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The US healthcare system makes it difficult, expensive, and often impossible for people with T1D to access the care, education, and support they need to live. Around the Circle: Living Well with T1D brings together voices from across the type 1 diabetes community to share real stories, expert insight, and practical support for living well with T1D.
Hosted by the team at Blue Circle Health, a U.S.-based program transforming type 1 care, this podcast helps people go from just surviving to truly living well with type 1 diabetes.
Learn more at BlueCircleHealth.org
Have you ever felt frustrated trying to
get the help you need with your T 1D?
Me too.
And it's not your fault
navigating type one diabetes.
In today's healthcare system,
it's really, really hard.
My name is Scott Johnson.
I've lived with type one diabetes for 45
years, and today on around the circle, we
are going to dig into why self-advocacy
is so important and what that might look
like for you and your diabetes management.
You know, even if you have access
to everything you need with Type one
diabetes, it's still incredibly difficult.
But when you have to jump through extra
hoops, it feels almost impossible.
Uh, today we're talking with Rob Howe
about self-advocacy and how it might.
Just be the boost you need
to overcome those hurdles.
Rob's been a pillar in the T 1D community
for really as long as I can remember.
He keeps himself very busy running a
couple of businesses, a longstanding
podcast called Diabetics Doing Things.
Playing high level basketball and
spending some time in his spare
time with his wife in the Dallas
area among many, many other things.
Rob, welcome
Scott.
Thanks for having me.
It's my pleasure to be here and if you
think I'm a longstanding pillar in the
community, that's really saying something
because you were one of the people who
I discovered when I didn't even know
what diabetes blogging or sharing about.
Diabetes advocacy online looked like.
And so it's my pleasure
to be here with you.
Yeah.
Thank you very much.
That's very kind of you, and I'm just
so glad that you're a part of the
world that, that we walk in every day.
You make it a better place.
So let's, let's spend a few
minutes getting to know a
little bit more about you, Rob.
Tell me, tell me a little
bit about your story.
When were you diagnosed?
What was going on in
your life at that time?
Yeah, so I've lived with type one diabetes
for 20 years at the time of recording.
And I was diagnosed in 2005.
That was right in the middle of my
sophomore year of high school, so
I was 16 years old and now looking
back and meeting other people with
diabetes, that is such a challenging
time to manage a chronic illness.
There's never a good time to manage it.
But for many, the bell curve
of A1C outcomes or, or what
have you during that time are.
Typically the worst in in
the course of your life.
I have really learned a lot about myself
from my diagnosis with diabetes and
from meeting other people with diabetes,
and what's really stands out to me
about that time in my life is that.
Even today, it's still the
same as I love Basketball.
Ball is Life to me and my parents.
And I met with the local newspaper
right shortly after I was diagnosed
and they wrote an article about me
and the headline says No Stopping him.
And in that article, my mom talks about
how I'm sort of managing my disease
independently and I'm very disciplined.
It explains actually really well
the differences between type
one and type two, uh, diabetes.
So.
It was interesting how diabetes
advocacy really from the very
beginning of my journey with
diabetes has been a part of my life.
But something that I think we're
gonna talk about today is even when
you're really equipped to live with
diabetes like I am and like I was,
it still can cause a lot of problems
because there's so many different
elements that need to be managed.
Talking about the the advocacy
piece, is that something that you.
Kind of jumped right into, were you a
willing participant in that advocacy?
Or was, was your, your life
I imagine was also just kind
of a whirlwind at that time?
Yeah,
yeah.
I was a pretty normal 16-year-old.
You know, I had just
gotten my driver's license.
I was trying to fit in at school.
I was trying to carve out a space for
myself on the varsity basketball team.
I had dreams for my life.
The advocacy piece.
I think I have to credit a lot to
my parents who, you know, felt like
it was important for me to, and, and
this could be a little bit of like
trauma response, uh, which I think I
see a lot in the community of, Hey,
we got this bad news, but guess what?
We're gonna be okay and we're
gonna, we're gonna do some
good and make some good of it.
Yeah, and I went along
with that willingly.
I thought it was important to do, and
I wanted to be this elite athlete.
I wanted to be this high level performer.
