September 25, 2024 • 53 mins
Jenny Smith, RD, LD, CDCES, chats with Corinna Santa Ana about overcoming the ever-prevalent stigma in both diabetes and women's health. Corinna recently participated in the International Consensus to #EndDiabetesStigma. You can learn more about the diaTribe Foundation's ongoing collaborative efforts to end diabetes stigma online at https://dstigmatize.org. You can find Corinna on social media as @Type2Musings and scattered across multiple publications as the author of articles about stigma, diabetes, and women's health.
Summary
This conversation explores the complexities of diabetes management, particularly in women, and the importance of understanding reproductive health, monitoring, and community support. Jenny Smith, RD, LD, CDCES and Corinna Santa Ana discuss the need for better education, personalized care, and the impact of societal roles on health outcomes. They emphasize the importance of listening to patients and fostering open conversations about health, as well as the challenges posed by the healthcare system. They also highlight the significance of technology in diabetes care and the necessity for cultural sensitivity in dietary recommendations
Keywords
diabetes, women's health, type 1 diabetes, type 2 diabetes, gestational diabetes, healthcare, monitoring, community support, reproductive health, personalized care
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Welcome to Think Like a Pancreas, the podcast.
I'm your host Jenny Smith.
And today I'm super delighted to be joined by diabetes patient advocate and health contentwriter, Corinna Santa Ana.
You might know her online as Type2Musings.
Recently she participated in the International Consensus to End Diabetes Stigma.
(00:22):
and you can find out more about the ongoing efforts to end diabetes stigma online atdstigmatize.org.
So I am, like I said, I am so super excited to chat with you.
I work with a lot of women through multiple different times of their life.
And you're very correct in terms of how I know that, you know, some of the things thatI've read that you've put together and written so beautifully.
(00:48):
There is a lot of misunderstanding in women's health, not only with diabetes, but justoutside of diabetes in general, a lot of questions that don't get answered correctly.
So welcome to our chat.
Of course.
And you were just telling me actually something just before we got recording here about astudy that somebody had sent to you or you had had a discussion.
(01:14):
I think that would be just so unbelievably valuable to share.
Yeah, actually it was an article that was posted online on LinkedIn of all places.
The recent study or recent thinking is that passing on type 1 diabetes to children is morelikely to happen through the father than the mother.
(01:42):
So I haven't had a chance to look into all the details.
It was just sort of saw the news blurb.
what really drew my attention to it was the conversation online in response to thisarticle.
And there was a woman who posted that had she known this in her 20s and the 1970s, shemight have made a different decision about her reproductive health.
(02:04):
She mentioned that she had had a tubal ligation because she was
about passing on type 1 to her children or other health complications.
She was also concerned about whether or not she'd be able to have a healthy pregnancy andwhat her state of health would be afterwards.
So this is the kind of thing we need to talk about openly, not just among us women.
(02:30):
because what you bring up is truly still a consideration.
I work with a lot of women, especially in that preconception and during pregnancy time.
And the question still comes up to me over and over in that time of I'm trying to getready.
Is it really safe for me?
What are the problems that could be there for the child?
(02:51):
I would say 100 % of the time, a woman or even a couple asks me what is the potential thatI will pass on the possibility of type 1 diabetes to my child.
And there is better information today and it is correct from a father versus a mother withtype 1.
(03:12):
It's much more common for the father to pass on if it is a genetic component.
But I think it's still unfortunate that this is the thought that women who are planning orwould like a child in their life, they're still trying to get around this idea of is it
okay?
Yeah.
(03:33):
Yeah.
And that's a lack of the right information out there.
Yeah, it's not, I mean, it's not just a consideration with type 1 also, you know, there'speople with type 2 also are told, you know, you're at risk of complications for you and
the baby.
(03:55):
It's going to make managing your glucose levels that much more difficult.
Your hormones change.
Your glucose sensitivity changes.
they get told that if they have a really strong relationship with the doctor who is wellinformed, usually they get told, you know, watch what you eat.
Yes, I'm glad you make that point because over and over, while it's very limited now forme to work with somebody with type 2 in pregnancy, previous to working with integrated, I
(04:24):
did work with a lot of women with type 2.
I also worked in a clinic where we saw a lot of women with gestational diabetes.
And the lack of good information really is still astounding in this day and age.
preparing a woman with type 2 diabetes who comes to you and says, know, my partner and Iare thinking of having a child.
(04:45):
What does this mean for me?
Most people don't even know what to ask.
And that should be on the clinician's side to say, well, we have to have, you know, theseare our goals.
You're on this kind of medicine.
It's going to mean a transition to this type of medicine because this isn't approved inpregnancy.
And you're right.
(05:06):
That comes down to a really great provider of which I hate saying it, but most of them arejust not educated enough to have that conversation.
Well, know, whether it's gestational diabetes type 2, type 1, it is a pregnancy that Iwould say has an elevated risk.
(05:29):
It doesn't necessarily mean a high elevation, which I think is another message that needsto get out there, but it does take more managing, more...
know, conscious, thoughtful management.
And the thing that also I've run into time and time again with women who had gestationaldiabetes is that there's such a focus on what they're dealing with in the moment that the
(05:59):
conversation that gets missed is the long -term implications.
I know 1 woman has five children.
They're all grown now, but she had gestational diabetes with all five pregnancies.
But was never told, this puts you at higher risk for developing type 2, you need tomonitor this more closely.
(06:20):
So, you the follow -up didn't happen.
It was years later that she got diagnosed, and only after her symptoms were very strong.
I got to wonder if she had been more closely monitored in the interim, could it have beencaught earlier?
Would that have led to a better outcome for her?
(06:45):
Many times the outcome, whether it's gestational or type 2 diabetes, but many times withgestational especially is they come in for that 6 week postpartum visit.
There's an evaluation.
They may have, again, with a really good practitioner who's been following with themduring the pregnancy, they may have said, continue to do those finger sticks or keep using
(07:07):
that CGM that they may have gotten for pregnancy.
Keep using it until we follow up again 6 weeks from now.
So we've got some information, some historical to kind of go on, but you're right, theymiss the boat in terms of telling them this has still put you at a higher risk of type 2
diabetes down the road.
(07:29):
So the changes you made in pregnancy, they need to be kept.
We need to keep up with this.
You need more frequent follow-up on this, especially if you're planning another pregnancydown the road.
Yeah.
sounds like you've talked to an awful lot of people about all of this.
Do you have a good connection with women who've had gestational diabetes or type 2 or justin general within the community and the writings that you do just come across a lot of
(07:58):
information?
live with type 2.
was diagnosed with gestational diabetes when I had my children.
Diabetes is in my family.
been, I don't know, 15 years since I was diagnosed with type 2.
And since then, I've been writing about diabetes a lot.
So I think over time, yeah, I've just run into a lot of
(08:22):
people here and there with this experience.
Women's health is interesting to me, not just because I'm a woman, but because it has aripple effect.
The role a woman plays in their family and as a parent, not just genetically.
(08:48):
but also socially, if that person falls ill or has a chronic condition they have to dealwith or experiences anxiety because of their health or because of questions about their
health, that has a ripple effect, which is not to say it's not the same for a father or aman, but...
(09:09):
You know, society puts women in a particular role as caregiver, as parent, as nurturer.
kind of caregiver, I think there's still a very visual, even in today's more open kind ofconcept of family structure, right, that we have, there's still the idea that the mother
(09:32):
figure plays a particular role comparative to the father figure.
There are
different roles that you end up accepting or doing because that's how you grew up andthat's what your parents did or whatever it is.
And you're right, you live
a chronic condition, you can see the potential impact that it has, as you said, a rippleeffect on all those other things that you move through as one of your jobs being a parent.
(10:01):
I've always feel like as a parent you have like so many things people say, well, what doyou do?
Well, what do you want to know about what I do for this versus that versus career versus,right?
Yeah, yeah, yeah.
Well, and society does give us a certain idea or picture of the role, and that's changing,and we have to acknowledge that also.
(10:22):
Families don't necessarily look like what they did in the 40s, 50s, 60s, 70s, whatever.
Also, we have much more openness about
people who
are
not taking on traditional gender roles or gender identification.
And we need to have science and evidence -based healthcare for all of those situations,not just what...
(10:53):
some normative idea is that has been considered the standard up to now, which is a bigchallenge, especially since up to now we're only now acknowledging the limitations of
scientific research that's been done.
Mm
(11:13):
acknowledging the fact that women are underrepresented in clinical trials, people of colorare less represented.
There's a lot of complexity behind that in history that feeds that particular trend.
But it's something as simple as the color of your skin.
(11:38):
affects how skin irritations and skin conditions show up.
So that picture in the medical textbook might not match what's happening with the patientin front of you.
