am I crazy?
Speaker 3 (10:17):
Oh my gosh, I literally told Jen last month.
I was like I got this feelinglike I don't want to do this
anymore, and she was like, well,what do you mean?
And that is where the feelingwas coming from.
There was an insane amount ofpressure from this program, to
the point where is this even mypassion?
I didn't want to look at mystuff or do any marketing or
(10:37):
communicate or people.
I just need to get this done soI can be done with this program
.
And at that point I just needto be done with the program.
Maybe I'll feel a little bitbetter.
So I took that breather, Idisappeared off the social media
, I went on what I call a mentalvacation.
I am a mental nomad.
I disappear for an unknownamount of time and then I pop
(11:00):
back up just so that I couldfind the balance and disconnect
from what I knew was about tomake me sick, disconnect from
what I knew was about to make mesick.
I had gotten back in the rabbithole of hustle culture for the
sake of being able to do thisthing and to not look different
than this group, for the sake ofthem to shut up talking to me
or talking around me about menot being there, understanding
that my body needed differentthings, and to include my mind.
My mind needed me to care forit way more than I was while I
(11:24):
was trying to spiral in thishustle culture.
So, while you're out and about,what is your support network
like?
Because you travel a lot andyou've done some accelerators
and those are a lot and you havea chronic illness, how's?
Speaker 2 (11:36):
your support.
I value support a lot more thanI used to.
Because of hustle culture, it'seasy to internalize this
hyper-independence I need to doit all.
Asking for help is no, I needto figure this out on my own.
I mean, none of us are meant todo this alone, and that is also
a very aggressive, masculinetype of way of looking at
business in the world and also,through colonization, the idea
(11:58):
that people need to beindividuals and you should not
be shown up in communities.
So community is important.
I've been reframing how I lookfor it, and so that includes
being really intentional aboutconnections with folks Anywhere
I travel.
It doesn't have to be permanentfor it to be meaningful and
impactful.
Being intentional about keepingin touch with people like my
friends that live in differentcountries, professional networks
(12:19):
, having been also wherever I go, making sure that I know where
are their doctors or hospitals,where are people, therapists,
people who I can get supportfrom.
I think really just trying tobuild a network that is fluid
and flexible wherever I go so Ifeel I'm not alone, because that
is my default survival responseis to be like I got this and
then you kind of like uh,hydronate, which is not good.
Speaker 3 (12:41):
So you do some regulation, self-regulation,
mapping your window ofregulation.
Speaker 2 (12:50):
I think that's the wording.
Can you tell me a little bitmore about that?
I feel like that's when I hitmy rock bottom.
When I was doing the startupwas when I was so dysregulated I
was in fight or flight so much.
So I started working with aenergy healer, hypnotherapist,
who really focused a lot onnervous system work, and that's
when I realized how much I'vebeen disconnecting from my body,
because obviously, when you'rein chronic pain or you're not
feeling well, you don't want tothink about your body very often
(13:11):
.
But it was so key to being ableto actually recognize that I
was overdoing my limits and helpmyself to regulate.
The window of regulation, alsoknown as a window of tolerance,
was developed by Dr Dan Siegeland it's basically the concept
that there is a kind of a sweetspot for where we can manage
stress and emotional arousal.
It's normal for us to not becalm, because if someone makes
(13:32):
you angry, you're going to beangry.
If you're sad, you're going tobe sad, but the key is to be
able to get yourself back intothat area where you're then able
to be more regulated, makebetter decisions, be able to
take care of yourself.
If you're dealing with a lot ofchronic stress and you're not
able to regulate yourself.
You end up living likedysregulated, either in fight or
flight or in freeze collapsefor long periods that are not
(13:54):
good, not healthy for you.
Speaker 1 (13:55):
Where do I even begin Back up here, because we've
kind of danced around what yourchronic illness is.
Let's tell listeners more aboutyour diagnosis story.
Do you have an elevator pitchto explain what that is?
Speaker 2 (14:09):
I've dealt with kind of complex mental health issues
since I was a teenager so Iguess that's been 20 years now
and I looked out for celiacdisease when I was 21.
And then from there just dealtwith a lot of gastrointestinal
issues, pcos, and then Ideveloped fibromyalgia.
It took me about two years toget a diagnosis because I was I
honestly had to like reallyadvocate a lot to get that, and
(14:31):
it's now been eight years.
So fibromyalgia is a basiccondition of, like the nervous
system, the body is overlysensitive to stimuli.
Basically, the main kind ofcharacteristics are like chronic
pain all over, difficulty withcognitive processing, extreme
fatigue and also difficulty withsleep disturbances.
But the pain I think for meanyways is a huge one.
I have just all different typesof pain all over.
Speaker 1 (14:53):
Okay, I'm going to be really honest with both of you.
If you can't tell already, I'mhaving a struggle bus with words
today, and that's why I've beenmostly sitting back and
listening to both of you isbecause my mind is working, my
mouth probably not so much, sobear with me with any questions
I have.
As you're talking about thisregulation, what's popping in my
(15:14):
head is people like me, wheresometimes I feel I can't even
regulate my body temperature,and so is that something that
you've struggled with and, if so, what would your advice be to
listeners?
Speaker 2 (15:29):
Definitely, temperature is a physiological
response, so it can definitelybe linked to your nervous system
states.
I'd say, though, less on tryingto control the representation
of the symptom and more focusingon what does my body need right
now?
Whatever tools and resourcesyou use are going to depend on
your nervous system state, andthey're also going to depend on
(15:49):
what you like and where you'reat.
Meditation doesn't work foreverybody, for example.
What's really helpful isfiguring out when I am hyper
aroused, when you were in fightor flight, what does my body
feel like?
My heart rate goes really fast,or maybe I'm really hot, or
whatever.
Kind of figure out what it isfor you when you are in fight or
flight.
What is it like when you are infreeze, what does it feel like
when your body is regulated?
And that way, when you start tofigure out those clues, those
(16:10):
triggers, those behaviors, thenyou're better able to.
I'm hyperactive right now.
This is the tools that work forme.
When that happens, it takes abit of trial and error, but it
requires you to look at yourself, because we all have completely
different nervous systems.
Works for one person is notgoing to work for the other
person.
Speaker 1 (16:24):
Absolutely Putting together a toolkit.
I messaged Andy and Linneayesterday.
I was a hot, hot mess.
I love how they support me andeach other when we are feeling
like that and sometimes thelogical thing that I would
normally do or recommend tosomeone else maybe in that
moment I'm not able to slow downand function to do that thing.
(16:48):
Sandy can send over a YouTubeclip of something I need to
listen to to slow me down and tohelp me get back to where I
need to be, Because yesterday Ihad a massive panic attack, have
no idea why.
No rhyme or reason, no stress.
The only thing I could look atwas I was traveling over the
weekend and it was a seven hourdrive to get to where I was.
(17:11):
I was only there for threenights.
Then it was a seven hour driveback, and so a lot of trying to
put the pieces together and Ifeel in the chronic illness
world that's a lot of what we do.
We're always trying to put thepuzzle pieces together and run
through our toolkit andsometimes our brains just can't
slow down to work out ourtoolkit, which that always sucks
when that happens.
Speaker 2 (17:31):
Yeah, but part of the toolkit can also be
co-regulating with others, andso that's what you did by
reaching out for support.
Again, co-regulation is justfeeling safety and support with
another nervous system.
I think we like discount, wethink it needs to be some like
big, spectacular thing that wedo.
It really can be as simple aslike getting a hug from somebody
or having a conversation orlike.
It can really be that simple.
Speaker 1 (17:52):
Absolutely, and what works one day might not work the
next day, and that's okay.
It's a matter of finding out,like you said, what our body
needs in the moment, allowingourselves to give over to that
five minutes and seeing if it'sactually going to work.
I don't know about you, butsometimes we hype ourselves up
so much we're like it's notworking.
It's not working, yeah, but youhave to give it a minute.
Speaker 2 (18:14):
Or we put a deadline on how, when it's supposed to
work, basically, oh, I've onlygot five minutes, so this needs
to get done and it could take 10minutes, like it takes as long
as it's going to take.
If you're able to regulate,you'll be more productive,
you'll be more balanced,whatever to move forward.
But stressing yourself outbecause it's taking a little
longer is not, isn't going toreally yeah, isn't going to help
.
I think that's.
I think self-compassion hasbeen more than like the best
(18:36):
things I've learned from nervoussystem.
Regulation work is just.
Whenever you have thesesymptoms, whatever it may be, if
, if you're experiencing a panicattack, if you're experiencing
a lot of anger, it's your bodytrying to protect you.