And what goes along with that are sharing
things with the public about your life in
a way that could potentially help someone.
So I think that's where
a lot of that came from.
You'll see I've surrounded
by sports in my office.
I, I, like I said, love basketball
and, and athletes have been a, a huge
part of my people I looked up to and
wanted to be like in my life and.
I think sharing that part of my
life felt natural because of that.
Yeah.
And you, you went on to have a
successful high school basketball career.
You played high level college
basketball as well at at Colorado.
And how was dealing with
diabetes through that phase of.
Of change also, like life is
moving fast at that point.
You're trying to, you know, earn
your time on the court and, and a
lot of high level competition there.
And many of those other athletes
weren't dealing with wrestling
with diabetes management too.
It's a great question, Scott.
Three things come up for me.
You never know what you're going
through at the time when you're 18.
Like you're just like.
All living off adrenaline and vibes
and trying to get outta your parents'
house and like be your own person.
It does seem like a lot looking back,
but at the time it felt natural.
I was chasing that dream of I,
I got a four year scholarship
to Colorado at Colorado Springs.
I got to live that dream.
My parents and I made a really conscious
and looking back, extremely important
decision to be upfront about my T
1D During the recruiting process.
I was very fortunate.
I was very good and had really good
grades in high school, so I had.
I picked to go to whatever
college I really wanted to go to.
So we picked a place where I felt
like academically, athletically,
and socially, I fit in and.
I made a great decision and, and that
was, you know, being upfront with took
courage and having conversations with the
training staff and with my coaching staff.
But I felt that if I was gonna go
somewhere for four years, I needed
to be upfront about what they were
getting and also to be safe for myself
to make sure that, you know, this
wasn't a situation where my diabetes
wasn't going to be welcomed and.
90% of the time that was true.
So I, I commend all my trainers and my
coach had a tough time, but even he,
you know, came around and, and wrote me
a nice letter my senior year about it.
So that was number one.
Number two, getting on
the court was really hard.
I went to a, a program that was very old
school, had a lot of older players in it.
Playing in a conference that was
built with a lot of older, bigger
guys, and it took me a couple
of years to be ready for that.
Lots of mental anguish, lots
of work behind the scenes, and
even some really challenging
conditioning days with diabetes.
I felt we were talking before we started
recording how Neil and I recorded
a podcast and said, nobody cares.
And and that's and just keep going.
That's really, I wish I could give myself
that, that mindset back then, because
it felt like every time I pulled myself
out for a lower high blood glucose in my
practices, that my teammates were looking
at me and judging me for it, and that
couldn't have been further from the truth.
I won't lie to you and say
that my diabetes didn't get in
the way of my athletic career.
It absolutely did.
I made the best of it.
You know, sometimes my blood sugar
was really, really high and I just
played anyway because there were only
20 games and I just wanted to play.
And number three, I think again,
going to school and chasing the
dream was really important for
me to just learn about myself.
And you know, I had this dream of my
life of being a college and professional
basketball player, and it wasn't always
glamorous, it wasn't always successful.
But I got to do both of those things.
And what it really did was give me a sense
of purpose that has helped me meet people
after the fact in the diabetes space.
It gave me the best friends I
made in my life and it helped me.
Learn the value of like really hard
work and playing college basketball
taught me how to get up every day
and face your enemy, who also has to
happens to be the person who is gonna
be able to give you what you want.
And that was my coach and,
and because I learned that.
Discipline and diligence and perseverance.
I was able to have the career that
I had and have the, the moniker,
a professional athlete next to
my name, which I'm very proud of.
Yeah, those are some very, very valuable
lessons and, and things you'll carry
with you for, for your whole life.
So that's, uh, uh, it
kind of makes me smile.
Thinking about it.
You earned you, you earned
your stripes there for sure.
One of the things that we think about a
lot at Blue Circle Health is that it just
shouldn't be this hard to stay alive.
And, and again, even as you mentioned,
when you have all the resources,
like a great endocrinologist, a great
family system and support there,
insurance that helps you pay for your
supplies and your insulin, it's still.
Really, really tough in, in so many ways.
What does it, what does it take in your
mind to actually live well with T 1D?