You know, there's sort of this conundrum when they look at statistics for diabetes of, youknow, South Asians are
(12:04):
statistically more likely to develop type 2, but they're not necessarily so likely to haveobesity as well.
And there's a, you know, there's a big assumption that those 2 travel together and 1 willpretend the other.
And in that population especially, it's very interesting because if you look at thedifferences between more westernized or Americanized and lifestyle versus lifestyle in
(12:35):
their own cultural atmosphere, right?
And the things that they're eating and their lifestyle and their habits and things, theyshift considerably in our Americanized kind of life.
And in terms of weight specific to type 2 diabetes, you're right.
They do not fall into the unfortunate, they have to have an overweight or obese status inorder to be considered, you must have type 2 diabetes when they're looking at numbers and
(13:07):
all of the blood work and that kind of thing.
I've seen it over and over again, honestly, in working with all different types of peoplewith diabetes and it is
very, it lacks the individualization that I think you're kind of in the background sort oftalking about.
Even skin conditions, we have to look at a person as a person, not the physician'sresearch in a couple of data kind of bases or a couple of, you know, cases that they've
(13:38):
treated and they say, well, it doesn't look like this.
Well, this person, you know, was maybe
Irish American versus you know what I mean?
So there are lot of differences in that it really means we have to individualize on allbases of management within diabetes.
And well, and I would also say we need to listen to the patient.
(13:59):
We need to listen to their experience.
You know, another thing that I run into a lot with in discussing their healthcare withwomen is, you know, I told them, I told them this was going on.
I told, you know, I told them I didn't feel right.
And they're like, well, you know, your blood pressure looks fine.
Another woman I know, her blood pressure runs low.
(14:22):
just because she's very athletic and very active.
And so her body is normalized at a lower blood pressure than the standard.
She almost ended up with pre-eclampsia because her blood pressure was high for her, but itwas still in the range.
(14:43):
Yeah.
And the doctor would not listen to her when she said, I don't feel right.
This is not how I normally feel.
And they did the check, but then they didn't, they compared it to what the standard wasversus what her normal readings were.
(15:05):
So,
it's really important to listen to the person and what they're experiencing and meet themwhere they're at.
Because it's, you know, there's nothing more frustrating than not feeling well, going tothe doctor, being dismissed, and, you know, pretty much left on your own to figure it out
(15:26):
or decide what you're going to do about it.
It makes me really considerably think about the movement even outside of sort of thatconception age within women, women that are beyond that moving into their, you know, upper
forties, fifties or whatever that peri-menopause into menopause time over and over.
(15:50):
hear whether somebody has diabetes or not.
I've got a lot of friends who don't have diabetes.
kind of entering into that time period where things are looking a little bit wonky, right?
And they go to their healthcare practitioner and they raise these questions.
I'm just not feeling right.
This is what started, you're going into that time change in life is what they're told.
(16:12):
But they're given nothing beyond that.
Nothing to let's look at these parameters, let's try this.
I'll have you talk to somebody more knowledgeable about this.
And then when you pull that into diabetes management, it makes it even more frustratingbecause all of those hormonal shifts that you might've known are going to happen and you
(16:32):
have a strategy for, once you get to hormone changes that no longer fit your model thatyou've established, you're left even more in the dark because nobody can help you.
It's so frustrating.
it's like you have to go back to the beginning and figure it out again.
I mean, menopause in particular, seems like unless you have some kind of drastic conditionand a really involved healthcare provider, it's sort of like...
(17:08):
you can do hormone replacement.
You can ride it out.
Those are your options, you know?
And it seems like, shouldn't there be something more?
Yeah, something in the middle, maybe.
So that, yeah, I mean, that's another interesting time in life that, you know, we don'ttalk about enough.
And I think, so I watch,
(17:30):
PBS, the mystery series.
And there was an episode of Grandchester recently where the wife of the policeman isstarting to go through menopause.
they talked about her mother who was ultimately institutionalized.
Both of them had this great fear that she was going to end up with the same fate as hermother.
(17:56):
An older woman told her, you're going through the change.
you're going to feel wonky.
And she says, this is how I dealt with it.
She goes, I broke a whole set of crockery.
So every time she'd get frustrated she'd break a dish.
But I think it brings up the really good point is that it brings up the sharing ofexperience.
(18:23):
This is normal.
Your symptoms might be different than mine, how you're feeling, how things change, butthis is normal for you to be feeling.
It may not need to be medicated, right, as happened in the story, but
How can we work through these feelings and how can we open up the discussion?
I find so many women still really like almost squeamish about discussing this topic.
(18:49):
Yeah.
Well, I mean, that's how we were raised, right?
you don't discuss this in polite company.
And I mean, it goes back even to being a child and not being taught vocabulary, right?
We give our body parts, especially those that have to do with reproduction and sex,euphemisms.
(19:10):
Okay, so if I go to the doctor and say, know, my "nunu" hurts, doctor's not gonna knowwhat the hell that means.
Right?
Exactly.
That's one of the biggest, you know, I have 2 boys and I have taught them from a young agewhat the right name for their parts are.
And even if we have little silly names, they still know what it's called.
So they won't call it whatever the weird name is when they go to the
(19:31):
So.
Yeah, so yeah, but the sharing of it, that's sort of if we can get back to sort of thatcommunal or community exchange of, you know, this is what's happening, it's natural, or
maybe it's not natural, or it's not something I'm familiar with, maybe you should get thatchecked out.
You know, that's so valuable.
(19:52):
And it also does another thing that I think is really important is that it moves us awayfrom stigma.
It moves us away from feeling shameful about these things that, you know, bodies aremessy.
They just are.
Anybody who's raised a teenager just knows it, right?
(20:13):
I'm not there yet.
Almost.
I have almost 12 year olds.
So we're sort of like right on the cusp of that.
So we have more knowledge there than I have.
if part of being healthy is also mental and emotional,
We need to do these things to support that as well.
It's not just, your blood pressure's fine, your glucose level's fine, your heart isbeating, your lungs are breathing.
(20:41):
It's more nuanced and complicated than that.
And I wish that, you know, healthcare and how we...
talking about healthcare and share about our health was more inclusive of not just thephysical, but also the mental and emotional, and also like you said before, more
(21:06):
individualized.
You know, been watching the Paralympics the last couple of days and
One of the things that really struck me was we have people of all different abilitiescompeting in the same sports and it's showing that what we might consider like a baseline
(21:30):
normality, like something as taken for granted as, you know, 4 functioning limbs isn't thebarrier.
that we think it is.
It's, you know, the spectrum of life is much wider than we're taught.
(21:51):
and we need to start accepting that and celebrating that.
Yeah.
And I think even within the realm of diabetes too, when you're talking about gestationaland type 2 diabetes and even type 1 diabetes, there is a wide range of management strategy
that can work in all of those different places, right?
(22:12):
We have so much new technology today and thankfully we are getting more on board with thetechnology not being just seen as beneficial to type 1 alone, right?
that technology is slowly as it is, but it's sort of moving into the realm of, hey, youknow what?
Why can't somebody with type 2 diabetes, why can't somebody with gestational diabetes makethe best use out of these products as well?
(22:39):
Again, it goes back to the individual nature of what 1 person might need versus anotherperson.
And I think of it a lot, honestly, when we look at clinicians.
And I think that there is a, I get the sense, I should say, that many clinicians you go towith a question and you can almost see them step back when you ask something that they
(23:03):
clearly don't know how to answer.
And they sort of beat around it when honestly what the person really would prefer andreally appreciate is if that clinician just says, you know what, I don't know.
but I see that you got some specific things that you need to work on or questions.
And in women's health, I think that this clinician might be better for you or let's get avisit over here.
(23:29):
There may be things that this person can answer well more than I can, but it's almost theworry of the loss of that care to that person that causes the doctor to say, well, you
know, it is what it is.
Nobody wants to hear that.
that's right.
Yeah, it's like that old joke.
(23:49):
I went to the doctor, I said, doctor, it hurts when I go like this.
Doctor says, don't go like that, right?
So, yeah.
something, we were like, dad, this hurts.
Well, then don't wiggle your finger like that or don't push on it.
And we'd be like, dad.
That's great, but my bone is broken and I'm gonna end up with a crooked finger for therest of my life if we don't deal with this.
(24:10):
yeah, I mean, I think also there are some very real barriers in healthcare for doing thatkind of collaborative care.
Insurance is a huge one.
And that's, can't ignore that elephant in the room.
Another is,
Is the doctor part of or encouraged to be part of a network of clinicians and a networkthat goes beyond their focus or specialty?
(24:38):
It would be great if we could do personalized care that is integrative.
those are all the things we strive for.
Not quite there yet.
We're not.
I always think in the realm of people living with type 2 diabetes, that integration wouldbe so very valuable in long -term health outcomes, right?
