October 15, 2021 Diabetes Distress

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