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The US healthcare system makes it difficult, expensive, and often impossible for people with T1D to access the care, education, and support they need to live. Around the Circle: Living Well with T1D brings together voices from across the type 1 diabetes community to share real stories, expert insight, and practical support for living well with T1D.
Hosted by the team at Blue Circle Health, a U.S.-based program transforming type 1 care, this podcast helps people go from just surviving to truly living well with type 1 diabetes.
Learn more at BlueCircleHealth.org
Diabetes can feel incredibly isolating.
The people around you usually don't
understand what you're going through,
especially all of the stuff you're
doing in the background around
food and numbers and day to day or
even minute by minute decisions.
My name is Scott Johnson.
I've lived with type one diabetes for 45
years, and today we're gonna talk about
why community matters and how peer support
can change your experience with diabetes.
You don't have to do this alone.
I am excited to welcome
Mila Clarke to the show.
Mila is a board certified health
and wellness coach, public health
nutritionist, and the creator of Hangry
Woman and the Glucose Guide communities.
Mila also lives with diabetes and
we'll hear more about that in a moment.
Mila, thanks so much for
joining me today joining.
Thank you, Scott.
I'm so excited to chat today.
I am excited too.
Let's maybe help people get
to know a little bit about
you and your diabetes story.
You had, not the average entry into
diabetes, but I bet it actually happens
more often than we would like to admit.
Can you tell us a little bit about
your, your journey with diabetes?
Yeah, so about 10 years ago,
my 10th diaversary is in 2026.
It's uh, May 5th, 2026.
I went to primary care because I was
feeling really exhausted and tired.
I was waking up in the
middle of the night like.
10 times to have to pee.
And I was like, this is just not
normal for someone in their twenties
who like is actively taking care and
actually interested in their health.
And so I found myself in the
doctor's office on the other side
of a type two diabetes diagnosis.
At first it was, I think
to me, just like the.
I knew that the answer didn't
fit and I worked so hard to try
and get somebody to believe me.
It took four years before I was
finally tested for autoantibodies
and my insulin production level.
My C-peptide was tested, and then I
found out that I was living with a
form of type one called lada, latent
autoimmune diabetes in adults, which
is just a fancy way to say my diabetes.
Progresses slowly over time.
Um, and so my, you know, insulin producing
beta cells get attacked slowly over time
by my immune system and I, you know,
end up having to be insulin dependent.
Um, and it happens a lot more than
people realize, particularly when you're
getting diagnosed at an older age.
So I, and I put that in quotes.
You know, I was 26 when
I was diagnosed, but.
That's at the time, you know, people
weren't looking at 26 year olds and
being like, you have type one diabetes,
and so I think I had this entry
point into living with diabetes that
was a lot slower than most people,
but was so frustrating because I
was being denied access to insulin.
I was being told that if I got on insulin,
that it meant that I was too far gone and
that I was ruining my health and my body.
And I just had all of these messages
thrown at me that I had to unlearn.
And so it was a really, I think, just
difficult experience, but it also has
brought me exactly to where I am now.
Um, and all of the bumps in the road
that I feel like I had to deal with
on the onset of my diagnosis have been
exactly why I do the thing that I do now.
And I know that we'll
talk about that today too.
Yeah, absolutely.
You know, I can't imagine how
frustrating it was for you
getting an incorrect diagnosis.
Right.
I can't imagine how hard it must have
been for you to live for four years with
not getting the right medications, which
also meant you weren't feeling good.
Tell me a little bit more about what that,
what that window of time was like for you.
Yeah.
You know, I think the thing that was so
frustrating to me at the time was that
I went to the doctor to feel better
and I felt like I just continually kept
feeling worse and worse and worse, and
being met with the message that I just
needed to exercise more and change my
diet and I would see my A1C improve and.
You know, in the beginning I was,
I, I kind of felt like this little
space of denial because I have a very
strong family history of type two
diabetes, and so even though the way
that I was feeling and the way that I
was being treated didn't make sense.
To me and didn't feel
like the right thing.
I was like, well, this must be
the thing, because like this
is what runs in my family.
Like every woman in my like immediate
line of family had gestational
diabetes when they were pregnant and
then type two diabetes afterward.
And so I was not pregnant, but I was like,
well, it just seems like the right answer.
And so it was frustrating to be
in a position where I felt like I
was doing all of the things that
I could do to improve my health.
And I wasn't seeing the changes happen.
And I wasn't aware of Lata at the
time, but I have a very good group
of girlfriends and they know who
they are, who I think over and over
tried to shake me out of that denial.
And they were like, just go
ask to see an endocrinologist
so that you can get tested.
That's all you need to do.
And I think the day that it hit me that.
Understanding my diagnosis and getting
like the right diagnosis so that I
could get the right treatment the like.
The day that I realized that
it was a simple blood test, I
was like, are you kidding me?
Like, I've been feeling this
way for so long and all someone
had to do was order blood work.
And that's it.
And it would have given us the
answer to get us onto the right path.
