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 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