(25:01):
Because if you can integrate into a, let's say this person has taken time off of work forthis 20 -minute visit, if they get that, again, insurance being the big thing in the room
that's kind of compounding the problem.
but they get this little short visit time and then they're told, well, you need to see adiabetes educator, let's say, if they even have one that they can refer to.
(25:24):
Well, that's another time out of work for that person to make, right?
Rather than an integrated visit that says, okay, you've got 15 minutes with the doctorhere, we're gonna root out the things that need to be addressed, the other 15, 20, maybe
30 minutes.
part of this visit is gonna be with an educator or with the dietician or with, you know,whoever, or the person who's gonna teach you how to start taking your injections the right
(25:49):
way, because that's new on the list now.
But we don't do it that way.
It's not covered that way.
And we are leaving people in a lurch, the underserved populations, truly.
They're being left.
go.
to manage in a really poor way that doesn't work.
(26:13):
Yeah, there's so many threads I could pick up on that.
so something that recently happened.
There's an over -the -counter CGM available now.
$100 a month, more or less.
Anybody with type 2 who doesn't use insulin could use it.
However,
What support is there out there for people to understand how to use it?
(26:38):
I mean, I'm sure, yeah, and what it means and how can they respond?
if they don't get the results that they want, how do they avoid beating themselves up?
And...
So, know, technology gets touted a lot as it's gonna, you know, it's gonna changehealthcare, it's gonna make it great for everybody.
(27:00):
I'll just say, you know, I'm not so certain, because we can't lose that personalized humanelement where people are there to help.
teach and learn and support and coach and you know, and you know, be there throughout thewhole journey, not just, here's your thing.
(27:26):
Yeah, watch the video on how to install the sensor, load the app on your phone, see you in6 months.
You know, we're not just pushing people out the door that way.
Right.
When I was...
falls short in terms of the understanding in the person recommending.
Because again, as I've seen, a lot of people with type 2 diabetes really don't get tostart to see an endocrine practice until either ever, even if they are put on insulin,
(27:57):
they may never ever see somebody.
And
if
for the minor amount that do get into an endocrine practice, they may have a huge upcomparatively, but general practice, they know a lot of information at a very tip top
level, right?
They have to know all disease states and what signs, symptoms, things to look for, butthey can't get into the nitty gritty.
(28:21):
That's the specialty job.
Again.
a problem with how we navigate people through our healthcare system and to get them whatthey really need.
So if we have general practice recommending, hey, there's this new product, you don't wantto do your finger sticks, great, slap this on, it'll collect all of your information.
And then like you said, I'll see you in 6 months.
(28:43):
But really, we know the value of continuous monitors as I can do something about what I'mseeing, I can learn from
the variables I have in my day to day.
can learn what, a walk every morning that I've started to do because the doctor told me Ishould walk.
Gosh, this really makes a difference.
I can see if I don't do it on Saturday versus I do at my weekdays.
(29:03):
But if nobody points out bare minimums to pay attention to, you're right.
The value of a hundred dollar 2 cents a month is down the drain for that person andthey're probably not gonna go back to using it.
the other thing that occurs to me is it's not just GP that has kind of the, you know, thisstripe.
(29:28):
the top level stripe across a lot of conditions, knowledge.
I've also been frustrated with specialists who
And I don't mean this to be controversial, but...
Not at all.
So I've had the experience with diabetes nurses and CDEs where they are very knowledgeablewith type 1 and not type 2.
(29:52):
so Some of them have even fallen into,
I can tell have that, have bought into the idea that, you know, type 2 is a lifestyledisease and if you just make the lifestyle changes and, you know, it's all on you
all your fault give, right?
It's a, if you would do these things lifestyle wise better, you could turn this around.
(30:18):
When that's not, I mean, you living with it long enough to totally understand and all thepeople who have it and that may listen or whatever out in the community can very well tell
you that they may be doing all the things that they've now read about or looked at onblogs and.
it's not making that much of a difference.
And the unfortunate thing with educators, as you said, there are some very knowledgeableeducators in all realms of diabetes, but they're not the wealth of us, unfortunately.
(30:50):
And because type 2 has the highest prevalence worldwide, we are at an extreme lack inassisting at that individual level.
I don't care what kind of diabetes you have, quite honestly.
I think each step by step you do with somebody takes working with that person tounderstand what do you like to do?
(31:16):
What's this effort?
What's it worth to you?
What can you do?
Have you tried?
And maybe even as a recommendation, changes that they can go back to their doctor with torequest, hey, I've been using this medication.
doesn't seem to be doing the best.
educator recommended maybe we talk about this, but that takes somebody who's willing todig into the weeds with the person with diabetes.
(31:41):
It also takes the person with diabetes having a certain level of confidence in being ableto bring up the topic, discuss it intelligently, take it back to whoever their primary
care person is, and have what might be a tough conversation with them as well.
It takes a lot.
(32:02):
And then also,
Another area that I really wish there was a lot of improvement in, and particularly arounddiet and nutrition, is the recognition and acceptance that not everybody eats the same.
Right.
(32:25):
We're a multicultural country.
We're a multicultural world.
And if you tell someone who grew up on rice, I knew somebody who was in a family of threepeople and they were Cajun and rice was the center of their plate.
They told me once and I was absolutely stunned that this family of 3 went through 25pounds of rice in a week.
(32:53):
That's
a lot.
know if I completely believed him, but just the idea that you would buy a big bag for thatfew people and it would be gone that soon.
So you can't say don't eat rice.
That's not gonna work.
to work.
It's again, it leads back to that word of individualization.
It really does.
(33:13):
starting, you know, I, when I get to work with people, we always start, where are you?
What's your understanding?
What do you want?
Where do you want to get to?
And what needs to be kept because it's part of your culture.
It's part of your family structure.
It's part of
Just what you like to do.
If you want to eat a chocolate donut every Saturday morning, because that's what you grewup doing with grandpa and it's just stuck.
(33:39):
We have to figure that out, right?
Not a, no, you can't do this anymore.
It's my job to be able to structure it and, you know, and help with that.
But again, in terms of what you mentioned before about type 2 and educators, I think whatI've found in many more of the brick and mortar
(33:59):
established and more accredited programs for type 2 diabetes education, it really is ahost of a checklist that they have to make sure that they hit.
Which as you know, well, I always think checklists don't individualize anything.
It's just a, I talked about that.
(34:21):
Yes, we got to this point.
I taught them about carbohydrates and it's all done.
Move on to the next.
I think that's a huge, it's a huge loss to the person, absolutely.
Yeah, I mean, but also the other thing is it's a huge ask of the provider.
(34:42):
One of the first consults I had with a dietician was somebody, I was living in Hawaii atthe time, somebody on the mainland.
And they were asking, okay, so what do you eat during the day, blah, blah?
And I said, well, for lunch, I often have bento.
And she had no idea what that was.
(35:03):
that was...
that sort of brought the conversation to a dead stop because she didn't have any referencepoint, even if I described it, she wanted the description in terms of, how many ounces of
rice and what is a pickled plum and how much of that and what's in, okay, said you hadteriyaki beef, but what's in the teriyaki?
(35:30):
And it was...
And your response is, don't know, I'd have to go and ask the chef.
And that was three weeks ago.
Well, I really don't know.
Yeah, I mean, I can tell you generally, yeah, it's got sugar in it.
It's like a barbecue sauce.
Should I be eating it?
Well, maybe.
Anyway, so it is, at the core of it, there's a lot of frustration.
(35:53):
There's a lot of barriers, but we can't, again,
I go back to the people we can't lose sight that everybody involved is a person.
well, it may be frustrating, you I work really hard not to blame people and get, you know,angry with people and their limitations, including my own.
(36:15):
But that doesn't absolve me or anybody else of the requirement that we try to make itbetter.
Right, right.
And what are I mean, to improve the situation?
What are what do you think can as a stepping stone help to make it better?
Is it I always feel like, gosh, it's such a huge take on that our health care system ingeneral, it's broken in many ways.
(36:44):
And I think it would take a really big revamp of a whole system.
Where can we start on a bottom level, especially within diabetes and women's health andeverything that surrounds the navigation and making it easier to talk about and de
-stigmatizing things?
Like where do we start?
start with conversation.
(37:04):
I mean, I think both in and outside the doctor's office.
And I think, you know, we as patients have to be a bit more demanding.
You know, if a doctor is dismissive, then, you know, ask again, go find a differentdoctor, find some other resource.
(37:28):
these days, there's more
there's more resources available remotely than there used to be.
mean, one of the, yeah, that was one of the silver linings of the pandemic was telehealthhas become more common, more accessible.
also I think for patients, I would say, you know, lean into the patient community.
(37:52):
Mm -hmm.
online and locally.
You know, realize...
