September 23, 2025 • 33 mins
In Episode 53 of Think Like a Pancreas—The Podcast, Integrated Diabetes Services clinicians Kristi Paguio and Dr. Paula Diab discuss the invisible burden of living with diabetes and the vital role of self-advocacy.
Kristi shares her experiences as both a patient and a clinician, while Paula provides insights as a doctor. Their conversation highlights the need for better education, preparation, and understanding when working with people with diabetes, as well as tips for both medical staff and patients.
MEET YOUR HOSTSDr Paula Diab PhD, CDCES is a Family Physician and Diabetologist who runs a multi-disciplinary practice specializing in the management of chronic diseases, particularly diabetes and obesity in South Africa. Her approach is to walk the journey with her patients and to allow them to manage their disease rather than allow the disease to define who they are. She earned her undergraduate medical degree from the University of Cape Town in 2000 and then returned to her home province of KwaZulu-Natal to establish her career and continue her post-graduate studies. She is certified as a Diabetes Care and Education Specialist in the US.
Despite carrying the burden of being the only member of the IDS clinical team without type 1 Diabetes, her skills and passion for diabetes care & education are exemplary (she did successfully manage her own gestational diabetes during her pregnancies).
Kristi Paguio LMSW, CDCES, CSOWM is a licensed clinical social worker, diabetes care and education specialist, and certified specialist in obesity and weight management. Kristi has been working in the field of diabetes since 2007 and has had the privilege of working with people across the lifespan who are impacted by diabetes. She has experience working with adults, children, athletes, pregnancy, and weight management.
Kristi was diagnosed with type 1 diabetes in 2000 and has specialized in the mental and emotional aspects of diabetes since that time.
WHAT YOU’LL LEARN:✔️How much diabetes training many medical professionals receive.
✔️Tips to make the most out of your next diabetes appointment.
✔️ How to shift your mindset when managing your diabetes.
✔️The importance of context over data for physicians.
CHAPTERS00:12 Welcome and Introductions
01:49 The highlighting the invisible burdens of diabetes
02:31 The barriers a person with diabetes faces to manage their care
05:28 The reality of diabetes education for general physicians
06:31 Navigating a perceived lack of empathy in diabetes care
08:30 The role of self-advocacy in diabetes management
10:12 Clinician anxiety
10:31 Words matter when talking to patients
13:05 The healthcare system is not set up for chronic illness management
15:38 How to get the most out of a visit with your clinician
19:44 Creating an advocacy team to help when you can’t
23:42 How to improve conversations with healthcare providers
RESOURCES MENTIONEDDiabetes is the ULTIMATE Ultramarathon
CONNECT WITH US🔵Website: integrateddiabetes.com
🔵 Follow on Social Media: @integrated_diabetes_services and @ integrateddiabetesservices on Facebook
🔵To work with the Integrated Diabetes Services Team , visit https://integrateddiabetes.com/how-to-start-the-process/ , or email info@integrateddiabetes.com
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Also, leave a review to let us know what you think, and share this episode with others who will enjoy it as well!
MORE GREAT EPISODES LIKE THISCoping with Burnout in Diabetes Management: Strategies for Success
Disclaimer
The information contained in this program is based on the experience and opinions of the Integrated Diabetes Services clinical team. Please discuss any changes to your treatment plan with your personal healthcare provider before implementing.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:11):
Welcome to Think Like a Pancreas--ThePodcast where our goal is to keep
you informed, inspired, and a littleentertained on all things diabetes.
The information contained in thisprogram is based on the experience
and opinions of the IntegratedDiabetes Services clinical team.
Please discuss any changes to yourtreatment plan with your personal
(00:31):
healthcare provider before implementing.
Hey everybody.
My name's Kristi Paguio, andI am a clinical social worker
that specializes in diabetes.
Today we're gonna talk about theburden of diabetes and self-advocacy.
This is a common theme thatcomes up living with diabetes and
(00:52):
it's, it's the invisible side.
It's a very important part of livingwith diabetes, but we don't get to talk
about the burden of what that is enough.
So I'm gonna let my colleague,Dr. Paula introduce herself
and then we'll get into it.
Thanks Kristi.
And it's a pleasure to behere with you again today.
(01:13):
So my name is Paula Diab, andas Kristi said, I'm a clinician
and I work in South Africa.
Actually, I joined the IDS teamabout two years ago as a diabetes
care and education specialist, andmy areas of expertise are basically
in diabetes and obesity management.
So although I see the burden ofdiabetes, self-advocacy perhaps from
(01:36):
the other side of the table, I'm hopingthat between Kristi and myself today,
we can maybe present both sides ofthe table as clinicians and patients.
As Kristi said, it's a, it's a veryinvisible problem in diabetes-- is
this burden of constantly havingdiabetes, constantly having to fight
for your care, your needs, um, andwith patients, I mean with clinicians,
(01:58):
with, um, in terms of your family,in terms of people around you, um,
in the, within the healthcare system.
So yeah, we just wanted to put someideas on the table today and have a
discussion around it and see if we cancome up with some solutions and make it
a little bit less of a burden for people.
When I think about, as a person thatlives with diabetes, I've had type one for
(02:23):
25 years this summer or this past June.
Um.
This was one of the hardest partsfor me being diagnosed with type one
as an adult, is I was not used tohaving to advocate for myself in that
way, let alone, um, educating or likeeverybody knows what diabetes is, but
(02:45):
it really felt like, how does nobodyknow what, when diabetes got thrust
into my life, it felt like nobody knewanything about what I was dealing with.
And I could definitely tell that, um,healthcare providers really didn't know.
They had big concepts of what itwas, but they really didn't know the
(03:08):
totality of how that was impacting meand I had a lot of wounding moments in
that, um, in that gap of what I may beexpected from healthcare professionals,
naively so, validly so, and it, um.
(03:31):
I stumbled and struggled for a fewyears after my diagnosis, really
having of hate relationship withhow, how I was being talked to.
I was just with some of my closestdearest friends with diabetes, um, a
week ago, and one of the things thatwas said by a dear friend of mine
(03:54):
was, she remembers every shitty thingthat a healthcare professional has
ever said to her about her diabetes.
And boy, that reallyrings true for me too.
And so fast forwarding as a healthcareprofessional now advocating for and
trying to meet the needs, the emotionaland mental needs of people with diabetes,
(04:17):
now I'm embedded in these systemsand, um, trying to help teams relate
differently with their patients, forthem, for themselves, and for their
patients, but thinking how, looking atthe strategies of what works well, um.
Mm-hmm.
So I'd like this conversation to be, notjust validating the wounds that can happen
(04:43):
while interfacing with and not just tothrow healthcare professionals, 'cause
there's just so many systems and whetherit's our family systems or um, pharmacy
or insurance, there's so many barriers tothis self-managed condition in air quotes.
Um, and man, there's just so much upagainst us and so this need to advocate?
(05:04):
We just come up against it again and againand again and again, and it sneaks up like
at a party or gathering at a restaurantor at a concert or wherever we might be.
That something, whether we'retrying to get into an arena
and we've got diabetes gear on.
