Diabetes video series

0:08
welcome to the mental health video
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series for people living with diabetes
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my name is Candace and I'm from diabetes
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Canada talking about your diabetes care
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with your support team can be
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challenging especially when stigma can
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get in the way this session will provide
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strategies for engaging with your
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Healthcare team and others who support
0:25
your management to ensure your needs are
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met Cassandra Millan registered social
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work worker and psychotherapist with
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over 15 years of experience has been
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living with type 1 diabetes for nearly
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30 years she will explore how person-
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centered care approaches can help people
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with diabetes have competent
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conversations with their Healthcare team
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over to you
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Cassandra hey thank you so much for
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being here we're so excited to be able
0:50
to offer this um because we know how
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difficult these conversations can be to
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have in the context of healthcare it's
0:58
hard to speak up and it's hard to kind
1:01
of know if we're allowed to say things
1:03
or what we're allowed to say and so
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today we are going to talk about how we
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have more confident conversations with
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our providers and with our care teams so
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that we really feel like our healthc
1:15
care is working for us um as well and so
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just an overview of some of the topics
1:21
that will be covered today we will spend
1:24
some time just talking about what is
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person centered care um and how do we as
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patients
1:30
um and people fit into that we'll also
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spend some time talking about how do we
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manage stigma around living with
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diabetes um whether that's type one or
1:40
type two when it comes up um and
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hopefully it's not coming up as often
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but it's really difficult sometimes when
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it
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does we'll also spend some time today
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talking about how do we speak up what
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are some things that would be important
1:57
to know so that we can Empower ourselves
1:59
to have these conversations with those
2:02
on our care team and those who are in
2:04
our Circle um when we are maybe
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intimidated to do so or feel like we
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don't have a right to speak up um or we
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feel like we might not be heard and then
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what are some actual strategies that we
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might have um to start these
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conversations what are some ways that we
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can present um our personal experience
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as somebody living with
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diabetes first we want to talk about
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person- centered care and often times
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person- centered care might be thought
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of as um you know the person living with
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diabetes has full decision-making power
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and what we really mean with person
2:45
centered care is that there's a
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recognition that individuals are a
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valuable part of their care they're a
2:54
valuable resource you're a valuable
2:56
source of expertise you are the expert
2:59
of your life
3:00
as the person living with
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diabetes and we want to blend that into
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this Matrix of clinical expertise you
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know what your provider also knows and
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what they bring to the table as well as
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research-based practice right what has
3:16
years and years of research shown us can
3:19
be effective and helpful and when we can
3:21
put all of these things together we can
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really land in the center of the ven
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diagram that you see here and it Honors
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that what works best for somebody else
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might not work best for you and that's
3:34
also a valuable source of information
3:37
and a valuable source of
3:38
knowledge when we talk about person-
3:41
centered care we talk about
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understanding the context of your whole
3:47
experience and so some examples of that
3:50
might be you know if you're a single
3:52
parent and living with type one or type
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two diabetes and you have um you know
4:00
limited support overnight and maybe you
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have young
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children for you it might work a little
4:07
bit more effectively to have your blood
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sugars in a different place than
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somebody else going to bed and that