That's one thing in the online community I've seen a lot of ask and again I'm much more inthe type 1 sort of community but I still linger into some of the online groups with type 2
specifics too but there's a lot more communication.
I mean I've had type 1 for 36 years and I know my parents would have loved to havesomebody else to be able to communicate with than the doctor.
(38:20):
I know that they would have loved to be able to have a community component to be able toreach out and say, hey, is this normal?
Like, should I ask somebody else about this?
Or what about this new thing?
Or have you tried this or heard about this?
So our community aspect is definitely so valuable.
And when you find providers by asking, that makes it even better, especially if you haveaccess to that particular.
(38:47):
Yeah, I mean, it's like any community.
Ultimately, you have to decide whether the information given is useful to you or not.
And it's very tiresome, the people who have found Jesus, so to speak.
They have found the treatment, they have found the approach, and it works for them, andtherefore it absolutely will work for you.
(39:15):
And there's also, it's heartbreaking when bullying happens, and 1 person or 1 groupdecides they're more worthy than another, and they're going to...
point it out again and again and again or want to.
way that their way is absolutely 100 % the way that everybody should be doing it becausesee how good it works for me.
(39:40):
Yeah.
And, you know, it's sort of like, okay, you're a universe of one.
An N of 1 is what I always say.
had to explain that not too long ago to somebody.
said, my N of 1.
they're like, don't, N of 1?
What is that?
My universe.
(40:00):
But yeah, I mean, I think that's, know, structurally, yeah, there's a need for healthcarereform in our government, in our regulation, in our economy of healthcare.
I think that ultimately what I see is that there's sort of butting of heads.
(40:26):
There's a group of people who see healthcare as, you know, it's a human right.
Everyone should have access.
Everyone has the right to a healthful, comfortable,
enjoyable, fruitful life.
(40:47):
And so they see healthcare in one particular way.
And then there's the structure of healthcare with all its competing forces aroundeconomics and profit and regulation and requirement.
And they see healthcare in a very different way.
(41:09):
And so I think a lot of what gets, what we experience and what gets played out is that,that conflict between the 2.
You know, if everyone was humanistic, you know, we'd have, you know, some sort ofuniversal healthcare.
If everyone was capitalistic,
(41:30):
We would only have private healthcare and insurance.
Instead,
we have.
think in restructuring, we also need to start working on much more preventative care,right?
We are a system that treats once there is something and we treat and we treat more and weadd another thing.
(41:54):
And we have a nation that has some of the best emergency care in the world, but ourstatistics worldwide continue to go downhill.
in terms of wellness because we don't teach wellness.
Yeah, and I would argue that it's not so much preventative care, but it is fostering andsupporting healthful life, life, you know, environment, know, removing toxicity in the
(42:26):
environment.
you know, building communities that have open space that's safe, that have access to rawfood, that have access clean water, clean air, education, and not just reading, writing,
(42:46):
and arithmetic, but also, you know,
We used to teach home economics.
We used to teach health.
We used to have physical education.
You know, building community around things like...
know, sports and not sports, you're gonna grow up to be a football player and make amillion dollars, but sports and you know, sports and band and clubs and community service
(43:13):
so that you have connection to other people and you have a collective experience and youhave something, you know, you have emotion and experience beyond.
simply taking in media or being isolated or, you know, being criticized, you know, muchmore positive experience.
(43:36):
And, you know, that goes beyond preventative care.
That goes to how do we live as a society?
because a lot of those things that you mentioned really do teach helpful living, right?
Things like knowing how to actually cook your food, home -ac, right?
Things like even just knowing how to take a walk or how to run or those kinds of thingsare now more elective.
(44:04):
You can choose to do them, but they are, right, they are, absolutely.
And so
You know, we have a community of people who no longer knows what it means to look at anitem and say, this is food and this is not really food.
It's going to put something in my body, but it's not as nourishing as what this could beover here.
(44:27):
There's, if I was going to choose anything different, like career wise myself, I still gonutrition.
That's just a big part of my, I love just overall wellness and nutrition and food, but
I would go back and actually do much more within starting a plan of health education andunderstanding of what nutrients you put in your body do for your physiology long -term
(44:54):
from kindergarten through high school.
There would be an established plan of climb in information so that you knew by the timeyou got out of high school, why this versus that?
Why?
what should I be doing to further, you know, that kind of that preventative model, butstarting in a different way, I guess.
(45:15):
Yeah, well, and yeah, I mean, I look at societies like the Scandinavian society getstouted a lot as, you know, they're happy, they're healthy.
And even moving from Hawaii to the Pacific Northwest, I see a big difference in, you know,here there's a lot of outdoor activities, everything, you know, as simple as, you know,
(45:41):
walking in the forest or along the river to
Mm -hmm.
full -on snow camping and skiing and you know and there's a lot of people who are veryactive in those ways and you know the community the cities and counties have built
(46:03):
infrastructure and the state have built infrastructure to support those kind of activitiesso you know you don't have to pay
You know, you can pay, think it's $35 a year to get a state park pass, which lasts thewhole year.
You don't have to pay an entry fee every time you go.
(46:24):
In some places, public transportation will actually drop you at a trailhead.
You know, those kinds of things.
And people here seem very sort of oblivious to it, like it's always been that way.
And they don't understand or they don't acknowledge or see that that's the kind of actionthat builds a healthier society, healthier community.
(46:55):
And these are things we've known since like,
Edwardian and Victorian times.
So at some point we forgot about it or decided it wasn't important anymore, which isbaffling to me.
It's like in some aspects, you know, we've come so far ahead with technology, but in otherways we've gone backward in terms of our infrastructure and, you know, societal
(47:23):
infrastructure and community infrastructure.
Yeah.
And it all, I mean, lots of roundabout, honestly, in terms of what it all leads to whenyou're trying to manage, you know, a condition like diabetes, you live more where you live
and you have access to these types of things.
And it's just been, as you said, sort of part of the nature of the area.
(47:48):
You don't even think twice about it, but you move someplace else.
that no longer has that built in component.
mean, I live in sort of Southeast, the Madison area in Wisconsin, and we have bike lanesthat are designated.
We have lights for the bike lanes.
We have trails, galore, and parks, and everything similar to you.
(48:11):
And it's just part of the community here.
But when you leave this area and go someplace else where that structure isn't built intojust day -to -day access, really, it becomes hard to seek it out.
Or you lose that because you, you know, now you're onto something else and it's adifferent path in your life and you forget how to look for those things.
(48:35):
So I think there's a lot of things that definitely, definitely we could.
navigate and change.
Get on a board together with many other smart, smart women.
right.
If we ruled the world, it'd be a different place.
If we ruled the world, my goodness, it would be a different place.
(48:56):
Yes.
So yeah.
yeah.
I think, you know, all of it seems like, and it's easy to dismiss as, that's pie in thesky.
That's, you know, that's not really, you know, have we lost the focus on diabetes?
And I think not.
think it's, you know, part of managing diabetes is managing life.
(49:16):
It's managing your health.
It's everything.
And, you know, if it was simply a matter of
you know, taking a shot of insulin and everything was good, then yeah, this would all be,you know, ethereal, but it's not.
it's about how we, you know, nurture and nourish and move our bodies as much as it isabout how, you know, if we take a particular
(49:48):
injectable or medication and so we have to think about these things.
We do.
we have to become, you know, as we've kind of just said over and over, you have to becomevery vocal.
If somebody doesn't bring it up for you and you know enough to ask a question that doesn'tget answered, you keep asking the question and you keep asking for the next person to ask
(50:13):
the question to, because that's so important to understand for your own health management.
So we just, yeah, we have to think the bottom line.
We have to keep talking about it.
Right.
We do, we do.
you know, it's when you live with a chronic condition, it's almost like you get an extrajob, whether you wanted it or not.
(50:34):
And that job is to, you know, really understand what's going on with your health and, youknow, what's available to you to manage that and, you know, what the possibilities are and
then pursue the ones that make sense to you.
Yes, absolutely.
Absolutely.
always consider diabetes as long as I've had diabetes, I still consider it a kind of likea child that never really grows up.
(51:03):
Right?
Like you can never really completely send it out of your house and you get a call maybelike once every other week that's just like, how you doing mom or whatever.
no, it's more like the maybe like an eight to 10 year old all the time.
Smith, we need you to come down here.
Yeah.
Yes, exactly.
I don't know, any final thoughts that you have or anything final that you'd like to share?
(51:28):
I I think that there's always hope.
there's always hope.
And the thing I found is
you know, ultimately I am responsible for my health and what I do to manage it.
However, I don't have to do that alone.
And it's, I do better and it's easier when I don't try to do it on my own.
(51:53):
That when I do reach out to other people who know more or have experienced more or justhave a different perspective.
Yes.
And that's part of why I keep saying we need to talk about these things.
We need to make contact and learn from each other.
