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People with type 1 diabetes fight two wars: one against a relentless 24/7 condition, and another against a healthcare system that makes it difficult and expensive to stay alive. 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. https://bluecirclehealth.org
Holiday season is approaching and
it's supposed to feel happy and
joyful, but for a lot of us living
with Type one diabetes, myself
included, it feels just playing hard.
My name is Scott Johnson and I've
lived with T 1D for 45 years,
and today on around the circle we
are talking about navigating the
holidays with Type one diabetes.
You know, for all its promise of joy,
happiness, the holiday season sure
feels trickier than it should for
those of us living with T 1D, and it
turns out there's good reason for that.
So much changes in our routines and
schedules and without some preparation.
It can really trip us up.
So we're gonna dig into that and
talk about how we can set ourselves
up for success this holiday season.
And our guest today is Eleni Shean.
She's an A PRN here at Blue Circle
Health, who also has lived with Type
one diabetes for a little while.
Eleni, can you tell us more about
yourself, your experience with diabetes
and your role in the organization?
Yes.
So I have lived with type one for.
44 years now, I think
I kind of lost count.
I have worked at.
The University of Florida as, uh, in
the adult endocrinology group, and then
I moved over to the peds endocrinology
group and from there we, I was doing Blue
Circle Health and, and Peds Endo, but
oh my gosh, blue Circle Health one, yes.
Had to come over here.
And my role with Blue Circle is.
As a nurse practitioner, part of
the clinical care team and one of
the endocrinology, um, providers.
So, um, I work closely with
Dr. Gomberg and Dr. Co.
All right, Eleni.
Let's, let's talk about why
the holidays feel like this.
I mean, I wanna be, I wanna feel
happy and joyful and, and I do,
but I also get really stressed out.
And a bit anxious, like, what
the heck is happening here?
And am I, am I the only one feeling this?
What's, how do you feel
around the holidays?
I think I'm already feeling some of
the, um, anticipatory, um, anxiety
and excitement at the same time.
Um, no, Scott, you're not the only one.
I think, um, it, it's sometimes hard
not to, um, holidays are so wonderful
we get opportunity to celebrate
things and spend time with family
and friends, but at the same time,
it's something that is completely
different than what we normally do and
with people that we don't always see.
And there's just the
potential for, for things to.
Not go the way we want them to.
Yeah, and I think we always have this
like in, at least in my mind, what
I imagine is this picture perfect
movie esque holiday experience.
I don't know why I stick with that.
It's never happened.
There's always something goofy with it.
And you hit on some big ones, right?
We're, our routines are messed
up a bit and we're seeing a bunch
of friends and family that maybe
we don't see all that often.
Is that really where most of the.
The source of the, this
anxiety and stress comes from.
So I think those are two of the big ones.
But then there's also, of course, how
is my blood sugar gonna gonna respond
to these foods that I'm going to eat?
Or maybe I'm not going to eat them.
And then how are the people gonna
respond and judge me for not doing that?
Or how is my device gonna
beep when everyone is.
Is quietly, you know,
uh, yeah, it's, yeah.
So there's a lot.
But I think food and wanting to still
maintain, um, you know, really are,
are great glucose levels during the
holidays and sometimes that can be
a at added stress for some people.
Is it realistic to wanna maintain
as good of management with our
blood sugars as we do the rest
of the year during the holidays?
I think it's a choice, and I think
it's a choice that you can decide
what is, what is most important to me.
And if someone, if, if their
choices, I want my time in range
on Thanksgiving Day to be 90% and
no less, okay, that's your choice.
Go for it.
But if somebody says, I wanna enjoy
this pumpkin pie and time with
my family and to be able to just.
Sit and, and enjoy this moment.
I love that.
Are there any, any holiday memories that
really like stand out in your mind as
in terms of your diabetes management?
Like times you either were, it was a
complete train wreck, nothing went to
plan, or on the other side of that coin.
Well, you, you really nailed it.
Okay.
Train wreck.
Of course.
I picked the train wreck.