But it took so much fighting and it took
so much energy and effort just trying to
be believed in a system that like already
doesn't believe people who look like me.
Um, but that also like kind of.
Looked at me and said, well, you
don't know what you're talking about.
Like I'm the expert here.
I'm the doctor, and like you're
asking for things that you don't need.
And it turned out that I was asking
for exactly the right things, and
even people who you know, were
not professionals, could see that.
And were telling me like.
If you just go do this thing, you'll
get a, you'll get the right answer.
And it doesn't matter like what answer
comes out of it, but you will get
something accurate so that you know
exactly what you should be doing and
how you should be treated so that you're
healthy and you're not feeling this way.
And so it took me, I feel like a
really long time to work up the
courage to finally be like I am.
Upset and I'm frustrated and I'm not
getting anywhere, and I'm spending
tons of money on oral medications
that make me feel like crap all the
time and they're not doing anything.
And I know that this isn't
right and it, I mean.
I think going through the process, like
I saw four doctors in that four year
period and it wasn't until the last
one who was a black woman, somebody
who looked like me, somebody who like,
I felt like, okay, I can have this
vulnerability in this conversation.
And I mean like as soon as I like sat in
the chair, I just started crying and I was
like, I have been at this for so long and
I don't understand what I'm doing wrong
and I don't know why this isn't working.
And she was the first person to say.
I honestly don't have an answer for
you, but what I can do is make sure
that you get to the right specialist
who can find the answer for you.
And that for me, changed everything
within a couple of weeks.
I was in an endo's office, I was getting
the blood work done, and I was finding
out my diagnosis, you know, a day
after, and it felt like such relief,
and at the same time, such grief,
because I felt like I have been told.
You know these, these same things
for years and years and years
of like how to manage diabetes.
And the entire time.
I actually needed a whole other rule
book to be able to live by and a whole
other set of tools that I wasn't being
given because nobody would believe me.
And so, yeah, like I think it really
fostered a sense of me being really
diligent and vocal and learning that
advocacy is really, really important.
But I also think that I. Would, I would've
eventually gotten here, but I think that
the community that I had around me and
the people that were advocating for me,
even behind the scenes to advocate for
myself, they're so much a part of why
I think I got that answer a lot sooner
because they really gave me the confidence
to say, you can ask for these things and
like you're not doing anything wrong by.
Telling your doctor you
think they're wrong.
Um, and so I think like, you know, that
was something that was so huge to me and
that also really taught me the value of
like having other people with diabetes
in your circle and in your corner because
you don't know what you don't know.
And community can be such a big
part of giving you that information
and that knowledge and like the
confidence to move out of that rut
that you feel like you're stuck in.
Yeah.
Yeah, absolutely.
And, and so there's two things I want
to kind of dig on a little bit here.
One is finding that community in that
original space you were, but I want
to come back to that in a second.
I wanna, I wanna dig in a little
bit on how, how did you find the
strength and the, the courage to
fight through that frustration with
changing doctors several times.
I imagine, I, I can picture myself.
If I had, if I finally built up the
courage to do it once, I would've
felt like, wow, and then only to bump
into the same experience with the
second doctor, that probably would've
done, that would've been it for me.
I, I'm not sure I would've been able
to build up the courage to do it again.
How, how did you.
How did you do that?
How it speaks a lot to your character,
but how did you find your, the, the
courage and strength to do that?
Not only once, not only
twice, but several times?
Yeah.
I think for me it was.
Um, just a matter of how I felt, I felt so
awful physically, mentally, emotionally,
that I just was like, somebody has to
help me get out of whatever this is, and
I am gonna keep asking questions until.
I get to the point where I get
the right answer, and I think I've
always just been that kind of person.
Like I'm a journalist by trade and
background, so I'm like a naturally
curious person and I always want
to know the why behind things.
I was that like annoying child
that like, you know, my parents
would tell me something.
I would be like, but why?
Tell me more.
Like.
Give me some context.
And so for me it was that feeling
of like being naturally curious
and wanting to know like why I
was feeling the way that I was.
But then at the same time also feeling
like I just want to get out of this.
I like, this is not how.
I thought I would be spending my twenties,
like the best years of my life at this
point, the most like energy that I'll ever
have, the most freedom I might ever have.
Like I feel like I'm in this
like prison of my own body and
I just wanna know what's wrong.
Like I'm willing to fix it.
I'm willing to do whatever
it takes, but I also.
Just have to know like why it's
happening and what's going on,
and I just wasn't convinced.
Like when I sat in that chair
and I was looking at my labs with
my primary care doctor, I was
like, everything else is normal.
My blood sugars are so abnormal.
Like a 300 blood sugar feels like
it, like fasting blood sugar.
Feels like it warrants maybe a
little bit of extra questioning and
discovery, but it was kind of like,
Nope, this is just how, how we do the
test and determine you have type two
diabetes, so that's what you have.
And so for me it was like, okay, I'm
not convinced and so I'm gonna ask
more questions and I'm gonna do more.