What line do we go in andhow do we advocate for that?
(05:26):
Yeah.
So Kristi, I was just reflecting on whatyou were were saying there about when
you first accessed the healthcare system.
And I think part of the motivation forme in studying more towards diabetes is
because I actually didn't have a verygood understanding of the disease and
a very good knowledge of how to manageit, even as a qualified clinician.
And I went back to my medical schoolnotes and we had two pages of notes
(05:47):
on diabetes basically just sayingthere's type one, type two diabetes.
Type one needs insulin.
Type two?
Not really.
You've got different types of insulin--long-acting, short-acting mixes.
You've got tablets for type two diabetes.
And that was really thebasis of what we got told.
And I think that for so many peoplewith diabetes, you expect your clinician
(06:08):
to be well versed in what's going on.
But the reality is, is that wedon't get a lot of training and
that's, I think internationallywe don't get a lot of training.
And so unless you're going to studyfurther in the diabetes field, the
clinician, him or herself, is alsogoing to be a little bit on the back
foot when you're coming with, witha complex disease such as diabetes.
(06:29):
A little more self-disclosure.
So I was actually diagnosedwith hypothyroidism as a child.
So I had been seeing an endocrinologistmy whole life, and now I was going....
I didn't know endocrinologist dealtwith this diabetes thing, and so when
I was going in for my follow ups, Inoticed such a stark difference in how
(06:50):
I was talked to, and it was so differentthan how I had experienced going to
the endocrinologist for 20, the first20 years of my life, and now all of
a sudden it was, it felt adversarialin the tone, in, in the approach.
And what I was thinking of with whatyou were talking about is that there's
(07:11):
so many mismatched needs in there.
I think that I knew in a sense that,well, I didn't know what, I didn't know
about diabetes and I knew that I wason insulin and I was grateful for that,
that I had the right diagnosis, althoughI don't think I could appreciate that.
But I think what what was missingis I didn't have the empathy and
(07:32):
the psychological support for thistraumatic diagnosis and impact
to my... every moment of my day!
It was just, here'sthe regimen, follow it.
If you're having a low blood sugar atthree in the morning, have protein.
This is the long, but like, andI'm like, who's having protein
at three o'clock in the mor?
Like, anyways, there's, again,I remember this comment, right?
(07:55):
This anxiety that I took as a scolding.
I think it was physician anxietythat I took as a scolding that I was
doing something wrong when I was inthe honeymoon phase of the diagnosis.
I left just so... I didn'tknow how to advocate.
I didn't understand yet what, howthings needed to transform in me.
(08:18):
There were just so many different...boy, there were just so, I, I was,
this was like, a part of the diabetestraining that isn't talked, you know, at
the time, was not talked about enough.
That I've had to get really versed inand thinking about, I, I kind of think
about diabe diabetes self-advocacy as,I've got my hands on the steering wheel
(08:40):
all the time, whether I'm talking with astranger that happens to see a device on
me, or, or I'm with a family member andthey are asking me a question or seeing
that I'm dealing with a blood sugar issueor I am um I'm at the doctor's office
or I'm dealing with a pharmaceuticalcompany, what, whatever it would be.
(09:01):
It's an ongoing struggle all the time.
Yeah.
Like it's so much more than just whatI have to do to manage my diabetes.
Yeah.
And make sure that I am rotatingmy sites and doing all the things.
I also have, there's this whole other,red tape that I have to navigate all
the time and how did, how to stayengaged in with the system, because
(09:22):
I know that my tendency would've beento be like, and I'm out like this.
This sucks.
This is ridiculous.
Insert tears and expletives and I'm,I'm so grateful for the influences
in my life that part of that supportsystem that helped sort of keep me
within the, um, stay in the laneof taking care of myself and stay
(09:44):
engaged with healthcare professionals.
And what we wanna talk about today,what I think about is this is how
to validate the wounds and alsowhat are strategies to stay engaged.
Yep.
And how to shift ourperspective maybe in a way.
And it's, it's interesting the contrastbetween hyperthyroid or thyroid disease
and, and diabetes as well, because Ithink thyroid disease is actually quite
(10:08):
simple to treat compared to diabetes.
And so perhaps it's, it is exactly that,it's that clinician sort of anxiety.
That the clinician really doesn't feellike they've got their hands on it,
because unless you live with diabetesevery day, you are actually not going
to have your finger firmly on the pulseand know what's going on with diabetes.
One of the things you mentioned, you,you were sort of talking about the words
(10:30):
and the way that you were spoken to,and I think so often, I suppose I've
caught myself saying them as well, andyou sort of look at a patients download
and you say, I see your sugars are outtarange, because that's what I'm seeing
on the, on the computer screen or I seethat the patient hasn't taken their,
their medication and that, in my head,I'm seeing that as being non-compliant
(10:51):
or non-adherent and or you hearingthe patient saying that they haven't
been able to take their medication orhaven't been able to test themselves
as often as they would like to haveor as you asked them to, and they
haven't done that, and you interpretthat as not sticking to the plan.
But unfortunately, all those wordsand all those ideas that I'm seeing on
my side, we've gotta be very carefulhow we express those to patients.
(11:15):
I mean, I don't know what'sgoing on in the patient's life
before they come and see me.
And you've gotta turn those words aroundand say, I noticed that you've been
struggling with your diabetes lately, orperhaps even take the word struggling out
of it and just say, tell me how thingshave been going, what's been working,
what hasn't been working, and allow theperson to say, well actually I think
I've done a damn fine job the last month.
(11:38):
I've tested myself once a day.
Um.
If that's what they think is great,then roll with that and work from there.
I love that.
Paula, when I think about, I alwayslike to think about what, I love what you
said about how have things been going?
Like, how's your diabetes beengoing or how's things been going?
What would I, I mean there are realconstraints that healthcare professionals,
(12:00):
having worked in that system for 15years, I know that there are real
limitations to the length of timethat we have to meet with a patient.
And so I think what so often happens iswe quickly and efficiently are trying
to think of it in a very um, simplecase study of like, what's a synopsis
of what's happening and then what isthe intervention that I'm gonna do?
(12:23):
But what gets, what, what the personbrings into that scenario is the other
context that's not gonna show up inthat lab value or in that download
um, or in their handwritten logs,whatever it looked like that it does
not have the context-- the otherthings that they're dealing with.
(12:43):
That's data.
That's other illnesses.
That's work stressors.
That's, you know, loss of relationship,new relation, like there's just so many.
All of that comes into it.
so many other parts ofthe whole person, right?
And I think it's just this, I think thatso often what happens is that the patient
and the healthcare professional, therecan be friction when really it's just
(13:05):
that healthcare systems are not reallyset up for chronic illness management.
They're set up for rashes and sprainsand colds, and not for in the trenches
of what it is to live with a chroniccondition day in and day out, moment
after moment, hour after hour.
So,
yep.
It's just, it's, it's avulnerable interaction.
(13:27):
I always say to my patients,like, diabetes, you cannot
treat it in 15 minutes.
And if that's all the healthcaresystem is giving you, either you've
gotta learn to work within that 15minutes or you've just gotta sacrifice
an hour and do it in an hour.