(52:18):
Absolutely.
Thank you so much.
That was such a great just cumulative of it all our own health care no matter what younavigate it it is ours.
But we have to have the ability to share it to gain more information and you can do thatby then turning outward to get that to bring it back to focus in the best way that's good
(52:40):
for you.
So thank you so much.
I really, really appreciate
your conversation and just discussion today.
And honestly, for everybody within our integrated diabetes clinical kind of staff, I wisheverybody would have been able to have a chat with you because I so enjoyed this.
(53:01):
Wonderful.
I hope to chat with you again at some point in the future.
Thanks again.
Welcome to Think Like a Pancreas, the podcast.
I'm your host Jenny Smith.
And today I'm super delighted to be joined by diabetes patient advocate and health contentwriter, Corinna Santa Ana.
You might know her online as Type2Musings.
Recently she participated in the International Consensus to End Diabetes Stigma.
(00:22):
and you can find out more about the ongoing efforts to end diabetes stigma online atdstigmatize.org.
So I am, like I said, I am so super excited to chat with you.
I work with a lot of women through multiple different times of their life.
And you're very correct in terms of how I know that, you know, some of the things thatI've read that you've put together and written so beautifully.
(00:48):
There is a lot of misunderstanding in women's health, not only with diabetes, but justoutside of diabetes in general, a lot of questions that don't get answered correctly.
So welcome to our chat.
Of course.
And you were just telling me actually something just before we got recording here about astudy that somebody had sent to you or you had had a discussion.
(01:14):
I think that would be just so unbelievably valuable to share.
Yeah, actually it was an article that was posted online on LinkedIn of all places.
The recent study or recent thinking is that passing on type 1 diabetes to children is morelikely to happen through the father than the mother.
(01:42):
So I haven't had a chance to look into all the details.
It was just sort of saw the news blurb.
what really drew my attention to it was the conversation online in response to thisarticle.
And there was a woman who posted that had she known this in her 20s and the 1970s, shemight have made a different decision about her reproductive health.
(02:04):
She mentioned that she had had a tubal ligation because she was
about passing on type 1 to her children or other health complications.
She was also concerned about whether or not she'd be able to have a healthy pregnancy andwhat her state of health would be afterwards.
So this is the kind of thing we need to talk about openly, not just among us women.
(02:30):
because what you bring up is truly still a consideration.
I work with a lot of women, especially in that preconception and during pregnancy time.
And the question still comes up to me over and over in that time of I'm trying to getready.
Is it really safe for me?
What are the problems that could be there for the child?
(02:51):
I would say 100 % of the time, a woman or even a couple asks me what is the potential thatI will pass on the possibility of type 1 diabetes to my child.
And there is better information today and it is correct from a father versus a mother withtype 1.
(03:12):
It's much more common for the father to pass on if it is a genetic component.
But I think it's still unfortunate that this is the thought that women who are planning orwould like a child in their life, they're still trying to get around this idea of is it
okay?
Yeah.
(03:33):
Yeah.
And that's a lack of the right information out there.
Yeah, it's not, I mean, it's not just a consideration with type 1 also, you know, there'speople with type 2 also are told, you know, you're at risk of complications for you and
the baby.
(03:55):
It's going to make managing your glucose levels that much more difficult.
Your hormones change.
Your glucose sensitivity changes.
they get told that if they have a really strong relationship with the doctor who is wellinformed, usually they get told, you know, watch what you eat.
Yes, I'm glad you make that point because over and over, while it's very limited now forme to work with somebody with type 2 in pregnancy, previous to working with integrated, I
(04:24):
did work with a lot of women with type 2.
I also worked in a clinic where we saw a lot of women with gestational diabetes.
And the lack of good information really is still astounding in this day and age.
preparing a woman with type 2 diabetes who comes to you and says, know, my partner and Iare thinking of having a child.
(04:45):
What does this mean for me?
Most people don't even know what to ask.
And that should be on the clinician's side to say, well, we have to have, you know, theseare our goals.
You're on this kind of medicine.
It's going to mean a transition to this type of medicine because this isn't approved inpregnancy.
And you're right.
(05:06):
That comes down to a really great provider of which I hate saying it, but most of them arejust not educated enough to have that conversation.
Well, know, whether it's gestational diabetes type 2, type 1, it is a pregnancy that Iwould say has an elevated risk.
(05:29):
It doesn't necessarily mean a high elevation, which I think is another message that needsto get out there, but it does take more managing, more...
know, conscious, thoughtful management.
And the thing that also I've run into time and time again with women who had gestationaldiabetes is that there's such a focus on what they're dealing with in the moment that the
(05:59):
conversation that gets missed is the long -term implications.
I know 1 woman has five children.
They're all grown now, but she had gestational diabetes with all five pregnancies.
But was never told, this puts you at higher risk for developing type 2, you need tomonitor this more closely.
(06:20):
So, you the follow -up didn't happen.
It was years later that she got diagnosed, and only after her symptoms were very strong.
I got to wonder if she had been more closely monitored in the interim, could it have beencaught earlier?
Would that have led to a better outcome for her?
(06:45):
Many times the outcome, whether it's gestational or type 2 diabetes, but many times withgestational especially is they come in for that 6 week postpartum visit.
There's an evaluation.
They may have, again, with a really good practitioner who's been following with themduring the pregnancy, they may have said, continue to do those finger sticks or keep using
(07:07):
that CGM that they may have gotten for pregnancy.
Keep using it until we follow up again 6 weeks from now.
So we've got some information, some historical to kind of go on, but you're right, theymiss the boat in terms of telling them this has still put you at a higher risk of type 2
diabetes down the road.
(07:29):
So the changes you made in pregnancy, they need to be kept.
We need to keep up with this.
You need more frequent follow-up on this, especially if you're planning another pregnancydown the road.
Yeah.
sounds like you've talked to an awful lot of people about all of this.
Do you have a good connection with women who've had gestational diabetes or type 2 or justin general within the community and the writings that you do just come across a lot of
(07:58):
information?
live with type 2.
was diagnosed with gestational diabetes when I had my children.
Diabetes is in my family.
been, I don't know, 15 years since I was diagnosed with type 2.
And since then, I've been writing about diabetes a lot.
So I think over time, yeah, I've just run into a lot of
(08:22):
people here and there with this experience.
Women's health is interesting to me, not just because I'm a woman, but because it has aripple effect.
The role a woman plays in their family and as a parent, not just genetically.
(08:48):
but also socially, if that person falls ill or has a chronic condition they have to dealwith or experiences anxiety because of their health or because of questions about their
health, that has a ripple effect, which is not to say it's not the same for a father or aman, but...
(09:09):
You know, society puts women in a particular role as caregiver, as parent, as nurturer.
kind of caregiver, I think there's still a very visual, even in today's more open kind ofconcept of family structure, right, that we have, there's still the idea that the mother
(09:32):
figure plays a particular role comparative to the father figure.
There are
different roles that you end up accepting or doing because that's how you grew up andthat's what your parents did or whatever it is.
And you're right, you live
a chronic condition, you can see the potential impact that it has, as you said, a rippleeffect on all those other things that you move through as one of your jobs being a parent.
(10:01):
I've always feel like as a parent you have like so many things people say, well, what doyou do?
Well, what do you want to know about what I do for this versus that versus career versus,right?
Yeah, yeah, yeah.
Well, and society does give us a certain idea or picture of the role, and that's changing,and we have to acknowledge that also.
(10:22):
Families don't necessarily look like what they did in the 40s, 50s, 60s, 70s, whatever.
Also, we have much more openness about
people who
are
not taking on traditional gender roles or gender identification.
And we need to have science and evidence -based healthcare for all of those situations,not just what...
(10:53):
some normative idea is that has been considered the standard up to now, which is a bigchallenge, especially since up to now we're only now acknowledging the limitations of
scientific research that's been done.
Mm
(11:13):
acknowledging the fact that women are underrepresented in clinical trials, people of colorare less represented.
There's a lot of complexity behind that in history that feeds that particular trend.
But it's something as simple as the color of your skin.
(11:38):
affects how skin irritations and skin conditions show up.
So that picture in the medical textbook might not match what's happening with the patientin front of you.
You know, there's sort of this conundrum when they look at statistics for diabetes of, youknow, South Asians are
(12:04):
statistically more likely to develop type 2, but they're not necessarily so likely to haveobesity as well.
And there's a, you know, there's a big assumption that those 2 travel together and 1 willpretend the other.
And in that population especially, it's very interesting because if you look at thedifferences between more westernized or Americanized and lifestyle versus lifestyle in
(12:35):
their own cultural atmosphere, right?
And the things that they're eating and their lifestyle and their habits and things, theyshift considerably in our Americanized kind of life.
And in terms of weight specific to type 2 diabetes, you're right.
