May 26, 2025 • 39 mins
TW talks of disordered eating in this episode !!
Welcome to Chronically The Sickest - the sickest podcast you know.
On today’s episode I’m joined by fitness coach, Izzy. We get into deconditioning, comorbid Ehlers Danlos and navigating a childhood diagnosis.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:04):
Hello folks, and welcome to Chronically the Sickest, the
podcast where we talk about all things that make us chronically
the sickest people we know. I'm Clark, your host.
It's nice to chat with you this week.
Join us as we dive into the episode, sit back, relax, and
enjoy the show. Hello Izzy, and welcome to
(00:33):
Chronically the Sickest. How are you?
I'm good. Thank you for having me.
I am very pumped for this episode 'cause I feel like it's
gonna be a little bit of everything.
But for the listeners at home who don't know who you are, tell
me a little bit about yourself. OK, so I am based in Boston.
(00:53):
I am currently getting my masters in nutrition and I have
done a ton of research and all this research has stemmed from
my chronic illness ready and my desire to want to learn more and
to be able to be at the forefront of helping other
people with chronic illnesses. And so that is my mission in
life is to help other people with chronic illnesses, to tell
(01:16):
people my journey because it wasnot an easier fun one.
And yeah, I wanna show people with chronic illnesses that
there is so much more to life than what people think that
we're able to do right. Like there is so much more than
being a statistic right of oh, like I have XYZ.
Like that doesn't mean that you can't do other things in life
(01:38):
that will make you happy or that, you know, just because
someone says you can't do it does mean that you actually
can't do it. There are ways to do it.
Heck yeah. Oh my gosh, what a great way to
start off this episode. Yeah, I absolutely agree.
It's, it's definitely something that I think a lot of people
with chronic illness struggle with is realizing that yes, your
(01:59):
life is different, but that doesn't mean that it's bad.
Exactly. OK.
Well, thank you for letting us get to know you a little bit.
I do wanna ask you the the question that I always ask,
which is what do you think makesyou chronically the sickest
person you know? That's a great question.
(02:20):
I think it has to do with I definitely always have symptoms
at the forefront of my mind whenit comes to or like the fact
that I can get injured quickly at the forefront of my mind
before I do anything, right. So it's like when people are
like, hey, do you want to go, I don't know, ice skating?
I'm like, you know, I don't knowif I should do that.
(02:44):
My, my ankles are pretty hyper mobile.
I don't know if I should do that.
Or like, you know, going to playsoccer, same thing.
It's like, oh, like that's a, an, a sport that I can really
get injured in. Or it's like the fact that I
still blow after every single time I eat and it's like, OK,
like I have to know what I'm eating too.
(03:05):
So things like that. OK, that's pretty.
I think it's, I think it's like always remembering that there's
going to be a symptom after everything you do versus like, I
think people without chronic illnesses, they just kind of
live life and they're like, hellyeah.
Like, let's just do whatever I want.
(03:25):
Or for me, it's like, OK, like Ineed to remember that sometimes
I can put myself at higher risk of getting injured, and I just
need to put that, keep that in my mind, right?
Yes, Yeah. OK, OK.
I like that. Very sick.
It's sick that you're sick. Like that's the that's the
(03:48):
answer. OK, amazing.
Well, I'd love to ask a little bit about your diagnosis journey
because I know you like most of us have multiple diagnosis.
So tell me, tell me all about it.
Yeah. OK, So where do I start?
I guess symptoms started all over the place for different
(04:10):
things. So I guess the first thing that
really presented itself was Bertolotti syndrome, which is
essentially where my L5 and my S1 vertebras are connected.
So you can think of it as like, I have two extra bones in my
back. I guess you can think of it as
yeah. And that actually causes quite a
bit of pain, especially when they're not fully fused.
(04:31):
So when they're in the process of fusing like that can cause
extreme pain and like stiffness in the lower back.
So I remember as a like a 5 yearold having a PET scan and Mr. is
because I was in so much pain asa little child.
And then, you know, it's funny because I always considered it
my party trick, but as I grew a little bit older, my hip would
(04:54):
be able to pop out and I'd be like, oh, like I'd lean on the
counter and then my hip would just pop out and I'd be like,
oh, that's cool. Like, whatever.
And then that was like one of the first signs of hypermobile
earlob download syndrome. As a kid.
I was able to do the splits. Like there's definitely some
hypermobility that runs in the family.
(05:14):
And then it really all hit and started in 7th grade because out
of nowhere, I started with like,really bad joint pain.
I started with really bad GI symptoms.
I started fainting. It was it was scary, very scary.
And it like got to the point where I couldn't even put like a
(05:37):
sling backpack on like the really light like just literally
like doesn't even weigh a pound with just like my phone in it.
And that would bring extreme pain to my shoulders.
And then I had really bad knee pain so that I like, couldn't
walk upstairs anymore. And it would be like every three
steps I would have to take a break 'cause I was in so much
(05:58):
pain. And that was really hard in
middle school and in high school'cause there was multiple like,
levels of the school. So like during those 10 minutes
between classes where you're like having to rush and it's a
big, like building, you know, there's people, like, pushing
past you on the stairs and you're like, guys, this really
hurts. Hold on.
And like, no one understands. Yeah.
(06:21):
And I remember, like, falling into the tub.
Like, I would get up to go to the bathroom and then I
literally fall into the tub because I, like, fainted.
Yeah. So it was like a lot of
different symptoms that started.And it was hard because in the
beginning, no one really believed me.
It was it was more of like a push past it, right.
(06:42):
Like, it's fine. Just a little bit of pain, like
you're growing, things like that.
At the time, I was a competitivehorseback rider too.
And I like horseback riding is one of those sports where it's
like you are bound to fall off of the horse.
You get back up and you get backon the horse and you like keep
going. And so I really grew up with
(07:02):
that mentality where it was like, OK, like you fall down or
like something hurts, doesn't matter.
You keep going, right? Because you're supposed to just
push, push, push, right? And so I had to really advocate
for myself and be like, listen, something's not right.
Like I can keep pushing. Like I am mentally very strong
and I can keep pushing, but I know I shouldn't because my body
(07:25):
is really yelling at me that something's wrong, right?
It's not normal to have like tachycardia episodes.
So that's like when your heart'slike beating really fast out of
nowhere, It's like not normal tofaint out of nowhere.
It's not normal to not be able to walk upstairs as like a what,
13 year old, like things like that.
And then it got to the point where I couldn't horseback ride
(07:46):
anymore. Keep in mind during this time,
this is like the hard part is that in 7th grade, everything
started together and I really felt like I had no control of my
life at all. Because Bertolotti syndrome for
me, it comes in waves. So I will have like a year, like
(08:08):
a couple months a year where I'min horrendous pain and like I
will get stuck bent over becauseof the sharp pain.
Things like that. Like driving in the car is
really hard because of like the the brakes, whenever you hit the
brakes, like that motion really hurts too.
Yeah. So it got to the point in 7th
(08:30):
grade where everything started together.
So the Bertolotti syndrome started acting up, the GI
symptoms started acting up, the joint pain, the the cardiac and
dishonomic symptoms started acting up.
And I was like what is going on?Like my body is crashing on me
(08:50):
and it was hard because I also grew up in a family where it was
very much like I keep pushing mentality.
And so it took a while for even my family to believe that I was
really dealing with all these things.
And then it got to the point where I would like break down
and be like, I can't keep doing this.
