Confident Conversations: Getting The Best Care For You

0:00 [Music]0:08 welcome to the mental health video0:09 series for people living with diabetes0:11 my name is Candace and I'm from diabetes0:13 Canada talking about your diabetes care0:16 with your support team can be0:17 challenging especially when stigma can0:19 get in the way this session will provide0:21 strategies for engaging with your0:23 Healthcare team and others who support0:25 your management to ensure your needs are0:27 met Cassandra Millan registered social0:29 work worker and psychotherapist with0:31 over 15 years of experience has been0:34 living with type 1 diabetes for nearly0:35 30 years she will explore how person-0:38 centered care approaches can help people0:40 with diabetes have competent0:42 conversations with their Healthcare team0:44 over to you0:45 Cassandra hey thank you so much for0:48 being here we're so excited to be able0:50 to offer this um because we know how0:54 difficult these conversations can be to0:56 have in the context of healthcare it's0:58 hard to speak up and it's hard to kind1:01 of know if we're allowed to say things1:03 or what we're allowed to say and so1:05 today we are going to talk about how we1:08 have more confident conversations with1:11 our providers and with our care teams so1:13 that we really feel like our healthc1:15 care is working for us um as well and so1:19 just an overview of some of the topics1:21 that will be covered today we will spend1:24 some time just talking about what is1:25 person centered care um and how do we as1:29 patients1:30 um and people fit into that we'll also1:33 spend some time talking about how do we1:35 manage stigma around living with1:38 diabetes um whether that's type one or1:40 type two when it comes up um and1:44 hopefully it's not coming up as often1:46 but it's really difficult sometimes when1:48 it1:49 does we'll also spend some time today1:52 talking about how do we speak up what1:55 are some things that would be important1:57 to know so that we can Empower ourselves1:59 to have these conversations with those2:02 on our care team and those who are in2:04 our Circle um when we are maybe2:07 intimidated to do so or feel like we2:09 don't have a right to speak up um or we2:12 feel like we might not be heard and then2:14 what are some actual strategies that we2:17 might have um to start these2:20 conversations what are some ways that we2:22 can present um our personal experience2:26 as somebody living with2:28 diabetes first we want to talk about2:30 person- centered care and often times2:34 person- centered care might be thought2:36 of as um you know the person living with2:40 diabetes has full decision-making power2:44 and what we really mean with person2:45 centered care is that there's a2:48 recognition that individuals are a2:51 valuable part of their care they're a2:54 valuable resource you're a valuable2:56 source of expertise you are the expert2:59 of your life3:00 as the person living with3:02 diabetes and we want to blend that into3:05 this Matrix of clinical expertise you3:09 know what your provider also knows and3:11 what they bring to the table as well as3:13 research-based practice right what has3:16 years and years of research shown us can3:19 be effective and helpful and when we can3:21 put all of these things together we can3:24 really land in the center of the ven3:26 diagram that you see here and it Honors3:29 that what works best for somebody else3:32 might not work best for you and that's3:34 also a valuable source of information3:37 and a valuable source of3:38 knowledge when we talk about person-3:41 centered care we talk about3:43 understanding the context of your whole3:47 experience and so some examples of that3:50 might be you know if you're a single3:52 parent and living with type one or type3:56 two diabetes and you have um you know4:00 limited support overnight and maybe you4:02 have young4:04 children for you it might work a little4:07 bit more effectively to have your blood4:10 sugars in a different place than4:12 somebody else going to bed and that4:15 understanding and being able to talk4:17 openly about that would be an example of4:21 your experience you knowing yourself and4:23 your needs best that your provider might4:26 not know and then when they say they4:28 don't they might not know it's not that4:30 they might not care it's that they just4:32 might not have thought of that um or4:35 maybe you're an athlete who needs your4:37 blood sugars in a certain range in order4:40 to perform in the ways that you want and4:43 it might be a little bit different than4:45 what research suggests and you recognize4:48 that that's what works best for you for4:50 whatever reason um these are all4:53 examples of you knowing yourself um well4:57 as a person living with diabetes and4:59 that source of information and expertise5:01 is highly5:03 knowledgeable when we talk about person-5:05 centered care we really want to Anchor5:07 into this idea that we're having5:09 conversations to learn and understand um5:13 not conversations that are based on5:16 telling somebody what to do right having5:19 conversations in the sense of learning5:21 to understand not learning to respond5:23 and I think when we can integrate