Diabetes Canada is proud to present this webinar about diabetes distress, the mental impact of diabetes, knowing when to get help, and coping strategies, featuring two experts living with T1D: Michelle Sorensen, registered psychologist, and Ashley Lawrence, registered psychotherapist.
good afternoon and welcome everyone
thank you so much for being here my name
is brooks roach i'm manager of patient
education with diabetes canada and i
would like to begin by welcoming you and
acknowledging that i am joining this
webinar from the traditional and
unseated territory of magma people
wherever you are joining or watching
from i invite you to also express
gratitude for the land on which we live
and learn and to acknowledge all the
past inhabitants of the indigenous lands
we call canada
we are here today to talk about diabetes
stress and more broadly the mental
health impacts of this disease
i'm very excited to welcome michelle
sorenson a registered psychologist
and ashley lawrence registered
psychotherapist who are joining us there
in the same frame
which is a first for our webinar series
so welcome to you both
um
both of uh both of our guests live with
type 1 diabetes and they're going to
provide a really fascinating
professional and personal lens on on
this topic
so thank you to you both for being here
um
so what we're going to be talking about
uh our experts are going to be answering
some key questions that they have been
hearing from patients
as well as you know what we've been
hearing and exploring over the past you
know decades but but more specifically
over the course of the pandemic how that
that's come into play as well
we'll be taking questions from you our
viewers as well so if you have a
question at any point throughout the
webinar feel free to comment underneath
on facebook live
and we'll be sure to to ask michelle and
ashley
so we'll dive right into it and i'd like
to start by asking you michelle
if you can just provide us with a
definition of diabetes distress so what
does it mean and what does it really
stem from
thank you so much um yeah i think
there's lots of different definitions
out there the one i like to use
is from a research paper where they say
diabetes distress refers to an emotional
state where people experience feelings
such as stress guilt or denial that
arise from living with diabetes and the
burden of self-management
and i really like that piece about the
burden of self-management because as
the three of us and many viewers know
that that is like a really heavy burden
on type ones
i think as well i just add to that that
those particular emotions like often
people think about distress as being
depression but diabetes distress and
clinical depression are not the same
thing like the diabetes distress
sure ashley sees we see this with our
clients it's very specific to diabetes
and often it is the guilt or you know
not feeling like you're doing enough so
all those sort of aspects
yeah i um i think it's interesting and
you know as we're having this discussion
in november 2021 so it's national
diabetes awareness month 100 years since
the discovery of insulin
and you know for me myself it's it's 20
years this year since i was diagnosed
with diabetes and um i was wondering if
you could speak a little bit in
preparing for this webinar we had this
conversation about the importance of
anniversaries i'm wondering if you folks
could touch on that and this this idea
of hitting a a milestone or realizing
that we've
lived so long with a disease or lived
you know a majority of our life with it
or whatever it might be and the impact
that can have on on what we we deal with
well today is actually my nine month
anniversary which is
more or less exciting i suppose um so i
was actually just diagnosed this year so
i feel like
i mean when brooks has sent us this
invite i was like oh what a great day to
do it
nine months why not for me
i mean
i mean unlike yourself brooks like 20
years is a long time but nine months
feels like an accomplishment so
something i'm quite proud of i suppose
um
when i think of you know anniversaries
and i think of all these things and just
to go back on your point their books of
you know like what is diabetes distress
something that like really resonates
with me is this idea of juggling balls
i cannot juggle one ball let alone four
balls and having diabetes is like
juggling four balls you know and then
you're kind of told to juggle your four
balls perfectly but then once you've
acquired that awesome skill of juggling
your balls there's going to be these
variables that are thrown into place
you're not going to know when they're
going to come what they're going to be
and that's going to affect your ability
to juggle
so i mean now at nine months i can
definitely say that
i'm feeling the
the burden of juggling these balls
whereas before i was like oh yeah yeah i
got this no problem so i think it's
important for anniversaries in general
just to kind of
always be proud of yourself for like
hitting a whether it's a big milestone a
small milestone but they are really
really important
yeah and i think you know
that's really well said and one of the
reasons why i thought it was nice that
ashley and i were doing this together is
because we are in these different stages
like i am closer to you brooks i've been
living with diabetes since 1999 i as
some people
know who have heard me chat before about
diabetes i was in the middle of grad
school when i was diagnosed so actually
similar like ashley in my 20s but now it
has been many years and i remember for
me year 20 was a big one you know that i
really kind of felt
that felt really significant to me and
brought up a lot of emotion as i
approached the anniversary and so one of
the reasons that anniversaries really
matter is because it is like grief and
if we look at people grieving like
people who reach the one year mark of
losing a family member or
since a divorce or like different stages
it can really bring up a lot of the
emotions
and i've often said when i'm talking
with diabetes educators
that when they're trying to
conceptualize like how to look for
diabetes distress in their patients and
how to be kind of aware of it that you
can think of it like often what we're
calling diabetes distress it's some form
of grief and those stages of grief like
um you know denial bargaining except we
work towards acceptance depression anger
they're not discreet like we don't just
go through them and we're done and they
never come up again you can go back and
forth
so you could have um
you could have someone pass you know
their ten year mark and then they're
having a baby and
having a baby brings up lots of emotion
and it might make you angry at your
diabetes all over again because here you
are trying to deal with this like big
challenge and also joy in your life and
you've still got the diabetes to take
care of so i think those anniversaries
are really like gateways into the
emotional experience
it's really interesting and i think the
element of time is such uh something
that's been fascinating me
not not only in the form of
anniversaries where i can point to a