Like something is really wrong. And then my mom finally started
to blame me. And that's when we started all
(09:11):
our whole I say hour because my mom came with me to all my
doctor's appointments. She was my best friend during
this time. Yeah.
When on all these doctors trips I've seen at the time, I saw
like more than 15 doctors for GIand cardiology, rheumatology,
(09:31):
orthopedics, like autonomic specialists, like so many
doctors. Yeah.
And I finally after two years was diagnosed with, well, first
I was referred to two geneticists finally, because one
(09:51):
of the things that I hate about our healthcare system in the
United States, but especially like even abroad, it's like this
too, is that everyone is so individual, but really like the
body is connected, right? Everything is connected.
So why are you telling me to just see one specialist when I'm
having like symptoms all over the place and then referring me
to someone else? But then when you refer me, it's
(10:13):
like a three month wait. So then it's like so many things
could happen in those three months before I see that
specialist. And you know, it's like it's
very disconnected way of approaching health.
I was. Just going to say that I, I
completely agree with you. It's like it's so disorganized
and like none of the doctors arereally talking to each other.
So you're going to all these specialists about all these
(10:34):
separate symptoms when in reality, like you said, it's all
in one body. Right, exactly so.
This is your friendly reminder that you are listening to this
for free, learning about chronicillness, mental health, and
other important topics for free.But this does cost time and
(10:55):
money to make, and you could be getting a lot more.
Click the Patreon link in the description to get access to
video episodes, free merch, and bonus interviews where we may
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And did I mention that there's no ads?
Not only do you get these very cool things, but you can also
(11:17):
support the pod because like I said, you're listening for free.
Give me a dollar and I will giveyou lots of cool stuff in
return. That's my pitch, anyway.
Yeah, so clearly everything was connected, but no doctor was
(11:38):
realizing that it was all connected, right?
They were treating it all like it was separate.
But eventually one of my doctorswas like, yeah, this doesn't
seem right. So they referred me to a
geneticist. I got genetic testing.
For those that don't know, hypermobile aerial download
syndrome is the only one that doesn't currently have a genetic
(11:58):
marker that's associated with it.
And like there is research goingon to try and find it and there
are some leads, but it's still not definite which one it is.
And at the time there was no genetic marker that was
associated with it. So they were like, you clearly
have a connective tissue disorder.
You clearly have all the the bite and score markers that
(12:21):
indicate that you have hypermobile air load download
syndrome. And by the way, like
dysautonomia is one of the like comorbidities that comes with
HDS and that like makes sense for like your tachycardia and
your fainting episodes etcetera.And so eventually I was also
diagnosed with POTS as well as orthostatic intolerance.
(12:44):
And they kind of fluctuate in terms of which one's acting up.
And then, yeah, I was like, great, I have a diagnosis.
But So what, Like it's a label now, right?
But I guess like, what do I, what do I do now?
Like I clearly am at the point where I am at the time.
(13:07):
I think when I was diagnosed, I was 15.
I'm a 15 year old girl who is struggling with all these
symptoms who should be at her most social point in her life,
right? Who wants to hide from everyone?
And that was really hard becauseI felt like I had to say no to a
lot of social events. I felt like I didn't want to eat
(13:29):
in front of anyone because yeah,although like joint pain was
really bad for me and all of thelike subluxations cause like my
shoulders, both my shoulders subluxed and both my hips
subluxed. The thing that was actually the
worst were the GI symptoms for me because they were visible,
right? Like it's super easy, at least
for me to be able to deal with stuff that people can't see and
(13:50):
then mentally just be able to like work through it, if that
makes sense. But like bloating and dissension
is very visible to other people.And so it got to the point where
I like will say no to any food events.
I saw a ton of GI doctors and like the first ones I saw told
(14:12):
me that it was in my head or that like there was nothing
wrong with me. Or one of them literally put me
on a an antibiotic and then never got back to us.
Like 2 months. My mom and I both called
multiple times to the office andthen he never got back to us.
Yeah. So it was very, very hard as a
(14:33):
young female who also like high school and middle school are
times where, and I mean this in the nicest way, but people are
idiots. They're mean.
And like, people are mean. Yeah, exactly.
And so it's, it's one of those things where you get bloated and
people like, we'll point it out,right?
And they don't really like notice that, you know, maybe
someone's going through something because medical
(14:54):
conditions are never really at the forefront of people's minds.
I feel like nowadays, like, unless you're going through
something, it's not something that you're going to be like,
oh, well, maybe she's dealing with something, right?
Or like maybe she ate something that upset her stomach.
It's more like, oh, like she hasgained weight, right?
And it's like it's really frustrating to be young and
dealing with GI symptoms when noone else around you understands.
(15:19):
And it got to the point where I eventually was diagnosed with
RFID. So for RFID stands for avoidant
restrictive food intake disorder.
And so I was avoiding food because I was scared of the
symptoms that would come from eating food.
So I had like the presentation fear of aversive consequences
(15:40):
'cause there's different presentations of RFID and then
that after more doctor's appointments and feeling
dismissed and like not helped spiraled into anorexia nervosa.
And so that was really hard because for me, the anorexia,
well, the ARPIID first and then the anorexia really stems from I
(16:02):
have no control over this. Like, I am trying my best to get
through this and people are being mean, people in society
who are have like the highest degree, right, are literally
being so dismissive and like, ithurts.
And I'm still dealing with thesesymptoms every day and I don't
(16:26):
know what to do about it, right?And so I turned to food because,
you know, food is something thatis very personal to all of us.
And I started to control food. And then I thought to myself,
you know, maybe if I started eating less, like maybe the
bloating would be less, right? So that's how the anorexia like
spiraled, but the stomach is a muscle.
(16:49):
And so if you're not working that muscle, it'll start to, you
know, atrophy. It won't work as well.
And so the bloating really didn't change.
But I still convinced myself that I would fix it by not
eating as much. But you know, eventually you
come to realize that's not gonnawork and you have to unlearn all
(17:15):
these patterns that you convinced yourself were right,
even though they're not. And you work through the
anorexia on top of the Bertolatisyndrome and the the hypermobile
Irlo Danlos syndrome and the dyspneomia.
And so my like key developmentalyears were really, really
(17:35):
pivotal and influenced who I am now.
And the thing that really like saved me, I would say is my love
for strength training, which I found because I, well, I was a
competitive horse act rider, like I said.
And then I had to stop because my body literally said you can't
(17:56):
do this. And so I was told to go to
physical therapy and I went to physical therapy and that
physical therapist, well, keep in mind that this was like, I've
already been to physical therapylike more than seven times in my
life, OK? This was like, yeah, this was
like, it was one of those things, you know, when you go
(18:18):
through something so many times and you're like, oh, here we go
again. But he really changed my life.
His name was way, I can say that.
And he actually was the first person to help me with my back
issues and with understanding like strength training and
(18:39):
understanding the like mechanicsof the body and understanding my
hypermobility too. And so that was one of the best
experiences that I've ever had in the healthcare system was
with Whey. And from there I picked up
strength training more seriouslyand I started to get better.
(19:00):
And it was honestly I, and I full heartedly say this like
strength training is the thing that saved me both physically
and mentally because I mentally got to the point where I like
did not want to do life anymore.I was like, this sucks.
And then I also got to the pointwhere I was super depressed,
(19:24):
like really bad anxiety just cause of all the symptoms I was
dealing with. And God bless my mother.
But she, I told her like she would pick me up from school
everyday and I would tell her, you have to drive me to the gym.
