0:00

I know there's something and

0:02

you know it turns out that I

0:04

was right that whole time . But

0:07

it felt so isolating

0:10

. I felt like I was just kind of fighting

0:13

by myself to get anyone

0:15

to believe me .

0:17

Countless doctors , endless tests

0:19

and being told your pain isn't real . If

0:22

this is you , how would you keep fighting for a diagnosis

0:25

and the care that you know you need ? Hey

0:28

, tim here and thanks for tuning in to another episode

0:30

of the Invisible Condition Podcast , where we talk

0:32

about advocacy and unusually normal things

0:35

the conditions , diseases and illnesses

0:37

we live with . We will end the

0:39

stigma of invisible conditions by empowering voices

0:41

, and today's voice is brought to us by Katie

0:44

Dunleavy , founder of

0:46

Revive and Thrive Coaching and host

0:48

of the podcast my Chronic Illness

0:50

and Me . Katie's journey with

0:52

endometriosis is one of

0:54

perseverance and advocacy

0:56

. She spent years prioritizing

0:59

work , pushing health aside and

1:01

just gritting her teeth through the pain

1:03

, only to come home at night in tears

1:05

and crawl directly into bed . Despite

1:09

consistent dismissals from doctors

1:11

, she continued to advocate for herself . Katie

1:13

shares her emotional struggles , the

1:16

importance of self-advocacy and how

1:18

finding a supportive community has transformed

1:20

her life . She now

1:22

defines success as taking

1:24

care of herself , listening

1:26

to her body and building

1:29

a business that is

1:31

helping others , but also

1:33

being a good partner , a good sister and

1:35

a good friend . Have a listen

1:37

, katie

1:39

. I'm excited that you're on the show . You invited

1:42

me to be on your show not

1:44

that long ago and it was a great

1:46

conversation and I knew that I needed

1:48

to bring your energy to the Invisible

1:50

Condition podcast , so I appreciate you joining us today

1:52

.

1:52

Yeah , I'm so excited to be here . I

1:54

absolutely love the conversation that we had

1:57

For my show . I was listening

2:00

back to it the other day to do some editing notes

2:02

and I was like giggling to myself as I

2:04

listened to it . So I'm really excited to talk

2:06

to you again .

2:08

Yeah , I've had some feedback from friends

2:10

and from family of just how

2:12

good you are at interviewing and

2:15

it really shows . I know you're a

2:17

coach and we're going to get into that a little bit as well

2:19

, so , um so , for before

2:21

we even get to , uh , I want to actually introduce your show before , uh , we even get to , I want to actually

2:23

introduce your show before we even

2:25

get into the conversation , not save it to the end . But what's

2:27

your name ?

2:28

Yeah , so thanks . My show is called my Chronic

2:30

Illness and Me and

2:32

basically it's honestly not that different than

2:34

your show in that I have people on

2:37

who have all kinds of different chronic illnesses

2:39

and we just talk . We just talk about

2:41

their lives and their experiences and

2:43

their journeys and really

2:45

the

2:51

point of it is just to help foster community , as I know , you know , it can feel

2:54

so isolating to have a chronic illness sometimes . So I just want people to be able

2:56

to share their stories and to see

2:59

themselves and their own experiences reflected

3:01

back in the experiences

3:03

of others experience

3:06

is reflected back in the experiences of others

3:08

.

3:13

Community is a word that keeps coming up over and over , and I've met others now who are

3:15

in this space , this invisible conditions , chronic illness space , and there

3:17

are great shows , like yours as

3:20

well as others , and so this

3:22

is how we're going to end . The stigma , um is

3:24

, we are going to continue to tell stories

3:26

. And I was asking my seven-year-old

3:29

daughter uh , we were talking a little bit about invisible

3:31

condition and she answered a couple of eye rolls

3:33

as I was asking her questions for

3:35

her , uh , for her to like , she's like , come on , dad

3:37

, I just want to color , and . But we

3:39

got to a point where she said , dad

3:41

, we just need to talk

3:43

about this stuff .