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understanding and being able to talk
4:17
openly about that would be an example of
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your experience you knowing yourself and
4:23
your needs best that your provider might
4:26
not know and then when they say they
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don't they might not know it's not that
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they might not care it's that they just
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might not have thought of that um or
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maybe you're an athlete who needs your
4:37
blood sugars in a certain range in order
4:40
to perform in the ways that you want and
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it might be a little bit different than
4:45
what research suggests and you recognize
4:48
that that's what works best for you for
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whatever reason um these are all
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examples of you knowing yourself um well
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as a person living with diabetes and
4:59
that source of information and expertise
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is highly
5:03
knowledgeable when we talk about person-
5:05
centered care we really want to Anchor
5:07
into this idea that we're having
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conversations to learn and understand um
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not conversations that are based on
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telling somebody what to do right having
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conversations in the sense of learning
5:21
to understand not learning to respond
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and I think when we can integrate that
5:26
into the patient experience um by
5:29
advocating for ourselves then we can
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start to feel less isolated in our care
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um and when we feel less isolated we are
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at lower risk perhaps of things like
5:42
diabetes distress or other mental health
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um challenges that might come with
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living with diabetes right we might feel
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less anxious going to an appointment
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when we feel like our experience and our
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expertise on our own um selves is being
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heard
6:00
when we can feel like a part of our care
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we also are in a position to perhaps
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feel more connected and from a mental
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health standpoint we know that
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connection is so vital um when we're
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working through difficult things it is
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one of the things that really anchors
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anybody into um not having as longterm
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or um as negative perhaps repercussions
6:27
of something really difficult and so
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when we can have these conversations
6:31
when we can feel like we are involved in
6:34
our care when we can feel like our
6:36
experience matters um then we're at
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lower risk of feeling disconnected lower
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risk of feeling isolated lower risk of
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feeling Alone um in our journey as
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somebody living with
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diabetes so when we think about stigma
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with diabetes I think you know if you're
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watching this most likely you've
6:58
experienced it and stigma you know in
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its purest form is really just this Mark
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of disgrace or shame that comes with a p
7:10
particular circumstance um or
7:13
quality um and it's way more common with
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diabetes than I think anyone would like
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to admit and some things that can often
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Drive stigma might be the perception
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that a medical professional is the
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expert um you know as opposed to what
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you can contribute as we talked about a
7:34
few minutes ago with person- centered
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care and a person with that personal
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lived
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experience lack of awareness or lack of
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knowledge around the experience of
7:44
diabetes can also Drive um that
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experience with stigma and you know I'll
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share an example of when I was in high
7:53
school um I had a science teacher who
7:56
was talking about his weight loss
7:59
Journey and um how he cut out sugar and
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of course he had to cut out sugar
8:03
because if if he ate sugar continuously
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then he was no doubt going to get
8:10
diabetes right and you know all with
8:13
good intentions I'm very well aware of
8:15
that but as a 16-year-old in the back of
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the science class when you see all the
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heads turn back and start asking you oh
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my gosh is that why you have diabetes
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did you eat too much sugar as a kid
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these are things that come up and
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unfortunately for a lot of people have
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also come to either be expected or
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normalized um in the experience of
8:35
living with diabetes and again this is
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um not unique to type 1 diabetes or type
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two or gestational it happens across the
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board sometimes personal health beliefs