And even an hour sometimes isn't longenough to, to really touch base with
the person and see what's going on.
But I think, yeah, I mean obviouslyin the, in the private sector, you
(13:50):
know, time is money and so the moretime you spend with someone, the
more you feel obliged to charge them.
Or, you know, if you, if you decideto just charge them a flat 15 minute
rates, then you know, you losingout as a healthcare professional.
But from a patient's perspective, I thinkthe, the real thing is, is to just to meet
the patient where they're at and to say,what is it that you're wanting from today?
(14:13):
What is the burden that you dealing with?
And some visits, it mightbe a clinical burden.
Some visits it might bea, um, a social burden.
Some, some visits?
It might be somethingcompletely different.
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(15:05):
Yeah, the challengesare really real, right?
Like, as much as I want and needprobably an hour with my healthcare
professional, just, you know, likeI know that that's gonna back, they,
their schedules are full, like in thatthe systems put those things in place.
So I don't wanna be, if that's whatthey're doing, and I'm the fifth patient
in, and I now my provider's gonnabe a few hours late to, to see me.
(15:30):
That's, so the logistics are a realchallenge, but what I think about
is, as a patient, what I recommendto my clients and what I try to do
myself is to go in a little bit witha strategy of one, understanding the
dilemma that, that everybody's in.
Um, and so that can be helpful to sortof zoom out and to depersonalize it a
(15:54):
little bit, not to not validate ourselves,but at least to think about, okay, this
is the, the broken structure that we'reworking in or the imperfect structure,
um, and how do I really zero in on, and,and I think having a piece of paper with
you often can be really helpful to keepyour thoughts organized and in bring the
(16:14):
attention to the healthcare professionalthat you've got some strategies and
some, some things that you, whetherit's a prescription list or it's a
device question or it's a financialissue of asking for a re..., but I think
having, going in proactive into thatappointment is one strong step forward.
(16:35):
It doesn't mean it's gonna be perfect.
And then the, the other thing thatI think of is, um, what, what would
generally happen for me is I would reallyclam up and get really guarded waiting,
bracing for a negative interaction.
And what I've, what I've learned todo and try to do is instead engage
(16:57):
a little bit better or sort of makea little bit of small talk that sort
of get more, that flies with honey orbees with like, so I try to use that
side and bring that out to compensatea little bit for the, the deficits that
we're working in, within the systems.
And so to kind of lower everybody'sanxiety, even though I, I probably
(17:19):
still clam up a little bit, but, um, soI, I try to think, and then, and then
the only other piece in there is whenthere's a little bit of a rupture in
the interaction, trying to use it asan opportunity to educate a little bit.
Diabetes is really hard and it'smultifaceted and it's just a part of me.
It's not all of me.
(17:39):
Sometimes I do that better.
Sometimes I, I clam up and, or just skip.
Like, this is not the personthat I'm gonna be able to.
But it's, it's some combination ofall three of those things, of having
a plan going in to the best that Ican think about so I can guide the
conversation to meet my needs, tryto use a little bit more honey to
(18:00):
get, you know, a better interaction.
So a little bit of small,how's your day going?
Oh gosh, you know, it's almostFriday, blah, blah, blah.
Um, and then when, when there issomething a little bit more egregious,
using that as an opportunity tosay, diabetes is, diabetes is a, is
really hard sometimes and it's a lotmore complicated than, than it can
(18:23):
seem from a distance and to educate.
I also think sometime, I mean obviouslythat the planning for the appointment
is, is critical, but I also think it's,it's quite nice to actually bring an
advocate with you to an appointment.
Whether it's your partner or a parentor a friend or something like that.
I always say to people, it's, it's,it's like an extra pair of eyes and
(18:44):
ears and can also be an extra mouthif, if you need an extra mouth.
And even as a competent, matureadult, sometimes we need a, an
extra mouth and eyes and ears.
I mean, I've just had the situation whereI need to take my car and to be serviced.
Like that brings such anxiety for mebecause I know nothing about a car and
nothing about garages and I don't likemechanics and I don't like car servicing.
(19:04):
And my husband does all of that for me.
And it just sort of takes thathuge weight and that burden off me.
And if I have to take it in, Isort of texted him the other day
and I said, do you mind comingto drop off my car with me?
Because you know, at least you can talkto the mechanic and you can talk boy to
boy, and you know you can get on with it.
Um, and I don't, and I think a lot of thetime with healthcare, that's sort of just
(19:27):
having a another person, another pair ofeyes and ears is, is hugely beneficial.
Yeah where, where I, I know that forme, what I really had to figure out,
um, and this took years for this to sortof synthesize, but building my support
system over time of people that...
(19:47):
um, like early on, my husband didn't,like the car thing is a great example of
ways that we need somebody to advocatethat's a little bit more comfortable,
maybe a little bit more removed,and also just strength in numbers.
Right?
Um, but from a diabetes perspective,I didn't, I mean, my, I was dating my
husband at the time and he was having toget just as up to speed about what this
(20:11):
was, and kind of get through the cobwebsin his mind about people with diabetes
have to take care of them like, so toreally shift and shape that conversation
that I'm the, I am the quarterback orI am the expert of me, even though I'm
still learning and understanding and,but it really makes me think about
(20:33):
how much we have to build up supportsystems, whether that's emotionally
or motivationally or information.
Like a car is a great example of that.
Like you don't have all thatinformation about... i, I
don't know how to fly a plane.
I'm gonna trust a pilot to do that.
Exactly.
But boy, when it comes todiabetes, there's just some,
(20:55):
there's just so much to it.
I....
And I think that is, with diabetes isthat there is so much to it and there
is so much complexity to it and it'sa continuous educational process.
You might have lived through diabetesas an adult in your thirties and you've
very competent dealing with it, butyou haven't been through menopause with
diabetes, or you haven't been through asurgery with diabetes, or you haven't been
(21:20):
through an emotional trauma with diabetes.
And so all of that adds things onto it.
And I think that network and that supportteam around it, whether it's just a
friend or a partner or a spouse or aum, an online support group or, um,
just friends that have got your back.
If, if you go to a party or acelebration and someone says, you
(21:42):
know, would you like some cake?
And you think, well, not actually, becausethen I've gotta do a whole lot of things
just to be able to eat a slice of cake.
Just to have a friend who says,No, I'm also not gonna have some
cake today and then that just dullsdown the, the situation, you know?
And it's not as excitinganymore when just one person has
said that they don't want it.
So I think all of those things canbe very helpful just to reduce the
(22:03):
burden of diabetes and just to takesome of that pressure off, I think.
Yeah, I, I had a, a little personalstory for me is, I had to go into the
emergency room, emergency department afew years ago, and I think I hesitated
to go in for quite a while becauseone, I was sick and probably a little
(22:25):
bit compromised in how I was eventhinking through what was happening.
But part of it was I knew I was gonnahave to advocate for my diabetes and I
just didn't have, I didn't have it in me.