And like I'm gonna leave a doctor
who I feel like isn't listening to
me, and I'm going to find somebody
who will finally listen to me.
And I feel.
Like I found the right person at the
right time because really like at
the F point where I was sitting in
like the fourth different doctor's
office that I had to drive like an
hour and a half to go see them like.
Each way.
Right?
I was like, I can't do this again.
Like, I, I give up.
Like, if I can't figure out
what's wrong, then that's it.
I don't care anymore.
And so I'm really glad that that day
I was so frustrated and that I was
honest with the provider that I saw.
Because it's easy to walk in and, you
know, you'll meet your doctor and they're
like, Hey, you know what's going on?
Tell me a little bit about you.
And you're, you're.
Tempted to say like, well,
things are going okay.
Like, you know, this is how it's going.
And like that day she asked
me how I was, and I think I
was literally at my wits end.
And I just like, I'm not the type of
person that normally will burst into
tears, but I did that day and she,
you know, picked up a tissue, handed
it to me and she said, it's okay.
Like, we're gonna figure it out.
And if I don't have the answer, I know
who to send you to so that we get it.
I feel like so lucky that I got to that
place, and honestly, if that hadn't
been the answer at that point, I don't
know how it would've gone afterward.
Mm-hmm.
Yeah, well, it, again, it speaks to,
uh, the strength of your character
and, and one of the many things that
makes you the amazing person you are.
Um, and it's, it's kind of a sad
state of affairs in how quickly we
just kind of take what the answers
that we're given and, um, fit our
lives to them versus just kind of.
Thinking like, no,
something's not right here.
I need to keep digging.
Because it's exhausting
to keep digging, isn't it?
Yeah.
And it's exhausting to also disagree.
Yeah.
To have to like defend your
position and to, um, I think like.
Put, be able to put the words together to
say, this is why I'm feeling this way, in
a way that makes sense to someone else.
And especially like within the, the
state of care that we have, you know,
you only have a 15 minute appointment.
Yeah.
It's really hard to get across
everything that you're feeling and
thinking and all of the questions
that you have just in that timeframe.
And so you're kind of like.
Dealing with all of these different
elements, you're crunched for time.
You have to get in all of
these questions at once.
You might have way more questions than
your doctor actually has time for.
You might have to ask a question
several different times, in several
different ways to get the answer
that makes the most sense to you.
And so I think like, and then like
the, the discomfort of saying like, I
know that you have medical training.
I know that you're my doctor and
that I'm sitting here in front
of you, but I disagree, like
I think there should be something else
that's done and having to have that
friction as the patient and sitting there
where like you're in front of an authority
figure, that can also be really difficult.
Totally.
And really taxing.
Yeah.
Yeah.
And, and you don't even, because
you're, this is all new to you.
You don't even have the language
to know what words to put together.
And oh, by the way, you feel like crap.
During all this, right?
Like you, you know, so that's, that's
just such a, there's a lot there.
Let's come back to the community.
You mentioned this strong community of
people who, who save your life, right?
And but where did you find
those amazing people early on in
your, in your diagnosis journey?
Most people don't have
those people, right?
Yeah, it's so true.
And I. I think the thing that really
benefited me, um, and you know,
you think back 10 years ago, 2016.
Like the diabetes online
community was sort of a new thing.
Like, not like totally new, but like
the participation was a lot different.
Yeah, it was different
on different platforms.
We didn't really have, um, tick,
we didn't have TikTok at all.
We didn't have Instagram or we
might have, but like the community
wasn't necessarily there.
And so a lot of people I found through.
Developing recipes for type two
diabetes, because that's what
I thought I was living with.
And so I was like, okay, well if the
directive is to eat better, I'm gonna
do that and I'm gonna document it.
And maybe people find it and
they find a good recipe that
they love, maybe nobody finds it.
And I've just documented this for.
And it's cool.
But there were also, like, as I started
digging in and started kind of trying
to understand diabetes a little bit
more, I started to find like different
communities and different places online.
And one of those places that I
found was a Twitter chat that just
kind of like randomly happened.
People all around the world
called Dsma hashtag dsma.
And I think that's where I
like first encountered you.
Scott.
Uh, Cherise Shockley was
the founder of that chat.
And so, um, I met her and I
kind of told her my story.
She was one of the
first people to be like.
Go get tested, go tell them to
do blood work because like you're
not getting the right answer.
Um, still like my great friend to this
day, and I met so many different people
from around the world who were so
welcoming and so open and so willing.
To answer questions about just like
day-to-day life with diabetes or diabetes
tech or, the thing that I really loved
about those chats is that they weren't
always like super diabetes focused.
Mm-hmm.
You actually got to know people as
people, and I think for me, you know,
I felt so alone in that diagnosis.
I felt like I am the only one that is
dealing with this and I don't know how to.
Explain it to anybody, and I'm
ashamed to talk about it and I feel
like I've done something so wrong.