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um for people that are important to us
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might also filter into our relationships
8:53
which can enhance that sense of
8:55
stigma um and access to credible
9:00
information and so there's a lot of
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wonderful resources out there on the
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internet um and there's also a lot of
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misinformation on the internet about
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things that might lead to the
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development of diabetes or what is
9:13
appropriate care or what puts somebody
9:17
at risk um and all of these things can
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contribute again to that purest form of
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stigma which is a sense of disgrace
9:26
related to having or living with
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diabetes
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there's also a lot of confusion around
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the different types of diabetes um so
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there are significant differences in
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some ways between type one and type two
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um and that confusion can again fuel
9:43
that stigma um of living with diabetes
9:48
or how you manage your
9:49
diabetes um as a type 1 diabetic I often
9:53
get asked by people that um I know with
9:57
type 2 diabetes around management and
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and it can be different and I think even
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you know in the context of people living
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with diabetes there can be some
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confusion about the differences um that
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again has high potential to increase um
10:11
some of that stigma or that sense of
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being judged
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or some of that shame in some
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aspects sometimes stigma can also lend
10:23
itself
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to you as a person living with
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diabetes when there's High stigma or
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even an isolated experience of being
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stigmatized as a person living with
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diabetes you know uh misinformed
10:38
judgment a comment about um someone's
10:42
sugar consumption live leading to the
10:44
development of
10:45
diabetes all of these things can lead to
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um unhelpful belief that diabetes is the
10:52
individual's fault when in reality we
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know that there's lots of things that
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might contribute and we also know that
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in some circumstances we don't know what
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contributed and the risk that we run
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when we start to internalize that belief
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or some of these um stigmas that come up
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in our everyday interactions is we start
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to experience High shame or self-blame
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we start to disconnect or we might feel
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more isolated we might feel like other
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people don't understand or what's the
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point in
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Sharing um or we might even come to
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expect these things to a point that it's
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normalized and we don't perhaps deal
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with it in the ways that are helpful and
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all of these things can contribute to
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um more significant um challenges
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perhaps with things like I'm feeling
11:45
anxious going to an appointment um
11:49
difficulty talking about diabetes with
11:51
others worries around being judged if we
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share that we have diabetes all of which
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I think we can all agree are
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not helpful in the context of mental
12:02
health so we start to internalize it we
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start to expect it or normalize it we
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start to feel like perhaps feel like
12:10
we're part of the problem or we are the
12:13
problem um or we start to blame
12:15
ourselves which is also a really tricky
12:17
and unhelpful place to be I think
12:20
another example that's worth mentioning
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is often women who have diabetes um in
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pregnancy whether they've developed it
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before whether it's um gestational
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diabetes they you know there's this
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stigma that they will have bigger babies
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and I think the research shows that but
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if you have a bigger baby often the the
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question might be you know gosh you know
12:45
where your blood sugar is out of
12:46
control um and that's not a helpful
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question and it also might not be
12:52
accurate at all and so I think this is
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just a really good example of that
12:56
stigma that could leave that mother
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um you know who just had a baby um
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feeling like something was their fault
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you know my baby was bigger because I
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didn't do something um as opposed to the
13:09
reality of it might not have been the
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case at all baby could be perfectly
13:14