So finally things got to the pointwhere I, we, I had to go into the
hospital and I am really grateful thatmy husband actually advocated and worked
(22:46):
with the healthcare team to make itso that I could keep my pump on and
I could manage, manage my diabetes.
In saying all of that though, thatwas my first time being in the
ho... back in the hospital since mydiagnosis some 20 plus years later,
and I grieved a different way.
The diabetes, that I still had tomanage it while I was sick enough
(23:08):
to be hospitalized because althoughthey would've done a decent, they
would've done a good enough job.
I know that.
I just am so trained to havemy hands on the steering wheel.
What a challenge when I am compromised.
And so there's gonna be times livingwith diabetes that we have to hand
that steering wheel off to healthcare,like in a hospital situation.
(23:31):
Um, and a friend of minethat I was talking about.
She's just got so much wisdom, thattalked about remembering every shitty
thing that's ever been said to her,is, she would talk about educating.
She would say educate.
Ask, um, ask for it... To ask why they'rethinking of doing something a certain way.
Um, educate and, and share with themhow that feels for you so that there's
(23:55):
a little bit more of a partnershipand again, trying to keep those stress
levels lower so that you're not tensedup and in that fight or flight, but more
in a, can we open up a conversation?
So that you don't get labeled asdifficult patient and more of kind of
working with their egos and helpingthem to work with you, which is not
(24:16):
fair, but it's, it's just part of thereality of what we have to deal with.
Yep.
I think you made a, a comment in the lastpodcast we did when we were talking about
diabetes being like an ultra marathonand being this long distance event that
you've gotta continuously like, strugglewith all the challenges and you, you
coined a phrase, I don't know if it'syours or you got it from somewhere else.
(24:37):
Um, a compassionate curiosity, andit really struck a chord with me
because, I just think we as healthcareworkers can really up our game hugely
by learning from our patients andjust listening to our patients and
just being curious about what theirburdens are, what their struggles are.
You know, we've spoken about it a bit.
You know, you look at the download andas, as a healthcare professional, this
(24:59):
looks like a bad month that's that theperson's had, but maybe that's actually
a really good month and maybe there werea whole lot of balls in the air that
that person was really struggling with.
And just to be able to getout of it on the other side
was a real win for the person.
And I think if, if we can just havea little bit of curiosity about and
just try and inquire as to what theburden is, can I, how can I alleviate
(25:21):
some of that burden rather than addingto that burden, which I think quite
often healthcare providers actually do.
Yeah, I, when I think about compassionatecuriosity, I use it a lot for my clients
that are beating themselves up forwhatever they're struggling with that like
why, why am, why am I dealing with it?
(25:42):
Why do I do it like,and instead to shift it?
I love how you're talking aboutit as a healthcare professional
and how to use that in that way.
And I think it removing the judgmentout of it for ourselves and instead
thinking about it like, I wonder what,I wonder what this is about for me.
(26:02):
Like, I wonder, I wonder why I amfeeling so discouraged or fatigued
or, and what that does is itjust opens it up so that we're in
better relationship with ourselves.
Um.
And then that's gonna foster thatcommunication that we can go in, in
advocate in all these different arenasand say, you know, it's like we've
(26:26):
made peace with ourselves a little bit.
That we understand ourselves.
That there's a lot thatgoes into life, period.
Now we'll tack on a self-managed,you know, chronic illness like type
one diabetes, which is just on a,it's just on a whole other level.
Oh, and we often makeit look so invisible.
(26:47):
It's like, how do we, how do webefriend ourselves in that way?
Um, take that pressure off so that iteases our communication with ourselves,
with family members, with friends,with the systems, with the providers.
I love how you're talkingabout our healthcare providers,
but really for ourselves too.
Yeah.
It's extraordinary what we do.
Even though it's so easy to look atall of the mistakes or out outside
(27:12):
of range or missed this or that, likeit's it, it takes me outta range for
it extraordinary what we do to be apancreas, and this is the mindset shift.
Like we're incredible.
We just have to, right, own it ourselvesand then, and so acknowledge it.
It's insane what, what we're taskedwith, but yet how can I let other
(27:36):
people know and bring them in so that,
yeah.
And, and allow myself to rest, allowmy, to acknowledge that I am carrying
more than somebody that's not living.
I mean, not comparing against anybodyelse, but just being a pancreas
is a, is an extraordinary job.
Yeah.
And sometimes you can take a break fromdiabetes, maybe you decide, you know
(27:58):
what, I'm actually gonna go a bit out ofrange and I'm, you know, obviously within
limits and within safe, um, within safetyaspects, but maybe I just don't really
feel like paying too much attention to it.
Or as you were describing earlier,you weren't ready to go and access
the healthcare that you neededbecause you knew that you had to
deal with your diabetes and youhad to, you know, you weren't ready
(28:19):
to give, to give away the steeringwheel, you know, as you describe it.
And maybe it's okay to not collectyour medication today and to go
tomorrow, or maybe it's okay to delaythe blood test that you need for a
week until you feel ready to go inand, um, explain why you've got...
Or maybe pass the baton tosomebody else and say, would you
go get my script or would you
(28:39):
100%.
Help me, or you know, or I'm just notgonna pay attention for, you know, I'm
gonna just focus on how my body feels andnot as much on pacing blood sugar numbers
that is so easy for us to fall into.
Can you just maybe phone the doctor andmake the appointment for me because, you
know, I don't have the capacity to do it?
And just alleviating that burden slightly.
(29:01):
Yeah.
Um, and then I think as you said in thebeginning, you know, just advocating
for yourself when you go and seethe doctor and being upfront with
the doctor and just saying, listen,the last month has been terrible.
I haven't done what I know I need to do,and I know I need to get back on track.
I'm dealing with a couple of balls atthe moment and you know, I'll get there.
I just need a little bit ofcompassion and, and time to get there.
(29:23):
Well, or maybe what, maybe what itis, is like that my blood sugars
don't reflect like the extraordinarychallenges that I've been like jumping
all these hurdles and it's not gonnabe captured on some silly graph.
So it's more about, I'd like to tellyou about sort of the context of which
all of this has been happening sothat they see us and not um, just get
(29:48):
focused on data for so much longer.
This was great chattingwith you about this, Paula.
Thank you, Kristi.
It's, it's certainly a very complexdisease and I think both from a
provider and a patient's perspective.
And I think the bottom line is, isthat we actually just need to be
more compassionate of each other andmore understanding of each other and
(30:08):
seek to maybe alleviate that burden.
Rather than adding to the burden ofdiabetes, we know that there's a massive
burden of diabetes from a healthcaresector point of view, from a industry
point of view, from a public point ofview, from a daily life point of view.
And if we as a diabetes community canjust sort of be a bit more compassionate
and empathetic and just relieveother people's burden a little bit.
(30:31):
I think it's not about curingthe disease, it's not about
making it better over the time.
It's just about
Coming along side them.
Absolutely.
What I was thinking about too, isalong those lines as we wrap up,
is build up that support systemlike we talked about before.
Find your tribe, find your people.
And Integrated Diabetes Services is agreat way to find people that understand
(30:56):
this, that are educating themselves, thatdo, you know that this is their specialty.