number and say it's been this many years
that i've been living with this but also
this idea that
i think a lot of the time when people
try to empathize or understand the
impact of diabetes
i'm sure that's all really hard at this
moment or when you're diagnosed i'm sure
that's a real shock and it's hard then
but i think the difficulty and it's you
know actually that metaphor of juggling
balls is that you're told you have to
juggle these forever and it might feel
easier sometimes or you might get used
to it but you still have to do this for
a long long long time and that can be a
really difficult barrier i'm thinking
myself and some of
the moments i've found most difficult it
is that thought of can i not just take a
break sometime can i not just take today
off from living with diabetes and the
fact that the answer is no is often
really really difficult and kind of
feels like it's beating me when i'm down
maybe
and i wanted to on that note actually
ask you
when i'm when someone is in one of those
lower moments or when when folks are
feeling consistently like they're
they're discouraged or down um how would
they know when it might be time to
actually seek help and so what are what
are some of those signs and symptoms of
diabetes distress what might it show up
as in their day-to-day life and how do
they know when that's to a degree where
they can't
um just push through it or just uh wait
for it to pass
right well you kind of just mentioned
something that's really important there
is you know those the shift between you
know okay like i accept it in this
moment and then the next moment it's
like oh i want this gone i don't really
want this anymore that sort of stuff and
i find that that can be very isolating
and you do feel very alone i mean from
personal experience and a lot of what i
hear in my practice as well is like i am
alone in this and i have to do it myself
so i find that is a huge sign
i guess it's a symptom too of just like
trying to battle things on your own you
live very much in a world where you know
do it yourself you got this you can do
it but
i feel like if you really tune into that
isolation that is always like other
people could kind of pick up okay like
they're kind of battling it by
themselves maybe i should reach out
maybe i should ask something you know
that's always a good sign to you know
get some help and then another huge one
that i see often and i feel myself is
avoidance
so i mean often avoidance feels like the
easiest way to cope but it's always to
remind yourself that like avoidance
isn't coping it's like okay i'm not
doing this so i'm not coping
so i find that's a really really big one
to tune into and i mean like as you said
of course you like you want those
moments where it's like oh i just don't
have diabetes anymore you like take your
dexcom off and it's like oh i'm free for
five minutes you know um
but if you're like continuously avoiding
that's always a good sign to kind of
check with yourself and say like what do
i need you know whether it's like do i
need to just like tell somebody that i'm
feeling this way do i need to reach out
for the help there are so many options
so
those are my go-to's yeah and i think
what i was thinking about as you
describe that ashley is that what we
really see as therapists is
like sometimes people think they come to
therapy to have their problems fixed for
them and our job is really to help
people
to find their own solutions and to like
build strengths or recognize the
strengths they already have
and that's something that can happen
with your diabetes team sometime like i
i know educators always welcome
um you know learning more about how they
can support their patients and and many
of them are very skilled at it and so
what diabetes educators or a doctor
or a therapist you know can do is just
let someone tell their story so for
example if we look at the trauma of
living with diabetes like most people
living with diabetes
maybe even more before our improved
technology but even now with the tools
that not everyone has equal access to
but luckily some of us have access to
and you know diabetes canada is working
on more access for more people so we
really appreciate that
but like many people with living with
diabetes have had traumas like severe
hypoglycemia
needing help from other people maybe
even having a seizure
parents who have had the trauma of
finding their child having a low in the
middle of the night and they're
terrified
and so what i encourage people to think
about when they're experiencing kind of
some burnout or distress is not
underestimating just the power of
telling your story
to a supportive person which could be a
friend
but some people find that not everyone
understands diabetes so going to a
professional or to your team i think can
be helpful yeah that kind of comes back
to like when you can express like i have
this worry or i have this anxiety
whether it's you know like you're the
parent of somebody with type one or you
have type one or you have a friend that
you're worried about
i find that just being able to like take
that off your chest and say okay i am
anxious about this that validation that
you know a professional or i mean even
friends can do it like i don't think
that that's out of the scope but just
that validation that like it's okay to
be anxious yeah because i feel like i
mean personally there's like pressure to
be good
for diabetes you know the perfectionism
combined with diabetes is for sure i
think another topic we might talk about
but just one last note on that with the
trauma
the idea that i mean many people
encounter trauma in their life but you
can't really live with type 1 diabetes
without having some really hard moments
dka or severe hypoglycemia
and so we have to process the emotion we
need to tell our story and
the kind of things that might happen if
we don't is like a young person who has
a severe hypoglycemic episode is really
scared doesn't work through it and they
start running well this can happen at
any age they start running their sugars
high
to avoid a low and that becomes a habit
and then all of a sudden being anywhere
close to normal range
feels terrifying we see a lot of cases
like those often
diabetes teams will refer people in that
situation so the way we prevent that
from like setting in that trauma that
kind of post trauma response is to tell
your story
i'm curious as well if we have a viewer
you know that might let's say be
fairly new to life's diabetes there
might be a caregiver and they haven't
experienced this yet um
do you folks have any advice if someone
doesn't have direct experience with one
particular traumatic event but the the
trauma they're experiencing is more it's
prolonged it's this this constant
element of requiring extra decisions and
constant uh vigilance
just to speak a little bit to the fact
that it might not be these really sharp
spiky terrible moments it might just be
that it's constantly really difficult
like the wearing you down the day after
day right well and it is constant you
know it's not like you can just even
pick up and go do something whether
you're the one dealing with your own
