Cassandra Millen, Registered Social Worker and Psychotherapist with over 15 years of experience, will provide strategies for engaging with your health care team and others who support your management to ensure your needs are met.
Speaker: Cassandra Millen, MSW
Speaker: Cassandra Millen, MSW
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]
[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
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Category Tags: General Tips, Management, Healthy Living;