There's just a, there's a wealth ofresources there, whether it's meeting
with a clinician or tapping into someof the other educational programs
of people that live with diabetes.
Empower yourself.
Go find, go build your support system.
Yeah.
(31:16):
And I think just in closing,just to say thank you Kristi.
'cause it's, it's always so great to learnfrom you and to, and to interact with you.
And I think the more podcasts likethis we have, hopefully the more people
will, will be able to just touch basewith us and to, to see these are real
struggles that we have and maybe wedon't have the solutions, but we can
(31:36):
certainly try and help get the solutions.
So thank you.
You are welcome, Paula.
It's always great to to be with you too.
Thanks for tuning in to ThinkLike A Pancreas--The Podcast.
If you enjoy today's episode, don'tforget to like, follow or subscribe
on your favorite podcast app.
Think Like a Pancreas-- thepodcast is brought to you by
(31:57):
Integrated Diabetes Services.
Where experience meets expertise,passion meets compassion and diabetes
care is personal because we live it too.
Our team of clinicians, all livingwith type one diabetes understands
the challenges firsthand.
We're here to help no matterwhere you are in the world.
From glucose management, to self-carestrategies, the latest tech,
(32:20):
sports and exercise, weight loss,type one pregnancy and emotional
wellbeing, we've got you covered.
We offer consultations inEnglish and Spanish via phone,
video, chat, email and text.
Wanna learn more?
Visit integrateddiabetes.com oremail info@integrateddiabetes.com
(32:41):
to schedule a consultation.
On behalf of Think Likea Pancreas--The Podcast.
I'm Gary Scheiner, wishingyou a fantastic week ahead.
And don't forget to think like a pancreas.
Welcome to Think Like a Pancreas--ThePodcast where our goal is to keep
you informed, inspired, and a littleentertained on all things diabetes.
The information contained in thisprogram is based on the experience
and opinions of the IntegratedDiabetes Services clinical team.
Please discuss any changes to yourtreatment plan with your personal
(00:31):
healthcare provider before implementing.
Hey everybody.
My name's Kristi Paguio, andI am a clinical social worker
that specializes in diabetes.
Today we're gonna talk about theburden of diabetes and self-advocacy.
This is a common theme thatcomes up living with diabetes and
(00:52):
it's, it's the invisible side.
It's a very important part of livingwith diabetes, but we don't get to talk
about the burden of what that is enough.
So I'm gonna let my colleague,Dr. Paula introduce herself
and then we'll get into it.
Thanks Kristi.
And it's a pleasure to behere with you again today.
(01:13):
So my name is Paula Diab, andas Kristi said, I'm a clinician
and I work in South Africa.
Actually, I joined the IDS teamabout two years ago as a diabetes
care and education specialist, andmy areas of expertise are basically
in diabetes and obesity management.
So although I see the burden ofdiabetes, self-advocacy perhaps from
(01:36):
the other side of the table, I'm hopingthat between Kristi and myself today,
we can maybe present both sides ofthe table as clinicians and patients.
As Kristi said, it's a, it's a veryinvisible problem in diabetes-- is
this burden of constantly havingdiabetes, constantly having to fight
for your care, your needs, um, andwith patients, I mean with clinicians,
(01:58):
with, um, in terms of your family,in terms of people around you, um,
in the, within the healthcare system.
So yeah, we just wanted to put someideas on the table today and have a
discussion around it and see if we cancome up with some solutions and make it
a little bit less of a burden for people.
When I think about, as a person thatlives with diabetes, I've had type one for
(02:23):
25 years this summer or this past June.
Um.
This was one of the hardest partsfor me being diagnosed with type one
as an adult, is I was not used tohaving to advocate for myself in that
way, let alone, um, educating or likeeverybody knows what diabetes is, but
(02:45):
it really felt like, how does nobodyknow what, when diabetes got thrust
into my life, it felt like nobody knewanything about what I was dealing with.
And I could definitely tell that, um,healthcare providers really didn't know.
They had big concepts of what itwas, but they really didn't know the
(03:08):
totality of how that was impacting meand I had a lot of wounding moments in
that, um, in that gap of what I may beexpected from healthcare professionals,
naively so, validly so, and it, um.
(03:31):
I stumbled and struggled for a fewyears after my diagnosis, really
having of hate relationship withhow, how I was being talked to.
I was just with some of my closestdearest friends with diabetes, um, a
week ago, and one of the things thatwas said by a dear friend of mine
(03:54):
was, she remembers every shitty thingthat a healthcare professional has
ever said to her about her diabetes.
And boy, that reallyrings true for me too.
And so fast forwarding as a healthcareprofessional now advocating for and
trying to meet the needs, the emotionaland mental needs of people with diabetes,
(04:17):
now I'm embedded in these systemsand, um, trying to help teams relate
differently with their patients, forthem, for themselves, and for their
patients, but thinking how, looking atthe strategies of what works well, um.
Mm-hmm.
So I'd like this conversation to be, notjust validating the wounds that can happen
(04:43):
while interfacing with and not just tothrow healthcare professionals, 'cause
there's just so many systems and whetherit's our family systems or um, pharmacy
or insurance, there's so many barriers tothis self-managed condition in air quotes.
Um, and man, there's just so much upagainst us and so this need to advocate?
(05:04):
We just come up against it again and againand again and again, and it sneaks up like
at a party or gathering at a restaurantor at a concert or wherever we might be.
That something, whether we'retrying to get into an arena
and we've got diabetes gear on.
What line do we go in andhow do we advocate for that?
(05:26):
Yeah.
So Kristi, I was just reflecting on whatyou were were saying there about when
you first accessed the healthcare system.
And I think part of the motivation forme in studying more towards diabetes is
because I actually didn't have a verygood understanding of the disease and
a very good knowledge of how to manageit, even as a qualified clinician.
And I went back to my medical schoolnotes and we had two pages of notes
(05:47):
on diabetes basically just sayingthere's type one, type two diabetes.
Type one needs insulin.
Type two?
Not really.
You've got different types of insulin--long-acting, short-acting mixes.
You've got tablets for type two diabetes.
And that was really thebasis of what we got told.
And I think that for so many peoplewith diabetes, you expect your clinician
(06:08):
to be well versed in what's going on.
But the reality is, is that wedon't get a lot of training and
that's, I think internationallywe don't get a lot of training.
And so unless you're going to studyfurther in the diabetes field, the
clinician, him or herself, is alsogoing to be a little bit on the back
foot when you're coming with, witha complex disease such as diabetes.
(06:29):
A little more self-disclosure.
So I was actually diagnosedwith hypothyroidism as a child.
So I had been seeing an endocrinologistmy whole life, and now I was going....
I didn't know endocrinologist dealtwith this diabetes thing, and so when
I was going in for my follow ups, Inoticed such a stark difference in how
(06:50):
I was talked to, and it was so differentthan how I had experienced going to
the endocrinologist for 20, the first20 years of my life, and now all of
a sudden it was, it felt adversarialin the tone, in, in the approach.
And what I was thinking of with whatyou were talking about is that there's
(07:11):
so many mismatched needs in there.