Like even if I don't want to, you have to drive me to the gym
because I need like I the 1015 minutes after lifting that I
(19:46):
would get of the endorphins was like the one thing that got me
out of a depressive state and like actually made me feel and
actually made me feel like I could keep going in life, you
know. And so I.
Would go to the gym five days a week, I would do my lift, it was
like 30-40 minutes and then she'd pick me up, I'd be happy.
(20:08):
And then we would just kind of cycle that again and again.
And honestly, that's the thing that really, I know this is like
a controversial topic, but I waslifting while I was recovering
from anorexia, but I was also working with a dietitian at the
time to like make sure I was eating enough and like making
(20:29):
sure I was, you know, not spiraling backwards or using
exercises like. Right, like supporting your.
Body through it. Exactly.
And so I would actually say thatthe lifting also really helped
me with my eating disorder because you're only going to
gain muscle if you're fueling your body enough.
(20:50):
So I was like, OK, like I need to eat because I have these
goals that I want to achieve through lifting.
I want to get stronger. I want to be able to hit like an
XYZ number for my squat or for my deadlift, things like that.
And I was like, OK, like this isgoing to help me achieve my
goals, right? So like, I need to eat.
I need to get better that way, right?
(21:11):
And so I slowly started to recover from anorexia also.
And I, I would say the gym honestly saved me too in that
way, because I was doing it for me.
I was recovering for me and for my future, right?
But I was also trying to achievegoals that were very separate
that took me like out of my chronic illness mind, right?
(21:34):
Because I kind of separated likethe gym me from the, the chronic
illness me, if that makes sense,'cause I was like, when I'm in
the gym, I'm invincible, right? Like I can do anything.
I'm super strong. I'm superwoman.
Like chronic illness, like doesn't exist, right?
And so, yeah, like I had to takethings slow when it came to
(21:55):
lifting, obviously, but it stillmade me feel really empowered.
Yeah. And so solely I started to get
stronger. I solely have had less
subluxations throughout my time through lifting, through getting
stronger because you need muscleto be able to support your like
(22:17):
hypermobility in your joints. That's happening, right?
Something needs to support that,Yeah.
And then I also have, so I slowly started to integrate
cardio also because for dysautonomia, think of it this
way, like your heart is a muscle, right?
If you're not training it to withstand those high jumps in
(22:41):
the heart rate, like it's gonna be harder to withstand those
high jumps in heart rate 'cause it's gonna get scary how high
the heart can get. And so I started to train cardio
through like on the bike I used.I did, I only did cardio on the
bike for years because it's low impact, right?
And it's safe 'cause you're seated.
(23:02):
I was gonna say yeah. And so, yeah.
And so that's what I did for years.
I slowly built up my tolerance. And now I'm at the point.
And this is a whole journey too.Now I'm at the point years later
where I am running and I am running marathons.
(23:22):
And it was a dream that I never thought I would be able to
achieve because when I first started my running journey, this
was in high school. So I ended up switching high
schools in high school because people were mean in my first
high school and I was like, I need a place where I feel
(23:45):
accepted while I am going through all of this.
And that school required you to be part of a sport.
And so I joined the cross country team and I had never
really been a runner ever beforejoining the team, but I ended up
being the fastest girl on the team my first year and then like
third fastest my second year. I was captain of the cross
(24:08):
country team my senior year of high school.
And that was like one of the best experiences.
And honestly, like I owe it to my coach cuz she was so
accepting, so loving. And honestly, like I felt like
she was one of my like a second mom to me just because I felt
like she really heard me and understood what I was going
through and like gave me the space to be the best athlete
that I could be in the way that I needed to be able to do it
(24:30):
right. So I would only run twice a week
and then we would have a, a meet.
So like a competition, a race onthe weekends.
And then all those other days I would just cross train by
lifting and by going on the biketo still build my aerobic base.
And that's how I was started my running journey.
(24:53):
And then in college, I, so I went to school in for undergrad
in the Boston area and I just loved that there were so many
schools that I could go to in the area.
So I would like make it a goal of mine to then go like to that
other school and just like explore.
(25:16):
And then I slowly started getting into distance running.
I know distance running is a different term for everyone, but
in high school you don't really run more than 3 miles like the
race is. So I was cross country, not
track. So it was a 5K so which is 3.1
miles is like the longest that you would run.
And then in college I was like, OK, let's see if I can do like a
(25:38):
Six Mile. Let's see if I can do like more
than that. And at first it was really
painful for the joints. And like, that's why I could
only run a few times in, per week in high school was because
like my ankle hypermobility is crazy and staying with my knees.
And so like my, my body was justnot prepared to withstand that
(26:01):
kind of impact at the time. So I had to really modify.
But I, as I kept getting stronger, I got to the point
where I could start running distance and I would have a lot
of joint pain after, but it was something that I knew how to
take care of, right. And then I got to the point
where I am now, which is well, actually, I'll take a step back.
In 2023, I ran the Boston Marathon.
(26:24):
That was my first marathon and I, that was so incredibly
special to me because I am not originally from Massachusetts or
from Boston, but I consider myself a Bostonian now purely
because I feel like I found myself in Boston in so many
ways, right? Like it was the point in my
chronic illness journey where I felt like I was no longer like
(26:48):
completely controlled by my chronic illness.
It was where I started doing really incredible research with
like a top research group in theBoston area.
And I fell in love with research.
And like, that is my, my long term career goal.
And I fell in love with the school that I was going to and I
(27:09):
felt really accepted and loved. And it just, you know, when like
a place like just makes you feelincredibly happy.
That was Boston for me, and it still is.
So for anyone listening who's from Boston, hi, maybe we can
meet up. But yeah, so that is I ran
(27:33):
Boston as a thank you to Boston essentially because I like, I, I
owed a thing. I like I, I felt like I owed a
thank you to Boston for everything that they had given
me. And then from there, when I
finished that, I, I told myself I would never run a marathon
again because it was so painful.But then I got stronger and over
(27:58):
the course of about a year and Ikind of on a whim signed up for
the Chicago Marathon. And I did that in October of
2024. And I PR Ed by 15 minutes and I
was like, I felt so good after it.
So then I was like, OK, like maybe this isn't as bad as I
remember it from Boston. Like clearly I feel OK after
Chicago. And so I will be running the
(28:21):
London Marathon in April and then the Berlin Marathon in
September. So I'm super excited.
That's very exciting. Oh my gosh, a marathon runner we
love. Yeah, and I can't believe I'm
saying that I'm a marathon runner.
I, I statistically should not berunning marathons.
(28:42):
But I've done a ton of work and it's taken me years, but I did
the work, not only physically, but mentally to be able to get
myself to where I am now, right?Because I think it's really easy
to see all these symptoms and say that you are the symptom and
then you got to diagnose and yousay that you are the diagnosis,
right? And then you start limiting
(29:02):
yourself because one, it's really frustrating that no one
else understands you around you,right?
But two, it's like you are with your body every single second of
every single day. It is so easy to get like
wrapped up in all these symptomsthat are constantly consuming
you right and yelling at you. And it's, it can be hard to kind
(29:26):
of detach yourself from those symptoms and be like, OK, you
know what, like I am feeling these symptoms, but how can I
refocus my mind to be engaged and like what I want to do
rather than what like my symptoms are telling me I can't
do? And I think it takes a lot, a
lot of time to be able to kind of do that rewiring in the
brain. But for anyone who's dealing
(29:48):
with chronic illnesses, I I ask that you maybe do some
reflecting on what you want to do rather than what your chronic
illness is telling you that you can or cannot do, and make a
plan to slowly work towards those goals.
