Subscribe
Share
Share
Embed
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
How do you react when someone you
don't know very well strikes up a
conversation about your diabetes?
Maybe it's a stranger at the
gym or a random person at the
grocery store who spots your CGM?
sometimes I just, I don't feel up
to the task of explaining it all.
is that just me?
My name is Scott Johnson and I've lived
with type one diabetes for 45 years,
and today we're going to talk about
some ways to handle those diabetes
questions that catch you off guard.
I am here with Anna Sabino.
She's a master's level social worker
and a certified diabetes care and
education specialist, who's also
lived with type one for over 30 years.
She's going to help us handle
this tricky topic today.
Anna, thanks so much for
taking time with me today.
Thanks for having me, Scott.
It's great to see you.
Likewise.
Can you tell us a little bit about
your journey with type one diabetes
for those who may not already know you?
When were you diagnosed?
What was going on in
your life at that time?
That type of thing.
Oh, how much time do you have?
. My name is Anna Sabino.
You know I am coming up on my diaversary
This time of year is always a
little extra special in terms
of the transition to a new year.
My anniversary is January 15th.
It will be 37 years for me,
and I was in kindergarten.
I was six years old.
A pretty sort of
traditional DKA admission.
Six days ICU near coma.
Yeah.
Experience back in 1989, and
I don't really have a lot
of core memories without it.
we certainly have come a long way
and diabetes is always been a very
prominent part of my life for, better
or worse, but for the most part, better.
Yeah, I think we, were
diagnosed around the same age.
I was five years old and,
yeah,
likewise.
I don't have many,
memories from back then.
But what are some of your
first memories of diabetes?
Ooh.
I have one, being in the hospital,
I didn't know what was coming,
but I remember hiding under, there
was a crib in my hospital room.
I remember hiding under a crib.
I had probably been
inpatient maybe 48 hours and.
I didn't want to have my shot.
Yeah.
And I think that was one of my first
memories of, feeling I don't like this.
. And this hurts and I don't want
to have to do this anymore.
And I will never forget.
I will never forget
that feeling of hiding.
. And wanting this to not be visible
and having people come find me and
feeling like I didn't have a choice in
.
In this new part of me, and then of
course, you know the rest is history.
But as a 6-year-old, that was one of
my first kind of memories of living
with diabetes while in the hospital
and kind of starting to process it all.
Yeah, I think we, often just take for
granted how not normal it is to be
stabbed with sharp metal objects and
bleed on things like it's, it's not normal
and it's, totally normal for a young
child to, to be mad and afraid of that.
yeah, that makes sense.
What about getting involved
with diabetes professionally?
I was one of.
People who tried really hard not to
let diabetes take over my worlds.
professionally, I had taken a couple of
classes in high school like health and
community health and AP psychology, and.
I truly feel like attending,
diabetes camp as a counselor.
And then I just worked my way
through the leadership totem pole.
I knew that I wanted to be
involved in the diabetes world
in, some way, shape or form.
And then I decided to get a master's
in social work, knowing there were
so many broad options professionally
in terms of the type of population
and the type of setting, and I.
Purposefully did not pick,
my first year internship.
In the diabetes space.
because I was like, I need
to explore all the things.
Sure.
Worked at a foster and adoption
center and I was just like,
eh, this is really interesting.
But it didn't, draw me in.
And then I saw an ad for St.
Louis Children's Hospital.
because I went to Washington University in
St. Louis for my master's and I was like.
Oh my gosh, this looks amazing.
How can I make this work?
Yeah, so I did some research actually
on a type two study, and I was,
just drawn in, you know when you
have a gut on something and you're
like, yep, this is a good decision.
I also knew that with my MSW, I could
pursue the C-D-C-E-S certification
and being able to combine both
of those has just been a dream.
And now I have created my own
private practice and work with
Gary Scheiner Integrated Diabetes
Services, which is also just.
A huge honor.
Yeah, that's wonderful.
And we're certainly grateful to
have you in the world of helping
people with their diabetes.