I think that I knew in a sense that,well, I didn't know what, I didn't know
about diabetes and I knew that I wason insulin and I was grateful for that,
that I had the right diagnosis, althoughI don't think I could appreciate that.
But I think what what was missingis I didn't have the empathy and
(07:32):
the psychological support for thistraumatic diagnosis and impact
to my... every moment of my day!
It was just, here'sthe regimen, follow it.
If you're having a low blood sugar atthree in the morning, have protein.
This is the long, but like, andI'm like, who's having protein
at three o'clock in the mor?
Like, anyways, there's, again,I remember this comment, right?
(07:55):
This anxiety that I took as a scolding.
I think it was physician anxietythat I took as a scolding that I was
doing something wrong when I was inthe honeymoon phase of the diagnosis.
I left just so... I didn'tknow how to advocate.
I didn't understand yet what, howthings needed to transform in me.
(08:18):
There were just so many different...boy, there were just so, I, I was,
this was like, a part of the diabetestraining that isn't talked, you know, at
the time, was not talked about enough.
That I've had to get really versed inand thinking about, I, I kind of think
about diabe diabetes self-advocacy as,I've got my hands on the steering wheel
(08:40):
all the time, whether I'm talking with astranger that happens to see a device on
me, or, or I'm with a family member andthey are asking me a question or seeing
that I'm dealing with a blood sugar issueor I am um I'm at the doctor's office
or I'm dealing with a pharmaceuticalcompany, what, whatever it would be.
(09:01):
It's an ongoing struggle all the time.
Yeah.
Like it's so much more than just whatI have to do to manage my diabetes.
Yeah.
And make sure that I am rotatingmy sites and doing all the things.
I also have, there's this whole other,red tape that I have to navigate all
the time and how did, how to stayengaged in with the system, because
(09:22):
I know that my tendency would've beento be like, and I'm out like this.
This sucks.
This is ridiculous.
Insert tears and expletives and I'm,I'm so grateful for the influences
in my life that part of that supportsystem that helped sort of keep me
within the, um, stay in the laneof taking care of myself and stay
(09:44):
engaged with healthcare professionals.
And what we wanna talk about today,what I think about is this is how
to validate the wounds and alsowhat are strategies to stay engaged.
Yep.
And how to shift ourperspective maybe in a way.
And it's, it's interesting the contrastbetween hyperthyroid or thyroid disease
and, and diabetes as well, because Ithink thyroid disease is actually quite
(10:08):
simple to treat compared to diabetes.
And so perhaps it's, it is exactly that,it's that clinician sort of anxiety.
That the clinician really doesn't feellike they've got their hands on it,
because unless you live with diabetesevery day, you are actually not going
to have your finger firmly on the pulseand know what's going on with diabetes.
One of the things you mentioned, you,you were sort of talking about the words
(10:30):
and the way that you were spoken to,and I think so often, I suppose I've
caught myself saying them as well, andyou sort of look at a patients download
and you say, I see your sugars are outtarange, because that's what I'm seeing
on the, on the computer screen or I seethat the patient hasn't taken their,
their medication and that, in my head,I'm seeing that as being non-compliant
(10:51):
or non-adherent and or you hearingthe patient saying that they haven't
been able to take their medication orhaven't been able to test themselves
as often as they would like to haveor as you asked them to, and they
haven't done that, and you interpretthat as not sticking to the plan.
But unfortunately, all those wordsand all those ideas that I'm seeing on
my side, we've gotta be very carefulhow we express those to patients.
(11:15):
I mean, I don't know what'sgoing on in the patient's life
before they come and see me.
And you've gotta turn those words aroundand say, I noticed that you've been
struggling with your diabetes lately, orperhaps even take the word struggling out
of it and just say, tell me how thingshave been going, what's been working,
what hasn't been working, and allow theperson to say, well actually I think
I've done a damn fine job the last month.
(11:38):
I've tested myself once a day.
Um.
If that's what they think is great,then roll with that and work from there.
I love that.
Paula, when I think about, I alwayslike to think about what, I love what you
said about how have things been going?
Like, how's your diabetes beengoing or how's things been going?
What would I, I mean there are realconstraints that healthcare professionals,
(12:00):
having worked in that system for 15years, I know that there are real
limitations to the length of timethat we have to meet with a patient.
And so I think what so often happens iswe quickly and efficiently are trying
to think of it in a very um, simplecase study of like, what's a synopsis
of what's happening and then what isthe intervention that I'm gonna do?
(12:23):
But what gets, what, what the personbrings into that scenario is the other
context that's not gonna show up inthat lab value or in that download
um, or in their handwritten logs,whatever it looked like that it does
not have the context-- the otherthings that they're dealing with.
(12:43):
That's data.
That's other illnesses.
That's work stressors.
That's, you know, loss of relationship,new relation, like there's just so many.
All of that comes into it.
so many other parts ofthe whole person, right?
And I think it's just this, I think thatso often what happens is that the patient
and the healthcare professional, therecan be friction when really it's just
(13:05):
that healthcare systems are not reallyset up for chronic illness management.
They're set up for rashes and sprainsand colds, and not for in the trenches
of what it is to live with a chroniccondition day in and day out, moment
after moment, hour after hour.
So,
yep.
It's just, it's, it's avulnerable interaction.
(13:27):
I always say to my patients,like, diabetes, you cannot
treat it in 15 minutes.
And if that's all the healthcaresystem is giving you, either you've
gotta learn to work within that 15minutes or you've just gotta sacrifice
an hour and do it in an hour.
And even an hour sometimes isn't longenough to, to really touch base with
the person and see what's going on.
But I think, yeah, I mean obviouslyin the, in the private sector, you
(13:50):
know, time is money and so the moretime you spend with someone, the
more you feel obliged to charge them.
Or, you know, if you, if you decideto just charge them a flat 15 minute
rates, then you know, you losingout as a healthcare professional.
But from a patient's perspective, I thinkthe, the real thing is, is to just to meet
the patient where they're at and to say,what is it that you're wanting from today?
(14:13):
What is the burden that you dealing with?
And some visits, it mightbe a clinical burden.
Some visits it might bea, um, a social burden.
Some, some visits?
It might be somethingcompletely different.
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(14:37):
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(15:05):
Yeah, the challengesare really real, right?
Like, as much as I want and needprobably an hour with my healthcare
professional, just, you know, likeI know that that's gonna back, they,
their schedules are full, like in thatthe systems put those things in place.
So I don't wanna be, if that's whatthey're doing, and I'm the fifth patient
in, and I now my provider's gonnabe a few hours late to, to see me.
(15:30):
That's, so the logistics are a realchallenge, but what I think about
is, as a patient, what I recommendto my clients and what I try to do
myself is to go in a little bit witha strategy of one, understanding the
dilemma that, that everybody's in.
Um, and so that can be helpful to sortof zoom out and to depersonalize it a
(15:54):
little bit, not to not validate ourselves,but at least to think about, okay, this
is the, the broken structure that we'reworking in or the imperfect structure,
um, and how do I really zero in on, and,and I think having a piece of paper with
you often can be really helpful to keepyour thoughts organized and in bring the
(16:14):
attention to the healthcare professionalthat you've got some strategies and
some, some things that you, whetherit's a prescription list or it's a
device question or it's a financialissue of asking for a re..., but I think
having, going in proactive into thatappointment is one strong step forward.