I think that's been reallyinteresting to reframe versus
it's really easy with chronicillness to be like my body's
failing me.
Speaker 1 (18:51):
But when I?
Speaker 2 (18:51):
was able to look at pain as my body saying slow down
or I need something.
That reframe honestly evenreduced my time that my flares
would last has been last becauseI wasn't sitting there like
shaming myself, which really,yeah, was not helping.
So how?
Speaker 3 (19:04):
has living your nomad life?
How has that influenced yourrelationship with adaptability
and your overall like?
This is my purpose.
I got to be out here, I got tomove, I got to see the people be
in the communities.
Speaker 2 (19:18):
It's been really interesting looking at
impermanence and really beingable to kind of go and go with
the flow a little bit and not beso tight and rigid and
expecting how things are goingto turn out.
I feel really grateful that Iget to experience that Also.
I mean traveling.
It also comes with beingcreative and having a little
more strategy and a little more.
I think how I travel now isalso better than how I traveled
(19:38):
in my 20s, pre-protic illness.
I think that's also taught meto be grateful for where I'm at,
not be looking back, justrecognize that every iteration
is totally okay.
I think sometimes we get stuckon like, oh, things are
different now and differentisn't necessarily bad.
Speaker 3 (19:54):
So if we just talk real quickly about the food I'm
a foodie, I love num, num, noms.
Can you just how's the food?
As you're traveling, what islike your favorite place that
you've been, where the food waslike I could eat this every
single day, over and over andover again?
Do you have a favorite food, afavorite travel location where
you just had the best snacks?
(20:15):
I?
Speaker 2 (20:15):
could literally eat Mexican food every single day,
particularly from like theOaxaca area, the taludas, and
like moles and like tacos Like Icould eat, and it's mostly corn
based, oh my gosh.
Yeah, food is an important partof travel you are speaking my
language.
Speaker 3 (20:33):
Jen loves tacos.
Speaker 1 (20:34):
My family.
We could eat Mexican every dayBest food Mine is Korean.
Speaker 2 (20:38):
Yeah, ooh, korean's also good.
Speaker 3 (20:40):
I could do Korean all day.
It's just like my favorite.
It's in my body, digest it sowell and it's perfect because
I'm vegan, so it's majorityplant-based and I can eat all
the things.
So, as a sensitive introvert,can we talk about boundary
setting?
Because I'm also a sensitiveintrovert, can we talk about
boundary setting?
(21:01):
What strategies have youdeveloped that made
communicating your needs alittle bit easier for you to
people that don't necessarilyalways get it?
Speaker 2 (21:09):
Yeah, First of all reframing that boundaries are
not a favor that somebody doesfor you.
It's really helpful.
I think I got into the habit oflike over explaining things,
like all the reasons why Icouldn't do something or why I
need to do something, and nolike, just cut that out.
A boundary is what you are goingto do for yourself and to keep
yourself safe, recognizing thatenergy is finite and that if I'm
setting a boundary, it's thebest thing, not just for me but
(21:31):
for, like, my work, for myrelationships, for anything that
I want to actually accomplishin the future.
I think it's helpful, too, forpeople who struggle with setting
boundaries to actually bearound folks who are really good
at it, because seeing I have afew friends that are so good at
setting boundaries and socompassionately the way that
they do it A few couple of timesI'd see them do it how this
amazing, and we know that whensomeone's good at setting
(21:52):
boundaries, they're alsogenerally really good at
receiving boundaries andrespecting other people's
boundaries.
And then you know that there'snot going to be self-sacrificing
or that resentment.
I've actually emulated otherpeople and that was how I was
able to, because we can't alwayscontrol how other people are
going to react, of course.
Speaker 3 (22:13):
But being around folks who are really good at it
was really helpful for me yeah,boundaries are my jam y'all I
love a good boundary.
Speaker 1 (22:17):
She's so good at it.
Oh, I love a good boundary.
If I'm struggling withboundaries, I just call andy I
love a good boundary listen wereyou always.
We're doing it for us?
Speaker 3 (22:26):
no, I wasn't.
I literally was a doormat.
Okay, I was, yes, pick me, I it, all the things.
And then I died for 38 minutesin a cycle of yes, pick me.
And I don't even remember whatI was rushing to, what I was
about to do or say, and what wasthat important and why I had
been on the hamster wheel forthat long.
(22:46):
So my favorite word became no,no, I can't, I don't have the
capacity, I don't want to.
No is a complete sentence, allthe things, but I have always
been one that respected otherpeople's boundaries.
I just never felt strong enoughto enforce my own.
I was also the kid that wasbullied, the teenager that was
bullied, the young adult thatwas bullied, that was in an
(23:08):
all-male career field thatnobody wanted to listen to or
talk to, but spent a lot of timetalking down at.
As I empowered myself more injust how I loved me, how I
looked at me, how I talked to mewhen I walked into rooms that
were late.
You're not going to talk to methat way today, because I didn't
even talk to me that way.
Today, I realized that I hadstarted to believe all the
(23:28):
things that they had impliedabout me and my worth.
I started to believe that and Iwouldn't look myself in the
mirror when I got to a pointwhere I could look at me and not
want to pick me apart.
How I walk in rooms lookdifferent now you can't break me
.
At one point in time you almostfractured me.
You can't break me becauseyou're not going to say anything
to me that I'm going to absorbbecause of what I said to myself
(23:51):
this morning and I can't changehow you feel about me.
But I know how I woke upfeeling about me and I know
exactly how I'm going to go tobed feeling about myself.
There's nothing that you cansay to me that's going to make
me feel any differently thanwhat I just said to myself this
morning.
And I start with me every singlemorning.
Whatever it is I'm going to sayto me, whatever I was moved to
say to me, is always somethingempowering that will lead me
(24:14):
closer to what my ultimate goalis, and that's balance, peace,
happy, healthy, thriving for meand everybody around me or
everybody that comes in contactwith me.
But it wasn't always that easyfor me.
No, I honestly had to dieunexpectedly for me to pick me
instead of saying, hey, I pickme, I needed to pick me, instead
of saying, hey guys, pick me, Ineeded to pick me.
And for I won't even sayunfortunately, fortunately, I
(24:38):
had to die and get life part two, the chance at life part two,
before the person that picked mewas me what's.
Speaker 2 (24:46):
What you're describing too, is an example of
like so many people have likethat fun response.
It's a survival response.
You don't want to be rejected,so you will.
People pleasing and that canreally be stemmed back to our
childhoods or early experiences.
But so much of when you sit andrecognize I would rather be
rejected by other people thanmyself, I would rather be well,
yeah, exactly.
Look myself in the mirror andsay I like myself, I like how I
(25:08):
move to the world, I like theintegrity that I have.
It really just like all theother noise around just reduces.
And then you do find thatpeople who respect I respect
people.
When someone tells me no, Irespect that because my brain's
a little bit like I know it'smore analytical.
So if someone says no, I'm like, hey, no.
When someone's a bit more,maybe, that I'm like do they
want to be here?
Are they just doing it becausethey feel bad, like I appreciate
(25:28):
when somebody, and when you'rearound somebody who's like a
hell yes or hell no, then youknow that they actually want to
be there or they actually wantto do the thing, and so that
feels good as well to be on thereceiving end or to be the
person in relationship with thatother person.
Speaker 1 (25:40):
You have mentioned reflecting on energy management
beyond the spoon theory.
What tools or frameworks do youuse to manage your energy from
day to day?
Speaker 2 (25:51):
Yeah, I think energy management is like more nuanced
and even for, like people withchronic illness, something
that's really helped me isreally I can almost look at like
energy management like a piechart, like broken up between so
like our physical, cognitive,energetic, emotional, and that I
know how long I can sit andwork on a computer before, like
cognitively, my brain, likemental fatigue, is gone, and so
(26:11):
if I do too much then I mighttake from other areas of my life
, like my ability to call afriend and talk to them.
But I kind of look ateverything's always shifting and
fluctuating and every day is anopportunity to really check in
and be like maybe normally I cansit for an hour without moving,
but maybe today it's like ahalf hour because I'm feeling
stiff, and so I think that itjust requires a lot of like
affecting with your body, butrecognizing that different
(26:34):
things take different amounts ofenergy and also different.
You might be able to go for awalk after working, but it may
be unable to have a conversation.
So there's different forms ofenergy and stuff, but
interesting to kind of navigate.
Speaker 1 (26:45):
Does that change when you're traveling?
Are there signals that younotice as you're moving around?
Speaker 2 (26:50):
Yeah, because energy is also impacted by our external
environment.