Um, so, so, yeah, so, you know, you
know, I've, I've been doing this
since 1981, so things have changed,
but sometime in the nineties.
I guess I had been, I was living,
um, a few hours away from home and
was coming home for the holidays.
Um, you know, drive, driving home,
um, I think it was like Christmas
Eve or Thanksgiving Eve or something
like that, you know, doing my normal,
it was multiple daily injections,
doing my shot for dinner or whatever.
Get ready to go to bed.
Oh my god.
I don't have my long acting insulin.
It's not with me.
I don't have it.
What?
What?
You know, what do I do?
And of course, I'm like in my
early twenties living on my own,
wanting to show Mom I can do this.
Right?
And then I got it.
I forgot it.
So then I had to involve her and
then we had to like try to find
a 24 hour pharmacy and, or we had
to try, I don't even remember.
Well, it ended up being fine.
It, I, I felt like a failure, you know?
You know,
that's a, it's a great example of.
You know, there's, there's kind of the,
the mechanical aspects of everything
that we do, but then there's also
all of this emotional baggage, right?
And what stands out to me about that
story, Alenni, is that you don't even
remember how you actually managed,
like, how you got through that.
What did you guys do?
What, you know, uh, was it a
bunch of taking your rapid acting
insulin every two hours or like.
Uh, but what you do remember is how
that made you feel in that relationship
with your, you know, this newly
evolving relationship with your mom.
What about the people that
you treat as a clinician?
Do you hear from them that this
is also a challenge for them?
And how do you, how do you
talk with them about it?
And what do you, what do you advise?
So, what I usually do with everybody,
regardless of holiday or whatever
time is let's, let's look at
and celebrate what you're doing.
That makes you feel good, right?
Yeah.
Let's celebrate that, that day
that you didn't have any lows.
Not a single even dip near 70, right?
And you, that was your goal, you
know, or, or whatever that is.
So let's look at that, and then if there's
some anticipatory anxiety around numbers,
let's say, or how am I gonna deal with
certain foods and that kind of thing.
Let's just reflect on those
times that we've done it and
we've done it successfully.
And we've done it really well
and know that we can do it.
But then alternately, you can look at
the times, oh my God, my pod failed.
It fell off.
I went up to a hundred,
400, and I felt like crap.
And then I had to do this and fix it.
But you know what, I figured it out.
I, I did all the
troubleshooting I needed to do.
I, okay, so I know that whatever
happens, I can handle it.
And I'm gonna enjoy this dang holiday.
Gosh, Jordan, right?
Yeah.
So I, I think just thinking about that
I can, I can do this, I can handle this.
And acknowledging that can often
help just minimize some of that.
Um, anxiety you might be feeling.
I, I think that really sounds like
such a wise approach to it all
because you're, you're tackling
a couple of big things, right?
Like one, I think starting with what's
going well is always anytime we can start
with our, our, the way we think about
our diabetes and diabetes management
from a place of positive energy, that,
that makes such a big difference.
But then, you know, we're also
acknowledging that hey, sometimes.
Sometimes it's a hot mess and things
happen and, and we may not be able to
control everything that's happening, but
we also somehow manage to get through
it and do pretty well through that too.
So
there are some people that can do that.
And then there are other
people who need a plan.
I think it just depends on, on
personality and if someone is someone
who I need to know that if this is
gonna happen, this is what I do.
Okay.
Well, let's, let's, let's make that plan.
Let's just imagine this could
potentially happen and then we're
gonna come up with a plan and I'm
gonna text it to you and you're just
gonna look at that text message.
You're gonna have it right there.
You're gonna, you know,
you're gonna feel okay.
You're gonna feel supported and
it's, it's all gonna be good.
Um, so it just depends on the person
when you're talking about building
plans for those that are planners
and need that, that structure in
their, at least in their mental.
Realm.
Right?
Where do you stop?
I think diabetes.
Diabetes sets us up like, and, and we,
we become so good at this that it's
almost subconscious, but we always
have a, like a plan A, B, and C. As
soon as we wake up for the day and get
ready to walk out the door, we have
to think about, alright, what is the
worst possible thing that could happen
to me and how do I deal with that?