What we're talking about today is that
hidden weight of talking about diabetes
in unexpected places and situations,
and most of us don't struggle with what
diabetes is, we struggle more with when,
how, and whether we want to talk about it.
So I'd love to spend some time
today on what this actually
looks like in real life.
Oh yeah.
And now my head is spinning because.
when you think of the word diabetes,
it's a whole language, right?
we could write a dictionary and a
glossary just on all the different
terms that come with diabetes.
that's why we're, when we're diagnosed,
especially in pediatrics, it's two
or three days of, a crash course.
Really, it should be a
lot longer than that.
That's a whole different topic.
And for me, as I've realized really
the last kind of five years, becoming
a mom and trying to parent while
living with diabetes, the biggest
burden is this burden of self-advocacy.
Because as an adult we're always meeting
new people on the train, traveling,
at a child's soccer game, wherever
it is, there's always an opportunity.
To introduce yourself and at what
part does diabetes become a part of
that conversation, and how much do
you expose yourself to the world?
And I think it can be really
challenging to try to slice and dice
who you share what with and when.
Yeah,
there's no, perfect
recipe for how you do it.
I think the.
Easiest thing.
The first step is, always in any therapy,
just like acknowledging that it sucks
and acknowledging that there is this
huge part of invisibility in diabetes
that is there and that it is a burden.
And the more we can talk about it,
whether it is in therapy or in a support
group setting, or with the people that
we know and trust, the easier it can
usually be to allow those feelings to
surface and start to expose yourself.
outwardly and.
Feel comfortable sharing bits and
pieces of diabetes, and that's why
there is so much anxiety and depression
in mental health because if we don't
work on the grief part of it from the
very beginning and we don't process
the feelings of what it's like to live
with this from the very beginning.
It's only going to get harder and
harder the more often we suppress those
thoughts and feelings from the get go.
For everyone, it's different.
Everyone has a different journey.
But to answer your question in this
long-winded answer, there's always going
to be this burden of self-advocacy.
People are always going to ask
questions and how do you figure out
who and when to tell is just a mental
game for the rest of your life.
Yeah.
and it's also, you touched on something
I find interesting in that the process
of dealing with the emotional side
of diabetes, and that's something
that I think for many of us didn't
come along at diagnosis, right?
Because at diagnosis it's a complete fire
drill of learning these critical skills.
And it's almost like those outweigh,
probably rightfully so for a while
anyways, the emotional side of it.
But for so many of us.
The, grief and emotional side doesn't
get addressed until we reach some sort of
crisis moment in that aspect of it, right?
A hundred percent.
I don't necessarily know if I was
diagnosed with like postpartum
anxiety, but as someone who was
not diagnosed in adulthood, I felt
like for me, becoming a mom for the
first time was like my diagnosis.
I was in survival mode, I was
trying to learn all of the things,
but it took me five or six months.
To really process that.
My life has completely shifted.
I could, it took so much more
effort to go to the grocery store.
you gotta change the diaper,
you gotta do all the things.
Has she been fed?
What was the last time?
the, extra thoughts that have to
happen before you just get up and go is
diabetes for the rest of our lives and.
When you're diagnosed as a 6-year-old,
you have usually a parent or two
to be that with you, which is why I
think I spend so much of my time in
practice working with parents on that
transition towards independence because
it is such a, decade long process.
But from an adult perspective.
Sometimes that grievance and that
sort of acceptance piece, for me
it come, it came six, seven months
later . after my daughter was born.
And so many of us, most of the
time when people come see any of
us in private practice, they're,
not diagnosed two weeks ago.
from a therapeutic
perspective, it's a year later.
Oh, we thought we had it all figured out.
We, blah, blah, blah.
Three years in.
Okay.
We finally decided that we need
some behavioral health help.
Yeah.
And it's a shame that we don't have an
automatic behavioral like validator.
Yeah.
Along the bedside when, when, we're
diagnosed as, especially as an adult.
Anyway.
Yeah,
no, it's, it makes so much sense.
I, it's interesting because I feel like
I started to really wrestle with my
emotional health around diabetes at a
similar time in my life where, I was in
my mid, twenties and was just beginning
to raise my own family, and that's
where things started to, I started to
realize no, I need some help with this.