They do not fall into the unfortunate, they have to have an overweight or obese status inorder to be considered, you must have type 2 diabetes when they're looking at numbers and
(13:07):
all of the blood work and that kind of thing.
I've seen it over and over again, honestly, in working with all different types of peoplewith diabetes and it is
very, it lacks the individualization that I think you're kind of in the background sort oftalking about.
Even skin conditions, we have to look at a person as a person, not the physician'sresearch in a couple of data kind of bases or a couple of, you know, cases that they've
(13:38):
treated and they say, well, it doesn't look like this.
Well, this person, you know, was maybe
Irish American versus you know what I mean?
So there are lot of differences in that it really means we have to individualize on allbases of management within diabetes.
And well, and I would also say we need to listen to the patient.
(13:59):
We need to listen to their experience.
You know, another thing that I run into a lot with in discussing their healthcare withwomen is, you know, I told them, I told them this was going on.
I told, you know, I told them I didn't feel right.
And they're like, well, you know, your blood pressure looks fine.
Another woman I know, her blood pressure runs low.
(14:22):
just because she's very athletic and very active.
And so her body is normalized at a lower blood pressure than the standard.
She almost ended up with pre-eclampsia because her blood pressure was high for her, but itwas still in the range.
(14:43):
Yeah.
And the doctor would not listen to her when she said, I don't feel right.
This is not how I normally feel.
And they did the check, but then they didn't, they compared it to what the standard wasversus what her normal readings were.
(15:05):
So,
it's really important to listen to the person and what they're experiencing and meet themwhere they're at.
Because it's, you know, there's nothing more frustrating than not feeling well, going tothe doctor, being dismissed, and, you know, pretty much left on your own to figure it out
(15:26):
or decide what you're going to do about it.
It makes me really considerably think about the movement even outside of sort of thatconception age within women, women that are beyond that moving into their, you know, upper
forties, fifties or whatever that peri-menopause into menopause time over and over.
(15:50):
hear whether somebody has diabetes or not.
I've got a lot of friends who don't have diabetes.
kind of entering into that time period where things are looking a little bit wonky, right?
And they go to their healthcare practitioner and they raise these questions.
I'm just not feeling right.
This is what started, you're going into that time change in life is what they're told.
(16:12):
But they're given nothing beyond that.
Nothing to let's look at these parameters, let's try this.
I'll have you talk to somebody more knowledgeable about this.
And then when you pull that into diabetes management, it makes it even more frustratingbecause all of those hormonal shifts that you might've known are going to happen and you
(16:32):
have a strategy for, once you get to hormone changes that no longer fit your model thatyou've established, you're left even more in the dark because nobody can help you.
It's so frustrating.
it's like you have to go back to the beginning and figure it out again.
I mean, menopause in particular, seems like unless you have some kind of drastic conditionand a really involved healthcare provider, it's sort of like...
(17:08):
you can do hormone replacement.
You can ride it out.
Those are your options, you know?
And it seems like, shouldn't there be something more?
Yeah, something in the middle, maybe.
So that, yeah, I mean, that's another interesting time in life that, you know, we don'ttalk about enough.
And I think, so I watch,
(17:30):
PBS, the mystery series.
And there was an episode of Grandchester recently where the wife of the policeman isstarting to go through menopause.
they talked about her mother who was ultimately institutionalized.
Both of them had this great fear that she was going to end up with the same fate as hermother.
(17:56):
An older woman told her, you're going through the change.
you're going to feel wonky.
And she says, this is how I dealt with it.
She goes, I broke a whole set of crockery.
So every time she'd get frustrated she'd break a dish.
But I think it brings up the really good point is that it brings up the sharing ofexperience.
(18:23):
This is normal.
Your symptoms might be different than mine, how you're feeling, how things change, butthis is normal for you to be feeling.
It may not need to be medicated, right, as happened in the story, but
How can we work through these feelings and how can we open up the discussion?
I find so many women still really like almost squeamish about discussing this topic.
(18:49):
Yeah.
Well, I mean, that's how we were raised, right?
you don't discuss this in polite company.
And I mean, it goes back even to being a child and not being taught vocabulary, right?
We give our body parts, especially those that have to do with reproduction and sex,euphemisms.
(19:10):
Okay, so if I go to the doctor and say, know, my "nunu" hurts, doctor's not gonna knowwhat the hell that means.
Right?
Exactly.
That's one of the biggest, you know, I have 2 boys and I have taught them from a young agewhat the right name for their parts are.
And even if we have little silly names, they still know what it's called.
So they won't call it whatever the weird name is when they go to the
(19:31):
So.
Yeah, so yeah, but the sharing of it, that's sort of if we can get back to sort of thatcommunal or community exchange of, you know, this is what's happening, it's natural, or
maybe it's not natural, or it's not something I'm familiar with, maybe you should get thatchecked out.
You know, that's so valuable.
(19:52):
And it also does another thing that I think is really important is that it moves us awayfrom stigma.
It moves us away from feeling shameful about these things that, you know, bodies aremessy.
They just are.
Anybody who's raised a teenager just knows it, right?
(20:13):
I'm not there yet.
Almost.
I have almost 12 year olds.
So we're sort of like right on the cusp of that.
So we have more knowledge there than I have.
if part of being healthy is also mental and emotional,
We need to do these things to support that as well.
It's not just, your blood pressure's fine, your glucose level's fine, your heart isbeating, your lungs are breathing.
(20:41):
It's more nuanced and complicated than that.
And I wish that, you know, healthcare and how we...
talking about healthcare and share about our health was more inclusive of not just thephysical, but also the mental and emotional, and also like you said before, more
(21:06):
individualized.
You know, been watching the Paralympics the last couple of days and
One of the things that really struck me was we have people of all different abilitiescompeting in the same sports and it's showing that what we might consider like a baseline
(21:30):
normality, like something as taken for granted as, you know, 4 functioning limbs isn't thebarrier.
that we think it is.
It's, you know, the spectrum of life is much wider than we're taught.
(21:51):
and we need to start accepting that and celebrating that.
Yeah.
And I think even within the realm of diabetes too, when you're talking about gestationaland type 2 diabetes and even type 1 diabetes, there is a wide range of management strategy
that can work in all of those different places, right?
(22:12):
We have so much new technology today and thankfully we are getting more on board with thetechnology not being just seen as beneficial to type 1 alone, right?
that technology is slowly as it is, but it's sort of moving into the realm of, hey, youknow what?
Why can't somebody with type 2 diabetes, why can't somebody with gestational diabetes makethe best use out of these products as well?
(22:39):
Again, it goes back to the individual nature of what 1 person might need versus anotherperson.
And I think of it a lot, honestly, when we look at clinicians.
And I think that there is a, I get the sense, I should say, that many clinicians you go towith a question and you can almost see them step back when you ask something that they
(23:03):
clearly don't know how to answer.
And they sort of beat around it when honestly what the person really would prefer andreally appreciate is if that clinician just says, you know what, I don't know.
but I see that you got some specific things that you need to work on or questions.
And in women's health, I think that this clinician might be better for you or let's get avisit over here.
(23:29):
There may be things that this person can answer well more than I can, but it's almost theworry of the loss of that care to that person that causes the doctor to say, well, you
know, it is what it is.
Nobody wants to hear that.
that's right.
Yeah, it's like that old joke.
(23:49):
I went to the doctor, I said, doctor, it hurts when I go like this.
Doctor says, don't go like that, right?
So, yeah.
something, we were like, dad, this hurts.
Well, then don't wiggle your finger like that or don't push on it.
And we'd be like, dad.
That's great, but my bone is broken and I'm gonna end up with a crooked finger for therest of my life if we don't deal with this.
(24:10):
yeah, I mean, I think also there are some very real barriers in healthcare for doing thatkind of collaborative care.
Insurance is a huge one.
And that's, can't ignore that elephant in the room.
Another is,
Is the doctor part of or encouraged to be part of a network of clinicians and a networkthat goes beyond their focus or specialty?
(24:38):
It would be great if we could do personalized care that is integrative.
those are all the things we strive for.
Not quite there yet.
We're not.
I always think in the realm of people living with type 2 diabetes, that integration wouldbe so very valuable in long -term health outcomes, right?
(25:01):
Because if you can integrate into a, let's say this person has taken time off of work forthis 20 -minute visit, if they get that, again, insurance being the big thing in the room
that's kind of compounding the problem.
but they get this little short visit time and then they're told, well, you need to see adiabetes educator, let's say, if they even have one that they can refer to.
(25:24):
Well, that's another time out of work for that person to make, right?
Rather than an integrated visit that says, okay, you've got 15 minutes with the doctorhere, we're gonna root out the things that need to be addressed, the other 15, 20, maybe
30 minutes.
part of this visit is gonna be with an educator or with the dietician or with, you know,whoever, or the person who's gonna teach you how to start taking your injections the right
(25:49):
way, because that's new on the list now.