I'm laughing, Scott.
I'm sorry.
I'm laughing because I've been
thinking about this a lot lately
because people keep asking me that.
They keep asking me, Rob, what does
it take to live well with diabetes?
You seem to be living well with diabetes.
What, what can we learn from that?
And it caused me to really think over,
you know, the past month or so because.
I, I love what Blue Circle Health stands
for and is doing in the community because
we're not just addressing the clinical
and pharmacological aspects of diabetes.
What, what we could call maybe
traditional diabetes therapy.
Yeah.
You're also looking at mental
health and counseling and navigating
insurance and social, and so that
caused me to kind of like sit down.
I'm like, all right, I'm gonna write
down everything I can think of.
That it takes to live well with diabetes.
And it ended up being like
five pages full of things.
And, and so I had to categorize
it and so it came to four
different categories for me.
Physical, mental,
financial, and social, and.
I just used the F word there, the
financial word that nobody really likes
to talk about that much, but it really
resonates when you start to think
about all the decisions that we have
made in our lives related to taking
care of our diabetes financially.
And I'll get into that later.
So what I landed on
after this exercise is.
Rob, let's be honest here.
Am I the most equipped person
ever, the best equipped person ever
to manage living with diabetes?
And the answer, and I think it's a little
bit click Beatty, is yes, I, I have
the ability physically as an athlete, I
was an athlete before being diagnosed,
so I have a curiosity and a love for
exercise, which helps manage my diabetes.
I can.
Understand the inputs and outputs of
insulin and, and I can change my sights
myself, and I have, I can see, and I
have the ability, I'm an able-bodied
person to be able to do all of the things
that they tell you to do physically.
I'm very lucky to have had
parents who instilled a lifelong
love of learning in my life.
And you know, the unfortunate part about.
When you look at the state of the world
today, just in the United States, you
know, 40% of people aren't able to
read on a, a fourth grade or higher
level, which is a lot of people.
And whenever I look at macro statistics,
I see people with diabetes in there.
And so I know that there are people
who are being told the right things.
Maybe.
Maybe they.
The best endocrinologist in the world,
but they don't have the tools to make
sense of on a day-to-day basis while
they're balancing all these other
things in their life to help themselves.
And so that then you go on the financial
side and, and I think, you know, we live
in America a capitalist enterprise, and I
think I just sort of accepted that there's
this framework that I'm gonna have to fit
in if I want to live the life that I want.
And so I got good at it.
And I always felt like I needed to have
a job because I needed insurance or I
needed to be able to afford my medicine.
And until really recently, and that
never really occurred to me as kind
of like trauma response from, oh no,
like I, I would love to go backpacking
for two years and disappear in
two Bulgaria and grow a big beard.
But I never got to do that because
I felt like, well, if I can't
afford this diabetes care, then,
you know, what is the quality of
my life that's going to, you know.
Be as a result, then you gotta
learn about insurance coverage and
you gotta learn about formularies.
You got a promotion, that's your job.
Oh, but great, they just
switched insurance providers.
Now, a bigger chunk of your paycheck
is going to cover your meds.
And so there's all of that
juggling going around.
And then there's the social side,
which I think as men with diabetes
is even more important because yeah.
Making a friend with diabetes or just
knowing someone else with diabetes
and having someone you could text
about it is one of the biggest
life hacks I could give anyone.
Make a friend with diabetes is
my number one piece of advice
because all of a sudden, you know,
you're not doing something wrong,
you're just living with diabetes.
So that's like the overview
of the four kind of quadrants.
And you know, I've been talking
nonstop for four minutes probably,
and we didn't even cover 20% of them.
Yeah, it's overwhelming.
It's a crazy amount of things that
it takes to live well with diabetes.
And, and would you say that even
with as well equipped as you feel
diabetes is still hard, right?
Like, and, and that's one of the
things that I think is, is important
to get through about, about what we're
doing at Blue Circle Health is that
this is not just for those in those
categories that you mentioned where.
There are extra boundaries, barriers in
the way, rather, there are things that
that get in the way of taking good care
of living well with Type one diabetes.
Even the most well-equipped person
in today's system, it's still
very hard and they need more
help.