Because it is so important to have goals that you work
towards. And that you, I don't know if I
(30:08):
can curse, but I will be nice. I'll just say like F you to your
chronic illnesses sometimes because yeah, that's that's
honestly what you have to do. Heck yeah, yeah.
And you have kind of like created this business model of
coaching other other spoonies, other people with chronic
(30:29):
illnesses. And so this is kind of the point
in the podcast where I would askyou for maybe your tips and
tricks, but I feel like you've both already shared them and
also can share some of them by telling us a little bit about
your business and how how that works.
So so chat with me about that. Yeah.
So I founded Steps to Perseverance, which is an online
(30:53):
exercise or movement, nutrition and mindset coaching platforms
specifically for people with chronic illnesses of any kind.
And I founded this because I think it is so important to be
able to get stronger, not only physically but mentally, and to
also fuel your body with proper nutrition to be able to not only
(31:16):
withstand everything that chronic illness is throwing at
you, but also everything that life without chronic illness
also throws at you, right? And I think it's hard because we
are constantly being thrown so much information on social
media, a lot of it which is not correct, honestly, if you look
at the signs. And so I am trying to be someone
(31:37):
who is not only a coach, but honestly a best friend for
people with chronic illnesses. And to literally hold your hand
throughout this journey that we're gonna go on together,
which is like finding movement that you not only that you
enjoy, but that you're gonna getstronger at throughout time so
that your symptoms are slowly going to decrease, right?
(31:58):
And that like I focus a lot on people with chronic pain
disorders or like hypermobility disorders or connective tissue
disorders and a dysautonomia because I know that so, so well.
And so we do that. We also work on nutrition and so
I know a lot of people have eating disorder backgrounds or
(32:19):
disordered eating because of thejourneys that they've been on.
And so I do a very not number approach to nutrition.
It is very much like a how do you feel in your body?
Like how do we make a plate? Like how do we take knowledge,
right, that is scientifically based and backed up and use it
(32:39):
so that you can go on for the rest of your life knowing this
knowledge, right? Like the goal is not that you
need me forever. The goal is that you have me so
that I can give you all this knowledge so that you then go
off into life being a badass, strong chronic illness warrior
who can say, you know, F you to my chronic illnesses because I
have these goals that I'm going to go chase and I'm going to do
(33:00):
them even if my chronic illness says that I can't, like I slowly
will be able to do it. And so that is who I am as a
coach. But I would also say that a lot
of the stuff that we work on is also mindset.
And so I, you know, have seen not only through personal
experience, but with my clients that there's a lot of I can't do
(33:21):
that. Or what if this happens or, you
know, all these like limiting beliefs that we put on
ourselves, right? Because of prior experiences
that we've had with our chronic illness or because of fear that
we have, right? But my, my biggest thing is let
fear guide you. I think that when you're scared
of something, you will automatically try to avoid it to
(33:43):
protect yourself, right? But really fear is something
that you should lean into. Because when you lean into fear,
that's when you're going to grow, right?
Like when you do the thing that scares you, that's when you grow
the most. And so it's really scary, but
empowering after you do the thing that scares you and you do
it over and over and over again to the point where then you're
(34:03):
not scared of it anymore, right?And I think that that really,
really is strong or like, is powerful for people with chronic
illnesses because slowly our lives get taken away from us
when we have chronic illnesses, right?
Like slowly our chronic illness says, you're not allowed to do
that or that's going to give youa symptom.
And then you start getting scared of so many things in life
(34:25):
that people that don't have chronic illnesses are like,
yeah, but who? That's so easy.
And then we're over here being like, I don't know about that,
but yeah. So it's like slowly tackling
those things that we now have a fear of, right?
And slowly reclaiming our lives,honestly.
Because one of the things that Ilove to say is that baby steps
(34:47):
lead to massive leaps with chronic illness.
I can't or you can't just say I'm gonna do XYZ and then just
go ahead and do it right? Because you slowly have to kind
of trick your chronic illness into doing what you want it to
do. And so the best way of doing
that is by taking a ton of tiny little baby steps, working
(35:07):
towards your goal. So that you kind of trick your
chronic illness and you're, you kind of kind of like, what's the
word not make it realize that you're actually working towards
what you want rather than what the chronic illness wants, if
that makes sense. And then eventually you'll make
massive leaps. And that's how I honestly got to
where I am today is by taking a ton of those tiny, tiny little
(35:30):
baby steps, right? And that doesn't mean that
progress is always linear. You know, I think in anything in
life, you're going to have setbacks, right?
Something's going to happen, you're going to have to pause,
etcetera. But you know, it's way easier
going through those setbacks or going on this journey when you
have someone to hold your hand and guide you and give you the
next steps, those tiny little baby steps instead of going on
(35:51):
this journey alone. And that's who I am.
That's why I'm a chronic illnesswarrior coach and that's why I
do what I do. And honestly, it's been some of
the I've had like happy tears with some of my clients because
of the progress that they've had.
And like I had one client who like used to not be able to walk
(36:12):
upstairs and who had really, really bad pain who could never
work out at all. And like, we've figured out a
way for her now. She's like dancing upright and
she's, yeah, she's walking up stairs.
She's doing like 10K steps a daynow on her own without me even
telling her to. And she's like, look what I'm
(36:32):
doing. I'm like, Oh my God.
Like I am so, so proud of them for, for all of their progress.
And so it's progress like that. And like seeing those little
little baby steps add up for thepeople that I'm helping.
That has been so incredible. And I want more people to to
(36:53):
honestly start their journeys and to take the leap.
And I know it's not easy and I know it's scary, but honestly,
like the progress that you will have through it is incredible.
And so, yeah. OK, love what you just said and
I I completely agree. It really is the baby steps that
get you to where you want to go.And I'm, I'm so glad that you
(37:15):
are here to help guide people and like you said, hold their
hand through this because when you are doing it alone, it's so
easy to have a set back and justbe like, I guess I can't do it.
Like I, I, I give up like this flare is too bad or I'm just
having a rough mental health day.
(37:36):
I can't do it. But instead to have someone be
like, no, you can, like, let's find something you can do is
amazing. So thank you for being that
person. It sounds like you're you're
really helping this community. Thank you, that means a lot.
Well, for the listeners who would like to maybe be coached
(37:56):
by you or at least look into what you're doing and chat,
where can they find you? Yeah, so I have an Instagram
called Steps to Persevere and Stop Fit.
Come follow me, come chat. Let's let's work together.
Let's just talk and see how everything is going.
Yay, I love that. OK, well Izzy, I really loved
(38:21):
having you on the podcast. I feel like I personally have
learned a lot and you're really inspiring me to maybe do a
little more on my own fitness journey.
So I. Love that.
Well, again, thank you listeners.
That is all we have for you today.
Otherwise, I'm Clark, this is Izzy, and this has been
(38:43):
chronically the sickest podcast you know.
That's all folks. Thank you so much for listening.
If you liked this episode, clickthat follow up button on your
podcast app of choice to get notified every other week.
You can find the podcast on Instagram and TikTok at
(39:04):
Chronically the Sickest Podcast.Let me know if you have any
questions or just want to chat. I love hearing from y'all.
Until next time, I'm Clark, and this has been Chronically the
Sickest podcast you know. Disclaimer, this is a
conversational podcast and whilewe make sure our diagnosis
(39:25):
journey, symptoms and treatment plan, this is not medical
advice. If you have any questions
regarding your health, please reach out to your doctor and
have a great day.
