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