that5:26 into the patient experience um by5:29 advocating for ourselves then we can5:31 start to feel less isolated in our care5:36 um and when we feel less isolated we are5:39 at lower risk perhaps of things like5:42 diabetes distress or other mental health5:45 um challenges that might come with5:47 living with diabetes right we might feel5:49 less anxious going to an appointment5:51 when we feel like our experience and our5:54 expertise on our own um selves is being5:58 heard6:00 when we can feel like a part of our care6:04 we also are in a position to perhaps6:07 feel more connected and from a mental6:09 health standpoint we know that6:11 connection is so vital um when we're6:13 working through difficult things it is6:16 one of the things that really anchors6:18 anybody into um not having as longterm6:23 or um as negative perhaps repercussions6:27 of something really difficult and so6:28 when we can have these conversations6:31 when we can feel like we are involved in6:34 our care when we can feel like our6:36 experience matters um then we're at6:40 lower risk of feeling disconnected lower6:43 risk of feeling isolated lower risk of6:45 feeling Alone um in our journey as6:48 somebody living with6:51 diabetes so when we think about stigma6:54 with diabetes I think you know if you're6:57 watching this most likely you've6:58 experienced it and stigma you know in7:02 its purest form is really just this Mark7:05 of disgrace or shame that comes with a p7:10 particular circumstance um or7:13 quality um and it's way more common with7:16 diabetes than I think anyone would like7:19 to admit and some things that can often7:22 Drive stigma might be the perception7:26 that a medical professional is the7:28 expert um you know as opposed to what7:32 you can contribute as we talked about a7:34 few minutes ago with person- centered7:36 care and a person with that personal7:39 lived7:40 experience lack of awareness or lack of7:43 knowledge around the experience of7:44 diabetes can also Drive um that7:48 experience with stigma and you know I'll7:51 share an example of when I was in high7:53 school um I had a science teacher who7:56 was talking about his weight loss7:59 Journey and um how he cut out sugar and8:02 of course he had to cut out sugar8:03 because if if he ate sugar continuously8:07 then he was no doubt going to get8:10 diabetes right and you know all with8:13 good intentions I'm very well aware of8:15 that but as a 16-year-old in the back of8:18 the science class when you see all the8:20 heads turn back and start asking you oh8:22 my gosh is that why you have diabetes8:24 did you eat too much sugar as a kid8:26 these are things that come up and8:28 unfortunately for a lot of people have8:30 also come to either be expected or8:33 normalized um in the experience of8:35 living with diabetes and again this is8:38 um not unique to type 1 diabetes or type8:41 two or gestational it happens across the8:44 board sometimes personal health beliefs8:47 um for people that are important to us8:50 might also filter into our relationships8:53 which can enhance that sense of8:55 stigma um and access to credible9:00 information and so there's a lot of9:02 wonderful resources out there on the9:05 internet um and there's also a lot of9:07 misinformation on the internet about9:09 things that might lead to the9:11 development of diabetes or what is9:13 appropriate care or what puts somebody9:17 at risk um and all of these things can9:20 contribute again to that purest form of9:23 stigma which is a sense of disgrace9:26 related to having or living with9:27 diabetes9:29 there's also a lot of confusion around9:32 the different types of diabetes um so9:34 there are significant differences in9:37 some ways between type one and type two9:40 um and that confusion can again fuel9:43 that stigma um of living with diabetes9:48 or how you manage your9:49 diabetes um as a type 1 diabetic I often9:53 get asked by people that um I know with9:57 type 2 diabetes around management and9:59 and it can be different and I think even10:01 you know in the context of people living10:03 with diabetes there can be some10:05 confusion about the differences um that10:07 again has high potential to increase um10:11 some of that stigma or that sense of10:13 being judged10:15 or some of that shame in some10:19 aspects sometimes stigma can also lend10:23 itself10:24 to you as a person living with10:27 diabetes when there's High stigma or10:30 even an isolated experience of being10:33 stigmatized as a person living with10:35 diabetes you know uh misinformed10:38 judgment a comment about um someone's10:42 sugar consumption live leading to the10:44 development of10:45 diabetes all of these things can lead to10:48 um unhelpful belief that diabetes is the10:52 individual's fault when in reality we10:54 know that there's lots of things that10:56 might contribute and we also know that10:58 in some circumstances we don't know what11:01 contributed and the risk that we run11:03 when we start to internalize that belief11:06 or some of these um stigmas that come up11:09 in our everyday interactions is we start11:12 to experience High shame or self-blame11:17 we start to disconnect or we might feel11:19 more isolated we might feel like other11:21 people