About Health Talk
Living with a chronic condition can feel isolating. Health Talk by Flowly was born from wanting to bring often isolated voices into the fold, and connecting different ideas, experiences, and tools to your own health journey. We talk to health practitioners and chronic health patients to deconstruct the chronic condition journey— from how many have managed the challenging diagnosis experience, to new tools and tips that might help you. We cover conditions including chronic pain, anxiety, autoimmune diseases, and more. Hosted by Celine, the founder of Flowly, this weekly podcast will dive into conversations with world class researchers, practitioners, and even more importantly, chronic condition warriors themselves.
You can also find Flowly Health Talk on Apple Podcast and Spotify.
Celine chats with Kirsten Soong, a chronic pain patient who brings both her own experience as a public sector leader and her seven year battle with chronic pain into the conversation. Important topics like finding the right community to support you, the right doctors who believe you, and developing physical habits to assist in daily health management all come up in this Health Talk. Kirsten has worked in the public sector as a leader in grassroots organizing for Planned Parenthood and ACLU, and she was recently at Google where she led the multinational strategy for Google Maps and Cloud products. Not only is Kirsten now an MBA candidate at Harvard Business School, but she herself is a chronic pain warrior. I’ve wanted to interview Kirsten because she brings not just her professional experience in the public sector to the table, but also her own learnings and experience managing her chronic pain.
*This transcript is auto-generated
hey y'all my name is Celine and i'm the
founder of Flowly
and your host for health talk by foley
as many of you know Flowly is a mobile
platform for chronic pain and anxiety
and essentially we teach users how to
control their breathing
and their heart rate to better manage
their nervous system
we use something called biofeedback for
relaxation training
and virtual reality so that you can do
it while fully immersed
in basically another world but we also
started this podcast in this interview
series because
we wanted a way to connect other members
of the chronic pain
illness mental health community with
each other as well as bring in health
advocates health patients
and professionals in the space to really
share their own ideas their own
tips journeys and lessons they've
learned along the way
in their invisible illness journey as we
all know
everyone is so different so we want to
bring in as much perspective
and different experiences as possible
and so i'm really looking forward to
today's chat with kirsten song
kirsten has worked in the public sector
as a leader in grassroots organizing for
planned parenthood
and aclu and she was recently at google
where she led the multinational strategy
for google maps and cloud products not
only is kirsten now an mba candidate at
harvard business school
but she herself is a chronic pain
warrior i wanted to interview kirsten
because she brings not just her own
professional experience
in the public sector to the table but
also her
own learnings and experiencing managed
chronic pain
so without further ado welcome kirsten
thank you so much for having me and
you're you're
coming all the way from are you in
cambridge boston right now
i am yes yes in cambridge right now yes
cool so i wanted to start at the
beginning of sort of your diagnosis
journey
and i do that a lot as a first question
with our patient advocates and
patient warriors because it's been a few
years since you started
experiencing your chronic pain or the
symptoms around it
and as we all know the diagnosis journey
can be really
challenging to say the least for many
people
and especially for women um in
the health journey and so i wanted to
know you know what was your journey with
that and did you have any particular
challenges you faced along the way
um so my journey started
about seven years ago and it
was probably the most difficult thing
i've ever had to deal
with it started basically with just some
pain
that i started just getting some
flare-ups and so i decided to see my
primary care doctor
slowly the pain actually started getting
worse and worse and worse over time
and that doctor connected me with an
orthopedic doctor
that you know had a three-month wait so
i'm still suffering through
all this time and then that doctor
didn't think i needed surgery at the
time but we tested
a bunch of pretty painful processes
different
injections a bunch of different
processes that didn't seem to
to work so then i was kind of in this
scary place where i didn't really know
what to do next i was trying physical
therapy
and different things and so i was just
basically
talking trial and error talking to
different people all while
being in a ton of pain and i remember
being told that there was this top
doctor in palo alto that was
the you know the best that i could see
and so i was in a ton of pain it was
raining i was on the brink of crying i
was just in so much pain
but i drove down from san francisco and
that doctor actually only
was a specialist in one like
vertebrae of the spine and so i didn't
know that and so he saw me