Okay, well I'm gonna have my backup.
Um, pump supplies.
I'm gonna have my backup
insulin, I'm gonna have my
pen, I'm gonna have my basil.
I'm not gonna forget my basil.
This time.
I'm gonna have my meter just in case.
I'm gonna have like, you know,
whatever I'm using for le glucose
tabs or whatever, I'm gonna have this.
I'm gonna have that.
And yeah, I'm gonna be ready.
But still, something
could go wrong, you know?
And, and then you just learn and you think
about, okay, all right, I can handle this.
And I know how to do it.
And one of the things that I just
remembered that I, I, someone was
talking about it, she was like, I'm
really worried that my alerts are gonna
go off, you know, and they're gonna
bother someone, or someone's gonna
start asking me about what's going on
and I don't really wanna talk about it.
Like.
Okay, well let's, let's
just change your alerts.
Let's do it.
We're gonna set the high alert at
two 50 and that's gonna be fine.
So there's ways that you can plan
ahead that are, that are, you know,
all sorts of, whatever suits your
concern, we can figure it out.
Oftentimes we.
Maybe we're seeing extended family or
friends who we don't spend much time
with, aside from the holiday gatherings.
That can also create some strong emotions,
uh, and strange, strange conversations.
Uh, have you ever had to deal with any.
Any family people that are like,
okay, this guy's a little bit
off, but all right, here we go.
Short answer is yes, absolutely.
I don't know anyone who has not.
In fact, Scott, I think I recall you
have an uncle that you have that.
Do you wanna tell us the
story about the uncle?
You know what?
So this is the first story that
pops into my mind is Uncle Everett.
And Yes.
Him that,
yes, right.
Uncle Everett.
I would see him once a year at
the, at the holiday gatherings.
And he was one of these, like,
he was the entertainer, right?
Like, and of course I love
him, he's great family.
But when I was the source of
his entertainment or his topic
of conversation, it was, it was
really uncomfortable for me.
And I can, I still remember, uh, one
time, you know, I was married, we had.
Both of our kids were, were like, were
arriving at the family gathering and it
was one of these houses that, you know,
you open the front door and you kind of
dumps you right into the big living room.
Everyone's there as we're kind
of peeling off our Minnesota
winter jackets and stuff.
Uncle Everett, he says, Scott, do you, do
you have a problem with food or something?
And.
I had no idea what he was, you
know, like where this was coming
from or what angle he was taking.
And I'm like, oh my God.
Like where do you want me to start?
Like, type one diabetes is
all about problems with food.
Like, uh, how much time do you
have, kind of thing, right?
But it also made me feel really.
Self-conscious and uncomfortable,
and I don't remember how I handled
it exactly, but I do remember how
it made me feel and it wasn't great.
And so I, I think I just mumbled some
kind of something under my breath
and moved on with things and then
just avoided him the rest of the.
The rest of that holiday.
And also, uh, from the holidays forward,
I would kinda, I don't know, I'm like,
before I walk into a place or a room,
I'm looking to see like, all right,
where is, you know, where is he?
Absolutely have people
like that in my family.
And how do we kind of minimize
those feelings of, oh, that
person's gonna be there.
I hope, I hope they don't say anything.
Is that, what can we do?
Maybe to, to.
Plan in advance to a, to
recognize that most people are
coming from a place of love.
They really are.
And to try to, to, to reframe that and,
and think about it that way and try
to respond also from a place of love
sometimes that in, like anybody tells
me you're diabetic, you can't eat that.
I want to immediately attack,
you know, anytime our
emotions are involved.
We're kind of wrestling between
our, our lizard reactive brain and
our logical like frontal brain.
Right?
But just saying things like, um.
Uh, you know, thank you.
I, I know what's best for me or thank you.
I'm choosing to have this
right now, but I'll be fine.
Or, um.
You know, taking, taking, or, thank you.
I'm
choosing to, to not have this right now.
Yes.