(16:35):
It doesn't mean it's gonna be perfect.
And then the, the other thing thatI think of is, um, what, what would
generally happen for me is I would reallyclam up and get really guarded waiting,
bracing for a negative interaction.
And what I've, what I've learned todo and try to do is instead engage
(16:57):
a little bit better or sort of makea little bit of small talk that sort
of get more, that flies with honey orbees with like, so I try to use that
side and bring that out to compensatea little bit for the, the deficits that
we're working in, within the systems.
And so to kind of lower everybody'sanxiety, even though I, I probably
(17:19):
still clam up a little bit, but, um, soI, I try to think, and then, and then
the only other piece in there is whenthere's a little bit of a rupture in
the interaction, trying to use it asan opportunity to educate a little bit.
Diabetes is really hard and it'smultifaceted and it's just a part of me.
It's not all of me.
(17:39):
Sometimes I do that better.
Sometimes I, I clam up and, or just skip.
Like, this is not the personthat I'm gonna be able to.
But it's, it's some combination ofall three of those things, of having
a plan going in to the best that Ican think about so I can guide the
conversation to meet my needs, tryto use a little bit more honey to
(18:00):
get, you know, a better interaction.
So a little bit of small,how's your day going?
Oh gosh, you know, it's almostFriday, blah, blah, blah.
Um, and then when, when there issomething a little bit more egregious,
using that as an opportunity tosay, diabetes is, diabetes is a, is
really hard sometimes and it's a lotmore complicated than, than it can
(18:23):
seem from a distance and to educate.
I also think sometime, I mean obviouslythat the planning for the appointment
is, is critical, but I also think it's,it's quite nice to actually bring an
advocate with you to an appointment.
Whether it's your partner or a parentor a friend or something like that.
I always say to people, it's, it's,it's like an extra pair of eyes and
(18:44):
ears and can also be an extra mouthif, if you need an extra mouth.
And even as a competent, matureadult, sometimes we need a, an
extra mouth and eyes and ears.
I mean, I've just had the situation whereI need to take my car and to be serviced.
Like that brings such anxiety for mebecause I know nothing about a car and
nothing about garages and I don't likemechanics and I don't like car servicing.
(19:04):
And my husband does all of that for me.
And it just sort of takes thathuge weight and that burden off me.
And if I have to take it in, Isort of texted him the other day
and I said, do you mind comingto drop off my car with me?
Because you know, at least you can talkto the mechanic and you can talk boy to
boy, and you know you can get on with it.
Um, and I don't, and I think a lot of thetime with healthcare, that's sort of just
(19:27):
having a another person, another pair ofeyes and ears is, is hugely beneficial.
Yeah where, where I, I know that forme, what I really had to figure out,
um, and this took years for this to sortof synthesize, but building my support
system over time of people that...
(19:47):
um, like early on, my husband didn't,like the car thing is a great example of
ways that we need somebody to advocatethat's a little bit more comfortable,
maybe a little bit more removed,and also just strength in numbers.
Right?
Um, but from a diabetes perspective,I didn't, I mean, my, I was dating my
husband at the time and he was having toget just as up to speed about what this
(20:11):
was, and kind of get through the cobwebsin his mind about people with diabetes
have to take care of them like, so toreally shift and shape that conversation
that I'm the, I am the quarterback orI am the expert of me, even though I'm
still learning and understanding and,but it really makes me think about
(20:33):
how much we have to build up supportsystems, whether that's emotionally
or motivationally or information.
Like a car is a great example of that.
Like you don't have all thatinformation about... i, I
don't know how to fly a plane.
I'm gonna trust a pilot to do that.
Exactly.
But boy, when it comes todiabetes, there's just some,
(20:55):
there's just so much to it.
I....
And I think that is, with diabetes isthat there is so much to it and there
is so much complexity to it and it'sa continuous educational process.
You might have lived through diabetesas an adult in your thirties and you've
very competent dealing with it, butyou haven't been through menopause with
diabetes, or you haven't been through asurgery with diabetes, or you haven't been
(21:20):
through an emotional trauma with diabetes.
And so all of that adds things onto it.
And I think that network and that supportteam around it, whether it's just a
friend or a partner or a spouse or aum, an online support group or, um,
just friends that have got your back.
If, if you go to a party or acelebration and someone says, you
(21:42):
know, would you like some cake?
And you think, well, not actually, becausethen I've gotta do a whole lot of things
just to be able to eat a slice of cake.
Just to have a friend who says,No, I'm also not gonna have some
cake today and then that just dullsdown the, the situation, you know?
And it's not as excitinganymore when just one person has
said that they don't want it.
So I think all of those things canbe very helpful just to reduce the
(22:03):
burden of diabetes and just to takesome of that pressure off, I think.
Yeah, I, I had a, a little personalstory for me is, I had to go into the
emergency room, emergency department afew years ago, and I think I hesitated
to go in for quite a while becauseone, I was sick and probably a little
(22:25):
bit compromised in how I was eventhinking through what was happening.
But part of it was I knew I was gonnahave to advocate for my diabetes and I
just didn't have, I didn't have it in me.
So finally things got to the pointwhere I, we, I had to go into the
hospital and I am really grateful thatmy husband actually advocated and worked
(22:46):
with the healthcare team to make itso that I could keep my pump on and
I could manage, manage my diabetes.
In saying all of that though, thatwas my first time being in the
ho... back in the hospital since mydiagnosis some 20 plus years later,
and I grieved a different way.
The diabetes, that I still had tomanage it while I was sick enough
(23:08):
to be hospitalized because althoughthey would've done a decent, they
would've done a good enough job.
I know that.
I just am so trained to havemy hands on the steering wheel.
What a challenge when I am compromised.
And so there's gonna be times livingwith diabetes that we have to hand
that steering wheel off to healthcare,like in a hospital situation.
(23:31):
Um, and a friend of minethat I was talking about.
She's just got so much wisdom, thattalked about remembering every shitty
thing that's ever been said to her,is, she would talk about educating.
She would say educate.
Ask, um, ask for it... To ask why they'rethinking of doing something a certain way.
Um, educate and, and share with themhow that feels for you so that there's
(23:55):
a little bit more of a partnershipand again, trying to keep those stress
levels lower so that you're not tensedup and in that fight or flight, but more
in a, can we open up a conversation?
So that you don't get labeled asdifficult patient and more of kind of
working with their egos and helpingthem to work with you, which is not
(24:16):
fair, but it's, it's just part of thereality of what we have to deal with.
Yep.
I think you made a, a comment in the lastpodcast we did when we were talking about
diabetes being like an ultra marathonand being this long distance event that
you've gotta continuously like, strugglewith all the challenges and you, you
coined a phrase, I don't know if it'syours or you got it from somewhere else.