A woman commented on one of my YouTube
videos maybe a year ago, and she said.
He makes it look so easy and I, I made
a video where like, I apologized for it
because I didn't realize that yeah, it,
it is easy for me in, in that way, but
that doesn't mean that it's all easy.
It's really hard.
And I think there, there's a percentage
of people who, you know, kind of like
rebel against the idea of diabetes as a
disability because they don't wanna give
themselves permission to fail at something
or, or whatever this the case may be.
And I don't think that that's wrong of
them, but then I ask my response to them.
Is, well, how many things did you do
today just to get yourself to the office
or just to get yourself to school or
to get yourself through the workout?
Because if you didn't have
type one diabetes, like you
wouldn't have to do any of that.
There's an, there's an incredible amount
of people out there living off vibes.
Type one diabetes.
Like take totally takes that away
from you, and whether you're doing
a good job of it or not doesn't
mean it's not really difficult.
And that's where I kind of made
my piece with it, is that I
have all the tools to manage it.
Not one day has passed where
I haven't thought about my
diabetes in some capacity.
Good or bad.
It's amazing how easy we make it look to
these really hard things that we're doing.
Yeah.
All right.
Let's, let's take a quick break
before we dig into more stuff here.
One of our favorite things is sharing
stories from people who've participated
in the program, and I have one here
from David in Delaware who's been living
with type one diabetes since 2022.
My name is David Park.
I live in Rehoboth Beach, Delaware.
I was diagnosed with Type
one diabetes in 2022.
Living with type one diabetes
can feel like a full-time job.
There's a constant balancing
act watching glucose levels or
calculating insulin or planning meals.
It can also be tough to navigate
the healthcare system from getting
prescriptions renewed to dealing
with insurance and supply approvals.
Even with great medical care and good
insurance, it's easy to feel like
you're managing it all on your own.
Blue Circle Health has changed
the way I manage my diabetes.
It feels like I have a dedicated pit crew,
people who are smart, encouraging, and
genuinely care about helping me succeed.
They've helped me fine tune
everything from insulin settings to
providing support with health and
nutrition, to navigating insurance.
It's really been a fantastic
and rewarding experience.
David, thank you so much for sharing
your story with us for this episode's
Community Partner Spotlight I wanna
highlight Connected in Motion.
Connected in Motion builds T 1D
communities centered on experiences
like in-person camps and outdoor
adventures, along with peer-based
T 1D education and virtual events.
I'm especially excited about their
recently announced Platinum Club,
which is a community for adults aged
55 and above with type one diabetes.
Head over to connected in
motion.ca to learn more.
And that's right, they're based in
Canada, but they have events here in
the States and lots of virtual events
that you can join from anywhere.
So go check them out.
Rob, welcome back.
It's clear in listening to your story that
even as well equipped as you feel about
living with a. Type one diabetes you've
had to develop some self-advocacy skills.
What are, what are some of the lessons
that you've learned from advocating
through hard times that have stuck with
you and influence how you navigate and
think about your type one care today?
I think self-advocacy is one of the
most important skills that you can
develop with diabetes, and I don't
even know that I had a name for it.
Until recently or knew or
recognized what it was, but.
There are going to be obstacles even
when you have done all the things right.
And I think those are the things that
really get to me the most emotionally
is when I've done everything I need,
but my prescription now needs a prior
authorization, or it's supposed to be
ready and I'm going on a trip the next day
and now I have to jump through some hoops.
You know, these are minor
inconveniences, but diabetes fills
up a lot of space and you have a
lot of things going on like I do.
You know, you don't want it to take
up more than you had planned on.
And so self-advocacy for
me shows up as resilience.
And something I've only
learned recently is that.
Resilience and resistance and friction.
It's a, it's like a muscle.
The more you encounter and
respond to, the more you can
take on it builds your capacity.
Those of you who are not exercise
gurus may not know this, but you don't
go into the weight room expecting
to do, you know, a, a extremely high
personal best record on your first day.
Right.
Compared to a professional
weightlifter, for example.
So I think self-advocacy shows
up like that for me, where.
Your capacity for self-advocacy
today may not be very large.
That's okay.