Right, some of us are a little,I wouldn't say a ton, but I do
get sensory overload sometimes,like noise and from clouds, and
so travel can definitely bereally loud depending on where
you're staying, what you'redoing or being around a lot of
people on buses or whatever.
Energy can be really drainingfor me.
So I think being aware of ourenergy it's not just internal,
(27:12):
it's also what's going on aroundus.
So being aware of how ourdifferent environments can
impact our energy for sure isreally important, which is why
I'm really really careful aboutscheduling.
I'm careful about always puttingin rest days as if it's like a
meeting, and being careful aboutlooking ahead and time blocking
for things.
Because of my brain a littleneurodiversity I will write
(27:32):
to-do lists that are like 50items long.
I'll just keep adding thingsand so having to be like what is
the one or two things I need toget done today, I get that done
.
Now what Do I have energy formore?
If I do, what is it so reallygoing step by step versus trying
to make a really massive plan,when your plan should be
bite-sized and then they shouldalso adopt?
Speaker 3 (27:52):
So can we talk a little bit about mental health
and mental health treatments?
You comfortable, yeah.
How has your mental healthissue shaped your approach to
seeking your care for chronicpain?
What has that been like?
Have you been treated kindly?
Have you like?
What has that been like for you?
Speaker 2 (28:10):
I always like to talk with people about this because
I think everyone's had theirexperiences unexpectedly when it
comes to mental health.
But I think that there's a lotof stigma around obviously
mental health, and I thinkparticularly it's gotten a
little bit better, maybe notnecessarily in how treatment
options, but just in how societyis viewing mental health now.
But I think like 15 years agoit was not the case, and so when
(28:30):
I was diagnosed, I wasdiagnosed with bipolar, which I
since now I'm going through aprocess of not that may not be
the right diagnosis, I don'tthink it was I was on so much
medication.
I think that was a time thatstill is a time where doctors
want there's an emphasis on likediagnosing and labeling, but
not necessarily on improvingquality of life.
And so there's so many yearsabout six years of my quality of
(28:51):
life was really really poor.
I was not getting better.
I was on so much medication,like seven medications and just
feeling lost who I was, andthere's so much stigma around
too, particularly with mooddisorders.
So I think that then when I wasgoing through fibromyalgia, I
just recognized this is anotherinvisible illness with a stigma.
There's where I don't want totry much of medications and
labeled and not actually.
(29:11):
I don't want to try much ofmedications and labeled and not
actually.
I don't want my quality of lifeto again suffer.
So it did change how Iapproached treatment.
I didn't realize how much itimpacted.
When I really started doingnervous system work I realized I
would feel so anxious talkingto doctors because of those
experiences of feeling like notheard or going in and be like I
have all these side effects andbe like, no, that's not a side
effect of the medication andit's like why am I losing all my
(29:31):
hair effects?
And be like, no, that's not aside effect of the medication
and it's like why am I losingall my hair?
Yeah, I think just feelingreally less with you for a while
and it can feel reallydisempowering you said something
that made me think.
Speaker 1 (29:38):
Now you said you're working on.
Maybe that wasn't the truediagnosis.
I've been in that situationbefore, so my question for you
would be medications.
What did that do to you?
Because if you are put on amedication for something like
bipolar and you don't havebipolar, it can actually make
you act bipolar.
So did you have that situationhappen?
Speaker 2 (29:59):
Yeah yeah.
I was getting so agitated thatat one point they put me on
antipsychotics.
I was on so many medicationsand I'm on anything now.
It's not that my mental health,it's something I'm still
continuing to work on.
But I have not had any manicepisodes or anything, which
makes me think that that wasnever really the proper
diagnosis.
I think that I was just reallydysregulated.
I also think it was ADHD, butwhatever it is, I know people
(30:22):
can have both.
The reality was the medicationswere not working and it was
every time going to the doctorand getting another one put on.
I just remember going to apsychiatrist and be like what is
our end game here?
What is the dose that we'regetting to?
And he just said I havepatients who are half your size
on much higher doses.
I have patients that are doubleyour size on lower doses.
We just try things.
I just was like I don't want toplay Russian roulette with my
(30:43):
life.
I would spend hours and timesand not even know the hours
would buy, like I would just sitbe at a computer and I would be
like didn't even know that whathad happened, things that were
really awful.
And then you start feelingreally bad about yourself,
because then you think thatpeople think that you're
incompetent or that you can'tarticulate your thoughts, or
that you, you know it's a huge.
It's a huge weight, I think, ahuge loss of confidence.
Speaker 1 (31:05):
I think I would say I don't think we talk enough
about how okay.
You go to talk to them and theythink maybe the diagnosis is
whatever it is they come up with, and they give you medication A
, and then you need to takemedication B because of the side
effects from medication A.
And then there's medication Cthat's added on because
(31:25):
medication A and B are causingsomething else.
And it goes on and on and on,and before you know it, you're
on 13 medications and feelinglike you're walking through fog,
but you still don't feel like areal person and we need to talk
about that.
Speaker 2 (31:39):
Yeah, yeah.
No, it's really scary.
I mean, you don't really knowwhat is the medication, what is
the illness and who is.
What is me?
What is the?
And?
The problem is, too, we have anegative connotation towards
mental illness or any sort ofillness, but that's just a part
of being human, a negativeconnotation towards mental
illness or any sort of illness,but that's just a part of being
human.
The problem for me was not thelabel.
The problem was I was notgetting better.
I want to be better.
I don't care what the label is,I want to feel better.
(31:59):
I was getting much worse, yeah.
Speaker 3 (32:01):
What advice do you have for fellow Spoonies about
advocating for themselves intheir care and navigation?
Speaker 2 (32:07):
I think the doctors are such a valuable wealth of
knowledge, but at the end of theday, it's your body and you
need to trust when something isoff and again, build a support
network of folks who can say areyou sure that's going to work
for you, are you sure that'sreally be partners in your
treatment, because it can bevery overwhelming to do it on
your own.
And if you're in a reallyvulnerable state and you're
alone at the doctor's office andthey're like, take this, you're
(32:28):
like, okay, I guess you'redesperate, right?
So I think having that supportsystem even bringing someone
with you to a doctor'sappointment, writing questions
down in advance and havingthings ready to go your medical
record is your medical record,so you should always ask for it.
You should always keep all ofyour blood work and everything.
I have a massive folder.
I keep all of it.
Yeah, you're the manager ofyour health and also to do that
(32:50):
too, I think like not todiminish.
Doctors have only 15 minuteswith patients.
It's a very short amount oftime.
So what can you do to also helpthem, to help you?
When I got diagnosed withfibromyalgia, I actually brought
in the diagnostic criteriabecause we were kind of like
doing around it.
I don't do every single likescope, scan, blood work.
You can imagine.
I brought the diagnosticcriteria to my doctor, she went
(33:12):
through with me and that's whenI finally got a diagnosis and
then got to see a rheumatologist.
Sometimes you do there's thingsyou need to do to kind of like
help your doctor, because theyare so overloaded with patients
that don't have a lot of time.
I agree.
Speaker 3 (33:25):
So what is one piece of advice you wish someone would
have given you at the beginningof your chronic illness journey
and managing your chronicillnesses?
Speaker 2 (33:34):
I would love to hear your thoughts too.
I think would be.
I was like very fixated on likeputting my chronic illness into
like remission and like reallyrigid about it.
I spent a lot of time on likemessage boards and like looking
in different like support groupsthat I was just so anxious that
I was gonna get worse and worseand worse, and the only option
was to get worse and worse andworse.
And the only option was to getworse and worse and worse or be
(33:55):
completely healed, and there wasno in between.
And I think that, like when wefocus on like what, what should
be, we we kind of lose sight ofwhat could be.
And so there's so manybeautiful things that come into
my life because of likeexperiencing chronic illness and
, uh, change is inevitableeveryone.
If you live long enough, youwill have health problems.
You will experience personaland professional setbacks.
(34:15):
It is how you navigate them.
I think I just saw what I wasexperiencing.
This is like the end.
You are never going to be funagain.
No one will want to be aroundyou.
You're just going to get sickerand sicker and really it's like
this is an obstacle and maybeit's going to result in things
being different forever, inthings being different forever,
but maybe that different isn'tnecessarily completely bad.
Maybe there's otheropportunities in beauty that I
can find Love that.
Speaker 3 (34:36):
I love everything about what you just said.
I was also her, I was the.
I just needed to go intoremission and I was in all the
message boards and on the faddiets and they said this would
work and all the things.
And I would be so frustratedwith myself because it wasn't
the miracle, because it didn'twork, because I still had all
(34:56):
the things and I still felt like.