And then to see all of these people come
together from like German, Germany, from
Italy, from the uk, from South America,
from like all over the US just talking
freely in, openly about diabetes and like.
Sharing stories and sharing
tips and sharing like uplifts.
To me it was like, oh
my gosh, like if this.
Is the support that I have, and I know
that I'm not the only one that's doing
this and that's having to deal with this.
I think I can make it like,
I think I can do this.
Yeah, I think I can make it happen.
And for me, like seeing that there
were other people, I think that was the
number one thing that really boosted
my morale about living with diabetes
was I was like, okay, there are other
people out there who are badass, who are
doing really cool stuff, who are like.
Smiling who are wearing an
insulin pump and smiling.
Yeah.
You know, like it was just
like, okay, like that.
That's the person that I wanna be.
I want to be that person wearing my
insulin pump and smiling and being
like, this isn't gonna take me down
and I'm gonna be able to do whatever
I want to do with the rest of my life.
And so like.
I think being able to see that and
being able to meet people in that way
was something that really changed the
trajectory of how I felt about diabetes
and how I decided that I wanted to show
up in the world for other people who
might have been sitting in the same
chairs that I was sitting in and felt
like I, I'm at my wit's end and I want
to give up, and I just don't feel like
there's any help that I can get out there.
And people still do feel that
way, which is so interesting.
You, well, it's, you were very brave
in stepping out because at the time you
were living with type two diabetes and
the, the, you mentioned how the space
in the, in the online diabetes, uh,
worlds, it's, it's very type one heavy.
I and, and there's not many people
living with type two diabetes that, uh.
Openly talk about their experiences
because there's so much guilt and
shame and unfairness thrown at
them from the rest of the world.
And so I I, you are very brave to
take that step out and do that.
And, and I'm hoping that, um, it,
it encourages and encouraged other
people to do, to do the same, and
that certainly has played a role
in, in what you've built today.
Can you talk a little bit about.
Why you think diabetes can, can
feel so isolating, you know,
especially in that type two world.
But even, even for those of us
with type one or lada, it's,
it's still very isolating.
Why do you think that is?
Yeah, yeah.
You know, the thing that comes to mind for
me, and particularly with like the frame
of type two diabetes is that I, like, I
am one person who's lived one foot on.
Either side of each diagnosis.
And so I remember getting my type two
diabetes diagnosis and the messaging
being like, you're 26 years old,
this shouldn't be happening to you.
What are you doing?
Why?
Are your blood sugars like this?
You need to do X, Y, and Z because if you
start to go on medication, if you start
to go on insulin, if you start to have
to use any of these tools, that's gonna
be the rest of your life and there's
never gonna be any turning around.
You're never gonna be healthy.
You're gonna lose your eyesight,
you're gonna lose your feet.
Don't you know you have
family members who are.
Living with this condition, don't
you see what it's like for them?
The messaging is so negative when you
literally are just getting an answer
and you're like, what is happening?
Like, what did I do?
Like why?
What did I do that was like
so wrong to get me here?
And like then you're scared
and you're like, I can't do
this for the rest of my life.
Like this is really terrifying.
And I think on the other side, like in
a type one diagnosis, you still get that
feeling of fear and that feeling of.
I don't know if I can do
this for the rest of my life.
Like this is kind of crazy that I
literally am like a little tamagotchi that
I have to take care of every single day.
Yeah.
But then on the other hand.
The message of support and the warmth
that I got when I found out that I
had my LATA diagnosis, like it was
a radically different conversation.
My endo sat there with me and
said, I know that this news
is probably really surprising.
And 'cause I remember telling him
before the testing, like, yeah, I
probably have type two diabetes.
I just like, you know.
I, I'm not on insulin,
so I just need that.
And so he was like, yeah, we'll see.
And when my test results came back and I
was positive for autoantibodies, and my
eptide was like near zero, he was like, I
know this news is shocking and I know that
you have been told for a really long time.
That if you just did these things, it
would work, but right now I'm telling
you that you are gonna have this
diagnosis for the rest of your life,
but you have support, you have tools.
We have insulin pumps that you can try if
you're uncomfortable with an insulin pump.
Let's discuss doing pens and how that can
work into your lifestyle, like the just.
Support was so overwhelming
almost in the way that like the
chastising was overwhelming.
Yeah, and I, I was so surprised by
just how different it can be to be
sitting in those chairs even as the
same person and get radically different
messages because now we know like
there are so many tools for type two
diabetes that can help someone manage
and that can help them live a healthy
life, even with a diabetes diagnosis.
It's very similar for type one.
It's just the method and the way that
it's caused, that's different, the
method and the way that it is onset.
And so for me, like.
Even reflecting on those like
very two different messages.
You know, like I, I can never
say that, you know, one diagnosis
is better than the other.
They're just different.
Sure.
Yeah.
But I think that the approaches for
sure, the approach to supporting someone
with type one diabetes is not matched
and is not the same when someone gets
diagnosed with type two diabetes.
And I think that you're
meant to feel shame.