and said you know i can't really examine
you or help you
but you know from what you're saying it
sounds like either this is in your head
or it's something that you'll probably
have to deal with the rest of your life
and you know especially being in that
that place of he's it has a medical
background i don't
and i'm in tons of pain i remember just
going to my car and just
hysterically crying just not knowing you
know is this
really going to be the best i'm ever
going to feel for my life and i don't
really know how
to navigate this journey i remember just
being so scared and then i
actually had to take some time off work
and
decided after like a small accident to
defer a year from harvard
and spend a about a year and a half just
fully dedicated to
getting better you know through that i
probably
met around 40 plus doctors but um was
able to meet some incredible people that
helped support me through my journey and
i think
you know remembering if you're out there
and you're feeling
pain that there are people that
will provide you hope and that it
reminded me
to the importance of being an advocate
for yourself and
trusting your gut when you meet
particular practitioners
you know i was in a really scary place
five years ago
and today you know i i don't have pain
so
you know that's a pretty incredible and
grateful place to be right now
and i know you're saying that you met
over 40 plus doctors and
you know you really find i think for
most of the people
that we've spoken to and a lot of users
will say that
a lot of times they will encounter very
negative practitioners or practitioners
that don't believe them
when they go into the room and they talk
about their own symptoms i know we've
talked about this before where
you found a lot of hope with some
practitioners and maybe just people in
your life that have created
a community for you um so what was that
process
of being able to create that community
around you that provided
hope and support in that time yeah i
think that it was definitely really
difficult
to when i you know explaining for
example
the experience in palo alto and i had a
lot of
different doctor experiences but i was
grateful for them because it made me
realize
to be my own advocate and to trust my
gut
even though you know you may not be
trained in the
medical field you know your body and
when you meet with someone just because
you know they have one opinion
if you don't feel like that that makes
sense
for yourself and for your body that you
don't have to they're not the be all end
all and you should continue your journey
of finding
new people you know for me it was a lot
of trial and error but it was
it's kind of like friends like once you
find
one amazing person for me that was a
physical therapist
who helped find me a really great
physiatrist and then
a lot of times those people uh know
really amazing other people
and can refer you to kind of this team
so that's what happened to me was
i have two two doctors that are actually
some of my
closest friends now i would see them
like a few times a week
i think that that trusting your gut is
is
i think the number one piece of advice i
think secondly
being selective in just this whole
general
process of of dealing of being able to
have hope and support through this
not everyone understands necessarily
what you're going through
and i'm generally a person that shares a
lot about you know what i'm dealing with
what i'm going through
you know whether that be family members
or friends there's a certain people that
when i had conversations it was
much more challenging and difficult for
me especially starting at for example
harvard and meeting hundreds of new
people
i didn't necessarily want to explain my
whole entire story of like
every single detail what i was going
through so it actually helped me a lot
was
spending some time just writing down and
practicing like a can response
of um you know this is what i'm going
through this is what i feel comfortable
sharing and that actually helped me a
lot to feel
supported and not feeling like and
feeling like i can share with people
what i wanted to
and then being selective in the other in
who i actually wanted to
kind of go deeper and um explaining in
detail what i was going through so that
really helped me um feel helpful and
supported through through my journey
i think that's an amazing piece of
advice the idea of
writing down first and then maybe
creating a response that
you could use especially when you're
meeting new people or more unfamiliar
people because
i do think that we don't we
underestimate how vulnerable
health is to each of us and in fact i
struggle to think of something as
vulnerable as your own identity as so
much is tied to your own health and how
you
experience it and perceive it and
i think that's something that we've
heard a little bit of from a lot of the
patients that we work with is it's
frustrating like
being needing to explain yourself first
of all every time you meet a new
practitioner or
like you're going into a new clinical
setting and then much less like talking
about
you know going to family events or going
to social settings like needing to
explain
why you might have to sit down every
hour you can't dance at the wedding or
you know just little things and i think
that's that's something that i'm
definitely going to take to her and