healthy um but that's again is just
13:17
another example of how common that
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stigma can be and it's it's most often
13:22
not ill intended um but the way that we
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perceive it or we internalize it can be
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really challenging
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so how do we speak up right or why is it
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important that we speak up um so that we
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can get care that really works and makes
13:40
sense for
13:42
us when we start to internalize that
13:45
stigma as we were just talking about
13:47
that can really deter somebody from
13:49
speaking up can also lead to feelings of
13:52
hopelessness you know or that sentiment
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of what's the point no one's going to
13:55
listen or I'm not going to feel heard no
13:57
one gets it um this isn't working for me
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these are all um examples of perhaps a
14:05
felt sense of hopelessness that can also
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deter us from advocating for ourselves
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speaking up to get care that really
14:13
makes sense for
14:15
us it's important to speak up even when
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we feel this that's usually a good
14:20
indicator that we need to speak up
14:22
because our situations do change and we
14:25
need to acknowledge that for ourselves
14:28
we also need to acknowledge that it's
14:29
okay if our situation has changed and we
14:32
need to communicate that with our
14:34
healthc care team because they may not
14:37
know right if you haven't seen your
14:40
health care provider for a number of
14:42
months um they might not know that your
14:45
situation has has moved in this way or
14:48
that you're dealing with something else
14:49
or that your support system has altered
14:52
in some way and so it is important that
14:55
we let um our Healthcare Providers know
14:58
these things
15:00
I think it's natural as an individual to
15:03
have our own assumptions about how our
15:06
healthc care providers might work with
15:07
us and you know that connects back to
15:10
what we were talking about with stigma
15:13
and sometimes that you know power
15:15
imbalance of well this is the doctor
15:17
this is the the expert in their field um
15:20
who am I to come in and share my
15:22
personal experience that might not
15:24
completely connect with you know what
15:27
I'm anticipating they might say
15:29
but when we can start asking those
15:31
questions of how would this fit in if
15:34
this is my experience then we can start
15:37
to open the conversation up to do things
15:40
differently at the end of the day any
15:42
individual or any patient has the right
15:44
to feel heard and to ask for what they
15:46
need and it doesn't always mean that
15:48
these things play out in the ways that
15:52
um you know we might expect because we
15:54
might get an answer that we hadn't
15:55
thought of as a as an individual or as a
15:58
patient but it helps us feel more
16:00
connected to our provider um when we can
16:03
start to really help them to understand
16:06
as well how that would unfold in our
16:09
unique circumstance or our unique um
16:11
situation or life right I always think
16:15
you know the thing that always comes to
16:16
mind is we don't know what we don't know
16:18
and that's true for us and that's also
16:19
true for our healthc care providers um
16:22
who are trying to help us and so it is
16:23
important that we try to speak up and
16:26
and let them in on what that looks looks
16:29
like in our own
16:32
world asking for what we need can lead
16:34
to powerful conversations as I was
16:37
saying earlier you know our healthc care
16:39
provider might not know if things have
16:40
changed in our life and by communicating
16:43
to that to them we can start to open the
16:46
door to a different conversation of how
16:48
do I make this work right I hear what
16:51
you're saying and we'll talk about this
16:52
a little bit more in a few minutes but I
16:55
hear what you're saying and these are my
16:57
concerns about what that looks like in
16:59
my life right how can we figure this out
17:09
together I think it's always worth um
17:12
shining a light on
17:15
that these conversations can either
17:18
Empower us to speak up more or they can
17:20
push us back into um feeling a little
17:23
bit hopeless and sometimes it's not just
17:27
speaking up for our needs are speaking
17:29
up with questions about how does this
17:31
fit into my particular circumstance but
17:34
also letting providers know if something
17:36
that they've said is leaving us feeling
17:39
um less inclined to share more um and
17:43
that can feel like a really difficult
17:44
thing to approach and and a little bit
17:47
later today we'll spend some time
17:49
talking about how to approach that
17:51
conversation it is important to do it
17:53
because if we're feeling judged if we
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are feeling stigmatized if we're feeling
17:57
unheard
17:59
um these are the barriers that we want
18:01
to break through so that we can be um
18:05
part of that system that is person
18:07
centered care right language does matter
18:10
um and sometimes someone who maybe
18:13
doesn't live with diabetes might not be
18:15
as aware of that and we have an
18:18
opportunity to inform them of that in
18:20
that moment um in a way that is going to
18:23
help us get the care that we need and
18:25
the care that we
18:27
deserve I think think it's also
18:29
important as patients to recognize on
18:31
that note that sometimes things might be
18:34
said um without ill intent with no sort
18:37
of malice behind it just that lack of
18:39
understanding lack of awareness of that
18:41
lived experience um that we talked about
18:44
earlier when we were talking about
18:46
stigma okay so how do we start these
18:49
conversations with our care team or our
18:51
health care
18:52
providers I think you know it's easier
18:55
said than done when there are those
18:58
power imbalances that we talked about or
19:00
when um we come into an appointment or
19:04
you know come into a meeting with our
19:06
healthare team um perhaps carrying some
19:09
of that stigma that may not even have
19:12
anything to do with our care team um you
19:15
know you see the examples on the screen
19:17
here and I'm going to just talk about a
19:19
few of them I think you know sharing our
19:22
intentions and clarifying our
19:25
expectations is always a good place to
19:27
start with healthy communic ation and so
19:30
I do recognize that this is important
19:33
you know I recognize the importance of
19:35
doing these particular things for my
19:37
health care and I also noticed that I'm
19:40
having a hard time making this fit in my
19:42
life at this point in time right so I'll
19:45
go back to the example from earlier
19:47
today around you know a single parent
19:51
who might let their blood sugars run at
19:54
a different level than is recommended
19:56
overnight right because perhaps worried
19:59
about how that might impact their their