diabetes or you're the parent of
somebody dealing with it like there's a
lot of extra planning which
i find takes it takes a toll on anybody
you know like you can't even just go for
a walk
you gotta be prepared so it's true yeah
i think the acknowledgement so people
validating how hard that is and this is
why people with type 1
really need people in their corner who
recognize that most people with diabetes
do
have a lot of the information needed
although as you're alluding to people
who are newer to this whether you're a
parent or someone living with type 1 it
does take time
to gather all the diabetes education and
learn
but you know for anyone listening who's
a supporter of someone with diabetes
just knowing that acknowledging how hard
it must be
that actually means the world to people
and sometimes especially really logical
problem solvers even like sometimes
healthcare professionals will think well
how is it helpful to say
wow this really sucks or you know boy
this is so hard that sounds negative but
actually i think for most people with
diabetes
it's like oh thank you yes it is i
remember once i uh
i had like it was a sunday evening i
went to get my last vial of insulin from
the fridge and i dropped it and it had
never happened to me before and it broke
on the ground and i was like oh great
now to
switch my pumps you know i have to go up
to the pharmacy so off i go
not too upset but you know it was still
annoying and the pharmacist who was on
just
happened to say to me like as he was you
know preparing it he said oh type one or
type or you're type one you kind of like
had a question mark and i said oh yeah
type one and he said
oh that must be a lot of work or he said
some kind of acknowledgement and i was
like whoa like empathy this is like
really awesome and of course i'm always
preaching it to every like to health
care professionals
so i said yes and you know the moment
passed and i started to walk away and
actually turned around and i went back
and i kind of got a little choked up
saying it i said
you know as people with type 1
we don't actually get that many people
asking us questions about it
and it just it feels really good thank
you and he was like oh okay thank you
you know but i thought hopefully then
he'll have the courage to do it again
and to touch on that i think that just
that validation of reminding people that
like oh like what you're doing is hard
is so nice to hear just because like we
know the solutions we know what we need
to do but sometimes you just it just
doesn't work in your favor whether you
try your hardest or not you know so i
find that if someone can just
acknowledge like where you're at versus
that solution focused kind of like well
why don't you just take more insulin or
why don't you just go eat your sugar you
know it's like
i know that i have to do those things
but right now i just want that
validation and i think that comes back
and we might talk about this more too if
you know are you you have support but
and as michelle has said many times
before you know are you getting the
right support
which can be two very very different
things
yeah that's right many people if you say
have you got a good support system
they're very kindly trying to be
positive or even just believing it say
oh yeah like i have my mom and i don't
know my brother or i have like my
girlfriends and then if you say oh and
are you getting the support you need
from them then you might hear things
like
you know or like oh you know my husband
started using my dexcom share but
when he sees my sugar goes high he says
what happened and i know he's trying to
be helpful but what goes through my
brain is
you know he thinks i ate too much he
thinks i'm not being careful and so then
we try in therapy to work on
assertiveness skills um and that's
something that diabetes educators can
really work on too with their clients is
like
you know clear direct communication
honey when you see my sugar go up or
down on dexcom just send me a little
emoji or like a question mark and are
you okay or like actually coaching
people on what would feel helpful
that's that's a super important one and
it's it's really interesting um
but yeah being assertive um it's
interesting where the the nature of the
disease is one or it has to be a lot of
self-advocacy it has to be you know a
person explaining their own needs and
their own figuring out what works for
them individually and i can often feel
you know i've i've heard and even
experienced myself
when it comes to explaining this to
another person it can feel
very tiring or feel like it's been done
100 times before
and the tendency can be sometimes just
say what however they support me is fine
but i think it is important that you
know
to ask for
you know if there's a way that you can
be supported better to ask for that
because if if it's going to help you
manage your your condition better then
everyone wins
as simple as that emoji
yeah yeah
well parents and kids and teenagers that
really helps them with the share app
we've heard these stories is like you
know if you send a cute candy emoji and
a question mark
it feels very different to a teenager
even though our parents saying
are you treating yeah it sounds so
innocent but to it like adolescence
about many things not just diabetes
we'll acknowledge
it's just a natural part of development
that when your parent tells you to do
something you all of a sudden want to
not do it or do the opposite so yeah
problem solving yeah and even just when
you kind of think about it like it's all
cyclical so
you know if you
are
not asking for help or as you said
brooks like if someone is asking you
about temp one and it's just easier to
kind of like shoot away and be like i
don't even have the energy to explain
that's avoidance so you're it is a
little bit more of an effort to say how
you're feeling or to ask for the help
but in the long run
that will help you with your diabetes to
stress so it's like take that little bit
of effort to
ask the question or to explain so that
somebody does have some knowledge
because i'm sure that we and like many
people watching probably know there's
not much information on type one
you know it's very much a big group of
oh you have diabetes
okay you have a sugar problem
essentially you know so
just educating people can be really
helpful and the vulnerability there kind
of invites empathy and compassion so if
we get aggressive and we like turn
against people we tell them they're
wrong we tell them
you know they're
stereotyping us or whatever it is that's
happening
you know when someone says oh my
grandmother has diabetes or you know
like
lots of things can bring up the anger
that goes along with grief
um like things like
getting funding getting the the
um disability tax credit like for a lot
of type ones they're like why am i so
emotional and crying when i get off the
phone with insurance but again
there are these little like pricks in
your veneer and then the grief comes out
but i think assertiveness like opening
up and turning towards people
can really invite more
compassion and also we just try and do
it and say it doesn't matter if people