You're meant to feel blame and
you're meant to feel stigmatized in
order to like, in like air quotes
for the audience kick you into gear.
Yeah.
But.
What you really need in that
moment is support and a kind word,
because you're already saying
the worst things about yourself.
After knowing that like that's the
diagnosis that you got, and then some
hope that you have a way forward and
that there are things that you can do
to be able to manage and be healthy
and not feel terrible all the time, and
to be able to live a really long life.
With the illness that you're living
with, I always wanna help people
understand is like, yes, there are
differences, but like nobody with this
illness deserves stigma and shame and
blame for what they're living with.
Like we should all be willing and
ready to uplift someone because the
end goal for us all is to just live
happy, healthy lives with diabetes.
Yeah.
Amen to that.
This is a great time to take a break
and we're gonna dig into more around
community and what that means for all of
us living with diabetes in just a second.
Hi, I'm Morgan.
I'm a part of the Blue Circle
Health Team, and I've lived with
type one diabetes for 18 years.
One of our favorite things is sharing
stories from people who've participated
in the program, and I have one here
from Susan in Florida who's been living
with type one diabetes for 67 years.
I'm going to read it for you.
Blue Circle Health has been an absolutely
life changing force in my journey.
T 1D is a relentless daily struggle
mentally, emotionally, and physically.
Before connecting with Blue Circle Health.
I constantly felt I wasn't doing enough.
This incredible charitable organization
provided me with a comprehensive team
consisting of a dedicated endocrinologist,
a physician's assistant who truly
understands because she's also a T 1D.
Another T 1D peer who was
always available to me.
Beyond that, they offered a plethora
of support groups filled with people
who share similar experiences.
This team listened to my stress, and for
the first time in my life, affirmed my
ability to take excellent care of myself.
They introduced me to an ongoing peer
support group that I so sorely needed
and will continue to be a part of.
Blue Circle Health has not
just provided medical support.
They've given me a profound sense
of community and validation.
I'm incredibly thankful for their
unwavering support and the significant
positive impact they've had on my life.
Thank you, Susan.
We really appreciate you
sharing your story with us.
And before we dive back in, I wanna give
a quick shout out to a nonprofit that is
doing incredible work for our community.
You're just my type, founded
by Laura Pavlakovich.
And listen, there's no
sponsorship involved.
This is not an ad. In fact, Laura
doesn't even know that I'm doing this.
It's just me showing some
love to a great organization.
This organization is dedicated
to the mental health side of
diabetes that sometimes gets
overlooked in the doctor's office.
They focus on the human element, hosting
in-person events and building a rich
online community where you can connect
with others who truly understand the
emotional weight of living with diabetes.
If you've ever felt isolated and alone
with your diabetes, I highly recommend
checking them out at your Just my type.org
or on social media at your Just my type.
Welcome back.
So Mila, you have shared how
impactful having even just a small
community of people has been for
you in your diabetes journey.
Let's talk a little bit about that, and
through this we'll also learn more about
what you have built and are building.
But to you, what makes community
feel safe and supportive versus
judgy and kind of more isolating?
I think really.
A safe and supportive community
is all about the tone that
you set when somebody joins.
So I think of like when people want
to start a community, when you are
like, you know, I want a group of
people to be able to rally around
each other, have the support that
they need, you set the tone for that.
And so I think.
In my community, which is called Glucose
Guide, I really lead with like even
in that first message that I send to
someone, like this is a place of support.
It is judgment free.
We are all free to manage diabetes
in the way that works for us.
And no one's gonna tell you what
to do here, but the hope is that
you can contribute to the knowledge
that other people want to gain
around diabetes management, and
especially in peer support groups.
I think it's so important to start with
that and to lead with that because it can
be really easy to want to join a community
and your first instinct is like, well,
I wanna be here because I want support,
but I also wanna help other people.
And so you can.
Easily, very easily cross the line into
finger wagging and to being like, oh
no, you shouldn't do things like this.
Like that is so inefficient and like
this is actually how you should do it.
And so I think it's really important,
like at the onset of developing
your community or deciding like what
you want that community to be, to
really set those parameters and set.
Like what you want the
ultimate goal to be.
And if the ultimate goal is you
just want people to feel good
and to help each other Yeah.
Then you gotta let everybody
know that that's what you want.
And to set the tone in that way.
Yeah.
It, it, so setting the tone.
From the start and reinforcing
the tone in a way that doesn't,
uh, make people feel shut down.
I think you're very, very good at that.
And, and the way that you reinforce
that tone that you set is a big, is
a big part of what I really enjoy
about the glucose guide community.
What about another One of
the pitfalls that I see often
online is comparison, right?
I think it's opening the floor.
And just letting people like, you
know, first you set the tone and
then also you reinforce that with
the way that you respond and the
way that you talk with people.
I think it is the bravest thing
in the world to share your
experience from your perspective.
Like, I can't imagine, you know,
like for instance, there's 2000
people, like over 2000 people
in the glucose guide community.
Someone will post, all
2000 members can see that.