But we don't do it that way.
It's not covered that way.
And we are leaving people in a lurch, the underserved populations, truly.
They're being left.
go.
to manage in a really poor way that doesn't work.
(26:13):
Yeah, there's so many threads I could pick up on that.
so something that recently happened.
There's an over -the -counter CGM available now.
$100 a month, more or less.
Anybody with type 2 who doesn't use insulin could use it.
However,
What support is there out there for people to understand how to use it?
(26:38):
I mean, I'm sure, yeah, and what it means and how can they respond?
if they don't get the results that they want, how do they avoid beating themselves up?
And...
So, know, technology gets touted a lot as it's gonna, you know, it's gonna changehealthcare, it's gonna make it great for everybody.
(27:00):
I'll just say, you know, I'm not so certain, because we can't lose that personalized humanelement where people are there to help.
teach and learn and support and coach and you know, and you know, be there throughout thewhole journey, not just, here's your thing.
(27:26):
Yeah, watch the video on how to install the sensor, load the app on your phone, see you in6 months.
You know, we're not just pushing people out the door that way.
Right.
When I was...
falls short in terms of the understanding in the person recommending.
Because again, as I've seen, a lot of people with type 2 diabetes really don't get tostart to see an endocrine practice until either ever, even if they are put on insulin,
(27:57):
they may never ever see somebody.
And
if
for the minor amount that do get into an endocrine practice, they may have a huge upcomparatively, but general practice, they know a lot of information at a very tip top
level, right?
They have to know all disease states and what signs, symptoms, things to look for, butthey can't get into the nitty gritty.
(28:21):
That's the specialty job.
Again.
a problem with how we navigate people through our healthcare system and to get them whatthey really need.
So if we have general practice recommending, hey, there's this new product, you don't wantto do your finger sticks, great, slap this on, it'll collect all of your information.
And then like you said, I'll see you in 6 months.
(28:43):
But really, we know the value of continuous monitors as I can do something about what I'mseeing, I can learn from
the variables I have in my day to day.
can learn what, a walk every morning that I've started to do because the doctor told me Ishould walk.
Gosh, this really makes a difference.
I can see if I don't do it on Saturday versus I do at my weekdays.
(29:03):
But if nobody points out bare minimums to pay attention to, you're right.
The value of a hundred dollar 2 cents a month is down the drain for that person andthey're probably not gonna go back to using it.
the other thing that occurs to me is it's not just GP that has kind of the, you know, thisstripe.
(29:28):
the top level stripe across a lot of conditions, knowledge.
I've also been frustrated with specialists who
And I don't mean this to be controversial, but...
Not at all.
So I've had the experience with diabetes nurses and CDEs where they are very knowledgeablewith type 1 and not type 2.
(29:52):
so Some of them have even fallen into,
I can tell have that, have bought into the idea that, you know, type 2 is a lifestyledisease and if you just make the lifestyle changes and, you know, it's all on you
all your fault give, right?
It's a, if you would do these things lifestyle wise better, you could turn this around.
(30:18):
When that's not, I mean, you living with it long enough to totally understand and all thepeople who have it and that may listen or whatever out in the community can very well tell
you that they may be doing all the things that they've now read about or looked at onblogs and.
it's not making that much of a difference.
And the unfortunate thing with educators, as you said, there are some very knowledgeableeducators in all realms of diabetes, but they're not the wealth of us, unfortunately.
(30:50):
And because type 2 has the highest prevalence worldwide, we are at an extreme lack inassisting at that individual level.
I don't care what kind of diabetes you have, quite honestly.
I think each step by step you do with somebody takes working with that person tounderstand what do you like to do?
(31:16):
What's this effort?
What's it worth to you?
What can you do?
Have you tried?
And maybe even as a recommendation, changes that they can go back to their doctor with torequest, hey, I've been using this medication.
doesn't seem to be doing the best.
educator recommended maybe we talk about this, but that takes somebody who's willing todig into the weeds with the person with diabetes.
(31:41):
It also takes the person with diabetes having a certain level of confidence in being ableto bring up the topic, discuss it intelligently, take it back to whoever their primary
care person is, and have what might be a tough conversation with them as well.
It takes a lot.
(32:02):
And then also,
Another area that I really wish there was a lot of improvement in, and particularly arounddiet and nutrition, is the recognition and acceptance that not everybody eats the same.
Right.
(32:25):
We're a multicultural country.
We're a multicultural world.
And if you tell someone who grew up on rice, I knew somebody who was in a family of threepeople and they were Cajun and rice was the center of their plate.
They told me once and I was absolutely stunned that this family of 3 went through 25pounds of rice in a week.
(32:53):
That's
a lot.
know if I completely believed him, but just the idea that you would buy a big bag for thatfew people and it would be gone that soon.
So you can't say don't eat rice.
That's not gonna work.
to work.
It's again, it leads back to that word of individualization.
It really does.
(33:13):
starting, you know, I, when I get to work with people, we always start, where are you?
What's your understanding?
What do you want?
Where do you want to get to?
And what needs to be kept because it's part of your culture.
It's part of your family structure.
It's part of
Just what you like to do.
If you want to eat a chocolate donut every Saturday morning, because that's what you grewup doing with grandpa and it's just stuck.
(33:39):
We have to figure that out, right?
Not a, no, you can't do this anymore.
It's my job to be able to structure it and, you know, and help with that.
But again, in terms of what you mentioned before about type 2 and educators, I think whatI've found in many more of the brick and mortar
(33:59):
established and more accredited programs for type 2 diabetes education, it really is ahost of a checklist that they have to make sure that they hit.
Which as you know, well, I always think checklists don't individualize anything.
It's just a, I talked about that.
(34:21):
Yes, we got to this point.
I taught them about carbohydrates and it's all done.
Move on to the next.
I think that's a huge, it's a huge loss to the person, absolutely.
Yeah, I mean, but also the other thing is it's a huge ask of the provider.
(34:42):
One of the first consults I had with a dietician was somebody, I was living in Hawaii atthe time, somebody on the mainland.
And they were asking, okay, so what do you eat during the day, blah, blah?
And I said, well, for lunch, I often have bento.
And she had no idea what that was.
(35:03):
that was...
that sort of brought the conversation to a dead stop because she didn't have any referencepoint, even if I described it, she wanted the description in terms of, how many ounces of
rice and what is a pickled plum and how much of that and what's in, okay, said you hadteriyaki beef, but what's in the teriyaki?
(35:30):
And it was...
And your response is, don't know, I'd have to go and ask the chef.
And that was three weeks ago.
Well, I really don't know.
Yeah, I mean, I can tell you generally, yeah, it's got sugar in it.
It's like a barbecue sauce.
Should I be eating it?
Well, maybe.
Anyway, so it is, at the core of it, there's a lot of frustration.
(35:53):
There's a lot of barriers, but we can't, again,
I go back to the people we can't lose sight that everybody involved is a person.
well, it may be frustrating, you I work really hard not to blame people and get, you know,angry with people and their limitations, including my own.
(36:15):
But that doesn't absolve me or anybody else of the requirement that we try to make itbetter.
Right, right.
And what are I mean, to improve the situation?
What are what do you think can as a stepping stone help to make it better?
Is it I always feel like, gosh, it's such a huge take on that our health care system ingeneral, it's broken in many ways.
(36:44):
And I think it would take a really big revamp of a whole system.
Where can we start on a bottom level, especially within diabetes and women's health andeverything that surrounds the navigation and making it easier to talk about and de
-stigmatizing things?
Like where do we start?
start with conversation.
(37:04):
I mean, I think both in and outside the doctor's office.
And I think, you know, we as patients have to be a bit more demanding.
You know, if a doctor is dismissive, then, you know, ask again, go find a differentdoctor, find some other resource.
(37:28):
these days, there's more
there's more resources available remotely than there used to be.
mean, one of the, yeah, that was one of the silver linings of the pandemic was telehealthhas become more common, more accessible.
also I think for patients, I would say, you know, lean into the patient community.
(37:52):
Mm -hmm.
online and locally.
You know, realize...
That's one thing in the online community I've seen a lot of ask and again I'm much more inthe type 1 sort of community but I still linger into some of the online groups with type 2
specifics too but there's a lot more communication.
I mean I've had type 1 for 36 years and I know my parents would have loved to havesomebody else to be able to communicate with than the doctor.
(38:20):
I know that they would have loved to be able to have a community component to be able toreach out and say, hey, is this normal?
Like, should I ask somebody else about this?
Or what about this new thing?
Or have you tried this or heard about this?
So our community aspect is definitely so valuable.
And when you find providers by asking, that makes it even better, especially if you haveaccess to that particular.
(38:47):
Yeah, I mean, it's like any community.