Hello folks, and welcome to Chronically the Sickest, the
podcast where we talk about all things that make us chronically
the sickest people we know. I'm Clark, your host.
It's nice to chat with you this week.
Join us as we dive into the episode, sit back, relax, and
enjoy the show. Hello Izzy, and welcome to
(00:33):
Chronically the Sickest. How are you?
I'm good. Thank you for having me.
I am very pumped for this episode 'cause I feel like it's
gonna be a little bit of everything.
But for the listeners at home who don't know who you are, tell
me a little bit about yourself. OK, so I am based in Boston.
(00:53):
I am currently getting my masters in nutrition and I have
done a ton of research and all this research has stemmed from
my chronic illness ready and my desire to want to learn more and
to be able to be at the forefront of helping other
people with chronic illnesses. And so that is my mission in
life is to help other people with chronic illnesses, to tell
(01:16):
people my journey because it wasnot an easier fun one.
And yeah, I wanna show people with chronic illnesses that
there is so much more to life than what people think that
we're able to do right. Like there is so much more than
being a statistic right of oh, like I have XYZ.
Like that doesn't mean that you can't do other things in life
(01:38):
that will make you happy or that, you know, just because
someone says you can't do it does mean that you actually
can't do it. There are ways to do it.
Heck yeah. Oh my gosh, what a great way to
start off this episode. Yeah, I absolutely agree.
It's, it's definitely something that I think a lot of people
with chronic illness struggle with is realizing that yes, your
(01:59):
life is different, but that doesn't mean that it's bad.
Exactly. OK.
Well, thank you for letting us get to know you a little bit.
I do wanna ask you the the question that I always ask,
which is what do you think makesyou chronically the sickest
person you know? That's a great question.
(02:20):
I think it has to do with I definitely always have symptoms
at the forefront of my mind whenit comes to or like the fact
that I can get injured quickly at the forefront of my mind
before I do anything, right. So it's like when people are
like, hey, do you want to go, I don't know, ice skating?
I'm like, you know, I don't knowif I should do that.
(02:44):
My, my ankles are pretty hyper mobile.
I don't know if I should do that.
Or like, you know, going to playsoccer, same thing.
It's like, oh, like that's a, an, a sport that I can really
get injured in. Or it's like the fact that I
still blow after every single time I eat and it's like, OK,
like I have to know what I'm eating too.
(03:05):
So things like that. OK, that's pretty.
I think it's, I think it's like always remembering that there's
going to be a symptom after everything you do versus like, I
think people without chronic illnesses, they just kind of
live life and they're like, hellyeah.
Like, let's just do whatever I want.
(03:25):
Or for me, it's like, OK, like Ineed to remember that sometimes
I can put myself at higher risk of getting injured, and I just
need to put that, keep that in my mind, right?
Yes, Yeah. OK, OK.
I like that. Very sick.
It's sick that you're sick. Like that's the that's the
(03:48):
answer. OK, amazing.
Well, I'd love to ask a little bit about your diagnosis journey
because I know you like most of us have multiple diagnosis.
So tell me, tell me all about it.
Yeah. OK, So where do I start?
I guess symptoms started all over the place for different
(04:10):
things. So I guess the first thing that
really presented itself was Bertolotti syndrome, which is
essentially where my L5 and my S1 vertebras are connected.
So you can think of it as like, I have two extra bones in my
back. I guess you can think of it as
yeah. And that actually causes quite a
bit of pain, especially when they're not fully fused.
(04:31):
So when they're in the process of fusing like that can cause
extreme pain and like stiffness in the lower back.
So I remember as a like a 5 yearold having a PET scan and Mr. is
because I was in so much pain asa little child.
And then, you know, it's funny because I always considered it
my party trick, but as I grew a little bit older, my hip would
(04:54):
be able to pop out and I'd be like, oh, like I'd lean on the
counter and then my hip would just pop out and I'd be like,
oh, that's cool. Like, whatever.
And then that was like one of the first signs of hypermobile
earlob download syndrome. As a kid.
I was able to do the splits. Like there's definitely some
hypermobility that runs in the family.
(05:14):
And then it really all hit and started in 7th grade because out
of nowhere, I started with like,really bad joint pain.
I started with really bad GI symptoms.
I started fainting. It was it was scary, very scary.
And it like got to the point where I couldn't even put like a
(05:37):
sling backpack on like the really light like just literally
like doesn't even weigh a pound with just like my phone in it.
And that would bring extreme pain to my shoulders.
And then I had really bad knee pain so that I like, couldn't
walk upstairs anymore. And it would be like every three
steps I would have to take a break 'cause I was in so much
(05:58):
pain. And that was really hard in
middle school and in high school'cause there was multiple like,
levels of the school. So like during those 10 minutes
between classes where you're like having to rush and it's a
big, like building, you know, there's people, like, pushing
past you on the stairs and you're like, guys, this really
hurts. Hold on.
And like, no one understands. Yeah.
(06:21):
And I remember, like, falling into the tub.
Like, I would get up to go to the bathroom and then I
literally fall into the tub because I, like, fainted.
Yeah. So it was like a lot of
different symptoms that started.And it was hard because in the
beginning, no one really believed me.
It was it was more of like a push past it, right.
(06:42):
Like, it's fine. Just a little bit of pain, like
you're growing, things like that.
At the time, I was a competitivehorseback rider too.
And I like horseback riding is one of those sports where it's
like you are bound to fall off of the horse.
You get back up and you get backon the horse and you like keep
going. And so I really grew up with
(07:02):
that mentality where it was like, OK, like you fall down or
like something hurts, doesn't matter.
You keep going, right? Because you're supposed to just
push, push, push, right? And so I had to really advocate
for myself and be like, listen, something's not right.
Like I can keep pushing. Like I am mentally very strong
and I can keep pushing, but I know I shouldn't because my body
(07:25):
is really yelling at me that something's wrong, right?
It's not normal to have like tachycardia episodes.
So that's like when your heart'slike beating really fast out of
nowhere, It's like not normal tofaint out of nowhere.
It's not normal to not be able to walk upstairs as like a what,
13 year old, like things like that.
And then it got to the point where I couldn't horseback ride
(07:46):
anymore. Keep in mind during this time,
this is like the hard part is that in 7th grade, everything
started together and I really felt like I had no control of my
life at all. Because Bertolotti syndrome for
me, it comes in waves. So I will have like a year, like
(08:08):
a couple months a year where I'min horrendous pain and like I
will get stuck bent over becauseof the sharp pain.
Things like that. Like driving in the car is
really hard because of like the the brakes, whenever you hit the
brakes, like that motion really hurts too.
Yeah. So it got to the point in 7th
(08:30):
grade where everything started together.
So the Bertolotti syndrome started acting up, the GI
symptoms started acting up, the joint pain, the the cardiac and
dishonomic symptoms started acting up.
And I was like what is going on?Like my body is crashing on me
(08:50):
and it was hard because I also grew up in a family where it was
very much like I keep pushing mentality.
And so it took a while for even my family to believe that I was
really dealing with all these things.
And then it got to the point where I would like break down
and be like, I can't keep doing this.
Like something is really wrong. And then my mom finally started
to blame me. And that's when we started all
(09:11):
our whole I say hour because my mom came with me to all my
doctor's appointments. She was my best friend during
this time. Yeah.