3:44

It's so true .

3:45

That's how we're going to help people , and

3:50

so if somebody's listening and that's all they take away from this episode , you're not

3:52

. You're going to take away more it's . We need to continue

3:55

the conversation . That's awesome . Before

3:58

you know , I sent you a kind of a script

4:00

or a flow of where I wanted to go , and

4:02

I was pouring through your website and

4:04

I want to start a little differently , and I'm

4:06

actually going to read a little excerpt that you have on

4:09

your website and it says I

4:11

spent years prioritizing that work

4:13

, or the work that you're doing , pushing my

4:15

own health aside and gritting

4:18

my teeth through the pain during the day , only

4:20

to come home in tears and crawl directly

4:22

into bed at night

4:25

. That's heavy . There's

4:27

a lot of emotion in that . Let's

4:29

start there . Talk to us about what was going on .

4:32

Yeah . So I first started being

4:35

in a lot of pain all the time

4:37

when I was a teenager and

4:39

when I was 17 , I went

4:42

to the gynecologist and they said oh

4:44

you know , you might have this thing called endometriosis

4:47

, but don't worry about

4:49

it , we'll put you on the birth control pill . And

4:51

they kind of just like sent me on

4:53

my way without really explaining what

4:55

that was or what to expect

4:58

from it . So , you

5:00

know , I just kind of did , I just went on

5:03

my way and went about my life and then in

5:06

my mid-20s

5:08

I started to just

5:10

be in a lot more pain all the

5:12

time and it basically progressed

5:15

. It just kept getting worse and worse and worse for

5:17

I don't know five to

5:19

seven years and I would you

5:22

know on the website I say I pushed my pain down

5:24

. I did , and I didn't Like I

5:27

would go to the doctor . I went to dozens

5:29

of doctors . I went to GI doctors

5:32

. I had multiple colonoscopies

5:35

before I was like 24 . You

5:37

know , I saw

5:39

pain specialists and allergy

5:43

specialists and pain

5:47

specialists and allergy specialists and naturopaths and nutritionists and et cetera , et

5:49

cetera , et cetera . And I always kind of said you know this one

5:51

doctor when I was 17 said the word

5:53

endometriosis . Could

5:55

my pain , could my

5:57

stomach problems , could my back pain

6:00

, could my headaches , could

6:02

my , like , deep

6:04

pelvic pain be

6:06

related ? And every doctor you

6:09

know would take tests , would do scans

6:12

, mris , ultrasounds , and they

6:14

would see nothing and they would say yeah

6:16

, no , like no , it's probably

6:18

not it , and if it is , it's not worth

6:20

it because you have to get surgery to get a diagnosis

6:22

. So you know , in

6:24

the times between going to dozens

6:27

of doctors , I just freaking , got

6:29

through it Like I it's funny , I call

6:31

it my white knuckle phase because that's

6:34

how I felt Like I literally just felt like I

6:36

would just go to work . And

6:38

you know , kick butt

6:40

at my job , I cared deeply about the

6:42

work I was doing . Kick

6:46

butt at my job , I cared deeply about the work I was doing . But , yeah , over time

6:48

it just got so bad that I just , yeah , I would come home and I would cry

6:50

, or I'd cry in the shower before

6:53

I got dressed in the morning and

6:56

I just reached a point where I

6:58

couldn't do it anymore .

7:03

Let's unpack that a little bit . There's

7:05

a couple things coming into my mind and you

7:08

know one is advocacy . You know that's

7:10

. I'm all about talking

7:12

about self-advocacy and that , the importance of that . And

7:14

it sounds like you

7:17

advocated for yourself for years

7:19

. When you first

7:21

heard that word endometriosis and

7:23

when you brought it back up with doctors

7:26

and it was Dara

7:29

used the word dismissed or

7:31

just like , hey , you know , it's probably

7:33

not that . How did that make you feel ? You

7:36

know you're going through this for years .