I felt.
I realized that when I waskinder to me and I started
celebrating the things that mybody could still do and even
though they looked differently,I was doing the things.
When I started to just love onAndy, in that way, I was able to
do more things and, although itlooked different, I was able to
do them.
(35:16):
So what's next for your journeyas a slow traveling nomad and a
super advocate?
Speaker 2 (35:23):
Yeah, I think I'm going with the flow.
I want to live my lifeauthentically and intentionally
and see where it takes me andfeeling really grateful for
every day and opportunity that Iget to have to experience the
world.
But in terms of chronic illness, I'm super passionate if it
hasn't come out in thisconversation yet about nervous
system regulation and want toshare this.
Education can help with ourregulation and want to share
this knowledge with everybody.
So I really see doing more ofthat.
(35:44):
Hopefully, if other people Ithink just more stories you hear
of other people navigatingchronic illness and doing it the
wrong way.
You see there's lots ofdifferent ways to do it.
There's no right or wrong wayand if other people feel
empowered to be like I can livemy life in an interesting way.
This isn't over for me.
I think that that would bereally.
I'd love for other people justto feel.
I followed somebody who, backon Instagram, was like not even
videos, yet I followed somebodywho was like posting their
(36:06):
photos of doing yoga withchronic fibromyalgia and every
day and every week how theyimproved.
I still think about it eightyears later how much that helped
me to see somebody trying andmaking improvements, no matter
how long it took.
I think that's really valuablefor people to see.
Speaker 3 (36:19):
Where can people connect with you?
Speaker 2 (36:21):
I'm trying to get off of all the social media.
So right now I'm on SubstackCosmic Beat it's called and then
my website and I write onMedium.
So I'm trying to do long formbecause I find social media
really too stimulating on medium.
Speaker 1 (36:33):
So I'm trying to do long form because I find social
media really too stimulating.
Speaker 3 (36:36):
Yes, Caitlin, you're a whole vibe and I just want to
pack a backpack and travel withyou Like you're a whole vibe,
All of your energy just givescalm and peace, and this was
thank you for one wanting to sitdown and redo the conversation
with us.
Thank you for being open tothat and thank you for spending
(36:57):
the time with us.
I've learned a lot and I just Ijust feel calm with you.
So if nobody tells you thattoday or ever, just know that
you have a very calming presenceand I am very grateful that I
got to spend an hour in thatcalming presence.
Speaker 1 (37:09):
That's very sweet, thank you, I agree.
I almost feel like I've beensitting here listening to spa
music or something.
I want to kick back in my chairand close my eyes.
Now I don't know what it is,but listening to the two of you,
I'm quite relaxed.
I might have needed that afteryesterday.
Speaker 3 (37:23):
Well, good.
Speaker 1 (37:24):
So I appreciate both of you and the time I was loving
connecting with you both.
Speaker 2 (37:28):
And yeah, if you're ever in Colombia or feel like
traveling, let me know, goaround, and I'm always open for
travel buddies.
Heck, yeah.
Speaker 1 (37:35):
Heck, yeah, listeners , until next time.
Don't forget your spoon.
Welcome back to my Spoonie Sisters podcast.
Today we have a guest whoembodies resilience and
adaptability in the face ofchronic illness.
As a slow travel nomad andformer co-founder of a startup
in Colombia, she has navigatedthe complex intersection of
entrepreneurship, self-care andchronic illness management while
(00:20):
living life on the move.
She brings with her a wealth ofinsights on topics ranging from
energy management and gentlegoal setting to redefining
purpose and self-advocacy inhealthcare.
Welcome, caitlin.
Today we also have Anne B Byerswith us.
Hello, ladies.
Speaker 2 (00:38):
Hello, thanks for having me, hello.
Speaker 1 (00:39):
Caitlin, do you mind telling us about yourself?
Speaker 2 (00:43):
Sure, yes, I'm a slow travel nomad.
I kind of travel to differentplaces and stay for a little
while.
I'm a life and empowermentcoach.
I mostly work with folks wholive with chronic illness or
neurodiversity.
Previously, my background isactually in environmental
engineering.
I've worked mostly in wastemanagement and recycling, which
is a very trusted interceptionbetween like sustainability and
like environmental health, solike the health of the
(01:05):
environment.
Speaker 3 (01:05):
That's, I guess, me in a nutshell, the first time we
were scheduled to talk, I hadinternet problems and my
internet didn't want to internet.
Now I get to talk to you and soI'm excited.
So environmental engineering isthat what you said?
Yes, okay, can we talk a littlebit about that first?
What is that?
Even?
What is environmentalengineering for those people who
(01:27):
don't know?
Speaker 2 (01:28):
It's using engineering principles like
technical engineering, but forsolving environmental issues or
also to mitigate environmentalissues.
So environmental engineers canwork in a range of different
industries oil and gas andmining to help with companies to
reduce environmental problemsor anything that's environment
related.
It's using more technicalskills towards that.
I used it towards wastemanagement.
(01:49):
I'm really into waste diversion.
I started out in recycling andworking in like circular economy
, trying to reduce waste.
Have you?
Speaker 3 (01:56):
always been into saving the world waste reduction
at a time, or is that somethingthat you grew into and you're
like, hey, I think I want to dothis for a career.
Speaker 2 (02:04):
I just want to do work that's aligned with my
values.
I think that, particularlyliving with chronic illness and
as I got more illnesses I justgot more reinforced Anything I
do, I want it to feel reallygood.
I want to feel like I'mcontributing and I'm
collaborating with others andwe're working towards solutions
that make the world maybe even alittle bit better.
(02:25):
There's some big problems thatwe can't necessarily solve
overnight, but then we'reworking towards making some
changes.
Speaker 3 (02:31):
So you're a slow nomad.
What does that even mean?
So we know that you travel, andwhat is the nomad life?
Generically just the overview.
What does that mean?
What got you into it?
Speaker 2 (02:42):
I had immigrated to Colombia like what seven years
ago, and I was living there andhad my business.
I went back to Canada duringthe pandemic.
That's where I'm from.
I was quite sick for a whileand so I told myself, when I get
better, I really want to travel.
And you know, nothing'sguaranteed in life.
Some people wait till theyretire to travel, but that's not
guaranteed.
I really wanted to have anopportunity to travel a little
(03:03):
bit guaranteed.
I really wanted to have anopportunity to travel a little
bit.
I say slow because I stay inplaces for months at a time,
just because it is veryexhausting to travel in general.
It is exhausting to travel ifyou have an illness.
So, yeah, it's just in placesfor a few months at a time.
I also just try to do so in away that I'm connecting and
learning local culture, that I'mtrying to reduce my
environmental impact when Itravel.
So it's just traveling in a waythat feels a little more
(03:23):
aligned to my values.
So do you speak?
Speaker 3 (03:26):
fluently different languages.
Do you go knowing the languageor do you learn the language
while you're there?
Speaker 2 (03:33):
I mostly stay in Latin America because I love it
in Latin America and I speakabout intermediate Spanish, so
I'm not fluent yet.
Working on it, I just couldn'tgo to different countries and
language is not something I pickup easily.
I don't know, do you both speakother languages?
Very minimally.
Speaker 3 (03:48):
Not very fluently anymore.
Okay, what did you speak?
So I did speak relativelyfluent Spanish.
Speaker 1 (03:56):
Okay.
Speaker 3 (03:56):
And I could get my point across in German and I
speak a little bit of Korean andit's because I've been
stationed in those places.
But the Spanish is, you know,just family background.
But yeah, when you don't use itoften you really do lose it.
I can understand it, but it'sgetting my mind to convert it
now.
(04:16):
It's like what am I trying tosay?
And now I jumble multiplelanguages into one sentence
because I know a little bit of alot of languages.
So, yeah, this is such a coolconversation.
I'm so excited.
What are some unfilteredlessons you've learned about
resilience and self-advocacy assomeone with a chronic illness
(04:36):
in the entrepreneurial space asa slow nomad?
That was a lot of stuff.
I just asked.
Speaker 1 (04:42):
That was a lot of words.
Speaker 2 (04:45):
I had to.
I had a startup about six yearsago and I wasn't necessarily a
nomad then because that wouldhave been a lot.
But I will say thatentrepreneurship and chronic
illness is a lot of lessonsthere, as you both know.
Doing business and havingchronic illness, I think I just
realized I burnt myself outreally badly.
I got very, very sick because Iwas trying to keep up with
everybody else and being inaccelerator programs and seeing
(05:05):
other founders pollinators or dothings that I physically could
not do.
I got really down myself for awhile that I'm not showing up
the way that an entrepreneurshould show up.