don't always respond better
it might just feel better to open up a
bit than to keep it all inside like that
might help
prevent more diabetes distress
an example i've used before is at one
point a handful of years ago i had to go
through like some eye testing like they
thought maybe that there was something
wrong it all turned out okay but it led
to some really like exhausting
afternoons at the hospital doing all
this testing my kids were young i'm
self-employed missing work is expensive
all of that
and then one day i had a very um
keen med student come in
and he started
telling me how his grandmother has
diabetes she's blind
and you know it's really important that
i take my medication
because if not you can end up blind and
with amputations and i was just like
oh gosh and then i thought of how i'm
always encouraging people to be
assertive so i just said like i said oh
you know what's interesting with type
one is you might do all those things
right
and then you could still end up with
complications it's not always fair and i
have to say because i said it just very
calmly he just looked at me and he goes
well you know what you would know that
better than me because you obviously you
live with diabetes and i was like okay
this was the better moment i could have
just kept it all inside and left feeling
really angry you know
we've probably all well you're still
you're only nine months in yeah probably
i'm sure brooks 20 years in has plenty
of uh stories
i i do and i will spare our viewers from
any of those but i i do want to say i
love the uh
the response of i suppose you would know
that better than me um anyone listening
like you're if you're supporting someone
or if you're if someone's opening up to
you about uh whether or not it is
diabetes some some
health challenge they're they're living
with um rather than informing them of
you should do this or have you
considered that just hear them out i
think that's a beautiful response yeah
um
i wanted to ask both of you folks a bit
about how this relates to burnout and
specifically diabetes burnout
okay
so i find that like i do see this come
up a lot in practice is you know the
three main components of burnout come up
a lot you know people will start to say
like i just today was so exhausting i
can't handle another day like today so
that kind of tunes into the the one
component of burnout which is emotional
exhaustion you know they just it's so
exhausting they don't want to do it
anymore you know i hear a lot of
i'm kind of just going through the
motions because it's the same thing
every day more or less um which is
depersonalization and then the last one
is
i'm not good at this anymore you might
again you might be trying super hard to
kind of get through everything that you
can your you know your bulletin right
you're counting your carbs and that
comes down to like a loss of personal
efficacy which is the third component of
burnout
and i hear it all the time you know it's
just like yesterday was great but
today's not good so i'm just not good at
this anymore and that i find leads a lot
to distress because
it's hard on yourself you kind of like
wear yourself down in that sense
and we know that there's this flip side
to
the i mean thank goodness for
like cgm
fgm i guess flash uh meter and the
improved data like for sure for sure it
has saved lives and it will save lives
by preventing complications
but i like to say you know with some
lightness with patients we can use it
for good or evil so people who are
monitoring their data like whatever app
they have it on there's a multitude and
like they're looking at it every day it
can become obsessive
and the problem is that
the better you do
the more likely it is that at some point
you don't do as well if you know what i
mean like if you get
85 time in range one week on your cgm
that is fantastic some people listening
will will be like the perfectionist
listening to this will be like well
that's not bad not realizing that you
know for most people that's like really
something that some people have never
even seen like not giving themselves
credit but at some point it might have
to dip down and then
you know for perfectionist living with
diabetes like here's the burnout the
self-efficacy piece that ashley refers
to
it will never feel good enough and so
you could have an amazing a1c or time
and range that your diabetes team is
thrilled with
but if you never feel good enough then
you know the whole point of improved
diabetes management is quality of life
and longevity but you know we don't have
a good quality of life if we're telling
ourselves a story we're not good enough
so we kind of have to watch how we use
that data i think
and it's important to recognize that
bernard could come from so many areas of
your life and living with type one you
know it's easy to kind of say like well
it must be work that's burning me out or
it must be you know having the kids home
from school or it must be you know the
dog kept me up all night like i'm really
burning out in that sense but it's
important to kind of turn inward and
recognize that maybe it is my diabetes
it's burning me out because i often see
it too much just like works too much for
me i'm burning out and then you take a
break from work but you're still
constantly checking you're still
constantly still trying to do all those
things and
you just again it comes back to this
idea of like you're just never doing
good enough
so
that kind of is that piece of like
diabetes and burnout come
hand in hand as well
i think there's a there's a fascinating
piece to that which is something about
the perfect and not being the enemy of
the good and it's when folks are so
obsessed with perfection if it reminds
me of
you know the student who is so
you know consistently getting a's and a
pluses that one b plus just is so uh so
hard to reconcile even though you know
from from an outside perspective that's
still an excellent grade and it's
probably still reflective of putting a
lot of effort and time in um so i think
you know being obsessed with this these
perfect uh
like glucose graphs that we see on on
instagram or whatever or people that
have seemed to have it all in control
you know it's it's not that uh
i think i think the focus has to be more
on process than outcome that if you're
if you're putting the work and thought
into
managing what you do as well as you can
and that's that's fine like it's not
going to look perfect
um something we talk about a lot that we
kind of you know our therapy the style
we use most of us here at uh resiliency
clinic is kind of like an integration of
cognitive behavioral therapy with
different forms of mindfulness including
mindful self-compassion and we often
recommend like a great little exercise
that helps you blend
the balancing of thoughts and looking at
more factual evidence of cbt with
mindfulness which is naming hard
emotions identifying
you know your thoughts and working on
acceptance when you can't change it it's
to do gratitude and affirmation
journaling so like gratitudes what am i
grateful for in life that boosts our
mood but affirmations exactly what you