And it was actually a really.
Challenging process to find resources
while you're in the midst of that muck.
I, do feel like it is starting to
turn a corner where there's more of
people like you in the space making a
difference and telling the stories there.
I, would agree and I think.
You can agree with me, Scott, that even
20 years ago, 30 years ago, diabetes
wasn't talked about because there
weren't as many decisions to be made.
Yeah.
We didn't have the technology.
It, wasn't as visible.
It wasn't honestly as a burden.
I didn't feel a burden when I was a child.
My role was to understand what
it felt like to be low and raise
my hand and go to the nurse.
Yeah.
And maybe get some icing or juice
and get to miss class for 10 minutes.
But I will tell you, I did not
think about diabetes during the
school day because I didn't take
insulin and I wasn't allowed to.
I took one shot at breakfast and
one shot at dinner, and most people
diagnosed and managing diabetes,
up until the mid to late nineties.
I know.
Would agree.
Yeah.
I.
Definitely agree.
The level of micromanagement today
is much, much different than it
was, and thankfully we, I think
we're seeing the ability at least to
manage blood sugars at a much safer
place than we were 20 years ago.
I agree.
But there is a, cost there.
The other thing that comes to
mind for me is, you describe your,
childhood, and I think there's this.
Sort of beautiful,
ignorant resilience, right?
It's like I, when I was young, I
just wanted to do whatever I had to
do with my diabetes so I could get
back to playing with my Hot Wheels
and GI Joes or whatever it was,
gi Joes love it
at the time, right?
and so there, there is that, but when
we think about discussions now, right?
I've had moments where I, get into a
discussion and I walk away thinking
oh my God, why was that so draining?
and I think part of it is sometimes
those discussions come at us when
it's not always in our control.
Like maybe some, somebody sees a device,
a CGM or a pump site or something
and ask questions where it wasn't.
Up to me whether to start
that conversation or not.
Do you think there's something there
and, do you hear about that from others?
There are always going to be people out
there who are going to have questions.
There's always going to be people
who are curious, who want to help.
And what I have, my word for this
year is just like intentions.
And I truly believe that most people, I'm
going to say most people in this world.
Have the best intentions when it comes to.
Having conversations with us,
whether it is a stranger on the
street or somebody at the gym that
want is just making small talk.
I'm sure I have been on the other end of
it asking a question to somebody else.
Sure.
And they're looking at me like I have
five heads and, it's the other way around.
Yeah.
diabetes is.
One of the most invisible
like illnesses out there yet
requires the so much thought.
Yeah.
But when we're entering in these
conversations, whether it's
in the community, whether it's
with school, whether it's work,
we control our own destiny when
it comes to how we respond.
we can't control someone else's thoughts
and what other people say to us.
The only thing we can do is.
decide how we respond back.
And sometimes we do it outta spite
and we're just like in rage mode.
And we say things that
maybe we regret later on.
But going back to your thought
about this built in resilience.
I think because we don't, we didn't
grow up with all this technology, I
have this mental ability to wait to
wait without the CGM to trust that
the food is going to bring my blood
sugar up and to be calm, cool, and
collective when I speak to adults because
I just know that they have no clue.
And let's dig in on those
feelings a little bit.
So I, think it's actually, we
are strange in that we have a
community of people that around us.
It's a weird with type one.
It's a weird cult, Scott, you can call
it that.
It's, I know, The
cult.
No one wants.
To be in
the
club.
No one wants the club,
no one wanted to join.
But I think a lot of people listening
maybe are feeling pretty alone with their
diabetes and maybe a good place for us to
start is validating some of the feelings
they might experience and labeling some of
those feelings that they experience when
they encounter one of these conversations
that maybe didn't go the way they wanted
to, or they, felt a certain way about it.
Yep.
What are some of the, feelings
that people might experience there?
I think one of the first ones that we
could probably all relate to is someone
making that very well-known comment.
Oh, is that an insulin pump?
My grandfather has that.
Or, oh, you have diabetes.
it's like the assumption.