It took me to get very unwellbefore I realized that
entrepreneurship is going tolook very different.
If you have chronic illness.
That's okay and actually theculture isn't sustainable for
anybody.
Having a chronic illnessactually means that you are
(05:25):
respecting your limits a littleearlier than maybe doing that
for 20 years and getting reallysick.
Speaker 3 (05:30):
So you, you said something that made my ear perk
up and it was about theaccelerator program.
So I struggled.
There too, I would be in theaccelerator programs, literally
trying to keep up with thepeople doing things, and my body
hated me.
It was just raging, my weightwas fluctuating, I couldn't
sleep, my appetite was trash andI really was spiraling because
(05:52):
I thought why can't I keep upLike?
This is my dream, this is whatI want to do, and what I
realized is I'm not supposed tobe able to keep up with them and
what they were doing wasn'tsustainable or healthy.
I tried it and tried it, and Iwas in that cycle for a really
long time and I was gettingsicker and sicker as long as I
stayed in the cycle.
It took a health scare for meto be like wait a minute, if I
(06:14):
just offload some of these or ifI just did this a different way
to conserve some spoons, maybeI wouldn't feel as bad.
And then I didn't.
I didn't feel as badly and I'mlike OK, it was the wrapping my
mind around.
This looks different because Iam different and I had to be OK
with it.
But my difference also supercool and what I realized is that
(06:35):
are different.
Other people try to emulatebecause they realize that the
hustle culture for real isn'tsustainable for anyone.
I didn't realize how manypeople look at the entrepreneurs
in the chronic illness spaceand go, wow, I wish I could do
it like that.
Speaker 2 (06:50):
Yeah, that seems nicer.
Oh, like you're trying to getbalanced, you're actually
prioritizing sleep.
That seems like that would feelbetter.
Speaker 3 (06:58):
Yeah.
Speaker 2 (07:01):
Stay up all night?
No for sure.
Yeah, I love that you were alsoan accelerator program, because
it does feel really lonely atthe time when you're like, oh,
like, trying to explain to otherpeople what it's like.
And it was.
Speaker 3 (07:11):
Yeah, I'm in one right now and I am the only one
that's sick.
I'm like, oh, I can't be inthere.
I had class and I had meetingsand I'm like something's got to
give.
And I guess today it's going tobe the accelerated program that
is further down on my list ofpriorities, but I'm in one now
and it's exhausting becausewe're doing these meetups and to
introduce yourself, and it'sthe constant.
(07:32):
Hey, I know that you want me tobe super active in this pod and
I may not be able to, andhere's why.
And then the fielding thequestions, but also hearing the
disappointment in the emailcommunications like, oh, you
missed another meeting or youleft out early and I'm like, but
you don't actually get why I'mso glad we're having this
conversation.
I'm just over here calling,Thank you.
Speaker 2 (07:53):
No, I love.
I get two points about why.
I think I learned one be alittle bit more vocal about what
you're experiencing.
I didn't tell anybody except mybusiness partner that I had
health issues, and so whenpeople would make comments, I've
really internalized it.
And the other thing I think isjust like not caring if other
people make comments or don'tunderstand what you're
experiencing.
I remember so many times sittingin meetings.
I remember one time inparticular I just had like a
(08:14):
massive flare.
I have fibromyalgia, so it wasjust like pain all over.
And I'm sitting in this meetingand someone looked at me and
said you have to try a littleharder with Spanish.
I literally was having a hardtime processing English at this
point.
I've done everything just toget myself out the door.
I was sitting there justwaiting to clean it through the
whole meeting and stuff, andafter I just that's not mine, I
don't need to, it doesn't matterwhat that person thinks, it
(08:35):
does not matter, but it is hard.
It is hard when you feel you'rebeing judged or someone thinks
you're living with chronicillness and you're showing up.
That is taking Herculeanstrengths.
That is like you know, that'slike tenacity to another level.
Speaker 1 (08:48):
I have a question for both of you, for the people
like me out there that have noidea what you're talking about.
What is an accelerator program?
Speaker 2 (08:58):
Oh, my gosh sorry.
No, it's okay.
Speaker 1 (08:59):
I'm just listening to both of you going.
I have no idea what you'retalking.
Speaker 3 (09:02):
So think of it as business mentorship.
On speed, they got X amount ofweeks to get you through a
program and a lot of the timesthey're grant programs, so at
the end you get some monies ofsome sort, but they want to make
sure it's value added.
They cram it at you in a smallamount of time and several of
those have decided I couldn't dothat anymore, I couldn't pitch
(09:25):
for competition.
It is a lot.
Speaker 2 (09:27):
It is supposed to accelerate your growth, so
supposed to help with, like,getting your meeting investors
and helping you to get, like,your pitch deck ready.
So that can be very helpful.
But yeah, it's very intense, so, on top of running your
business hard pass for me.
It'd be interesting there'saccelerators for chronic illness
, though I think it would beinteresting if they had more
accelerators that were gearedtowards entrepreneurs that had
(09:48):
like neurodiversity or whoneeded a different approach to
how they're doing their business, because how typical
accelerators are is very hustle.
Speaker 3 (09:56):
Yes, that might be on a to-do list.
Speaker 1 (09:59):
I feel like that would use every spoon I have and
you wouldn't see me for a monthbecause I'd be sleeping for a
month just to catch up.
It's a lot and it doesn't.
Speaker 2 (10:08):
Honestly, there are points too, when you almost
resent your business, eventhough you love what you're
doing so much.
I think it's like what am Idoing to myself?
I'd be like what am I like?
Am I crazy?
Speaker 3 (10:17):
Oh my gosh, I literally told Jen last month.
I was like I got this feelinglike I don't want to do this
anymore, and she was like, well,what do you mean?
And that is where the feelingwas coming from.
There was an insane amount ofpressure from this program, to
the point where is this even mypassion?
I didn't want to look at mystuff or do any marketing or
(10:37):
communicate or people.
I just need to get this done soI can be done with this program
.
And at that point I just needto be done with the program.
Maybe I'll feel a little bitbetter.
So I took that breather, Idisappeared off the social media
, I went on what I call a mentalvacation.
I am a mental nomad.
I disappear for an unknownamount of time and then I pop
(11:00):
back up just so that I couldfind the balance and disconnect
from what I knew was about tomake me sick, disconnect from
what I knew was about to make mesick.
I had gotten back in the rabbithole of hustle culture for the
sake of being able to do thisthing and to not look different
than this group, for the sake ofthem to shut up talking to me
or talking around me about menot being there, understanding
that my body needed differentthings, and to include my mind.
My mind needed me to care forit way more than I was while I
(11:24):
was trying to spiral in thishustle culture.
So, while you're out and about,what is your support network
like?
Because you travel a lot andyou've done some accelerators
and those are a lot and you havea chronic illness, how's?
Speaker 2 (11:36):
your support.
I value support a lot more thanI used to.
Because of hustle culture, it'seasy to internalize this
hyper-independence I need to doit all.
Asking for help is no, I needto figure this out on my own.
I mean, none of us are meant todo this alone, and that is also
a very aggressive, masculinetype of way of looking at
business in the world and also,through colonization, the idea
(11:58):
that people need to beindividuals and you should not
be shown up in communities.
So community is important.
I've been reframing how I lookfor it, and so that includes
being really intentional aboutconnections with folks Anywhere
I travel.
It doesn't have to be permanentfor it to be meaningful and
impactful.
Being intentional about keepingin touch with people like my
friends that live in differentcountries, professional networks
(12:19):
, having been also wherever I go, making sure that I know where
are their doctors or hospitals,where are people, therapists,
people who I can get supportfrom.
I think really just trying tobuild a network that is fluid
and flexible wherever I go so Ifeel I'm not alone, because that
is my default survival responseis to be like I got this and
then you kind of like uh,hydronate, which is not good.
Speaker 3 (12:41):
So you do some regulation, self-regulation,
mapping your window ofregulation.
Speaker 2 (12:50):
I think that's the wording.
Can you tell me a little bitmore about that?
I feel like that's when I hitmy rock bottom.
When I was doing the startupwas when I was so dysregulated I
was in fight or flight so much.
So I started working with aenergy healer, hypnotherapist,
who really focused a lot onnervous system work, and that's
when I realized how much I'vebeen disconnecting from my body,
because obviously, when you'rein chronic pain or you're not
feeling well, you don't want tothink about your body very often
(13:11):
.
But it was so key to being ableto actually recognize that I
was overdoing my limits and helpmyself to regulate.