You know, and I'll be fine.
It depends on, on what angle your family
or loved one's coming at you with, right?
Are they pushing food on you or are
they scrutinizing what your, what
your, what choices you're making.
And both of those, I think are
equally difficult and challenging.
Equally difficult and challenging.
And, and we don't wanna be avoiding
Uncle Everett at every holiday gathering.
Sometimes I, I always, I think
of like great things to say,
but it's like hours later.
So coming up with some
phrases to say in advance.
Is really, really a great plan.
So I'm comfortable with my choices.
Thanks so much for caring.
You know, this is how I take care
of my health, you know, making these
choices to not eat that type of thing.
Or, you know, maybe you could
somehow turn it into a joke.
I don't know if there's a way to,
to just kind of play it as, as.
Find humor in the situation.
There's also the, the opportunity
to really turn it into an
educational moment, right?
Like, oh, you know, well let me, let me
break down what's actually going through
my head as I build this plate of food.
Or as I say yes to this or no to that.
And like, um, oh yeah, I can
see why you might believe sweet
potatoes are bad for me, but they're
actually much better because of.
The lower glycemic end, like bring
them into the thought process a little
bit and see what their reaction is.
Some of them I think, will be very
overwhelmed and surprised by just how much
we have to think about in those scenarios.
And I think there are some people who may.
Start with a comment that we
feel is a little bit not so nice,
but it's, it's, it's a way of
expressing interest and care.
And so if we can engage them and
involve them in that thought process
as you suggested, then that's a way of
bringing them in and, and developing
a little bit of a closer relationship.
So I think that's a
great suggestion, Scott.
Are we alone in dealing with this
or do you also hear, hear these
concerns or stories from the people
that you see as a, as a clinician?
It's fear of being judged sometimes.
Yeah.
Or of someone trying to tell you
what they think you should do
when they don't really understand.
And those are the most common,
common things that I hear.
You know, people anticipating
challenges with families.
I do have a, another story that kind of
counters the Uncle Everett situation, but
I, another, an aunt of mine, aunt Sharon,
I remember as I was growing up, she, she
wanted to, she was curious about how she
could help me and how she could support
me, especially around family meals.
And she was also very conscious about.
Not making me feel the center of attention
or, or special, like she didn't cook
special dishes, but she, she really
took some time to talk with me about
what are the things that, that would
make my life easier living with diabetes
that they could do, uh, at their meals.
And, and I'll never forget
that that was such a, like, I,
I still treasure that memory.
And it's a good example of just
how special it can be when someone
takes a moment to just kind of step
back and think a little bit and.
And engage a situation from a
more of a curiosity and loving
standpoint with some of that
additional communication foresight.
Right?
Communication is, it is just the
key to, to fostering relationships
with our families, and sometimes I
would often take the stance that you
would with Uncle Everett, which would
be to just kind of avoid and hide.
But taking the time to interact with
our Aunt Sharon's and really communicate
about how, how much does this means to me?
And it can, it can be great.
So yeah, it can make our
holidays even more special.
Yeah, absolutely.
I do also wanna point out too, that there,
there can be times where we have, uh,
aunt Sharon, who is curious and wants to
engage and, but we just don't feel like
thinking about it or explaining every
nitty gritty detail of our lives, um, to
someone, because there's, that's a big
emotional draw in doing that as well.
And so we've, we've covered a lot.
Let's.
Let's just take a quick break
before we dive into that because
I wanna spend some time on that.
One of our favorite things is sharing
stories from the people who participate
in the program, and I have one here
from Michelle, who's been living
with type one for over 40 years.
Hi, my name is Michelle and I've
been living with type one for.
41 years and I've been on various
pods or insulin pumps, MDI when I was
younger, I'm Italian, so food is love.
And you know, we, like many people,
I'm sure during the holidays you graze
through multiple sections of food and
just remembering to bolus in time.
Usually I'm cooking too.
Uh, so remembering to watch my blood
sugar so it don't tank, and then
you've got the rebound and um, and then
remembering to be present and enjoy it.