Yeah,
the assumption piece of it, and this
just comes down to basic communication
skills and I think another feeling
we can all relate to is just fear.
We don't know how to react when,
we, put so much effort into trying
our best, and when someone makes
a comment, that might mean that we
might not be putting in the effort.
That's what hits, that's what hurts.
Yeah.
I think that's why there's so much anxiety
around going to see our endocrinologist.
Sure.
Because the data doesn't
necessarily represent the effort.
And, it's a lot easier to talk
about quantitative data than it is
qualitative because it's just, it's,
easier to download, it's easier
to analyze for a lot of people.
Yeah.
I will leave, I'll leave that
there because I think that
second point is pretty heavy.
when we talk about the effort that it
takes and that effort isn't visible, that
is where a lot of the shame and I think
blame comes into the conversation that is
internalized from people with type one.
And That is why diabetes is so
just relentless and demanding.
And half the time, these numbers
just are the way they are from
like a biological perspective.
it's not our job to figure out why every
blood sugar shifts the way it does.
we, that is just, it is impossible.
And I think until we can accept
that it's really hard for people
to feel confident in having
this, these self-advocacy skills.
which is why I'm such a huge proponent
of mental health because until we can
process that, it's really hard to then
feel confident explaining to other people.
And other people are always
going to have questions.
Yeah.
This is a great time to take a quick
break and then when we come back,
we're going to start talking about
some of those practical tools and,
what we can do to deal with these.
So we'll be back in a second.
One of our favorite things is
sharing stories from people who've
participated in the Blue Circle Health
Program, and I have one here from
Helena
in Ohio.
Hello, my name is Helena
and I was diagnosed in 2018.
Since my type one diabetes diagnosis,
I have struggled in a variety of
areas, including grieving what
life was like prior to my diagnosis
at 18 years old, struggling to
navigate the ways this change had
impacted my identity, and uncertainty
surrounding navigating insurance
and medical care as a young adult.
I initially chose to enroll in
Blue Circle Health seeking support
from their insurance navigators
as I was frozen in fear when it
came to navigating the terrifying
world of health insurance and T1D.
Little did I know I
would gain so much more.
Not only did I feel more confident,
understanding and navigating insurance,
but also received mental health support
related to my T1D that I hadn't even
realized I needed, tips and tricks on
managing my blood sugar effectively,
resources to support myself and
my other T1D family members, and
endocrinology services that allowed
my blood sugars to reach time and
range I had never experienced before.
Every member of my team
was truly a blessing.
I've never felt so cared for, seen or
supported in my T1D management journey.
I've been telling every T1D I know
about these services and I'm so
thankful I was able to discover the
services at the time I needed them most.
Thank you, blue Circle.
Helena thank you so much for
sharing your story with us.
I also want to make sure
everyone listening knows
about the CWD Journey Award.
And listen, there's no sponsorship here.
This is not an ad. They
don't even know I'm doing it.
I, this is just me helping share
some great programs from great
organizations to all of you listening.
The CWD Journey Award recognizes
the work and resilience required
to live with type one diabetes.
You can request a
journey award at no cost.
They'll even cover
shipping to us addresses.
You can learn more at
childrenwithdiabetes.com and
look for "Journey Award" in the
navigation menu on the website.
Welcome back.
So we've talked about why these moments
sometimes feel so hard, what we're
feeling, and, now I want to spend
some time really focusing on, in, on
what people with diabetes can actually
do when they're put on the spot.
Absolutely.
So it, first of all, you don't
owe anyone anything when it
comes to sharing your diabetes.
I think there's a, time and a place, you
can write down in a journal or a notebook,
an elevator speech if you have a lot of
social anxiety and have a hard time, with
public speaking or just communicating
with adults in general and you're just
are a little bit more of an introvert.
Sometimes practicing on a partner or
a loved one can be really helpful.
I think therapy, again, I know I'm
a huge proponent of it, is a great
place to start because oftentimes it's
a neutral way of getting everything
out and it's an opportunity to
practice saying the wrong things.
So when those conversations do arise or
you are potentially caught off guard.