The window of regulation, alsoknown as a window of tolerance,
was developed by Dr Dan Siegeland it's basically the concept
that there is a kind of a sweetspot for where we can manage
stress and emotional arousal.
It's normal for us to not becalm, because if someone makes
(13:32):
you angry, you're going to beangry.
If you're sad, you're going tobe sad, but the key is to be
able to get yourself back intothat area where you're then able
to be more regulated, makebetter decisions, be able to
take care of yourself.
If you're dealing with a lot ofchronic stress and you're not
able to regulate yourself.
You end up living likedysregulated, either in fight or
flight or in freeze collapsefor long periods that are not
(13:54):
good, not healthy for you.
Speaker 1 (13:55):
Where do I even begin Back up here, because we've
kind of danced around what yourchronic illness is.
Let's tell listeners more aboutyour diagnosis story.
Do you have an elevator pitchto explain what that is?
Speaker 2 (14:09):
I've dealt with kind of complex mental health issues
since I was a teenager so Iguess that's been 20 years now
and I looked out for celiacdisease when I was 21.
And then from there just dealtwith a lot of gastrointestinal
issues, pcos, and then Ideveloped fibromyalgia.
It took me about two years toget a diagnosis because I was I
honestly had to like reallyadvocate a lot to get that, and
(14:31):
it's now been eight years.
So fibromyalgia is a basiccondition of, like the nervous
system, the body is overlysensitive to stimuli.
Basically, the main kind ofcharacteristics are like chronic
pain all over, difficulty withcognitive processing, extreme
fatigue and also difficulty withsleep disturbances.
But the pain I think for meanyways is a huge one.
I have just all different typesof pain all over.
Speaker 1 (14:53):
Okay, I'm going to be really honest with both of you.
If you can't tell already, I'mhaving a struggle bus with words
today, and that's why I've beenmostly sitting back and
listening to both of you isbecause my mind is working, my
mouth probably not so much, sobear with me with any questions
I have.
As you're talking about thisregulation, what's popping in my
(15:14):
head is people like me, wheresometimes I feel I can't even
regulate my body temperature,and so is that something that
you've struggled with and, if so, what would your advice be to
listeners?
Speaker 2 (15:29):
Definitely, temperature is a physiological
response, so it can definitelybe linked to your nervous system
states.
I'd say, though, less on tryingto control the representation
of the symptom and more focusingon what does my body need right
now?
Whatever tools and resourcesyou use are going to depend on
your nervous system state, andthey're also going to depend on
(15:49):
what you like and where you'reat.
Meditation doesn't work foreverybody, for example.
What's really helpful isfiguring out when I am hyper
aroused, when you were in fightor flight, what does my body
feel like?
My heart rate goes really fast,or maybe I'm really hot, or
whatever.
Kind of figure out what it isfor you when you are in fight or
flight.
What is it like when you are infreeze, what does it feel like
when your body is regulated?
And that way, when you start tofigure out those clues, those
(16:10):
triggers, those behaviors, thenyou're better able to.
I'm hyperactive right now.
This is the tools that work forme.
When that happens, it takes abit of trial and error, but it
requires you to look at yourself, because we all have completely
different nervous systems.
Works for one person is notgoing to work for the other
person.
Speaker 1 (16:24):
Absolutely Putting together a toolkit.
I messaged Andy and Linneayesterday.
I was a hot, hot mess.
I love how they support me andeach other when we are feeling
like that and sometimes thelogical thing that I would
normally do or recommend tosomeone else maybe in that
moment I'm not able to slow downand function to do that thing.
(16:48):
Sandy can send over a YouTubeclip of something I need to
listen to to slow me down and tohelp me get back to where I
need to be, Because yesterday Ihad a massive panic attack, have
no idea why.
No rhyme or reason, no stress.
The only thing I could look atwas I was traveling over the
weekend and it was a seven hourdrive to get to where I was.
(17:11):
I was only there for threenights.
Then it was a seven hour driveback, and so a lot of trying to
put the pieces together and Ifeel in the chronic illness
world that's a lot of what we do.
We're always trying to put thepuzzle pieces together and run
through our toolkit andsometimes our brains just can't
slow down to work out ourtoolkit, which that always sucks
when that happens.
Speaker 2 (17:31):
Yeah, but part of the toolkit can also be
co-regulating with others, andso that's what you did by
reaching out for support.
Again, co-regulation is justfeeling safety and support with
another nervous system.
I think we like discount, wethink it needs to be some like
big, spectacular thing that wedo.
It really can be as simple aslike getting a hug from somebody
or having a conversation orlike.
It can really be that simple.
Speaker 1 (17:52):
Absolutely, and what works one day might not work the
next day, and that's okay.
It's a matter of finding out,like you said, what our body
needs in the moment, allowingourselves to give over to that
five minutes and seeing if it'sactually going to work.
I don't know about you, butsometimes we hype ourselves up
so much we're like it's notworking.
It's not working, yeah, but youhave to give it a minute.
Speaker 2 (18:14):
Or we put a deadline on how, when it's supposed to
work, basically, oh, I've onlygot five minutes, so this needs
to get done and it could take 10minutes, like it takes as long
as it's going to take.
If you're able to regulate,you'll be more productive,
you'll be more balanced,whatever to move forward.
But stressing yourself outbecause it's taking a little
longer is not, isn't going toreally yeah, isn't going to help
.
I think that's.
I think self-compassion hasbeen more than like the best
(18:36):
things I've learned from nervoussystem.
Regulation work is just.
Whenever you have thesesymptoms, whatever it may be, if
, if you're experiencing a panicattack, if you're experiencing
a lot of anger, it's your bodytrying to protect you.
I think that's been reallyinteresting to reframe versus
it's really easy with chronicillness to be like my body's
failing me.
Speaker 1 (18:51):
But when I?
Speaker 2 (18:51):
was able to look at pain as my body saying slow down
or I need something.
That reframe honestly evenreduced my time that my flares
would last has been last becauseI wasn't sitting there like
shaming myself, which really,yeah, was not helping.
So how?
Speaker 3 (19:04):
has living your nomad life?
How has that influenced yourrelationship with adaptability
and your overall like?
This is my purpose.
I got to be out here, I got tomove, I got to see the people be
in the communities.
Speaker 2 (19:18):
It's been really interesting looking at
impermanence and really beingable to kind of go and go with
the flow a little bit and not beso tight and rigid and
expecting how things are goingto turn out.
I feel really grateful that Iget to experience that Also.
I mean traveling.
It also comes with beingcreative and having a little
more strategy and a little more.
I think how I travel now isalso better than how I traveled
(19:38):
in my 20s, pre-protic illness.
I think that's also taught meto be grateful for where I'm at,
not be looking back, justrecognize that every iteration
is totally okay.
I think sometimes we get stuckon like, oh, things are
different now and differentisn't necessarily bad.
Speaker 3 (19:54):
So if we just talk real quickly about the food I'm
a foodie, I love num, num, noms.
Can you just how's the food?
As you're traveling, what islike your favorite place that
you've been, where the food waslike I could eat this every
single day, over and over andover again?
Do you have a favorite food, afavorite travel location where
you just had the best snacks?
(20:15):
I?
Speaker 2 (20:15):
could literally eat Mexican food every single day,
particularly from like theOaxaca area, the taludas, and
like moles and like tacos Like Icould eat, and it's mostly corn
based, oh my gosh.
Yeah, food is an important partof travel you are speaking my
language.
Speaker 3 (20:33):
Jen loves tacos.
Speaker 1 (20:34):
My family.
We could eat Mexican every dayBest food Mine is Korean.
Speaker 2 (20:38):
Yeah, ooh, korean's also good.
Speaker 3 (20:40):
I could do Korean all day.
It's just like my favorite.
It's in my body, digest it sowell and it's perfect because
I'm vegan, so it's majorityplant-based and I can eat all
the things.
So, as a sensitive introvert,can we talk about boundary
setting?
Because I'm also a sensitiveintrovert, can we talk about
boundary setting?
(21:01):
What strategies have youdeveloped that made
communicating your needs alittle bit easier for you to
people that don't necessarilyalways get it?
Speaker 2 (21:09):
Yeah, First of all reframing that boundaries are
not a favor that somebody doesfor you.
It's really helpful.
I think I got into the habit oflike over explaining things,
like all the reasons why Icouldn't do something or why I
need to do something, and nolike, just cut that out.
A boundary is what you are goingto do for yourself and to keep
yourself safe, recognizing thatenergy is finite and that if I'm
setting a boundary, it's thebest thing, not just for me but
(21:31):
for, like, my work, for myrelationships, for anything that
I want to actually accomplishin the future.