just described books like giving
yourself credit so focusing more on
process not just outcomes
means that
like that that actually helps our sense
of self gratitude help boost our mood
but the affirmations like giving
yourself credit for all the little
things
like i've had a weird pattern the last
few weeks with my blood sugar
um where i'm having some unexpected lows
in the night and i'll think i've got it
and then it happens again i don't know
if it's the change of seasons i just
keep trying to adapt
but you know last weekend i think it was
i had a couple of days where i was
really quite up and down because you
know the lows and then you rebound and
you go a bit high
and what that practice of affirmations
helps me do
is like if i start thinking oh my time
and range is going to be terrible this
week like i don't look at it often i get
an email to me on sunday otherwise i
never look at it i just look at the
summary once a week that's how i do it
but if i start thinking oh what's my
time and range of course i'll feel upset
but if i give myself credit and i'm like
you know michelle you stayed really calm
handling these ups and downs today you
know i'm coping okay with it i'm not
snapping at the kids i'm trying to like
roll with it well then your mood's not
so bad right yeah and it's kind of like
a little bit of distress tolerance i
guess you know just reminding yourself
that you're gonna be on that kind of
roller coaster every now and then but
give yourself the credit when maybe it's
a couple hours where your line is more
straight it's like give yourself a pat
on the back for that
it's always nice to see that's such a
great balancing i've worked on that with
people is like when your sugar goes high
i mean it used to be that maybe you had
five or six i mean if you were testing
frequently like you know in the old days
say a decade ago people had these data
points throughout the day and i when i
learned cbt coming
you know a little bit through grad
school but afterwards in my private
practice that's actually when i really
turned the corner of it with my own
diabetes management and my own
perfectionism as i was starting to apply
it to diabetes this is before i was
really working with
a lot of clients with diabetes and i was
like oh boy if i have like a
16 or a 12 or whatever that is the
number i remember not the six and the
eight or the five or like whatever it's
not really about the numbers but
whatever ones you're okay with
um and so that's really good
self-reflection to be like okay remember
i love how you said it actually like
remember the time of day that you were
actually in range to balance it out and
try and kind of like
soothe your nervous system to like help
yourself settle
it's uh it's really funny i have a uh
notebook here that i just pulled out and
i
remembered last week i had a really
horrible night of blood sugars i was up
in like
15 to 20 all night and just
no matter what i did couldn't get it
down and woke up and was just feeling
like anyone that watching who had
experienced that nose had like i was
groggy i had
super thirsty i felt like i don't know
felt
dull and
what i wrote down was
i'm actually
grateful for a day like that because it
reminds me how often i'm managing things
super well it's like it's such a shock
to me uh because it's so out of the
ordinary and uh you know it's it's it
sucks in the moment but it was a
reminder that like overall like yeah i'm
doing a great job and it's it's those
are inevitable they're going to happen
and it wasn't wasn't something that i
made
a mistake about it was just
sort of an environmental issue like you
know what i just couldn't figure it out
that night and uh had
had a difficult day and and sleep
because of it but over the span of
that week or that month like i'm still
doing great
um i i just find and i'm not looking for
like good job brooks i'm just saying
that was kind of a that's what that made
me think um well we're thinking good job
we're thinking that's yes
and you know what i can tell you i was
the same when i well recently when i've
had some ups up and down days i was like
wow michelle the fact that this is
catching you off guard
really shows you
like in recent years i mean honestly it
is a bit more stable again because of
improved technology
maybe because i don't have tiny little
kids anymore they're a bit less you know
it's a little less chaotic but you're so
right that's a great way to balance out
thoughts to be like oh yeah things were
clearly going well
because this feels so good yeah and it
does come down to balancing thoughts
like i i mean just because it's so new
to me still it's like i feel like
my thoughts are on a roller coaster like
you should have better control and i'm
like remind yourself it's only been nine
months you know and you're doing a great
job but it is a lot of like that
internal dialogue of
okay like i'm maybe i'm not doing great
today but look at where you've come from
nine months
20 years 10 years whatever it is you
know there is still progress to to
definitely take a look at
and i mean we might have some people
listening that feel
very differently right that they're
always in chaos that
um and again like i think for people who
are really struggling with their
management so there's actually a
diabetes distress scale that some of the
health professionals use
and that's like one section of it like
one of it is about one section is more
about health care provider contact like
that can be a source of distress for
some people when they are struggling
then some of it is about like
just sort of your like regimen your
approach your like all your technology
um and so anyways whatever if people out
there are suffering and they're trying
to identify why they can't you know
quite
like they can't improve their management
how they want to
um you know just to stop and name what's
happening for you like is it that you
need more support trying to get past any
guilt or shame
and saying well i'm suffering not
because i'm not good enough but because
diabetes is really hard
it's super difficult to do and you need
emotional support and you need funding
and you need the tools right so i think
if people can try and like regulate
their
nervous system a little bit like be kind
to themselves with self-compassion then
you can move towards
maybe problem solving yeah and actually
something i see a lot is this need to
like please your care team you know so
it's like well i'm scared for my my
endocrinologist appointment because i
don't really want to say maybe like my
time in range hasn't been great
but i think that is when you need to say
that the most like your team is there to
help you so when you kind of feel like
okay i don't
have this under control and i do see
that as shift a lot from like if you're
going from
like if you're younger and your parents
are taking care of your diabetes into
your adulthood and you're trying to
grasp the concept of it that can be a
huge shift
um so it's like ask the questions don't
it is scary i guess to go to i feel like
you like when you present yourself to a
doctor it's like look i'm great you know
like everything's perfect