And like, can you imagine standing
in a room of 2000 people Yeah.
Bearing your soul and saying,
this is what I'm going through.
This is how I feel right now.
This is what I really need from others.
Mm-hmm.
Um.
I mean like it is, it's scary
to bare your soul in that way.
And so I think it's so important to
recognize and acknowledge that people
do have different lived experiences.
They are in different places
in their diabetes management.
And where they are at that moment
is where they are at that moment.
Yeah.
Um.
We don't all have to try and fix it.
We don't all have to try and make it
better, but we know what this person is
asking for and what they need, and that
can be a way to be able to interface
with them and have good conversations
with them and check in on them.
Like if somebody makes their first
person post in the community and
they say like, I'm feeling really
lonely, I'm feeling isolated.
I don't know anybody else with
diabetes, like where do I start?
What do I do?
The thing that I love so much is that.
Even before I can hop in and say
anything and try and encourage them
and try and give them like a kind word.
So many other people in the community
will say, you are not alone.
Like, we wanna let you know
you're not alone and we wanna let
you know that you have a place
here and that you are safe here.
And that if you have any questions like.
Open the door, message Mila She will.
Like, she's got you.
And I think that that's, that's just
such a cool thing to have seen develop
in my community is that it's almost
like I don't even have to be there.
And I think being able to know that,
like there's a space out there that
really embraces everybody where
they are in whatever state they're
in, and that accepts them and is.
Like willing to be like, Hey,
we see you, we, we've got you.
Like, I think that that is so important
and you know, like not to like do an ad
for Blue Circle, but I think that's also
something that you guys do so, so well is
that you meet people where they are and
you give them the tools that they need to
be able to move through this diagnosis.
And it's rare.
Like, like thing, the things that
we do are rare and yeah, it, they
shouldn't be, they should be the norm.
Um.
But they are really rare, but they exist.
Can you tell people what
lurking is for those that may
not be familiar with that word?
And talk to me about the value that
that's there, even when just lurking.
I think lurking is so.
It is such an important part of community
because not everybody is ready to jump
in both feet first and say, here I am.
This is what I am thinking.
This is what I'm doing.
You think about standing in front of a
room full of people sharing your most
vulnerable thoughts, that can be really
scary, and knowing that you can just sit
on the sidelines and you can watch and
you can take what you need and walk away.
Is a comfort, like you
don't have to be invested.
You don't have to take any action.
You don't really have to do anything
except for scroll and read and decide
what stays with you and what doesn't.
You can start quietly and build up
that confidence and that willingness
to be able to share when you're ready.
It doesn't.
You know, mean that you're not as
into community as somebody else.
It really just means that you're operating
on a level that you're comfortable
with and that you're getting what
you need in the way that you need it.
And I think that's the, the key
point is getting what you need
in the way that you need it.
That's, that's one of the, the biggest
values that connecting with others in the
diabetes space online has to offer is.
That you are able to get what
you need, when you need it.
And, and there are many, many
different ways to do that.
And so I love that you, that you brought
that point up and, and talked about
how much value there is in lurking.
I know that the term sounds kind of
funny, but it's, it's incredibly valuable
and, um, people should feel comfortable
to lurk as, as much as they like.
When it comes to sort of checking
out different communities that
are out there, what are some signs
that a community might be a good
fit or conversely not a good fit?
And if it's not a good fit,
should you give up on community
or just go find another one?
'cause there's many out there, right?
Yeah, so I'm gonna answer
the second question first.
I don't ever quit on community.
Like I think that community is
so vital, truly, like our shared
experience means so, so much,
and I think there's this huge.
Like uplift that you get when
you know that there are other
people who understand you.
You know that there are other people
that you can text, that you can chat
with if you don't find the right fit.
It's just like, it's just like anything.
It's just like dating.
It's just like finding a good care team.
Like you're allowed to
leave if you don't like.
What's happening and you don't
like where you are, you always have
the choice to go somewhere else.
But just like if you take like nothing
else from what I say today, just don't
give up on community because it can be so.
Amazing.
I think on the other hand, like looking
for communities where there's clearly
somebody who's moderating and who is like
really understanding what conversations
need to be had, knowing when to shut
down a conversation like doesn't happen.
Almost ever in our community.
Like thank goodness.
So that's one really important
thing is just moderation.
I think also just the, the way that
other people interface with you
and comment and talk to you mm-hmm.
I think is a big flag
that you should look for.
Like, are you welcomed into the community?
How are people sharing?
With you, like are, is it like a hostile
environment and like you feel like,
whoa, I should have never asked that
question, like I'm stepping on some
toes, or do you feel like you're able
to actually open up and ask questions?
That's something that's super important.
Like we all seek community for the
comradery for knowing that other
people understand, but we're also
looking for people who are going to be
respectful of who we are as individuals.
Yeah, what we bring to the table
and what we offer, and so like you
never wanna walk into a group where
you feel like, okay, I'm gonna be
othered in this situation, right?
My lived experience isn't gonna be
treated as something that people really
understand or that they're respectful of.