share that advice because
that's really really interesting and
helpful
but i think one thing is and i i always
want to be
very cautious of balancing like the
positive with the negative
because it's there's no way we're going
to go around the big challenge of being
a chronic illness chronic pain patient
but at the same time i think there are
some techniques and tools that we can
have in our toolbox
for how we manage the roller coaster
of emotions physically and mentally um
and i know you had said to me that for
you recovery a lot of time feels like
you know one step four or two steps
forward one step back
so how do you manage the times when
you do feel you're one step back and
then maybe also how do you manage when
you're two steps forward too because
that can be
you know like it can be learning to
manage that on both sides
yeah absolutely i feel like it's kind of
both
in my pain journey just in life i think
this
idea of kind of two steps forward one
step back has helped me a lot
it was actually one of my doctors who i
would see quite often when i had
flare-ups
when just basically that phrase just
kind of changed my life
and you know i'd come into his office um
basically almost crying on the table
and when you're in that much pain and
you're in a flare-up
um it's all-consuming it's very scary
and my doctor would always remind me and
you'd say
remember kirsten two steps forward one
step back and for me that meant
look back at like where you were six
months ago six months ago at that time
potentially like i couldn't
either every day i had a flare-up and
then
at that point you know i was having a
flare-up every two weeks
or so recovery you know
around pain and just mostly you know
anything whether it be
something you're going through you can't
really expect to
take one pill or one surgery and get
better you know
like it's a zigzag it's a reminder to
look at the bigger picture that you are
getting better
and that you've also when you've been in
a really when you're in
a flare-up of pain remembering that
you've been there before
that you've been in a pain flare-up and
you've comey out the other side
and those reminders during those
pain moments were really really helpful
for me knowing that
for me especially as you mentioned you
know it's an invisible disease
and in the beginning it was really scary
for me because it felt like i was the
only person having this
i wasn't going to get better and
learning from my doctors and meeting
other many other people
by sharing my story that there are so
many people that have been
in your situation and
they have gotten to a place of no pain
and yeah just remembering it everything
takes time so
yeah and i wanted to introduce another
to add on to that is
because i know a lot of people listening
do currently still have
pain and you know one of the questions
we always get is
how do i emotionally mentally manage
that where i feel like okay this is
never ending
um and what one user we had recently
spoken to
she has chronic pain and she was saying
that through
slowly she learned this but i think you
can learn this in different
with different pts or therapists and
different tools
is that a lot of times prior to flowy
she would think about her pain like it's
a permanent thing like every day i'm
going to be feeling this flare-up
and in in of itself it felt discouraging
right
but then i think what she slowly learned
was that
when she was going into flare-ups she
would remember wait this is temporary
and that i have done this before like
yesterday i conquered it today i'm gonna
conquer it and there is a
there is the end of this tunnel
basically um
and i think that was a big sort of light
bulb moment for her even though it
sounds so
simple but i'm sure you can probably
relate where
it's not so simple in the moment to
actually recall that but once you're
able to it's a great
tool to have and way of thinking about
it
when you do experience it the other big
thing for us is
we're always trying to equip ourselves
right like this is one
example um but we want to equip
ourselves
physically mentally maybe even socially
with how to manage an invisible illness
or disease
so what traditional or alternative tools
do you have or have you had in your
toolbox
to manage on a daily basis
yeah that's a good question so my answer
to to give
like a caveat is that you know i have
been working on this for
seven years and i did take a year and a
half
to just focus on my health so
there are a lot of different things that
i personally do
but i think that every single person's
body is different
and so it's really important to trial
and error and figure out what is really
best for you
um and to remember that i think we're
taught a lot as i mentioned before
you know with anything medical related
that you know you just need to figure
out what that surgery is
or what that pill is or whatever it is
that physical therapist and that you'll
you'll be better
and it's important to remember with pain
that it's not just one thing
that is necessarily going to help you
it's really important to come at it from
many different angles
because you have the physical aspect and
then you also have the met the
the brain kind of mental aspect because
without
your brain telling you to have pain you
wouldn't be feeling that pain
but you know it's something that you can