When on all these doctors trips I've seen at the time, I saw
like more than 15 doctors for GIand cardiology, rheumatology,
(09:31):
orthopedics, like autonomic specialists, like so many
doctors. Yeah.
And I finally after two years was diagnosed with, well, first
I was referred to two geneticists finally, because one
(09:51):
of the things that I hate about our healthcare system in the
United States, but especially like even abroad, it's like this
too, is that everyone is so individual, but really like the
body is connected, right? Everything is connected.
So why are you telling me to just see one specialist when I'm
having like symptoms all over the place and then referring me
to someone else? But then when you refer me, it's
(10:13):
like a three month wait. So then it's like so many things
could happen in those three months before I see that
specialist. And you know, it's like it's
very disconnected way of approaching health.
I was. Just going to say that I, I
completely agree with you. It's like it's so disorganized
and like none of the doctors arereally talking to each other.
So you're going to all these specialists about all these
(10:34):
separate symptoms when in reality, like you said, it's all
in one body. Right, exactly so.
This is your friendly reminder that you are listening to this
for free, learning about chronicillness, mental health, and
other important topics for free.But this does cost time and
(10:55):
money to make, and you could be getting a lot more.
Click the Patreon link in the description to get access to
video episodes, free merch, and bonus interviews where we may
talk about things that have to be cut from the main apps.
And did I mention that there's no ads?
Not only do you get these very cool things, but you can also
(11:17):
support the pod because like I said, you're listening for free.
Give me a dollar and I will giveyou lots of cool stuff in
return. That's my pitch, anyway.
Yeah, so clearly everything was connected, but no doctor was
(11:38):
realizing that it was all connected, right?
They were treating it all like it was separate.
But eventually one of my doctorswas like, yeah, this doesn't
seem right. So they referred me to a
geneticist. I got genetic testing.
For those that don't know, hypermobile aerial download
syndrome is the only one that doesn't currently have a genetic
(11:58):
marker that's associated with it.
And like there is research goingon to try and find it and there
are some leads, but it's still not definite which one it is.
And at the time there was no genetic marker that was
associated with it. So they were like, you clearly
have a connective tissue disorder.
You clearly have all the the bite and score markers that
(12:21):
indicate that you have hypermobile air load download
syndrome. And by the way, like
dysautonomia is one of the like comorbidities that comes with
HDS and that like makes sense for like your tachycardia and
your fainting episodes etcetera.And so eventually I was also
diagnosed with POTS as well as orthostatic intolerance.
(12:44):
And they kind of fluctuate in terms of which one's acting up.
And then, yeah, I was like, great, I have a diagnosis.
But So what, Like it's a label now, right?
But I guess like, what do I, what do I do now?
Like I clearly am at the point where I am at the time.
(13:07):
I think when I was diagnosed, I was 15.
I'm a 15 year old girl who is struggling with all these
symptoms who should be at her most social point in her life,
right? Who wants to hide from everyone?
And that was really hard becauseI felt like I had to say no to a
lot of social events. I felt like I didn't want to eat
(13:29):
in front of anyone because yeah,although like joint pain was
really bad for me and all of thelike subluxations cause like my
shoulders, both my shoulders subluxed and both my hips
subluxed. The thing that was actually the
worst were the GI symptoms for me because they were visible,
right? Like it's super easy, at least
for me to be able to deal with stuff that people can't see and
(13:50):
then mentally just be able to like work through it, if that
makes sense. But like bloating and dissension
is very visible to other people.And so it got to the point where
I like will say no to any food events.
I saw a ton of GI doctors and like the first ones I saw told
(14:12):
me that it was in my head or that like there was nothing
wrong with me. Or one of them literally put me
on a an antibiotic and then never got back to us.
Like 2 months. My mom and I both called
multiple times to the office andthen he never got back to us.
Yeah. So it was very, very hard as a
(14:33):
young female who also like high school and middle school are
times where, and I mean this in the nicest way, but people are
idiots. They're mean.
And like, people are mean. Yeah, exactly.
And so it's, it's one of those things where you get bloated and
people like, we'll point it out,right?
And they don't really like notice that, you know, maybe
someone's going through something because medical
(14:54):
conditions are never really at the forefront of people's minds.
I feel like nowadays, like, unless you're going through
something, it's not something that you're going to be like,
oh, well, maybe she's dealing with something, right?
Or like maybe she ate something that upset her stomach.
It's more like, oh, like she hasgained weight, right?
And it's like it's really frustrating to be young and
dealing with GI symptoms when noone else around you understands.
(15:19):
And it got to the point where I eventually was diagnosed with
RFID. So for RFID stands for avoidant
restrictive food intake disorder.
And so I was avoiding food because I was scared of the
symptoms that would come from eating food.
So I had like the presentation fear of aversive consequences
(15:40):
'cause there's different presentations of RFID and then
that after more doctor's appointments and feeling
dismissed and like not helped spiraled into anorexia nervosa.
And so that was really hard because for me, the anorexia,
well, the ARPIID first and then the anorexia really stems from I
(16:02):
have no control over this. Like, I am trying my best to get
through this and people are being mean, people in society
who are have like the highest degree, right, are literally
being so dismissive and like, ithurts.
And I'm still dealing with thesesymptoms every day and I don't
(16:26):
know what to do about it, right?And so I turned to food because,
you know, food is something thatis very personal to all of us.
And I started to control food. And then I thought to myself,
you know, maybe if I started eating less, like maybe the
bloating would be less, right? So that's how the anorexia like
spiraled, but the stomach is a muscle.
(16:49):
And so if you're not working that muscle, it'll start to, you
know, atrophy. It won't work as well.
And so the bloating really didn't change.
But I still convinced myself that I would fix it by not
eating as much. But you know, eventually you
come to realize that's not gonnawork and you have to unlearn all
(17:15):
these patterns that you convinced yourself were right,
even though they're not. And you work through the
anorexia on top of the Bertolatisyndrome and the the hypermobile
Irlo Danlos syndrome and the dyspneomia.
And so my like key developmentalyears were really, really
(17:35):
pivotal and influenced who I am now.
And the thing that really like saved me, I would say is my love
for strength training, which I found because I, well, I was a
competitive horse act rider, like I said.
And then I had to stop because my body literally said you can't
(17:56):
do this. And so I was told to go to
physical therapy and I went to physical therapy and that
physical therapist, well, keep in mind that this was like, I've
already been to physical therapylike more than seven times in my
life, OK? This was like, yeah, this was
like, it was one of those things, you know, when you go
(18:18):
through something so many times and you're like, oh, here we go
again. But he really changed my life.
His name was way, I can say that.
And he actually was the first person to help me with my back
issues and with understanding like strength training and
(18:39):
understanding the like mechanicsof the body and understanding my
hypermobility too. And so that was one of the best
experiences that I've ever had in the healthcare system was
with Whey. And from there I picked up
strength training more seriouslyand I started to get better.
(19:00):
And it was honestly I, and I full heartedly say this like
strength training is the thing that saved me both physically
and mentally because I mentally got to the point where I like
did not want to do life anymore.I was like, this sucks.
And then I also got to the pointwhere I was super depressed,
(19:24):
like really bad anxiety just cause of all the symptoms I was
dealing with. And God bless my mother.
But she, I told her like she would pick me up from school
everyday and I would tell her, you have to drive me to the gym.
Like even if I don't want to, you have to drive me to the gym
because I need like I the 1015 minutes after lifting that I
(19:46):
would get of the endorphins was like the one thing that got me
out of a depressive state and like actually made me feel and
actually made me feel like I could keep going in life, you
know. And so I.