(24:37):
Um, a compassionate curiosity, andit really struck a chord with me
because, I just think we as healthcareworkers can really up our game hugely
by learning from our patients andjust listening to our patients and
just being curious about what theirburdens are, what their struggles are.
You know, we've spoken about it a bit.
You know, you look at the download andas, as a healthcare professional, this
(24:59):
looks like a bad month that's that theperson's had, but maybe that's actually
a really good month and maybe there werea whole lot of balls in the air that
that person was really struggling with.
And just to be able to getout of it on the other side
was a real win for the person.
And I think if, if we can just havea little bit of curiosity about and
just try and inquire as to what theburden is, can I, how can I alleviate
(25:21):
some of that burden rather than addingto that burden, which I think quite
often healthcare providers actually do.
Yeah, I, when I think about compassionatecuriosity, I use it a lot for my clients
that are beating themselves up forwhatever they're struggling with that like
why, why am, why am I dealing with it?
(25:42):
Why do I do it like,and instead to shift it?
I love how you're talking aboutit as a healthcare professional
and how to use that in that way.
And I think it removing the judgmentout of it for ourselves and instead
thinking about it like, I wonder what,I wonder what this is about for me.
(26:02):
Like, I wonder, I wonder why I amfeeling so discouraged or fatigued
or, and what that does is itjust opens it up so that we're in
better relationship with ourselves.
Um.
And then that's gonna foster thatcommunication that we can go in, in
advocate in all these different arenasand say, you know, it's like we've
(26:26):
made peace with ourselves a little bit.
That we understand ourselves.
That there's a lot thatgoes into life, period.
Now we'll tack on a self-managed,you know, chronic illness like type
one diabetes, which is just on a,it's just on a whole other level.
Oh, and we often makeit look so invisible.
(26:47):
It's like, how do we, how do webefriend ourselves in that way?
Um, take that pressure off so that iteases our communication with ourselves,
with family members, with friends,with the systems, with the providers.
I love how you're talkingabout our healthcare providers,
but really for ourselves too.
Yeah.
It's extraordinary what we do.
Even though it's so easy to look atall of the mistakes or out outside
(27:12):
of range or missed this or that, likeit's it, it takes me outta range for
it extraordinary what we do to be apancreas, and this is the mindset shift.
Like we're incredible.
We just have to, right, own it ourselvesand then, and so acknowledge it.
It's insane what, what we're taskedwith, but yet how can I let other
(27:36):
people know and bring them in so that,
yeah.
And, and allow myself to rest, allowmy, to acknowledge that I am carrying
more than somebody that's not living.
I mean, not comparing against anybodyelse, but just being a pancreas
is a, is an extraordinary job.
Yeah.
And sometimes you can take a break fromdiabetes, maybe you decide, you know
(27:58):
what, I'm actually gonna go a bit out ofrange and I'm, you know, obviously within
limits and within safe, um, within safetyaspects, but maybe I just don't really
feel like paying too much attention to it.
Or as you were describing earlier,you weren't ready to go and access
the healthcare that you neededbecause you knew that you had to
deal with your diabetes and youhad to, you know, you weren't ready
(28:19):
to give, to give away the steeringwheel, you know, as you describe it.
And maybe it's okay to not collectyour medication today and to go
tomorrow, or maybe it's okay to delaythe blood test that you need for a
week until you feel ready to go inand, um, explain why you've got...
Or maybe pass the baton tosomebody else and say, would you
go get my script or would you
(28:39):
100%.
Help me, or you know, or I'm just notgonna pay attention for, you know, I'm
gonna just focus on how my body feels andnot as much on pacing blood sugar numbers
that is so easy for us to fall into.
Can you just maybe phone the doctor andmake the appointment for me because, you
know, I don't have the capacity to do it?
And just alleviating that burden slightly.
(29:01):
Yeah.
Um, and then I think as you said in thebeginning, you know, just advocating
for yourself when you go and seethe doctor and being upfront with
the doctor and just saying, listen,the last month has been terrible.
I haven't done what I know I need to do,and I know I need to get back on track.
I'm dealing with a couple of balls atthe moment and you know, I'll get there.
I just need a little bit ofcompassion and, and time to get there.
(29:23):
Well, or maybe what, maybe what itis, is like that my blood sugars
don't reflect like the extraordinarychallenges that I've been like jumping
all these hurdles and it's not gonnabe captured on some silly graph.
So it's more about, I'd like to tellyou about sort of the context of which
all of this has been happening sothat they see us and not um, just get
(29:48):
focused on data for so much longer.
This was great chattingwith you about this, Paula.
Thank you, Kristi.
It's, it's certainly a very complexdisease and I think both from a
provider and a patient's perspective.
And I think the bottom line is, isthat we actually just need to be
more compassionate of each other andmore understanding of each other and
(30:08):
seek to maybe alleviate that burden.
Rather than adding to the burden ofdiabetes, we know that there's a massive
burden of diabetes from a healthcaresector point of view, from a industry
point of view, from a public point ofview, from a daily life point of view.
And if we as a diabetes community canjust sort of be a bit more compassionate
and empathetic and just relieveother people's burden a little bit.
(30:31):
I think it's not about curingthe disease, it's not about
making it better over the time.
It's just about
Coming along side them.
Absolutely.
What I was thinking about too, isalong those lines as we wrap up,
is build up that support systemlike we talked about before.
Find your tribe, find your people.
And Integrated Diabetes Services is agreat way to find people that understand
(30:56):
this, that are educating themselves, thatdo, you know that this is their specialty.
There's just a, there's a wealth ofresources there, whether it's meeting
with a clinician or tapping into someof the other educational programs
of people that live with diabetes.
Empower yourself.
Go find, go build your support system.
Yeah.
(31:16):
And I think just in closing,just to say thank you Kristi.
'cause it's, it's always so great to learnfrom you and to, and to interact with you.
And I think the more podcasts likethis we have, hopefully the more people
will, will be able to just touch basewith us and to, to see these are real
struggles that we have and maybe wedon't have the solutions, but we can
(31:36):
certainly try and help get the solutions.
So thank you.
You are welcome, Paula.
It's always great to to be with you too.
Thanks for tuning in to ThinkLike A Pancreas--The Podcast.
If you enjoy today's episode, don'tforget to like, follow or subscribe
on your favorite podcast app.
Think Like a Pancreas-- thepodcast is brought to you by
(31:57):
Integrated Diabetes Services.
Where experience meets expertise,passion meets compassion and diabetes
care is personal because we live it too.
Our team of clinicians, all livingwith type one diabetes understands
the challenges firsthand.
We're here to help no matterwhere you are in the world.
From glucose management, to self-carestrategies, the latest tech,
(32:20):
sports and exercise, weight loss,type one pregnancy and emotional
wellbeing, we've got you covered.
We offer consultations inEnglish and Spanish via phone,
video, chat, email and text.
Wanna learn more?
Visit integrateddiabetes.com oremail info@integrateddiabetes.com
(32:41):
to schedule a consultation.
On behalf of Think Likea Pancreas--The Podcast.
I'm Gary Scheiner, wishingyou a fantastic week ahead.
And don't forget to think like a pancreas.
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