20:01
young children um if they were you know
20:04
needed and they're prone to low blood
20:06
sugars overnight or when they drop they
20:08
drop significantly and they drop quickly
20:11
and so communicating I recognize the
20:14
importance of having my blood sugars in
20:16
this range and I'm really um you know
20:19
having a hard time making that work when
20:22
I don't have someone else there to care
20:23
for my children in the night if I have a
20:26
really bad loow and so sharing that with
20:29
um authenticity with
20:31
honesty um you know again that might
20:33
also just look like I'm really worried
20:36
about this blood sugar range or having
20:40
my um Target overnight being this value
20:44
because of these
20:46
reasons other ways um might just be
20:49
approaching with curiosity right is
20:51
there another way to do this when I'm
20:53
not feeling comfortable right these are
20:55
the ways or these are the reasons why I
20:57
don't feel comfortable right is there
20:59
flexibility in how we could approach the
21:02
school and perhaps the the most
21:05
difficult one and arguably maybe one of
21:07
the most important is if we are feeling
21:10
judged or we're feeling blamed for
21:13
aspects of our care not going the way
21:14
that you know most likely we all are
21:16
hoping for is communicating that and
21:20
really just clarifying our understanding
21:22
that this most likely was not the
21:24
intention right I know that this um
21:27
probably wasn't what you meant
21:29
and I also know that in this moment I
21:31
feel like I'm you know being to I'm
21:33
being blamed here or I'm really noticing
21:35
that I'm feeling like I want to pull
21:37
back um for these reasons those are most
21:41
often the hardest and the most important
21:43
conversations to have so that we can
21:46
reconnect with our Healthcare team and
21:48
they know where where we're at um in
21:51
some of these conversations as well I
21:53
think at the end of the day it is
21:55
important for everyone in this space to
21:57
hear that you are allowed to say these
21:59
things you are allowed to speak up as
22:00
the expert in your own experience and
22:04
maybe that doesn't always mean that
22:05
things change and the recommendations
22:07
that are provided it just gives a space
22:10
and a platform for everyone to be on the
22:11
same page about where you're at and what
22:14
makes sense for you as a unique person
22:17
living with
22:18
diabetes again linking this back to you
22:21
know where does this fit in the mental
22:22
health
22:24
conversation when we don't feel heard
22:27
when we feel judged when we feel like we
22:29
can't speak up when we feel scared or
22:32
worried or fearful about some of these
22:35
recommendations all of these things are
22:37
going to impact our day-to-day
22:39
relationship with ourselves um and I'll
22:43
reiterate one more time that can lead to
22:45
anxiety or feeling anxious going into
22:48
appointments that can lead to increased
22:51
feelings of
22:52
isolation that can lead to increased
22:55
feelings of Shame if we're leaving an
22:57
appointment feeling to blame
22:59
without a conversation about it and all
23:01
of these things have significant impact
23:03
on our mental
23:09
health some other strategies that can be
23:12
helpful when we are advocating for
23:14
ourselves is having someone come with us
23:17
to our appointments um who might be able
23:20
to kind of further the conversation if
23:23
we are feeling stuck or who might know
23:25
that we're a little bit nervous going
23:27
into the appointment and that we might
23:29
not
23:30
communicate um things in the ways that
23:33
we hope or we might feel a little bit
23:35
nervous about speaking up um because of
23:38
some of those power imbalances that we
23:40
talked about and so having someone come
23:42
with you um can be a really helpful
23:44
strategy just to navigate
23:46
that writing down your questions and
23:49
concerns ahead of time I think most of
23:50
us have probably been in a a situation
23:54
where we have lots that we want to ask
23:56
and then we get in the groove of the
23:58
appointment um or maybe some of that
24:01
those um again stigmas or that sense of
24:04
shame or self-blame come up um and we
24:08
feel like we don't have the right to ask
24:10
or the right the right to speak up um
24:13
and so we kind of lose our script and so
24:15
writing those questions down ahead of
24:17
time can help us stay on track with the
24:19
things that we really want to make sure
24:22
um we putting forward in some of those
24:25
appointments and then also asking for a
24:27
record of the plan that was discussed in
24:30
that appointment um a lot of times so
24:33
much is discussed that we might forget
24:35
things um or there can be a fear that um
24:39
if we have to meet with somebody
24:41
different the next time that that plan
24:42
or that discussion about some
24:44
flexibility to meet the same goal that
24:46
fits for us as a unique individual um
24:50
won't be heard the next time and so if
24:53
we can ask for a record of that plan
24:55
that keeps everybody on the same page
24:57
even if some members of our care team
24:59
are changing along the
25:05
way at the end of the day as a person
25:07
living with diabetes your perspective
25:10
and your voice matter um you are a part
25:13
of the team you offer an expertise that
25:17
nobody else has and that is your own
25:19
knowledge of yourself as a as an
25:21
individual um that is your knowledge of
25:24
what works for you um and what makes
25:26
sense or what fits in the context of
25:29
your life and your
25:31
circumstances and it is your right to
25:33
speak up to let others know what that
25:36
looks like
25:38
right our health care providers and our
25:41
care team they might just need our help
25:42
to understand what our concerns are or
25:45
what some of those circumstances are
25:47
that might mean that you know perhaps we
25:49
don't have the finances to eat fruits
25:52
and vegetables at every single meal
25:53
fresh produce at every single meal um
25:56
and they might not know that without us
25:58
sharing that that might mean you know
26:01
letting them know that our support
26:03
system has its limitations at times and
26:06
how do we work with that right if we're
26:08
the person really um kind of doing this
26:10
on our own or that might mean um you
26:15
know for athletes again right how how
26:18
does my body feel if I'm trying to go
26:21
into this sporting event at this
26:24
particular blood sugar versus this
26:25
particular blood sugar right and so
26:29
coming at it from the the lens of simply
26:33
just that our Healthcare Providers do
26:35
need our help to understand um what that
26:38
experience is like for us and you know
26:40
not going into it expecting that they
26:43
know um but rather going into it
26:45
expecting that they don't know and
26:46
seeing it as an
26:48
opportunity and at the end of the day I
26:51
think you know really anchoring into
26:54
this understanding that research and
26:57
best practices is and our lived
27:00
experience as an individual living with
27:03
diabetes that person centered care
27:05
framework they really can work together
27:08
and these are the ways that they can and
27:10
it is important that they work together
27:12
for our mental health as we navigate
27:16
living with diabetes