also be grateful for because it's
telling you that it's
potentially something wrong that you
need to be paying attention to
you know for me it's a combination of
number one if you're experiencing a lot
of
pain and you're experiencing flare-ups
you know
people will tell you a lot of advice of
all these different things to do
but number one i think is figuring out
what will help you
during that flare up um because if
you're if you're
you're crying in pain and you can't do
anything
um you know someone telling you like eat
better or like
sleep better isn't necessarily going to
help you at that moment
so for me you know i had an incredible
acupuncturist
pt and massage therapist that
when i had extremely bad flare-up um
before you know trying to potentially go
to the hospital or something like that
really helped me and um i knew
also if i was had something stressful
coming up or
i had travel coming up i always
scheduled a lot of appointments
around that time just in case um to make
myself mentally
feel comfortable about you know whatever
situation i was going in
and then i think once you figure out
okay what are the diff the steps
that i can take in order to be better
um just for the flare-ups um it's
important to look holistically
about how to get how to fully
be healthy and i think that that's
something that i'm really grateful for
for this experience is that
you know realizing how important my
health is and that without my health
i have you know nothing else and so i
found it actually really lucky at it
at um a young age or you know any age to
realize
how can i actually live my best life so
things like i do actually think sleep is
extremely important you know i have a
sleep tracker
i have my blackout curtains uh making
sure
the bed that you're sleeping on is like
a a good bed
because you spend you know eight hours
every single day of your
life on it um i'm a sleep therapist
i think um meditation and slowly
is incredible and has made a really big
difference for me
as well um so it's honestly figuring out
and experimenting what is the a routine
and also you know what is your way of
life currently
what is your job i mean for me i changed
my entire
career and i changed um my lifestyle
just because i knew that it wasn't um
supporting my health and i think that
that
you know that wasn't just like a
something of a decision i made in a day
but it was something that i realized
that um
i needed to change so one of the things
this kind of leads into my next question
um which is inspired by
a affiliate user who i was speaking to
and
i think oftentimes you'll hear kind of
like general advice of and
um because when you're a pain patient or
even if you're like a mental health or
anxiety patient you try a lot of
different things right and you hear a
lot of
different advice so this is this
question is being asked from the
perspective of understanding
each person is individual each person's
experience going to be different
however i think it's really interesting
and helpful for others to hear
more about the nitty-gritty so like what
is
your and we can take today um like what
is your daily routine
and like from the moment you wake up in
the morning
what time do you go to bed what time do
you wake up
are there particular habits that you
feel are pretty important to you every
day
that does help you get through each day
and i think it really
is important to not judge yourself
because for me
right now i don't really i don't have
too much pain for me
every day um and even not too too long
ago you know when i was in school
i had a bit more flare-ups so i think it
depends on when you wake up every day
how you're feeling
and how you respond so for example if i
wake up
and i'm in a ton of pain um i'll make it
a priority to see
um like an acupuncturist or
someone to do bodywork so i have my i
have my fitbit or whatever
tracker that you want to use um
and i try to get at least eight hours of
sleep a day
then i wake up meditate so i use
something like fully to start my day and
then
i shower i also do about 30 minutes of
stretching
and probably had about 10 pts
or more so through that i figured out
the stretches that actually work best
for me i actually a recommendation for
working with pts
if you guys are or if you're working
with a trainer is
um to video ask them to video you
or them doing the exercises because that
was a huge game changer for me you know
you're in the office or
you're at the gym or wherever you're
trying to learn this exercise
and you um think you're going to
remember every little detail
like make sure to keep your hips this
particular where else
this could be bad for you um and
having a video of that um now for
example
i've been trying to do a few i've been
getting feeling a lot better so i'm
adding some more exercises
into my regimen and i have like
80 videos um that i'm like i want to add
so i can go back to my arsenal rewatch
the videos
um yeah so yeah so that's been helpful
um i think exercise is important and
then also just
remembering that like for me um
and for for everyone you know pain is a
part of me but it's definitely not
it doesn't define me it's not it's not
my entire
life so i do create um like
a daily to-do list a weekly to-do list a
monthly to-do list
um and that helps me keep my track for
me
to make sure i'm doing the things i'm