Ultimately, you have to decide whether the information given is useful to you or not.
And it's very tiresome, the people who have found Jesus, so to speak.
They have found the treatment, they have found the approach, and it works for them, andtherefore it absolutely will work for you.
(39:15):
And there's also, it's heartbreaking when bullying happens, and 1 person or 1 groupdecides they're more worthy than another, and they're going to...
point it out again and again and again or want to.
way that their way is absolutely 100 % the way that everybody should be doing it becausesee how good it works for me.
(39:40):
Yeah.
And, you know, it's sort of like, okay, you're a universe of one.
An N of 1 is what I always say.
had to explain that not too long ago to somebody.
said, my N of 1.
they're like, don't, N of 1?
What is that?
My universe.
(40:00):
But yeah, I mean, I think that's, know, structurally, yeah, there's a need for healthcarereform in our government, in our regulation, in our economy of healthcare.
I think that ultimately what I see is that there's sort of butting of heads.
(40:26):
There's a group of people who see healthcare as, you know, it's a human right.
Everyone should have access.
Everyone has the right to a healthful, comfortable,
enjoyable, fruitful life.
(40:47):
And so they see healthcare in one particular way.
And then there's the structure of healthcare with all its competing forces aroundeconomics and profit and regulation and requirement.
And they see healthcare in a very different way.
(41:09):
And so I think a lot of what gets, what we experience and what gets played out is that,that conflict between the 2.
You know, if everyone was humanistic, you know, we'd have, you know, some sort ofuniversal healthcare.
If everyone was capitalistic,
(41:30):
We would only have private healthcare and insurance.
Instead,
we have.
think in restructuring, we also need to start working on much more preventative care,right?
We are a system that treats once there is something and we treat and we treat more and weadd another thing.
(41:54):
And we have a nation that has some of the best emergency care in the world, but ourstatistics worldwide continue to go downhill.
in terms of wellness because we don't teach wellness.
Yeah, and I would argue that it's not so much preventative care, but it is fostering andsupporting healthful life, life, you know, environment, know, removing toxicity in the
(42:26):
environment.
you know, building communities that have open space that's safe, that have access to rawfood, that have access clean water, clean air, education, and not just reading, writing,
(42:46):
and arithmetic, but also, you know,
We used to teach home economics.
We used to teach health.
We used to have physical education.
You know, building community around things like...
know, sports and not sports, you're gonna grow up to be a football player and make amillion dollars, but sports and you know, sports and band and clubs and community service
(43:13):
so that you have connection to other people and you have a collective experience and youhave something, you know, you have emotion and experience beyond.
simply taking in media or being isolated or, you know, being criticized, you know, muchmore positive experience.
(43:36):
And, you know, that goes beyond preventative care.
That goes to how do we live as a society?
because a lot of those things that you mentioned really do teach helpful living, right?
Things like knowing how to actually cook your food, home -ac, right?
Things like even just knowing how to take a walk or how to run or those kinds of thingsare now more elective.
(44:04):
You can choose to do them, but they are, right, they are, absolutely.
And so
You know, we have a community of people who no longer knows what it means to look at anitem and say, this is food and this is not really food.
It's going to put something in my body, but it's not as nourishing as what this could beover here.
(44:27):
There's, if I was going to choose anything different, like career wise myself, I still gonutrition.
That's just a big part of my, I love just overall wellness and nutrition and food, but
I would go back and actually do much more within starting a plan of health education andunderstanding of what nutrients you put in your body do for your physiology long -term
(44:54):
from kindergarten through high school.
There would be an established plan of climb in information so that you knew by the timeyou got out of high school, why this versus that?
Why?
what should I be doing to further, you know, that kind of that preventative model, butstarting in a different way, I guess.
(45:15):
Yeah, well, and yeah, I mean, I look at societies like the Scandinavian society getstouted a lot as, you know, they're happy, they're healthy.
And even moving from Hawaii to the Pacific Northwest, I see a big difference in, you know,here there's a lot of outdoor activities, everything, you know, as simple as, you know,
(45:41):
walking in the forest or along the river to
Mm -hmm.
full -on snow camping and skiing and you know and there's a lot of people who are veryactive in those ways and you know the community the cities and counties have built
(46:03):
infrastructure and the state have built infrastructure to support those kind of activitiesso you know you don't have to pay
You know, you can pay, think it's $35 a year to get a state park pass, which lasts thewhole year.
You don't have to pay an entry fee every time you go.
(46:24):
In some places, public transportation will actually drop you at a trailhead.
You know, those kinds of things.
And people here seem very sort of oblivious to it, like it's always been that way.
And they don't understand or they don't acknowledge or see that that's the kind of actionthat builds a healthier society, healthier community.
(46:55):
And these are things we've known since like,
Edwardian and Victorian times.
So at some point we forgot about it or decided it wasn't important anymore, which isbaffling to me.
It's like in some aspects, you know, we've come so far ahead with technology, but in otherways we've gone backward in terms of our infrastructure and, you know, societal
(47:23):
infrastructure and community infrastructure.
Yeah.
And it all, I mean, lots of roundabout, honestly, in terms of what it all leads to whenyou're trying to manage, you know, a condition like diabetes, you live more where you live
and you have access to these types of things.
And it's just been, as you said, sort of part of the nature of the area.
(47:48):
You don't even think twice about it, but you move someplace else.
that no longer has that built in component.
mean, I live in sort of Southeast, the Madison area in Wisconsin, and we have bike lanesthat are designated.
We have lights for the bike lanes.
We have trails, galore, and parks, and everything similar to you.
(48:11):
And it's just part of the community here.
But when you leave this area and go someplace else where that structure isn't built intojust day -to -day access, really, it becomes hard to seek it out.
Or you lose that because you, you know, now you're onto something else and it's adifferent path in your life and you forget how to look for those things.
(48:35):
So I think there's a lot of things that definitely, definitely we could.
navigate and change.
Get on a board together with many other smart, smart women.
right.
If we ruled the world, it'd be a different place.
If we ruled the world, my goodness, it would be a different place.
(48:56):
Yes.
So yeah.
yeah.
I think, you know, all of it seems like, and it's easy to dismiss as, that's pie in thesky.
That's, you know, that's not really, you know, have we lost the focus on diabetes?
And I think not.
think it's, you know, part of managing diabetes is managing life.
(49:16):
It's managing your health.
It's everything.
And, you know, if it was simply a matter of
you know, taking a shot of insulin and everything was good, then yeah, this would all be,you know, ethereal, but it's not.
it's about how we, you know, nurture and nourish and move our bodies as much as it isabout how, you know, if we take a particular
(49:48):
injectable or medication and so we have to think about these things.
We do.
we have to become, you know, as we've kind of just said over and over, you have to becomevery vocal.
If somebody doesn't bring it up for you and you know enough to ask a question that doesn'tget answered, you keep asking the question and you keep asking for the next person to ask
(50:13):
the question to, because that's so important to understand for your own health management.
So we just, yeah, we have to think the bottom line.
We have to keep talking about it.
Right.
We do, we do.
you know, it's when you live with a chronic condition, it's almost like you get an extrajob, whether you wanted it or not.
(50:34):
And that job is to, you know, really understand what's going on with your health and, youknow, what's available to you to manage that and, you know, what the possibilities are and
then pursue the ones that make sense to you.
Yes, absolutely.
Absolutely.
always consider diabetes as long as I've had diabetes, I still consider it a kind of likea child that never really grows up.
(51:03):
Right?
Like you can never really completely send it out of your house and you get a call maybelike once every other week that's just like, how you doing mom or whatever.
no, it's more like the maybe like an eight to 10 year old all the time.
Smith, we need you to come down here.
Yeah.
Yes, exactly.
I don't know, any final thoughts that you have or anything final that you'd like to share?
(51:28):
I I think that there's always hope.
there's always hope.
And the thing I found is
you know, ultimately I am responsible for my health and what I do to manage it.
However, I don't have to do that alone.
And it's, I do better and it's easier when I don't try to do it on my own.
(51:53):
That when I do reach out to other people who know more or have experienced more or justhave a different perspective.
Yes.
And that's part of why I keep saying we need to talk about these things.
We need to make contact and learn from each other.
(52:18):
Absolutely.
Thank you so much.
That was such a great just cumulative of it all our own health care no matter what younavigate it it is ours.
But we have to have the ability to share it to gain more information and you can do thatby then turning outward to get that to bring it back to focus in the best way that's good
(52:40):
for you.
So thank you so much.
I really, really appreciate
your conversation and just discussion today.
And honestly, for everybody within our integrated diabetes clinical kind of staff, I wisheverybody would have been able to have a chat with you because I so enjoyed this.
(53:01):
Wonderful.
I hope to chat with you again at some point in the future.
Thanks again.
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