yeah okay yeah you want to like seem
good at what you're doing but
i think that's like the person that you
should probably be the most honest with
because they are there to help you i
certainly hope they are at least you
know so and that's the vulnerability if
a patient starts off saying
i cancelled their last appointment
because i was worried i would disappoint
you or i've been avoiding seeing you
because during the pandemic my blood
sugars are up and i've heard many
examples of people doing that and their
care teens have been very empathic like
a few people have told me that their
doctor says you know what lots like
everyone's blood sugars are up like
especially in the first year where like
everyone's stress response was so high
um so yeah that opening up and being
vulnerable is probably the starting
point
so i think you know i really appreciate
we talked about
um this this importance of gratitude and
affirmation and of balancing one's
emotions
um
and and you know even using this uh
these variations michelle as you talked
about at resiliency clinicians these
forms of cognitive behavioral therapy
are there any other strategies that you
folks recommend or have have encountered
for coping with
the inherent distress that comes with
diabetes
well i think i'm
interested to hear what ashley has to
say but i think
the form of mindfulness that i find
to be such a good fit for many people
these days but definitely for people
living with chronic illness is this idea
of mindful self-compassion so it's
we can kind of define it as
like
try and foster the self the compassion
you would show a small child or maybe
your pet like a vulnerable being
and
try and apply it towards yourself and
that is so much easier said than done
for many people and again thinking about
trauma i mean some people grew up
in a time where they were told you're
not going to live a long life with
diabetes or you won't be able to have
children like not so not our generation
but you know previous generations of
type 1 diabetics so there's lots of
messaging that could lead to the
opposite of self-compassion like
self-criticism
um but that's actually i think what we
really try and use the most
and uh i'm hoping we get more research
but i know i had in our chat the other
day i was saying that there was a
research study i think it was 2016.
and it was discussed on the edelman
report like a good youtube series by
steve edelman a wonderful endo with type
1 in the states and he was interviewing
dr bill polonsky who many people know a
psychologist specialized in diabetes and
they were talking about this study i
can't remember all the details of it but
it was basically just teaching very
simple self-compassion to people living
with diabetes like nothing that's what
they said it was like not super fancy
it's not difficult but like if you see a
number on your glucometer that you're
not happy with
trying to
self-soothe like self-kindness it's just
a number it doesn't define who i am
there's lots of numbers like i you know
just being gentler with yourself and it
not only reduced diabetes distress but
the intervention also helped reduce a1c
um i can't remember like i think it was
a significant difference statistically
not like a huge number
and that just makes so much sense to me
like i've been involved in a lot of
mindfulness training over the last six
seven years and i have noticed the
impact on my diabetes because i think
you know people in the type one
community joke about the rage bullets or
like when we're upset with the high how
we might overreact and so i think a lot
of that
roller coastering might level out with
self-kindness you know yeah and like my
kind of take on that is paying attention
to your emotions so like that kind of
plays into self-compassion but if you
can notice like this is what i'm feeling
and this is what i need that makes the
world of a difference
you know if you can
like i said you always have to turn
inward like this is the emotion that i'm
feeling if you're feeling angry that's
valid 100
but what are you going to do with that
anger
you know a lot of the times too and i i
do put this a lot in practice is
brooks kind of said like the other night
there's going to be times where you
can't get your blood sugar down and you
can't get it up or whatever is happening
but maybe the source of that is more or
less an emotion and can we take care of
that emotion that will actually then
help with your diabetes as well you know
stress is a huge one so if you're like
stressed
to like the top of your brain
and you're like nothing i do with my
diabetes like my blood sugar is always
super high well maybe if we start paying
attention to more the emotion and the
feeling it can actually really help with
that management and take away from the
distress as well
that's right if you try and just push
past the emotion your alarm bells are on
right like you are in a state of trauma
to some degree
and it's interesting for you because you
had been doing this mindfulness training
yeah um
a few ways including from our colleague
taycha here at the clinic tasia bryce is
a mindfulness teacher and she was
teaching courses at the clinic before
the pandemic especially when we could do
it in person and ashley did the training
so it's interesting like when you were
done yes like when i was diagnosed i
i i don't even know if i'd heard of like
mindfulness or learned any buddhist
principles you know it is super helpful
and like honestly i could probably
attribute a lot of my
more or less success and progress into
just like trying to take care of like
my insides
if that's the way you can put it but
yeah because it is it's very harsh it's
very hard and i find that if you can at
least pay attention to what you're
feeling and give that like give your
emotions a big hug i always like frame
emotions as little people have you ever
seen the movie inside out picture that
you have all those little people inside
of you and they need big hooks too you
know so if you're feeling sad you're
allowed to feel sad but like
pay attention to it and that's like i
find that is like very helpful for
coping
and you can't rush through it like
ashley found out she had diabetes brooks
in this very office like we were meeting
for supervision we meet every third
wednesday and ashley had actually been
sick for a few days and my point here is
that i knew the moment
we realized that ashley had diabetes
that it would take time like i knew that
eventually you'd have to feel more what
you've been feeling lately and you can't
rush through it like you can embrace
your emotions
but grieving is a process and
yeah someone diagnosed when they're
young like you were
can't grieve the same way at five or six
or ten as you will when you're a young
adult so it was like a really surreal
moment for me because ashley and i had
been working closely together and i'm
very fond of her and we were sitting
down and i i was feeling hungry so i
still remember it was like 10 a.m and i
said oh i'm just checking my dexcom
because i never want people to think i'm
texting i'm sure a lot of type ones can
relate
and ashley said
so what are the signs of diabetes and