And.
I think you can get some
of that from lurking.
I think that's also why
lurking is a good idea.
Mm-hmm.
Like,
yeah,
you know, test the waters a little
bit before you dive right in.
But I think that it's super important
just to like have an awareness of like
how you might be treated in this space.
And then the last thing that
I would say is like, you
know, how often is it updated?
How often is the information
that you're getting updated?
You can walk into any type of community,
and if you're looking at information that.
Is 10 years old.
Yeah.
You're looking at things that are
outdated that might not necessarily,
not that they won't be accurate, but
they might not be accurate for the time.
They might not be something that
you could apply for yourself today.
Yeah.
Um, and so I think that
that also has an importance
for someone who maybe feels
hesitant or burned out by, uh,
burned by past experiences.
Where, where would you recommend
they can start with peer support?
What's one small step that
they can take towards.
Connection,
honestly, just finding one other person
with diabetes that you feel like could
be your friend, that could be through
an Instagram DM where you saw someone's
post and you're like, Hey, I thought
that was really cool that you said that.
Thanks for saying it.
Like you're not necessarily in community
together by saying that, but you're
building a connection and that's what
community is, is these connections.
Yeah.
Um, and so if it feels overwhelming to
join something big, start really small.
And just do like one thing, send one
message, tell one person you admire
what they shared or you admire,
like the way that they made you
feel whenever they said this certain
thing or you took this thing away.
Yeah.
Um, I think as much as it is for the
other person, it's also for you to be
able to share those sentiments as well.
Yeah.
There's definitely something
to be said about about this.
Um, going through the thought process
of kind of assigning words and to
these feelings that we experience
with, with diabetes, what would you
say to someone who has maybe been
managing diabetes alone for a long time?
Again, let's break it down into
some steps they can, they can take.
Yeah.
I think it really depends.
So someone might be managing alone because
they want to, and they're just like.
I, I just like doing this by myself.
I don't wanna hear from anyone else,
but if you're somebody who feels
like I am doing this by myself and
I wish I had more support, there
are a few things that you can do.
I think you can ask your care
provider for recommendations.
They usually have some kind of
awareness or they'll send you
to a place and say like, oh, I
know of this support community.
That might even be like
in your local community.
It doesn't even have to be online.
It could be people that meet
up every Wednesday at like.
The YMCA.
Mm-hmm.
And they all have diabetes and
they get to know each other.
Um, so asking your care team, like they
might have a solution or a suggestion
for something that's local to you,
if that even feels really heavy.
That's where I say be a lurker.
Just kind of search around and see like,
you know, the Glucose Guide community
is like a nutrition based community,
so people are really interested in
the foods that they're eating and
how that's affecting their bodies.
And so they might be looking for
like virtual nutrition support
and that's how they found us.
So like think about what you
need, what your needs are, and
seek those things out as well.
Would be a second step.
And then kind of lurk and see
like, is does this feel like a fit?
Does this feel like
something I really like?
Does this feel like it could be for me?
Can I maintain the relationship?
In this community, like maybe once
a week is way too much to meet.
Okay.
And maybe you want something
that's a little bit more low lift.
And so thinking about the resources
that you have, the circumstances
that you're living in, and then like
what's most comfortable to you, it can
help to be able to find a community.
And we live in a world literally
where like we can Google anything.
You could open up your
phone today and search.
Um.
Running base to diabetes group in Yeah.
Duluth, Georgia.
And you could probably
find something, you know,
like, well, and there's an
element of kind of spider
webbing, these connections, right?
And, and what I mean by that is as
soon as you start connecting with a
couple of people, they are gonna have
places they connect with and hang out.
And, and you're gonna start to learn just
from exposure about some of these other
communities and, and that's another.
Very, uh, a good way to, to get
connected is, is talking to other people.
Alright.
If you were to take everything we talked
about today and pick out, uh, I don't
know, one or two things that you want
someone to take away from listening
to this episode, what would those be?
Um, I think the two things that I can
think of are, one, if you don't find the
right fit for community, don't give up.
Like think of all of the people in your
life that you may have dated who weren't
the right fit, but then finally you
found somebody who was the right fit.
Sometimes it just takes kissing
a few frogs to get to the
place that you wanna get to.
Um.
I think the other thing that I would
say is always advocate for yourself.
I know it's something we talked about
kind of early on, but like advocating
for myself, I feel like was the way that
I was able to like build this life with
diabetes that I have and I wouldn't have.
The community that I have surrounding
me, I wouldn't have the love and the
people who care for me and who like are
just like so excited to see me live life.
And that all came from being in a point
of like true despair and true frustration
and still being willing to advocate for
myself and still being willing to speak
up and say, I don't feel like this is
right and I need more and I need support.
Um.
And I like, I think even like putting
those two things together, like we
all need support, like that is just
a part of the human experience.
Like we're not meant to do this alone.
We're not meant to be
in this by ourselves.