We can increase it a little,
little by little and you can notice
what things like set you off.
Like the example I gave you don't
have to be great at it right away.
I think a lot of times it, it shows up
the biggest way in just saying Hi, I.
I have diabetes and I need something.
Yeah, I had a example with asking
for orange juice at a restaurant the
other day because my blood sugar was,
was a little bit low and you know, I
didn't say I have type one diabetes.
It's a chronic autoimmune condition
that it affects 1.5 million
Americans, blah, blah, blah.
I just was like, Hey, I need some
orange juice, and they brought it to me.
But that shows up as
self-advocacy as well.
So it doesn't always have to be
keynote speeches or these big moments.
It can be tiny little
things built up over time.
I love that the way you think about
that, because on one hand it doesn't.
Like it doesn't take much to tip
over dominoes that really disrupt
our, our life with type one diabetes.
And I also feel like in my life,
my resilience sort of capacity, it
moves and changes based on the other
things, the, all the normal things
in life that we all deal with too.
So if, if work is hard or if I've
got some family stuff going on, then.
I have a, a reduced amount of capacity
to deal with the, the diabetes dominoes
that are, that are falling over.
Um, but I do also like the, the
thinking that it's a skill I can build
and learn and, and get better at.
Sometimes diabetes is just going
to do diabetes and things are gonna
feel pretty chaotic for a bit.
Maybe the skill that I'm building here
is just the ability to kind of get back
up on that unicycle on the, on the,
the tight line, you know, tight wire.
I agree.
And I think something else that comes
up for me as we're thinking about
this is that your diabetes management
and the outcomes of it are not a
report card on your value as a person.
Yeah.
And if you can just allow yourself
to accept that, everything
else gets a little easier.
It's a hard thing.
Everybody agrees, even me.
It's a hard thing to do.
So give yourself a breather
and what can we do today?
One thing at a time that
will help us get to the next
level that we need.
Right.
I also like to think that the outcomes
that we see are not a result always
of the effort we're putting in.
And I think about somebody who's trying
so hard, but they don't have the tools
that they need or they, they don't, they
never got the education that, that is
necessary or they don't have the support.
Right.
And so they're trying so hard.
And still not meeting the, whatever goals
they have in their head for what Living
well with type one diabetes looks like.
And I, I just like to think like.
Effort doesn't always equal
outcomes, and sometimes it's about
looking at what are, what are,
what else do I need to live well?
Do you think there are any broad
principles that maybe we've talked about
in terms of some of the little things
that we can do to live well with T 1D?
That can be.
Applied broadly almost no matter
what someone's circumstances are.
I do.
I think they're, you know, I don't
wanna oversimplify things because
I'm not in every situation and I, I
want to be conscious that there are
situations that are just untenable
and from people with diabetes, and
I believe they should be given the
resources that they need to live well.
When I see macro statistics.
Relative to people living paycheck to
paycheck or people who are uninsured.
I heard last week that Texas has
the highest percentage of uninsured
patients with diabetes, which
hit me like a sack of bricks.
Uh, and I didn't, did not like the
way I felt when I heard that because
I can tell you things that apply.
You know, I think it's really important
to get sleep, and I think it's really
important to drink water, and I think
it's really important to walk outside.
But Scott, you know, if you have to
share your room with four other people
or you, you know, don't have clean water
to drink at home and you're not in a
situation where that's, you know, you,
you're able to learn how important it
is to drink just water, not just, you
know, whatever other, you know, sodas
or diet sodas even are, are out there.
Then it's really hard for me to
find a place to connect with you.
They don't wanna hear that.
That person doesn't want to hear, oh,
well you need to exercise one hour
a day and you need to eat, you know,
protein the size of your fist with also
vegetables and complex starches, and
make sure that you're monitoring with
your continuous glucose monitor and
your, Hey, how about an A ID system?
All of these things become secondary
when your basic needs aren't met.
And survival is your number one priority.
And so.
You know, if you're living in a hundred
percent of your life in fight or flight,
if you're living in paycheck to paycheck,
you are fight or flight because you know
that one car accident puts you completely,
you know, maybe out on the street.
Those are things that more people with
diabetes are dealing with in this country,
then I think we're afraid to admit.