Would go to the gym five days a week, I would do my lift, it was
like 30-40 minutes and then she'd pick me up, I'd be happy.
(20:08):
And then we would just kind of cycle that again and again.
And honestly, that's the thing that really, I know this is like
a controversial topic, but I waslifting while I was recovering
from anorexia, but I was also working with a dietitian at the
time to like make sure I was eating enough and like making
(20:29):
sure I was, you know, not spiraling backwards or using
exercises like. Right, like supporting your.
Body through it. Exactly.
And so I would actually say thatthe lifting also really helped
me with my eating disorder because you're only going to
gain muscle if you're fueling your body enough.
(20:50):
So I was like, OK, like I need to eat because I have these
goals that I want to achieve through lifting.
I want to get stronger. I want to be able to hit like an
XYZ number for my squat or for my deadlift, things like that.
And I was like, OK, like this isgoing to help me achieve my
goals, right? So like, I need to eat.
I need to get better that way, right?
(21:11):
And so I slowly started to recover from anorexia also.
And I, I would say the gym honestly saved me too in that
way, because I was doing it for me.
I was recovering for me and for my future, right?
But I was also trying to achievegoals that were very separate
that took me like out of my chronic illness mind, right?
(21:34):
Because I kind of separated likethe gym me from the, the chronic
illness me, if that makes sense,'cause I was like, when I'm in
the gym, I'm invincible, right? Like I can do anything.
I'm super strong. I'm superwoman.
Like chronic illness, like doesn't exist, right?
And so, yeah, like I had to takethings slow when it came to
(21:55):
lifting, obviously, but it stillmade me feel really empowered.
Yeah. And so solely I started to get
stronger. I solely have had less
subluxations throughout my time through lifting, through getting
stronger because you need muscleto be able to support your like
(22:17):
hypermobility in your joints. That's happening, right?
Something needs to support that,Yeah.
And then I also have, so I slowly started to integrate
cardio also because for dysautonomia, think of it this
way, like your heart is a muscle, right?
If you're not training it to withstand those high jumps in
(22:41):
the heart rate, like it's gonna be harder to withstand those
high jumps in heart rate 'cause it's gonna get scary how high
the heart can get. And so I started to train cardio
through like on the bike I used.I did, I only did cardio on the
bike for years because it's low impact, right?
And it's safe 'cause you're seated.
(23:02):
I was gonna say yeah. And so, yeah.
And so that's what I did for years.
I slowly built up my tolerance. And now I'm at the point.
And this is a whole journey too.Now I'm at the point years later
where I am running and I am running marathons.
(23:22):
And it was a dream that I never thought I would be able to
achieve because when I first started my running journey, this
was in high school. So I ended up switching high
schools in high school because people were mean in my first
high school and I was like, I need a place where I feel
(23:45):
accepted while I am going through all of this.
And that school required you to be part of a sport.
And so I joined the cross country team and I had never
really been a runner ever beforejoining the team, but I ended up
being the fastest girl on the team my first year and then like
third fastest my second year. I was captain of the cross
(24:08):
country team my senior year of high school.
And that was like one of the best experiences.
And honestly, like I owe it to my coach cuz she was so
accepting, so loving. And honestly, like I felt like
she was one of my like a second mom to me just because I felt
like she really heard me and understood what I was going
through and like gave me the space to be the best athlete
that I could be in the way that I needed to be able to do it
(24:30):
right. So I would only run twice a week
and then we would have a, a meet.
So like a competition, a race onthe weekends.
And then all those other days I would just cross train by
lifting and by going on the biketo still build my aerobic base.
And that's how I was started my running journey.
(24:53):
And then in college, I, so I went to school in for undergrad
in the Boston area and I just loved that there were so many
schools that I could go to in the area.
So I would like make it a goal of mine to then go like to that
other school and just like explore.
(25:16):
And then I slowly started getting into distance running.
I know distance running is a different term for everyone, but
in high school you don't really run more than 3 miles like the
race is. So I was cross country, not
track. So it was a 5K so which is 3.1
miles is like the longest that you would run.
And then in college I was like, OK, let's see if I can do like a
(25:38):
Six Mile. Let's see if I can do like more
than that. And at first it was really
painful for the joints. And like, that's why I could
only run a few times in, per week in high school was because
like my ankle hypermobility is crazy and staying with my knees.
And so like my, my body was justnot prepared to withstand that
(26:01):
kind of impact at the time. So I had to really modify.
But I, as I kept getting stronger, I got to the point
where I could start running distance and I would have a lot
of joint pain after, but it was something that I knew how to
take care of, right. And then I got to the point
where I am now, which is well, actually, I'll take a step back.
In 2023, I ran the Boston Marathon.
(26:24):
That was my first marathon and I, that was so incredibly
special to me because I am not originally from Massachusetts or
from Boston, but I consider myself a Bostonian now purely
because I feel like I found myself in Boston in so many
ways, right? Like it was the point in my
chronic illness journey where I felt like I was no longer like
(26:48):
completely controlled by my chronic illness.
It was where I started doing really incredible research with
like a top research group in theBoston area.
And I fell in love with research.
And like, that is my, my long term career goal.
And I fell in love with the school that I was going to and I
(27:09):
felt really accepted and loved. And it just, you know, when like
a place like just makes you feelincredibly happy.
That was Boston for me, and it still is.
So for anyone listening who's from Boston, hi, maybe we can
meet up. But yeah, so that is I ran
(27:33):
Boston as a thank you to Boston essentially because I like, I, I
owed a thing. I like I, I felt like I owed a
thank you to Boston for everything that they had given
me. And then from there, when I
finished that, I, I told myself I would never run a marathon
again because it was so painful.But then I got stronger and over
(27:58):
the course of about a year and Ikind of on a whim signed up for
the Chicago Marathon. And I did that in October of
2024. And I PR Ed by 15 minutes and I
was like, I felt so good after it.
So then I was like, OK, like maybe this isn't as bad as I
remember it from Boston. Like clearly I feel OK after
Chicago. And so I will be running the
(28:21):
London Marathon in April and then the Berlin Marathon in
September. So I'm super excited.
That's very exciting. Oh my gosh, a marathon runner we
love. Yeah, and I can't believe I'm
saying that I'm a marathon runner.
I, I statistically should not berunning marathons.
(28:42):
But I've done a ton of work and it's taken me years, but I did
the work, not only physically, but mentally to be able to get
myself to where I am now, right?Because I think it's really easy
to see all these symptoms and say that you are the symptom and
then you got to diagnose and yousay that you are the diagnosis,
right? And then you start limiting
(29:02):
yourself because one, it's really frustrating that no one
else understands you around you,right?
But two, it's like you are with your body every single second of
every single day. It is so easy to get like
wrapped up in all these symptomsthat are constantly consuming
you right and yelling at you. And it's, it can be hard to kind
(29:26):
of detach yourself from those symptoms and be like, OK, you
know what, like I am feeling these symptoms, but how can I
refocus my mind to be engaged and like what I want to do
rather than what like my symptoms are telling me I can't
do? And I think it takes a lot, a
lot of time to be able to kind of do that rewiring in the
brain. But for anyone who's dealing
(29:48):
with chronic illnesses, I I ask that you maybe do some
reflecting on what you want to do rather than what your chronic
illness is telling you that you can or cannot do, and make a
plan to slowly work towards those goals.