she started asking me questions and as
soon as she described her symptoms and
the fact that she'd been sick to her
stomach the last few days
i had a bad feeling and i got out my
glucometer and
the number was very high and i said
please go wash your hands and it was
still the exact same number
and so yeah it was a very strange moment
for me where i was like oh gosh ashley's
got so much ahead of her
and it has been quite a roller coaster
but
i do have great support and
i ask questions when i need them and ask
for help when necessary so
i've been very blessed in that sense
but yeah it's like we can have a lot of
coping mechanisms and then i think part
of mindfulness is when you're having a
day where you can't use them and you're
really struggling name that and allow
yourself the space maybe you do let your
sugars run a bit higher for a day and
you don't beat yourself up so it doesn't
become a year like the imperfection of
it all right
i think that's a big one too and i i
don't remember who i was chatting with
but like taking a an appropriate break
is okay once in a while like one big
thing that i know i love to do is like
when i do have to change my sensor
as i give myself some space just like
okay like lay in bed like watch a tv
show i know that i'm safe i know that
i'm in a good spot but it's just so nice
to like not have a gadget or not have to
you know check my phone and it's like a
moment of peace which
so take breaks every now and then one
appropriate of course don't you don't
want to let it get too far ahead of
course but
it's nice to do
the anti-perfection
yeah i think a bit of anti-perfectionism
could be helpful for a lot of folks that
are that are watching this
and on that note of folks who are
watching i do want to make sure we have
some time to answer some of the
questions that we're receiving
so first question i'll pose to both of
you is a viewer who's asking
is this common among young children with
type 1 and how can you help them
well i've worked with a number of
parents and um
and i've given lots of talks to families
in the community and that's why i've
been really blessed to meet lots of type
1 parents and kids
and yeah i think again like with grief
and children in general because grief
and diabetes distress are pretty closely
related here um
again just important to remember that
kids are different than adults right so
kids could be really mad and like the
big feelings that ashley kind of refer
to like the big big feelings um one
minute and then they could be fine the
next and
if we go back to what we were saying
about like we need validation as adults
and how soothing it is when someone like
the pharmacist i mentioned just said wow
that that must be hard
that i think with kids that's actually
the parenting approach that at the
clinic we really like to advocate for
with parents in general is this kind of
connected parenting approach it's all
based on attachment such a toronto's
social worker jennifer coleria has a
great book called connected parenting
which is not about diabetes but i highly
recommend it to parents who have a child
with diabetes she teaches the calm
approach which is like sort of
represents like c is for connect a is
match affect ella's listen really listen
and if you do all that
the m is mirror you reflect back like a
mirror to your child the emotion they're
feeling
so the essence of that approach there's
a newer kind of very popular approach in
family therapy called emotionally
focused family therapy which is very
similar
and the idea is that if you're saying oh
gosh sweetie like the diabetes is really
getting to you today like you're really
sad eh or they come home and tell you
that they were having a tumultuous day
or the parent sees it on the share app
or however it works out
just to be there and let them have an
emotional reaction will actually help
them
bounce back quicker
each of my kids actually um have a child
in their class with type one this year
which has been really interesting so
more in the first week of school of
course they're very familiar with the
technology and what the sounds sound
like and they were coming home and
saying oh yeah like so and so had lots
of you know this happening and i
remember saying i'm like yeah transition
it's a new week of school like
in my head i'm like their diabetes
distress and the family must be super
high because the first week of school is
stressful enough without your blood
sugars going crazy yeah and i mean i
can't really speak too much to that
topic but what i do see is just that
differentiation between like if you're
the only kid in your class that has to
you know give insulin on pizza day or
whatever like
again validating that
it's okay because like i and what i do
here is just like well i'm different
than everybody else you know so i
imagine that the distress is present in
kids as well just maybe in a different
way than adults
well my ten-year-old twins actually last
week had some halloween candy at school
or whenever halloween was i can't it was
like a blur um
and i actually said i said oh what about
you know so-and-so who has diabetes did
he get to have some
and my daughter said yeah but at a
different time than us because of course
i'm sure he's still on injections and it
kind of broke my heart but if we think
about them talking about that at home i
have to say the teacher and parents
obviously planned this out there was an
amazing talk at the beginning of school
to help all the kids understand he just
wants to be like everyone else but
safety issues to watch out for it was
and actually we owe a lot to to like the
canadian pediatric society and diabetes
canada i think it was maybe the jade rf
like there's been a lot of work in
recent years to improve school awareness
and again huge advocacy like life
changing for kids whose schools better
understand what they need
but if we think about diabetes distress
and what that looks like for a kid who
can't have
maybe as much candy without
repercussions you know or has to time it
with their insulin if they come home and
the parents affirm
they like acknowledge that that's hard
to feel different
and they say what did that feel like was
that hard for you and they don't try and
tell them that it's okay like as a
parent
any grief our kids have we don't want to
try and convince them everything's fine
right let it let it out
and then they have the strength to cope
hopefully yeah for sure
yeah
that's really fascinating the idea of of
just
not trying to make the grief go away or
the negative emotion go away because i
can see a connection there with this
importance of assertiveness uh later in
life can very much be fostered by just
saying like yes like this is really
difficult and you can own that and
that's completely valid
would facilitate being more confident in
being assertive later on and and being a
stronger self-advocate um so i think
that you know to that viewer like you're
you're not only helping the your child
now but i think you'll be setting them
up um to do so really well themselves
later
um
we have another question that's on a bit
of a similar note also from a caregiver