I think it's helpful, too, forpeople who struggle with setting
boundaries to actually bearound folks who are really good
at it, because seeing I have afew friends that are so good at
setting boundaries and socompassionately the way that
they do it A few couple of timesI'd see them do it how this
amazing, and we know that whensomeone's good at setting
(21:52):
boundaries, they're alsogenerally really good at
receiving boundaries andrespecting other people's
boundaries.
And then you know that there'snot going to be self-sacrificing
or that resentment.
I've actually emulated otherpeople and that was how I was
able to, because we can't alwayscontrol how other people are
going to react, of course.
Speaker 3 (22:13):
But being around folks who are really good at it
was really helpful for me yeah,boundaries are my jam y'all I
love a good boundary.
Speaker 1 (22:17):
She's so good at it.
Oh, I love a good boundary.
If I'm struggling withboundaries, I just call andy I
love a good boundary listen wereyou always.
We're doing it for us?
Speaker 3 (22:26):
no, I wasn't.
I literally was a doormat.
Okay, I was, yes, pick me, I it, all the things.
And then I died for 38 minutesin a cycle of yes, pick me.
And I don't even remember whatI was rushing to, what I was
about to do or say, and what wasthat important and why I had
been on the hamster wheel forthat long.
(22:46):
So my favorite word became no,no, I can't, I don't have the
capacity, I don't want to.
No is a complete sentence, allthe things, but I have always
been one that respected otherpeople's boundaries.
I just never felt strong enoughto enforce my own.
I was also the kid that wasbullied, the teenager that was
bullied, the young adult thatwas bullied, that was in an
(23:08):
all-male career field thatnobody wanted to listen to or
talk to, but spent a lot of timetalking down at.
As I empowered myself more injust how I loved me, how I
looked at me, how I talked to mewhen I walked into rooms that
were late.
You're not going to talk to methat way today, because I didn't
even talk to me that way.
Today, I realized that I hadstarted to believe all the
(23:28):
things that they had impliedabout me and my worth.
I started to believe that and Iwouldn't look myself in the
mirror when I got to a pointwhere I could look at me and not
want to pick me apart.
How I walk in rooms lookdifferent now you can't break me
.
At one point in time you almostfractured me.
You can't break me becauseyou're not going to say anything
to me that I'm going to absorbbecause of what I said to myself
(23:51):
this morning and I can't changehow you feel about me.
But I know how I woke upfeeling about me and I know
exactly how I'm going to go tobed feeling about myself.
There's nothing that you cansay to me that's going to make
me feel any differently thanwhat I just said to myself this
morning.
And I start with me every singlemorning.
Whatever it is I'm going to sayto me, whatever I was moved to
say to me, is always somethingempowering that will lead me
(24:14):
closer to what my ultimate goalis, and that's balance, peace,
happy, healthy, thriving for meand everybody around me or
everybody that comes in contactwith me.
But it wasn't always that easyfor me.
No, I honestly had to dieunexpectedly for me to pick me
instead of saying, hey, I pickme, I needed to pick me, instead
of saying, hey guys, pick me, Ineeded to pick me.
And for I won't even sayunfortunately, fortunately, I
(24:38):
had to die and get life part two, the chance at life part two,
before the person that picked mewas me what's.
Speaker 2 (24:46):
What you're describing too, is an example of
like so many people have likethat fun response.
It's a survival response.
You don't want to be rejected,so you will.
People pleasing and that canreally be stemmed back to our
childhoods or early experiences.
But so much of when you sit andrecognize I would rather be
rejected by other people thanmyself, I would rather be well,
yeah, exactly.
Look myself in the mirror andsay I like myself, I like how I
(25:08):
move to the world, I like theintegrity that I have.
It really just like all theother noise around just reduces.
And then you do find thatpeople who respect I respect
people.
When someone tells me no, Irespect that because my brain's
a little bit like I know it'smore analytical.
So if someone says no, I'm like, hey, no.
When someone's a bit more,maybe, that I'm like do they
want to be here?
Are they just doing it becausethey feel bad, like I appreciate
(25:28):
when somebody, and when you'rearound somebody who's like a
hell yes or hell no, then youknow that they actually want to
be there or they actually wantto do the thing, and so that
feels good as well to be on thereceiving end or to be the
person in relationship with thatother person.
Speaker 1 (25:40):
You have mentioned reflecting on energy management
beyond the spoon theory.
What tools or frameworks do youuse to manage your energy from
day to day?
Speaker 2 (25:51):
Yeah, I think energy management is like more nuanced
and even for, like people withchronic illness, something
that's really helped me isreally I can almost look at like
energy management like a piechart, like broken up between so
like our physical, cognitive,energetic, emotional, and that I
know how long I can sit andwork on a computer before, like
cognitively, my brain, likemental fatigue, is gone, and so
(26:11):
if I do too much then I mighttake from other areas of my life
, like my ability to call afriend and talk to them.
But I kind of look ateverything's always shifting and
fluctuating and every day is anopportunity to really check in
and be like maybe normally I cansit for an hour without moving,
but maybe today it's like ahalf hour because I'm feeling
stiff, and so I think that itjust requires a lot of like
affecting with your body, butrecognizing that different
(26:34):
things take different amounts ofenergy and also different.
You might be able to go for awalk after working, but it may
be unable to have a conversation.
So there's different forms ofenergy and stuff, but
interesting to kind of navigate.
Speaker 1 (26:45):
Does that change when you're traveling?
Are there signals that younotice as you're moving around?
Speaker 2 (26:50):
Yeah, because energy is also impacted by our external
environment.
Right, some of us are a little,I wouldn't say a ton, but I do
get sensory overload sometimes,like noise and from clouds, and
so travel can definitely bereally loud depending on where
you're staying, what you'redoing or being around a lot of
people on buses or whatever.
Energy can be really drainingfor me.
So I think being aware of ourenergy it's not just internal,
(27:12):
it's also what's going on aroundus.
So being aware of how ourdifferent environments can
impact our energy for sure isreally important, which is why
I'm really really careful aboutscheduling.
I'm careful about always puttingin rest days as if it's like a
meeting, and being careful aboutlooking ahead and time blocking
for things.
Because of my brain a littleneurodiversity I will write
(27:32):
to-do lists that are like 50items long.
I'll just keep adding thingsand so having to be like what is
the one or two things I need toget done today, I get that done
.
Now what Do I have energy formore?
If I do, what is it so reallygoing step by step versus trying
to make a really massive plan,when your plan should be
bite-sized and then they shouldalso adopt?
Speaker 3 (27:52):
So can we talk a little bit about mental health
and mental health treatments?
You comfortable, yeah.
How has your mental healthissue shaped your approach to
seeking your care for chronicpain?
What has that been like?
Have you been treated kindly?
Have you like?
What has that been like for you?
Speaker 2 (28:10):
I always like to talk with people about this because
I think everyone's had theirexperiences unexpectedly when it
comes to mental health.
But I think that there's a lotof stigma around obviously
mental health, and I thinkparticularly it's gotten a
little bit better, maybe notnecessarily in how treatment
options, but just in how societyis viewing mental health now.
But I think like 15 years agoit was not the case, and so when
(28:30):
I was diagnosed, I wasdiagnosed with bipolar, which I
since now I'm going through aprocess of not that may not be
the right diagnosis, I don'tthink it was I was on so much
medication.
I think that was a time thatstill is a time where doctors
want there's an emphasis on likediagnosing and labeling, but
not necessarily on improvingquality of life.
And so there's so many yearsabout six years of my quality of
(28:51):
life was really really poor.
I was not getting better.
I was on so much medication,like seven medications and just
feeling lost who I was, andthere's so much stigma around
too, particularly with mooddisorders.
So I think that then when I wasgoing through fibromyalgia, I
just recognized this is anotherinvisible illness with a stigma.
There's where I don't want totry much of medications and
labeled and not actually.
(29:11):
I don't want to try much ofmedications and labeled and not
actually.
I don't want my quality of lifeto again suffer.
So it did change how Iapproached treatment.
I didn't realize how much itimpacted.
When I really started doingnervous system work I realized I
would feel so anxious talkingto doctors because of those
experiences of feeling like notheard or going in and be like I
have all these side effects andbe like, no, that's not a side
effect of the medication andit's like why am I losing all my
(29:31):
hair effects?
And be like, no, that's not aside effect of the medication
and it's like why am I losingall my hair?
Yeah, I think just feelingreally less with you for a while
and it can feel reallydisempowering you said something
that made me think.
Speaker 1 (29:38):
Now you said you're working on.
Maybe that wasn't the truediagnosis.