And so like advocating for yourself and
embracing community and being willing
to pick up again, even when you feel
like it's failing is so important.
Ah, so well said.
And it's gonna, you know, when you find
the right place, it's gonna give you
exponentially more value than, than
what you ever, what you ever thought.
Yeah.
Um, is there anything that, uh, I
haven't asked you about today that
you want to be sure to mention?
Yeah, I think I just, I have like one
story I wanna end with, and I feel
like it's like the best mic drop ever.
And it speaks to the power
of community in general.
So.
Glucose Guide got this incredible
opportunity last year to be a part
of a campaign in Times Square.
It was something that like I was
so nervous about, I was like, are,
am I even the right community?
Is this even the right
space to be featured?
Why did I say yes to this?
I really wanna do it, but now I'm afraid.
And um, every Wednesday we have a call in
the community and it can be on any topic.
And at the end of the.
Call that we had the week
before I was going to New York
to like see the billboard.
I told the community members who were
a part of that chat and I just said
like, I don't know if I'm supposed to
tell you, but I'm gonna tell you anyway
because I'm really nervous about it.
But I think that you guys will understand.
And there was a community member who
lived in New York City who was like,
tell me what time and I'll show up.
And I, we've never met each other before.
We have only been in
virtual community together.
For a few years.
Like, but like, we are not, like,
I mean like, it's not like a
talk every day kind of situation.
It's like.
I am her coach and I share, you
know, answers to questions when
she asks and you know, whatever.
And so I thought to myself like,
okay, I'll, you know, I'll let the
whole group that's here know, but like
I'm not expecting anyone to show up.
And like the surprise and shock when
I turned around and like she was just
standing there in Times Square and waving
at me and being like, I'm so proud of you.
I cannot believe that.
Like, that's you right
there, like was the coolest.
Moment I think like I could ever
experience because I one never
expected to meet a community member.
Really in person.
Like Glucose Guide is a virtual community
and so like I've always been scared to
do in-person events just 'cause I, I
don't know, it's just like a me thing.
But it, it was so cool that like.
I just, I let them know and I said
like, no pressure, like, don't come.
I was really not expecting anybody to
be there and for them to like actually
show up and to like be able to hug
them in person to be able to like, hear
them like, like they pulled me aside
for a second while I got a break and
they were like, I just wanna tell you
like how, like, I hope you know how
meaningful this moment is for you, but it.
As a community member, it's also so much
more meaningful to me because I spend my
time here and I invest my time in this
community and like I can tell by this
moment that this is how much you care
about it and I'm so glad to be here.
And that was like, I'm like, I said it
earlier, I don't burst into tears or
anything, but like it makes me wanna
cry thinking about it a little bit
because for sure it's like, you know.
The ways that we can connect
with each other, um, and that two
people can start off as strangers.
Mm-hmm.
And then by the shared
experience, you become friends.
You become connected.
I think that is so special.
And I don't think that that's something
that a lot of people get to experience.
And so, like, to me that just, that's like
the, the cherry on the top Absolutely.
Of the ice cream sundae.
Yeah.
To say like.
Community is beautiful and it can be
so uplifting and like even in those
moments where you feel like, okay,
I'm kind of like in this on my own,
somebody will be there to show up for
you to like shake those nerves and to
be like, you got it and like you're
here for a reason and that it like.
Whoa.
That's so cool.
I, I just think
that's
like
the best, an amazing story.
And it's, you know, the shared
experience that we have through
diabetes, it's not like it's an
awesome experience to share, right?
Like diabetes sucks.
And the fact that such great
things can come from that shared
experience of something not so
great is, is pretty powerful.
Well, Mila, tell people where they
can find you, where they can find the
glucose guide community, uh, let people
know where they can connect with you.
Yeah, so if you want like really
delicious diabetes recipes, you
can find them at hangrywoman.com.
And I am the hangry woman
all over the internet like.
If you Google it, you'll find it.
Um, and then if you wanna be a part
of the Glucose Guide community,
you can join at glucoseguide.app.
Um, we have an iOS app, a
Google Play app, and then an app
that's also on the web store.
And then we also introduced.
A nutrition assistant that is a really,
really, really cool feature that is
so fun to use and so eye-opening.
Um, so like community is free, you can
join, use the nutrition assistant and
find out more about the background of
your foods and why they're doing the
things that they are to your blood sugars.
Amazing.
Well, Amila, thank you so much
for talking with me today.
I really appreciate it and I appreciate
you spending so much time with us.
Thank you so much.
It was such a pleasure.
Thanks, Scott.
If this conversation resonated with
you, I hope you'll remember that you
don't have to carry diabetes alone.
Whether that means joining a community,
opening up to someone you trust, or
simply being a little kinder to yourself.
All of that counts.
And if you know someone who might
be feeling isolated or discouraged,
consider sharing this episode with them.
We'll include links to Mila's work
and some of the community resources
in the show notes in case you're
ready to explore that support.
And be sure to tune in
for our next episode.
I hope you'll join us.
Until then, keep living well with T 1D.