Flowly
Health Talk 04 Chronic pain: cultivating resources, community, and a daily ritual to manage pain
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 a