Working with Blue Circle Health has really
helped me build my skills to get through
the holidays, whether it's pre bolusing,
remembering to do the right thing.
Eating, drinking, it's
almost like a present.
So you have that mental health, you
have the medical health, you have
the support, you have everything.
And everybody at Blue Circle
Health is so passionate about what
they do and so easy to work with.
Um, I think I am going to be successful
this holiday because of Blue Circle.
Michelle, thank you so much
for sharing your story with us.
Let's dive back in.
So there's actually a word or a
phrase for this aspect of people who
are kind of doing this thing, right?
We, there's a phrase
called the diabetes police.
You know, it's those, those people
who scrutinize everything you put
on your plate and everything, every
decision that you make, thankfully.
Uh, there's a great resource out
there that we can lean into here.
Uh, it's from Behavioral
Diabetes Institute.
Uh, and this is a booklet that you
can download on their website for
free, which talks about specifically
dealing with the diabetes police.
And we'll be sure to have a link in
the show notes and, uh, I'll describe
where you can find it on their website.
I'm gonna paraphrase here, but the main
ideas are that, you know, your friends and
family may feel like it's, uh, their duty
to help you, whether you like it or not.
Eleni, as you mentioned, they are.
99% of the time acting out of concern
and love and worry, it can leave you
feeling pretty frustrated or even hurt,
and sometimes it can even cause you to
rebel and, and act exactly the opposite.
And so this, this resource from the
Behavioral Diabetes Institute says to try
and redirect their attention by letting
them know specifically how they can be.
Of real help and there are many, many
more nuggets of information in there
and I encourage you to check it out.
Uh, again, you find it on their website,
which is behavioral diabetes.org,
and there's a little menu where
you can find a section called Print
Materials and uh, you'll be able
to, to find this resource in there.
I think that is super helpful.
Diabetes police.
You know, police are there to
protect, to protect and serve, right?
So I'm sometimes thinking of it that way.
And, and, and I think also sometimes
it's okay to, to tell someone, Hey,
you know, when you say that to me, I, I
feel a little bit like, like, like this.
And, and that's, that's sometimes
it's good to, to let somebody know
in a, in a very non-threatening
way that, Hey, this is how I feel.
Let's, let's redirect this feeling
to something that we can enjoy, you
know, enjoy, enjoy our time together.
So yeah, redirections good.
Alright, listen, we have covered a
lot of helpful information today.
Holidays are a very short ti special
time of the year, and your glucose
levels do not have to be perfect.
In fact, why don't you just redefine the
idea of perfection at the holidays, right?
And that can be whatever suits
your needs at that moment.
So it's okay to just kind of let it slide.
Lenny, before we go, I'd like
to ask you a question that I
ask every guest on the show.
After all these years of living
with diabetes and working in
diabetes, what is one thing that
still surprises you about T 1D?
I think what's still always
surprises me is that it's different
every single freaking day.
It's just, it just, it always surprises
me how my body reacts and, and behaves.
That's a great answer,
and I feel that 100%.
Well, Eleni, thank you so
much for coming on today.
Thank you, Scott.
It's been really fun.
There are a ton of incredible
organizations out there doing great
things for and with people with
Type one Diabetes, and part of
what I like to do in each episode
is just take a moment to shine a
light on one of these organizations.
For this episode's Community Partner
Spotlight, I wanna highlight Diabetes sga.
Diabetes SGA specializes in
mindfulness and other meditation
practices for people with T 1D.
They aim to bring meditation practices
and perspectives to the forefront
of conversations around living
a healthy, happy life with T 1D.
And for me, mindfulness can be a great
way to cope with the stresses of T
1D, especially during the holidays.
So I encourage you to check out
one of their free daily meditation
practices@diabetessga.com.
That's diabetes.
S-A-N-G-H a.com.
If this episode resonated with you,
share it with a friend who struggles
with navigating the holidays in T 1D.
We all need to know
we're not alone in this.
And then be sure to tune in for our next
episode where we're talking more about how
it shouldn't be this hard to stay alive.