You already know what those feelings
are and have already gotten them
out and surfaced to the point
where you may not have those like
rage, eff you type responses.
You don't know what you're talking about.
You also have full permission to say.
Thanks so much for your question.
I'm really having a bad day and I don't
want to talk about my diabetes today.
What do you tell people who, worry
that maybe these, semi prepared
responses feel fake or rude?
It's a balance.
There's part of it that's like having
them ready helps alleviate some of
that stress, but then there's also the
concern about how, they're received.
Yeah, a hundred percent.
And like people are allowed to feel
whatever they want to feel, right?
like someone can say, oh, like I
really hate the dress you're wearing.
Like they're allowed to say that.
The only thing we can control is
our reaction and what we say back.
And Again, you can practice the role play,
you can practice reading books like, oh,
that was a really like annoying response.
what the heck?
I wasn't expecting that to
happen, and that's the, I
wasn't expecting that to happen.
mantra is what I use a lot.
Diabetes has a lot of ups and downs
that we don't necessarily plan for,
like a site ripping out on a doorknob
or a blood sugar in the middle
of a soccer game, whatever it is.
You can't plan for that,
a lot of the time, wasn't
expecting that to happen today.
And instead of being like, err, all
of this sort of, physical rage that
comes with it, oh, take a step back.
Wasn't expecting that to happen.
Oh, if it becomes, like a
three day pattern, sure.
I make some, basal bolus adjustments,
but, and the general rule of thumb.
Oh wow.
Wasn't expecting that to happen.
And if you can find something else in
your life that's not diabetes related that
you can practice with in terms of that
is Potentially ah, you weren't expecting
to get pulled over or like something with
a red light or like you're running late.
those are usually more frequent that
are relatable with other people that
you can have those conversations with.
That can also just help your neural
pathways adjust to some of those
like initial reactions that you may
want to, pull out of your head when
you're in fight or flight mode.
It sounds like that though, that
using that e example of, oh, I
wasn't expecting that is a, it's
a useful reframing tool, right?
That can help you just get some space
between what's actually happening and
the emotions that we're attaching to it.
Absolutely.
And, that's really, the mantra
of two things can be true.
someone's allowed to you.
You can still feel annoyed that someone's
saying something to you and you don't have
to respond, back with, hurtful comments.
Yeah.
but
where does self-compassion
come into this, right?
Because that's also part of
the, picture as well, isn't it?
always and self-compassion
is something that takes time.
When it comes to diabetes, it is
a huge lifelong healing journey.
When we have something like diabetes
that has no end, I'm doing the best I
can, is something that I try to tell
people to write down, like pen to paper.
I'm doing the best I can.
And maybe having this response,
this like err rage response,
no, I don't need a granola bar.
That's not helpful.
Maybe that was your best
response in that moment.
Yeah.
And that's okay.
That's okay.
Yeah.
I think the sort of red flags for
concerns for me are usually when.
others start to notice some of this,
rage behavior or personality shifts.
when there is a pretty.
Pa, pretty big pattern of Change
in behavior or shift in behavior.
And you, there's no other
sort of explained reason why
from a medical perspective.
it's so important to process all of
your emotions early and often when it
comes to diabetes, because the more you
understand yourself, the easier it's
going to be to talk about it outwardly.
When you talk about shared decision
making, if I think about a scenario where
maybe it's someone who's single, they're
an adult living by themselves with type
one diabetes, where might they turn?
It's, a different scenario dealing
with a family or young children.
are you thinking like their healthcare
team and, finding community and
others living with type one?
What comes to mind there?
Absolutely.
I have a love hate
relationship with social media.
There are so many opportunities
to join community groups and
chats and, breakthrough to Wendy.
Your healthcare team should have a
list of resources, both locally and
nationally and online to work with
you to find that community support.
I will say they're only as helpful as you
allow them to be, from an online support.
perspective, I've seen a lot
of challenging conversations
online when it comes to diabetes.
So I always just recommend
proceed with caution.
Yeah.
if you find that the online
community support is not being
helpful tool for you, take a break.