I think that, you know, when, when we
think of American exceptionalism and, and
in the media, we don't think of people
like that, and there are much more people
whose day-to-day reality is closer to
that than, than we're comfortable saying.
Yeah.
And, and with.
When we think about that, that, that,
that group or those groups, or just anyone
who's going through these times, I think
it's, it's very helpful to think about.
All right, let me just think about,
as I wake up today, I'm not sure
what life is gonna throw at me.
I'm tired from, I'm tired from
what life threw at me yesterday,
and I'm a little afraid of
what's coming my direction today.
Just thinking about what's one
small thing that maybe feels
in my control around my type.
Type one diabetes that I can,
that feels realistic today.
Like I, I'm gonna just focus on that
and I'm gonna give myself some grace
and also be proud of how flexible and
adaptable I am, given everything going on.
I love that.
And I think if you're really looking for a
place to start that's more direct, I would
just say, I can check my glucose today.
Is it
possible?
Can we identify three
practical takeaways or maybe.
Simple self-advocacy actions
from our conversation today.
If you had, if I said, Rob, I need you
to pick three from all this stuff we've
talked about, what might those be?
Number one, you gotta make a friend
with diabetes that might turn
into a hundred things that that
help you with your self-advocacy.
That could be a friend on the internet,
it could be a friend in real life.
I highly recommend it.
It changed my life.
I hope it changes yours.
Number two, I think, is you, you've heard
the phrase like, start where you are.
Use what you have, do what you can.
I would put that into one thing, you know,
whether, like we said, check your glucose
or you know, consider a pre bolus before
a meal, or take 15 minutes after your
meal and go walk around outside, whatever
that little thing is, wherever you are.
Start there and be willing to
accept yourself where you start.
Number three, release the judgment.
Let it go.
You know what, I was, I was
sitting on my couch last night.
We had a Thanksgiving at my work yesterday
at my company that I run, and I told
my wife, I was like, you know what?
I did not nail that bolus, baby.
I like that.
I had, I messed it up.
I flubbed it.
Just, just awful, awful work by me.
And so I was in my meeting in
the afternoon and my blood sugar
was high, and I'm just sitting
in there like, you know what?
I can laugh about it because
I'm not holding myself.
I'm gonna hold myself accountable.
I'm gonna do better next time, but
I don't have to turn a mistake into.
Regret.
Yeah.
I love that.
All right.
There's a question that I like to
ask at the end of every episode
as we wrap things up here.
What is one thing that still
surprises you about Type one
diabetes even after all this time?
The thing that surprises
me the most about diabetes after all this
time, is how delicate a balance it is.
We all love to say diabetes doesn't stop
me from doing blah, blah, blah, except
I see it stopping us all, all the time.
When something goes wrong or a site,
uh, you know, heaven forbid a site
gets kinked or occluded, uh, and
we're in a meeting, people kind of
get weird when you start to do lunges
around the conference room table.
Or you know, you're doing jumping jacks
on a zoom and you're chugging water.
And I think we're all
doing such a great job.
There's insane levels of achievement
and advocacy coming from people with
diabetes, and I'm psyched about it.
I like to say that it doesn't hold
me back and it doesn't force me to do
things I don't wanna do, but I'm lying
if I say that 'cause it's always there
On that note.
Thanks so much for coming on the
show today, Rob, and just also
thank you for sharing so much of
yourself, so openly with the world.
It's a better place out
there because of it.
Thank you, Scott, that
that means a lot to me.
Thank you for having me and thank
you to all the good people at Blue
Circle Health who are really doing
incredible work for people with
diabetes who otherwise wouldn't get it.
And uh, that's one of the things I'm
most excited about learning about in the
diabetes space in the past year or so.
Uh, so thanks to everybody
and if you made it this far.
I appreciate you.
Well said.
Thank you.
If this episode resonated with you,
share it with a friend who might be
struggling with self-advocacy and just
let them know that they're not alone.
And then be sure to tune in for our
next episode where we're talking
about some of the limitations
our healthcare professionals face
when helping us with our diabetes.
I hope you'll join us.
Until then, keep living well with T 1D.