Because it is so important to have goals that you work
towards. And that you, I don't know if I
(30:08):
can curse, but I will be nice. I'll just say like F you to your
chronic illnesses sometimes because yeah, that's that's
honestly what you have to do. Heck yeah, yeah.
And you have kind of like created this business model of
coaching other other spoonies, other people with chronic
(30:29):
illnesses. And so this is kind of the point
in the podcast where I would askyou for maybe your tips and
tricks, but I feel like you've both already shared them and
also can share some of them by telling us a little bit about
your business and how how that works.
So so chat with me about that. Yeah.
So I founded Steps to Perseverance, which is an online
(30:53):
exercise or movement, nutrition and mindset coaching platforms
specifically for people with chronic illnesses of any kind.
And I founded this because I think it is so important to be
able to get stronger, not only physically but mentally, and to
also fuel your body with proper nutrition to be able to not only
(31:16):
withstand everything that chronic illness is throwing at
you, but also everything that life without chronic illness
also throws at you, right? And I think it's hard because we
are constantly being thrown so much information on social
media, a lot of it which is not correct, honestly, if you look
at the signs. And so I am trying to be someone
(31:37):
who is not only a coach, but honestly a best friend for
people with chronic illnesses. And to literally hold your hand
throughout this journey that we're gonna go on together,
which is like finding movement that you not only that you
enjoy, but that you're gonna getstronger at throughout time so
that your symptoms are slowly going to decrease, right?
(31:58):
And that like I focus a lot on people with chronic pain
disorders or like hypermobility disorders or connective tissue
disorders and a dysautonomia because I know that so, so well.
And so we do that. We also work on nutrition and so
I know a lot of people have eating disorder backgrounds or
(32:19):
disordered eating because of thejourneys that they've been on.
And so I do a very not number approach to nutrition.
It is very much like a how do you feel in your body?
Like how do we make a plate? Like how do we take knowledge,
right, that is scientifically based and backed up and use it
(32:39):
so that you can go on for the rest of your life knowing this
knowledge, right? Like the goal is not that you
need me forever. The goal is that you have me so
that I can give you all this knowledge so that you then go
off into life being a badass, strong chronic illness warrior
who can say, you know, F you to my chronic illnesses because I
have these goals that I'm going to go chase and I'm going to do
(33:00):
them even if my chronic illness says that I can't, like I slowly
will be able to do it. And so that is who I am as a
coach. But I would also say that a lot
of the stuff that we work on is also mindset.
And so I, you know, have seen not only through personal
experience, but with my clients that there's a lot of I can't do
(33:21):
that. Or what if this happens or, you
know, all these like limiting beliefs that we put on
ourselves, right? Because of prior experiences
that we've had with our chronic illness or because of fear that
we have, right? But my, my biggest thing is let
fear guide you. I think that when you're scared
of something, you will automatically try to avoid it to
(33:43):
protect yourself, right? But really fear is something
that you should lean into. Because when you lean into fear,
that's when you're going to grow, right?
Like when you do the thing that scares you, that's when you grow
the most. And so it's really scary, but
empowering after you do the thing that scares you and you do
it over and over and over again to the point where then you're
(34:03):
not scared of it anymore, right?And I think that that really,
really is strong or like, is powerful for people with chronic
illnesses because slowly our lives get taken away from us
when we have chronic illnesses, right?
Like slowly our chronic illness says, you're not allowed to do
that or that's going to give youa symptom.
And then you start getting scared of so many things in life
(34:25):
that people that don't have chronic illnesses are like,
yeah, but who? That's so easy.
And then we're over here being like, I don't know about that,
but yeah. So it's like slowly tackling
those things that we now have a fear of, right?
And slowly reclaiming our lives,honestly.
Because one of the things that Ilove to say is that baby steps
(34:47):
lead to massive leaps with chronic illness.
I can't or you can't just say I'm gonna do XYZ and then just
go ahead and do it right? Because you slowly have to kind
of trick your chronic illness into doing what you want it to
do. And so the best way of doing
that is by taking a ton of tiny little baby steps, working
(35:07):
towards your goal. So that you kind of trick your
chronic illness and you're, you kind of kind of like, what's the
word not make it realize that you're actually working towards
what you want rather than what the chronic illness wants, if
that makes sense. And then eventually you'll make
massive leaps. And that's how I honestly got to
where I am today is by taking a ton of those tiny, tiny little
(35:30):
baby steps, right? And that doesn't mean that
progress is always linear. You know, I think in anything in
life, you're going to have setbacks, right?
Something's going to happen, you're going to have to pause,
etcetera. But you know, it's way easier
going through those setbacks or going on this journey when you
have someone to hold your hand and guide you and give you the
next steps, those tiny little baby steps instead of going on
(35:51):
this journey alone. And that's who I am.
That's why I'm a chronic illnesswarrior coach and that's why I
do what I do. And honestly, it's been some of
the I've had like happy tears with some of my clients because
of the progress that they've had.
And like I had one client who like used to not be able to walk
(36:12):
upstairs and who had really, really bad pain who could never
work out at all. And like, we've figured out a
way for her now. She's like dancing upright and
she's, yeah, she's walking up stairs.
She's doing like 10K steps a daynow on her own without me even
telling her to. And she's like, look what I'm
(36:32):
doing. I'm like, Oh my God.
Like I am so, so proud of them for, for all of their progress.
And so it's progress like that. And like seeing those little
little baby steps add up for thepeople that I'm helping.
That has been so incredible. And I want more people to to
(36:53):
honestly start their journeys and to take the leap.
And I know it's not easy and I know it's scary, but honestly,
like the progress that you will have through it is incredible.
And so, yeah. OK, love what you just said and
I I completely agree. It really is the baby steps that
get you to where you want to go.And I'm, I'm so glad that you
(37:15):
are here to help guide people and like you said, hold their
hand through this because when you are doing it alone, it's so
easy to have a set back and justbe like, I guess I can't do it.
Like I, I, I give up like this flare is too bad or I'm just
having a rough mental health day.
(37:36):
I can't do it. But instead to have someone be
like, no, you can, like, let's find something you can do is
amazing. So thank you for being that
person. It sounds like you're you're
really helping this community. Thank you, that means a lot.
Well, for the listeners who would like to maybe be coached
(37:56):
by you or at least look into what you're doing and chat,
where can they find you? Yeah, so I have an Instagram
called Steps to Persevere and Stop Fit.
Come follow me, come chat. Let's let's work together.
Let's just talk and see how everything is going.
Yay, I love that. OK, well Izzy, I really loved
(38:21):
having you on the podcast. I feel like I personally have
learned a lot and you're really inspiring me to maybe do a
little more on my own fitness journey.
So I. Love that.
Well, again, thank you listeners.
That is all we have for you today.
Otherwise, I'm Clark, this is Izzy, and this has been
(38:43):
chronically the sickest podcast you know.
That's all folks. Thank you so much for listening.
If you liked this episode, clickthat follow up button on your
podcast app of choice to get notified every other week.
You can find the podcast on Instagram and TikTok at
(39:04):
Chronically the Sickest Podcast.Let me know if you have any
questions or just want to chat. I love hearing from y'all.
Until next time, I'm Clark, and this has been Chronically the
Sickest podcast you know. Disclaimer, this is a
conversational podcast and whilewe make sure our diagnosis
(39:25):
journey, symptoms and treatment plan, this is not medical
advice. If you have any questions
regarding your health, please reach out to your doctor and
have a great day.
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