Yeah.
podcasts are a great, because it's
audio, you can process and highlight.
take away the highlights in
terms of the take home messages.
Everybody who's listening to this is going
to be like, oh, that was a total waste.
Or,
or have, something that
really hit home for them.
Yeah.
or not.
I think some people are going to
find support in reading books.
Some people are going to find
support in one-on-one therapy.
Some people prefer group.
Therapy.
So I think it's knowing your own
self, knowing your own identity, your
personality type and what does that look
like when it comes to letting people in?
Yeah, and it's a, just another
great example of how individual
all of our diabetes is.
as we start to wrap up here, what
are a handful of takeaways that
you want to be sure someone thinks
about as they leave this episode?
Yeah, I think, the, first
one is You are your own team
captain of your diabetes ship.
when it comes to sharing information,
you are the captain of your own ship.
You don't owe anyone anything when it
comes to your own sort of self-advocacy.
Number two, safety and
progress over perfection.
there is no, right now, there's no
finish line when it comes to diabetes.
Continue to celebrate those little
wins and there will be ebbs and flows
in your mental health, just like there
are in, physical diabetes management
with your time and range and A1C and.
The more that you can get in touch
with what are your triggers from a
mental health perspective, how can you
identify what is going to set you off?
Is it a high blood sugar For me?
I know I'm like moody af when my blood
sugar's over 300 and my husband can
tell, he is what's your blood sugar?
And I'm like, oh yeah, that, that.
so really just.
Be mindful of your, mental patterns
as you're going out in the world.
oh, my blood sugar's high, maybe
I'm going to be A-B-I-T-C-H to the
crossing guard if they don't let my
kids cross the school and they're
out late for Yeah, their first class.
so just being, mindful of that.
And then I think the third one is really
just, don't wait to reach out for mental
health support because even as someone
who has lived with it for 37 years.
I struggle internally with my
own burden of self-advocacy, and
I do only wear my CGM on my arm.
I do let my, tubing of my T
slim, like dingle dangle out.
And like even at the gym this morning, I'm
like, oh, these are a bunch of new people.
they didn't ask, but I
wonder what they're thinking.
I moved on, but.
The more I can talk about it in a neutral
way, the more comfortable and confident
and like relaxed I'm going to feel.
I know the next time I might encounter
someone who might say something.
It's, it just allows you to take a
deep breath and process it where if
you don't, the likelihood of you saying
something that you may regret or.
Not knowing how to process it.
You don't want to process it with a
stranger and take it down a rabbit hole
that you do regret, practice with a loved
one or a friend, or in a coping strategy
that you feel safe and comfortable doing.
Yeah.
I love that.
Is there anything that I haven't
asked about that you think it's
important for people to hear today?
I don't think so.
I think, again, it's just, please don't
be afraid to ask for mental health help.
I, really, truly believe that
the stigma around mental health
has shifted and it should be a
priority as part of a care team.
And there are so many
people out there who will.
Meet you where you are from
a financial perspective.
and it doesn't have to be a social worker.
It can be a coach, it can be
a dietician, it can be, mental
health has however you perceive it.
So as long as you have a relationship
with someone that is going to boost
you up from a mental health perspective
as it relates to your diabetes.
I'm happy.
Anna, thank you so much
for talking with me today.
Yeah, thanks.
I really appreciate it.
Where can people find you online
if they want to connect more?
Sure.
Yeah, so I have a website I work
with parents, kids, families,
adults, young adults with type
one finding smiles coaching.com.
Thanks again.
This has been wonderful.
Thank you, Scott.
Take care.
If you enjoyed this episode,
think about leaving us a review
and subscribing to the podcast.
You can also check out the video version
on the Blue Circle Health YouTube
channel, and be sure to tune in for
our next episode where we're going to
spend some time talking about exercise
and activity with type one diabetes.
With Gary Scheiner, exercise physiologist,
author of one of my favorite books
on diabetes, Think Like A Pancreas,
and as Anna mentioned, the owner and
founder of Integrated Diabetes Services.
I hope you'll join us.
Until then, keep living well with T1D.