who says my daughter often feels sad
because she can't have sleepovers like
her sibling and can't do stuff that her
classmates can do how can i help her
work through those emotions
again it's the acknowledgement i mean
hopefully over time there's problem
solving or technology that allows kids
to have some version of that but um
yeah we have to acknowledge that
it does feel unfair or that it's you
know really hard
not to be able to do that um
and what that kind of brings up is that
sometimes like when i've done a
presentation where i have a lot more
time to teach the connected parenting
approach
i've had a parent in the audience put up
their hand at the end and say
okay but and i can totally understand
where this comes from because i'm karen
i have four kids where they're like but
what if aren't we tr aren't we then
teaching them that they're gonna get all
this empathy and compassion out in the
rest of the world and that's not true
like a boss won't always understand that
you need more breaks or you know that
kind of idea
and actually it works well not exactly
the opposite but no it doesn't work that
way where the children are ill-prepared
if with their family they have secure
attachments and connections and a safe
place to land and someone who lets them
let out their emotion like about not
having a sleepover
then you can move into problem solving
like can we have an almost sleepover
where you have a friend over for you
know a movie or like you do this or
um
but we can't start fixing and problem
solving until we feel connected and we
let it all out and it means that if
someone
makes an insensitive comment outside of
the family that the kids are better able
to deal with yeah they have someone to
come home to they know that they yeah
they don't really they're not searching
for it out there they don't need
everyone to be like their parents they
need to know that those key attachment
figures get it have their back
and then they can better handle the
disappointments or sometimes very
insensitive or
just people not knowing like what they
don't know and saying the wrong thing
about diabetes right
we have another question it's more of a
comment and it's uh
i wanted to share this and the person
says
okay you just made me cry
31 years and i think that's what i need
acknowledgement from someone in my life
of the challenges i sometimes have
i love my family and friends but i know
after all these years so many still
don't understand it's a 24 7 job for us
this person says they had a heart attack
at 40 and are now hypo unaware but they
will keep pushing through
um so i just want to share an end thank
you to to that viewer for uh
for sharing that it's uh it means a lot
and uh i'm i can speak for the three of
us i think to say that it's really
really great to know that you you gained
something from this this webinar
yeah and that it's
that self like if you viewer who made
that comment and others who feel the
same way
it's so wonderful to have outside
affirmation and it's a very valid reason
to open up to your diabetes team who
does get it or a professional therapist
but also that self acknowledgement and
self compassion like to save yourself
this is hard and we've all made mistakes
living with diabetes
but it's you know it's the persistence
and trying our best like giving yourself
that credit that can be really really
helpful absolutely
um so with that folks um
we are uh those are those are the
questions we've received thank you so
much for for submitting those and i just
want to before we wrap up ask you
michelle and ashley if there's anything
else you'd like to share or anything you
want to leave our viewers with
i feel like we touched on a lot of great
a lot of great things of course i mean i
think like just to kind of wrap up it's
always just to remember that
you know if it's not even in your
immediate family that there's like
somebody out there who understands that
kind of comes back down to
self-compassion that like we're never
alone
so it's like whether it's like reach out
to us reach out to somebody you know and
just say like that validation piece just
to try and get that as i think super
important so
and the diabetes community is so
important this way i mean you know thank
you to you and your colleagues at
diabetes canada brooks who have really
i think
had this wonderful focus more on type 1
as well in recent years while continuing
all the good work in the type 2 space um
but we know there's so many other like
grass there's some grassroots
organizations out there um the online
community is very strong
and
when people connect with other type ones
i think there's just i mean i didn't
have that in my first couple of years
with diabetes i really didn't know
anyone else and then i actually had my
first pregnancy at a hospital in toronto
i ended up meeting
another woman who lived in my area and
we became matt leaf buddies and i
remember for me to have a friend with
type 1 was just
so amazing but since then i've literally
met hundreds of people with type one
across canada um but i think that sense
of community like even if people get
involved through volunteer work or
advocacy like there can be a real i mean
that's part of the grief cycle actually
we move towards acceptance which is
about adaptation with chronic illness
it's not acceptance like oh everything's
fine it's integrating it physically
and psychologically into our lives but
that
like more and more in grief work they're
acknowledging that last stage of finding
meaning and finding purpose so
maybe connecting with the community is
helpful for some people yeah
yeah
yeah that's i think that's a really
wonderful point um and there are as you
say a ton of resources out there and
ways to get involved and i will take
this opportunity to just share a bit
about how diabetes canada is helping to
support um so for us access to mental
health services are a major piece of our
advocacy and we continue to produce
resources publish clinical practice
guidelines
and support research on diabetes and
mental health along the way so
if you want to learn more and stay up to
date on what we're working on you can
visit diabetes.ca
uh or our social media and if you want
specific direction to your situation um
you can a tune into webinars like this
one to ask questions directly to some
experts or you can get in touch with us
through our info line at 1 800 banting
or email at
infodiabetes.com info diabetes.ca
so um before we wrap up i just want to
sincerely say a huge thank you to
michelle and ashley for for joining it
was such a wonderful conversation and
really appreciate you both sharing your
um you know all your your knowledge and
personal professional expertise on this
in such a thoughtful way so it was
really wonderful to
to facilitate this conversation
um thank you both
thank you for having us we appreciate it
okay i uh i hope this has been helpful
for all of our viewers and and uh hope
to see you back again soon so in the
meantime feel free to reach out if we
can give any assistance
thank you and take care
bye everyone
Category Tags: Children & Adults, General Tips, Just the Basics, Management, Research;