being an advocate for myself for my
health
and making sure to make those things a
priority but i'm also
um you know working on the other things
in my life
or seeing friends or doing whatever i
want to do that makes me happy and makes
me feel fulfilled
well i i think that's the way you said
that it's part of you
pain but it doesn't define you is so
important
um and that kind of leads into my
next question which is what are you
looking forward to right now in your
future
um anything that any projects plans
things that you're taking on or already
uh or you're looking to take on in the
future
so i think that actually this in this
whole experience
um has changed my whole career and
i actually want to work um specifically
in helping people
with um with chronic pain and
i think what makes it difficult is the
fact that you what you said it's an
invisible disease
but so many people are are suffering
through it it's i'm also so grateful i
think every person i've spoken to
that um has had chronic pain
has said that they are grateful for the
experience
and that it actually has made them a
better person you know for me
it's made me change my
be an advocate for myself not only for
my pain journey but for any health
experience that i ever have
in my future it helps me see a bigger
picture also my problems
there was a time you know in my life
where
i would every day i just wished that i
could wake up without pain
and now i do i wake up and i don't have
pain and
um to look at the problems in my life
and realizing just to be grateful for so
much of what i have
we have this short life to live and it
really has
helped me reflect on you know what do i
really want to do with my life
um and especially everything going on in
this world you know there's a lot of
um challenges that we're seeing and
facing so
um yeah i'm excited and grateful for
this pain journey the people that it's
brought to me um
the lessons that it's taught me and that
you know i hope that if
if you're in the middle of this
challenge or
experiencing pain that i hope you know
that it's actually a great lesson and
tool
and everyone has something you know like
everyone has
things that they're going through and
challenges that they're going through
and and for me this was
the challenge um but it really can
change your life for the better i think
it's amazing that you have that
perspective
um and that you've been able to reflect
back on that experience and
help it help you essentially um
it's i have to say working with
this population of people which is 100
million americans
so that's a lot of people i think
what my team and i have discovered is
that really invisible
illness patients are some of the most
empathetic
people that we've met very strong and
resilient
and so i completely echo what you're
saying
and i think that's a really beautiful
note to end our
conversation on so i really want to
thank you for
sharing this kirsten i know this is one
of the first times you have shared your
story
um but i think people will really
appreciate and resonate so thank you for
being here
yes no problem thank you for you know
working on fully i really
you know fully and meditation
and really working on your brain i think
really makes a big difference you know i
think that healthcare in general is
um is a human right and i think that it
you know i felt
really lucky to be able to have uh
a year to to focus on my health
i feel like it was a really big
privilege to be able to have that time
and space to focus on my health and i
not
i know that not everyone has had that
opportunity
and especially with everything going on
with covid
that people tell us since i was a little
girl like
without your health you have nothing and
i think with covet that really has kind
of
made our world realize that it stops
trade it stops our economy kind of
shut down our whole world even things
around
the protesting for you know equality
for women's rights all these things all
tie into
calling an end to the conditions that
have created that inequality
and i think a big part of that is
universal healthcare and access to
healthcare and i think
it's a human right to have healthcare
but also to live a life without pain
and for me i felt like my life was taken
away because i couldn't live my life
and i i understand you know why people
you know have to take painkillers or do
different things in order to live their
lives because they
can't find a current alternative and
that's why i'm really grateful for you
celine and for slowly
for creating you know you're not just
helping people
you're really helping to save lives by
giving people
access to something that can be a part
of their journey and help them with
their chronic pain and help them get
their lives back so
thank you and your team so much for for
what you're working on and i'm really
grateful
to have met you and had this opportunity
to speak with you
thank you well i'll just say we're a
very small piece
of that puzzle but i think our our
mentality is if we can even be
you know like five minutes in your day
of feeling good
and feeling comfortable and feeling
relaxed i think i think that's a big
step forward for a lot of people
um so just five minutes is fine for us
all right thank you so much kirsten
thank you everyone for listening in and
look forward to our next episode
you