don't understand or what's the11:23 point in11:24 Sharing um or we might even come to11:27 expect these things to a point that it's11:29 normalized and we don't perhaps deal11:31 with it in the ways that are helpful and11:33 all of these things can contribute to11:39 um more significant um challenges11:43 perhaps with things like I'm feeling11:45 anxious going to an appointment um11:49 difficulty talking about diabetes with11:51 others worries around being judged if we11:54 share that we have diabetes all of which11:56 I think we can all agree are11:59 not helpful in the context of mental12:02 health so we start to internalize it we12:05 start to expect it or normalize it we12:08 start to feel like perhaps feel like12:10 we're part of the problem or we are the12:13 problem um or we start to blame12:15 ourselves which is also a really tricky12:17 and unhelpful place to be I think12:20 another example that's worth mentioning12:22 is often women who have diabetes um in12:26 pregnancy whether they've developed it12:27 before whether it's um gestational12:31 diabetes they you know there's this12:33 stigma that they will have bigger babies12:35 and I think the research shows that but12:39 if you have a bigger baby often the the12:41 question might be you know gosh you know12:45 where your blood sugar is out of12:46 control um and that's not a helpful12:49 question and it also might not be12:52 accurate at all and so I think this is12:54 just a really good example of that12:56 stigma that could leave that mother12:59 um you know who just had a baby um13:02 feeling like something was their fault13:04 you know my baby was bigger because I13:06 didn't do something um as opposed to the13:09 reality of it might not have been the13:12 case at all baby could be perfectly13:14 healthy um but that's again is just13:17 another example of how common that13:19 stigma can be and it's it's most often13:22 not ill intended um but the way that we13:25 perceive it or we internalize it can be13:27 really challenging13:31 so how do we speak up right or why is it13:34 important that we speak up um so that we13:38 can get care that really works and makes13:40 sense for13:42 us when we start to internalize that13:45 stigma as we were just talking about13:47 that can really deter somebody from13:49 speaking up can also lead to feelings of13:52 hopelessness you know or that sentiment13:54 of what's the point no one's going to13:55 listen or I'm not going to feel heard no13:57 one gets it um this isn't working for me14:01 these are all um examples of perhaps a14:05 felt sense of hopelessness that can also14:08 deter us from advocating for ourselves14:11 speaking up to get care that really14:13 makes sense for14:15 us it's important to speak up even when14:18 we feel this that's usually a good14:20 indicator that we need to speak up14:22 because our situations do change and we14:25 need to acknowledge that for ourselves14:28 we also need to acknowledge that it's14:29 okay if our situation has changed and we14:32 need to communicate that with our14:34 healthc care team because they may not14:37 know right if you haven't seen your14:40 health care provider for a number of14:42 months um they might not know that your14:45 situation has has moved in this way or14:48 that you're dealing with something else14:49 or that your support system has altered14:52 in some way and so it is important that14:55 we let um our Healthcare Providers know14:58 these things15:00 I think it's natural as an individual to15:03 have our own assumptions about how our15:06 healthc care providers might work with15:07 us and you know that connects back to15:10 what we were talking about with stigma15:13 and sometimes that you know power15:15 imbalance of well this is the doctor15:17 this is the the expert in their field um15:20 who am I to come in and share my15:22 personal experience that might not15:24 completely connect with you know what15:27 I'm anticipating they might say15:29 but when we can start asking those15:31 questions of how would this fit in if15:34 this is my experience then we can start15:37 to open the conversation up to do things15:40 differently at the end of the day any15:42 individual or any patient has the right15:44 to feel heard and to ask for what they15:46 need and it doesn't always mean that15:48 these things play out in the ways that15:52 um you know we might expect because we15:54 might get an answer that we hadn't15:55 thought of as a as an individual or as a15:58 patient but it helps us feel more16:00 connected to our provider um when we can16:03 start to really help them to understand16:06 as well how that would unfold in our16:09 unique circumstance or our unique um16:11 situation or life right I always think16:15 you know the thing that always comes to16:16 mind is we don't know what we don't know16:18 and that's true for us and that's also16:19 true for our healthc care providers um16:22 who are trying to help us and so it is16:23 important that we try to speak up and16:26 and let them in on what that looks looks16:29 like in our own16:32 world asking for what we need can lead16:34 to powerful conversations as I was16:37 saying earlier you know our healthc care16:39 provider might not know if things