I've been in that situationbefore, so my question for you
would be medications.
What did that do to you?
Because if you are put on amedication for something like
bipolar and you don't havebipolar, it can actually make
you act bipolar.
So did you have that situationhappen?
Speaker 2 (29:59):
Yeah yeah.
I was getting so agitated thatat one point they put me on
antipsychotics.
I was on so many medicationsand I'm on anything now.
It's not that my mental health,it's something I'm still
continuing to work on.
But I have not had any manicepisodes or anything, which
makes me think that that wasnever really the proper
diagnosis.
I think that I was just reallydysregulated.
I also think it was ADHD, butwhatever it is, I know people
(30:22):
can have both.
The reality was the medicationswere not working and it was
every time going to the doctorand getting another one put on.
I just remember going to apsychiatrist and be like what is
our end game here?
What is the dose that we'regetting to?
And he just said I havepatients who are half your size
on much higher doses.
I have patients that are doubleyour size on lower doses.
We just try things.
I just was like I don't want toplay Russian roulette with my
(30:43):
life.
I would spend hours and timesand not even know the hours
would buy, like I would just sitbe at a computer and I would be
like didn't even know that whathad happened, things that were
really awful.
And then you start feelingreally bad about yourself,
because then you think thatpeople think that you're
incompetent or that you can'tarticulate your thoughts, or
that you, you know it's a huge.
It's a huge weight, I think, ahuge loss of confidence.
Speaker 1 (31:05):
I think I would say I don't think we talk enough
about how okay.
You go to talk to them and theythink maybe the diagnosis is
whatever it is they come up with, and they give you medication A
, and then you need to takemedication B because of the side
effects from medication A.
And then there's medication Cthat's added on because
(31:25):
medication A and B are causingsomething else.
And it goes on and on and on,and before you know it, you're
on 13 medications and feelinglike you're walking through fog,
but you still don't feel like areal person and we need to talk
about that.
Speaker 2 (31:39):
Yeah, yeah.
No, it's really scary.
I mean, you don't really knowwhat is the medication, what is
the illness and who is.
What is me?
What is the?
And?
The problem is, too, we have anegative connotation towards
mental illness or any sort ofillness, but that's just a part
of being human, a negativeconnotation towards mental
illness or any sort of illness,but that's just a part of being
human.
The problem for me was not thelabel.
The problem was I was notgetting better.
I want to be better.
I don't care what the label is,I want to feel better.
(31:59):
I was getting much worse, yeah.
Speaker 3 (32:01):
What advice do you have for fellow Spoonies about
advocating for themselves intheir care and navigation?
Speaker 2 (32:07):
I think the doctors are such a valuable wealth of
knowledge, but at the end of theday, it's your body and you
need to trust when something isoff and again, build a support
network of folks who can say areyou sure that's going to work
for you, are you sure that'sreally be partners in your
treatment, because it can bevery overwhelming to do it on
your own.
And if you're in a reallyvulnerable state and you're
alone at the doctor's office andthey're like, take this, you're
(32:28):
like, okay, I guess you'redesperate, right?
So I think having that supportsystem even bringing someone
with you to a doctor'sappointment, writing questions
down in advance and havingthings ready to go your medical
record is your medical record,so you should always ask for it.
You should always keep all ofyour blood work and everything.
I have a massive folder.
I keep all of it.
Yeah, you're the manager ofyour health and also to do that
(32:50):
too, I think like not todiminish.
Doctors have only 15 minuteswith patients.
It's a very short amount oftime.
So what can you do to also helpthem, to help you?
When I got diagnosed withfibromyalgia, I actually brought
in the diagnostic criteriabecause we were kind of like
doing around it.
I don't do every single likescope, scan, blood work.
You can imagine.
I brought the diagnosticcriteria to my doctor, she went
(33:12):
through with me and that's whenI finally got a diagnosis and
then got to see a rheumatologist.
Sometimes you do there's thingsyou need to do to kind of like
help your doctor, because theyare so overloaded with patients
that don't have a lot of time.
I agree.
Speaker 3 (33:25):
So what is one piece of advice you wish someone would
have given you at the beginningof your chronic illness journey
and managing your chronicillnesses?
Speaker 2 (33:34):
I would love to hear your thoughts too.
I think would be.
I was like very fixated on likeputting my chronic illness into
like remission and like reallyrigid about it.
I spent a lot of time on likemessage boards and like looking
in different like support groupsthat I was just so anxious that
I was gonna get worse and worseand worse, and the only option
was to get worse and worse andworse.
And the only option was to getworse and worse and worse or be
(33:55):
completely healed, and there wasno in between.
And I think that, like when wefocus on like what, what should
be, we we kind of lose sight ofwhat could be.
And so there's so manybeautiful things that come into
my life because of likeexperiencing chronic illness and
, uh, change is inevitableeveryone.
If you live long enough, youwill have health problems.
You will experience personaland professional setbacks.
(34:15):
It is how you navigate them.
I think I just saw what I wasexperiencing.
This is like the end.
You are never going to be funagain.
No one will want to be aroundyou.
You're just going to get sickerand sicker and really it's like
this is an obstacle and maybeit's going to result in things
being different forever, inthings being different forever,
but maybe that different isn'tnecessarily completely bad.
Maybe there's otheropportunities in beauty that I
can find Love that.
Speaker 3 (34:36):
I love everything about what you just said.
I was also her, I was the.
I just needed to go intoremission and I was in all the
message boards and on the faddiets and they said this would
work and all the things.
And I would be so frustratedwith myself because it wasn't
the miracle, because it didn'twork, because I still had all
(34:56):
the things and I still felt like.
I felt.
I realized that when I waskinder to me and I started
celebrating the things that mybody could still do and even
though they looked differently,I was doing the things.
When I started to just love onAndy, in that way, I was able to
do more things and, although itlooked different, I was able to
do them.
(35:16):
So what's next for your journeyas a slow traveling nomad and a
super advocate?
Speaker 2 (35:23):
Yeah, I think I'm going with the flow.
I want to live my lifeauthentically and intentionally
and see where it takes me andfeeling really grateful for
every day and opportunity that Iget to have to experience the
world.
But in terms of chronic illness, I'm super passionate if it
hasn't come out in thisconversation yet about nervous
system regulation and want toshare this.
Education can help with ourregulation and want to share
this knowledge with everybody.
So I really see doing more ofthat.
(35:44):
Hopefully, if other people Ithink just more stories you hear
of other people navigatingchronic illness and doing it the
wrong way.
You see there's lots ofdifferent ways to do it.
There's no right or wrong wayand if other people feel
empowered to be like I can livemy life in an interesting way.
This isn't over for me.
I think that that would bereally.
I'd love for other people justto feel.
I followed somebody who, backon Instagram, was like not even
videos, yet I followed somebodywho was like posting their
(36:06):
photos of doing yoga withchronic fibromyalgia and every
day and every week how theyimproved.
I still think about it eightyears later how much that helped
me to see somebody trying andmaking improvements, no matter
how long it took.
I think that's really valuablefor people to see.
Speaker 3 (36:19):
Where can people connect with you?
Speaker 2 (36:21):
I'm trying to get off of all the social media.
So right now I'm on SubstackCosmic Beat it's called and then
my website and I write onMedium.
So I'm trying to do long formbecause I find social media
really too stimulating on medium.
Speaker 1 (36:33):
So I'm trying to do long form because I find social
media really too stimulating.
Speaker 3 (36:36):
Yes, Caitlin, you're a whole vibe and I just want to
pack a backpack and travel withyou Like you're a whole vibe,
All of your energy just givescalm and peace, and this was
thank you for one wanting to sitdown and redo the conversation
with us.
Thank you for being open tothat and thank you for spending
(36:57):
the time with us.
I've learned a lot and I just Ijust feel calm with you.
So if nobody tells you thattoday or ever, just know that
you have a very calming presenceand I am very grateful that I
got to spend an hour in thatcalming presence.
Speaker 1 (37:09):
That's very sweet, thank you, I agree.
I almost feel like I've beensitting here listening to spa
music or something.
I want to kick back in my chairand close my eyes.
Now I don't know what it is,but listening to the two of you,
I'm quite relaxed.
I might have needed that afteryesterday.
Speaker 3 (37:23):
Well, good.
Speaker 1 (37:24):
So I appreciate both of you and the time I was loving
connecting with you both.
Speaker 2 (37:28):
And yeah, if you're ever in Colombia or feel like
traveling, let me know, goaround, and I'm always open for
travel buddies.
Heck, yeah.
Speaker 1 (37:35):
Heck, yeah, listeners , until next time.
Don't forget your spoon.
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