have16:40 changed in our life and by communicating16:43 to that to them we can start to open the16:46 door to a different conversation of how16:48 do I make this work right I hear what16:51 you're saying and we'll talk about this16:52 a little bit more in a few minutes but I16:55 hear what you're saying and these are my16:57 concerns about what that looks like in16:59 my life right how can we figure this out17:09 together I think it's always worth um17:12 shining a light on17:15 that these conversations can either17:18 Empower us to speak up more or they can17:20 push us back into um feeling a little17:23 bit hopeless and sometimes it's not just17:27 speaking up for our needs are speaking17:29 up with questions about how does this17:31 fit into my particular circumstance but17:34 also letting providers know if something17:36 that they've said is leaving us feeling17:39 um less inclined to share more um and17:43 that can feel like a really difficult17:44 thing to approach and and a little bit17:47 later today we'll spend some time17:49 talking about how to approach that17:51 conversation it is important to do it17:53 because if we're feeling judged if we17:55 are feeling stigmatized if we're feeling17:57 unheard17:59 um these are the barriers that we want18:01 to break through so that we can be um18:05 part of that system that is person18:07 centered care right language does matter18:10 um and sometimes someone who maybe18:13 doesn't live with diabetes might not be18:15 as aware of that and we have an18:18 opportunity to inform them of that in18:20 that moment um in a way that is going to18:23 help us get the care that we need and18:25 the care that we18:27 deserve I think think it's also18:29 important as patients to recognize on18:31 that note that sometimes things might be18:34 said um without ill intent with no sort18:37 of malice behind it just that lack of18:39 understanding lack of awareness of that18:41 lived experience um that we talked about18:44 earlier when we were talking about18:46 stigma okay so how do we start these18:49 conversations with our care team or our18:51 health care18:52 providers I think you know it's easier18:55 said than done when there are those18:58 power imbalances that we talked about or19:00 when um we come into an appointment or19:04 you know come into a meeting with our19:06 healthare team um perhaps carrying some19:09 of that stigma that may not even have19:12 anything to do with our care team um you19:15 know you see the examples on the screen19:17 here and I'm going to just talk about a19:19 few of them I think you know sharing our19:22 intentions and clarifying our19:25 expectations is always a good place to19:27 start with healthy communic ation and so19:30 I do recognize that this is important19:33 you know I recognize the importance of19:35 doing these particular things for my19:37 health care and I also noticed that I'm19:40 having a hard time making this fit in my19:42 life at this point in time right so I'll19:45 go back to the example from earlier19:47 today around you know a single parent19:51 who might let their blood sugars run at19:54 a different level than is recommended19:56 overnight right because perhaps worried19:59 about how that might impact their their20:01 young children um if they were you know20:04 needed and they're prone to low blood20:06 sugars overnight or when they drop they20:08 drop significantly and they drop quickly20:11 and so communicating I recognize the20:14 importance of having my blood sugars in20:16 this range and I'm really um you know20:19 having a hard time making that work when20:22 I don't have someone else there to care20:23 for my children in the night if I have a20:26 really bad loow and so sharing that with20:29 um authenticity with20:31 honesty um you know again that might20:33 also just look like I'm really worried20:36 about this blood sugar range or having20:40 my um Target overnight being this value20:44 because of these20:46 reasons other ways um might just be20:49 approaching with curiosity right is20:51 there another way to do this when I'm20:53 not feeling comfortable right these are20:55 the ways or these are the reasons why I20:57 don't feel comfortable right is there20:59 flexibility in how we could approach the21:02 school and perhaps the the most21:05 difficult one and arguably maybe one of21:07 the most important is if we are feeling21:10 judged or we're feeling blamed for21:13 aspects of our care not going the way21:14 that you know most likely we all are21:16 hoping for is communicating that and21:20 really just clarifying our understanding21:22 that this most likely was not the21:24 intention right I know that this um21:27 probably wasn't what you meant21:29 and I also know that in this moment I21:31 feel like I'm you know being to I'm21:33 being blamed here or I'm really noticing21:35 that I'm feeling like I want to pull21:37 back um for these reasons those are most21:41 often the hardest and the most important21:43 conversations to have so that we can21:46 reconnect with our Healthcare team and21:48 they know where where we're at um in21:51 some of these conversations as well I21:53 think at the end of the day it is21:55 important for everyone in this space to21:57 hear that you are allowed to say these21:59 things you are allowed to speak up as22:00 the expert in your own experience and22:04 maybe that doesn't always mean that22:05 things change and the recommendations22:07 that are provided it just gives a space22:10 and a platform for everyone to be on the22:11 same page about where you're at and what22:14 makes sense for you as a unique person22:17 living with22:18 diabetes again linking this back to you22:21 know where does this fit in the mental22:22 health22:24 conversation when we don't feel heard22:27 when we feel judged when we feel like we22:29 can't speak up when we feel scared or22:32 worried or fearful about some of these22:35 recommendations all of these things are22:37 going to impact our day-to-day22:39 relationship with ourselves um and I'll22:43 reiterate one more time that can lead to22:45 anxiety or feeling anxious going into22:48 appointments that can lead to increased22:51 feelings of22:52 isolation that can lead to increased22:55 feelings of Shame if we're leaving an22:57 appointment feeling to blame22:59 without a conversation about it and all23:01 of these things have significant impact23:03 on our mental23:09 health some other strategies that can be23:12 helpful when we are advocating for23:14 ourselves is having someone come with us23:17 to our appointments um who might be able23:20 to kind of further the conversation if23:23 we are feeling stuck or who might know23:25 that we're a little bit nervous going23:27 into the appointment and that we might23:29 not23:30 communicate um things in the ways that23:33 we hope or we might feel a little bit23:35 nervous about speaking up um because of23:38 some of those power imbalances that we23:40 talked about and so having someone come23:42 with you um can be a really helpful23:44 strategy just to navigate23:46 that writing down your questions and23:49 concerns ahead of time I think most of23:50 us have probably been in a a situation23:54 where we have lots that we want to ask23:56 and then we get in the groove of the23:58 appointment um or maybe some of that24:01 those um again stigmas or that sense of24:04 shame or self-blame come up um and we24:08 feel like we don't have the right to ask24:10 or the right the right to speak up um24:13 and so we kind of lose our script and so24:15 writing those questions down ahead of24:17 time can help us stay on track with the24:19 things that we really want to make sure24:22 um we putting forward in some of those24:25 appointments and then also asking for a24:27 record of the plan that was discussed in24:30 that appointment um a lot of times so24:33 much is discussed that we might forget24:35 things um or there can be a fear that um24:39 if we have to meet with somebody24:41 different the next time that that plan24:42 or that discussion about some24:44 flexibility to meet the same goal that24:46 fits for us as a unique individual um24:50 won't be heard the next time and so if24:53 we can ask for a record of that plan24:55 that keeps everybody on the same page24:57 even if some members of our care team24:59 are changing along the25:05 way at the end of the day as a person25:07 living with diabetes your perspective25:10 and your voice matter um you are a part25:13 of the team you offer an expertise that25:17 nobody else has and that is your own25:19 knowledge of yourself as a as an25:21 individual um that is your knowledge of25:24 what works for you um and what makes25:26 sense or what fits in the context of25:29 your life and your25:31 circumstances and it is your right to25:33 speak up to let others know what that25:36 looks like25:38 right our health care providers and our25:41 care team they might just need our help25:42 to understand what our concerns are or25:45 what some of those circumstances are25:47 that might mean that you know perhaps we25:49 don't have the finances to eat fruits25:52 and vegetables at every single meal25:53 fresh produce at every single meal um25:56 and they might not know that without us25:58 sharing that that might mean you know26:01 letting them know that our support26:03 system has its limitations at times and26:06 how do we work with that right if we're26:08 the person really um kind of doing this26:10 on our own or that might mean um you26:15 know for athletes again right how how26:18 does my body feel if I'm trying to go26:21 into this sporting event at this26:24 particular blood sugar versus this26:25 particular blood sugar right and so26:29 coming at it from the the lens of simply26:33 just that our Healthcare Providers do26:35 need our help to understand um what that26:38 experience is like for us and you know26:40 not going into it expecting that they26:43 know um but rather going into it26:45 expecting that they don't know and26:46 seeing it as an26:48 opportunity and at the end of the day I26:51 think you know really anchoring into26:54 this understanding that research and26:57 best practices is and our lived27:00 experience as an individual living with27:03 diabetes that person centered care27:05 framework they really can work together27:08 and these are the ways that they can and27:10 it is important that they work together27:12 for our mental health as we navigate27:16 living with diabetes27:26 [Music]