7:37

Yeah , it almost . I mean it feels really

7:39

gaslighting , sliding , and

7:42

it's unfortunately something that

7:44

many women , especially

7:47

and especially with with conditions

7:49

like endometriosis or adenomyosis

7:52

or fibroids or PCOS things

7:55

that are considered but aren't actually

7:57

necessarily like women's

7:59

problems really

8:11

often get dismissed and it felt terrible . It felt like I had to keep fighting

8:13

and keep being like no , I know , okay , I see that you're telling me this

8:15

scan is fine and

8:18

you didn't find anything , but I know

8:20

there's something going on with me

8:22

. I should not be in this much

8:24

pain all the time and

8:28

there were long stretches

8:30

of time where I just got so burnt out

8:32

on fighting for myself and trying to

8:34

find help and trying to explain it

8:37

. You go to a new doctor and you have to tell them the

8:39

whole story all over again . You have

8:41

to take all your records . It's

8:44

so energy draining and I

8:46

would get burnt out on that for a while

8:48

and I would kind of eschew going

8:50

to any doctors for a minute and then

8:52

I would be in total pain . So I would

8:55

try again . It was terrible

8:57

. I mean truly , truly , just felt like

9:02

I know there's something and

9:04

it turns out that I

9:06

was right that whole time . But

9:09

it felt so isolating

9:12

. I felt like I was just

9:14

kind of fighting by myself

9:16

to get anyone to believe me .

9:21

And somebody finally believed you . And

9:23

what was that like

9:25

?

9:25

well , it's actually really funny because , um

9:29

, they did and then they didn't , so

9:31

I had a . So the reason I

9:33

sort of shifted my whole life eventually

9:36

is because I found a surgeon the

9:38

only . So endometriosis is

9:41

not curable , um , but

9:43

you can get a surgery where

9:45

it's called excision surgery , which is like the

9:47

gold standard of care , where you can get

9:49

a laparoscopic procedure

9:51

where they move around all your

9:54

organs . People think it's like

9:56

, oh , it's just a laparoscopic , like minor

9:58

surgery . Like no , they literally

10:00

move all of your organs around and

10:02

look everywhere and

10:04

, if they're good at what they do , take

10:06

out all the endometriosis lesions

10:08

they find and then

10:11

you can hopefully live after that for

10:13

several years with a lot less pain

10:16

. It's very likely that you'll have

10:18

to have surgery again , but at least you have

10:20

a better quality of life for several years . Anyway

10:23

. So I found a surgeon who is a specialist

10:25

and the first meeting I had

10:27

with him it was like , oh

10:30

my God , finally someone is

10:32

listening to me . He just

10:35

believed me . He was like yeah , yes

10:37

, you have endometriosis , I can almost guarantee

10:39

it . Are you interested

10:42

in talking about medication ? No

10:44

, you know , I've gone through that whole rigmarole

10:47

Like I really am ready for surgery

10:49

. I had done my research up the wazoo

10:51

Like I unfortunately know more

10:53

at this point than most doctors

10:55

about this disease

10:59

, my wish to

11:01

get surgery , and I was

11:03

so thankful . And then

11:05

the day of surgery comes

11:07

and I go

11:10

under . You

11:16

know , my , my parents are there , my partner's there . I'm so nervous . I'm a redhead and

11:18

redheads tend to wake up under anesthesia . So I like had a whole like

11:20

panic about that . Anyway

11:23

, so I wake up from

11:26

it , from under anesthesia

11:28

like , and I look at the

11:30

clock and it's like 30

11:32

to 40 minutes after I

11:35

had gone into the operating room

11:37

and my mom

11:39

was there and I was like mom

11:43

, like what happened ? And she

11:45

was like honey , like it's you

11:47

know , and I was like mom

11:49

, like I started to panic because

11:52

I knew that something must have

11:54

gone wrong , like they , they must not have

11:56

found endometriosis if I was under

11:58

for that short of a time . So

12:01

the doctor , the surgeon

12:03

, basically says like yeah , no , you

12:06

don't have it . You underwent this whole surgery

12:08

, you don't have endometriosis

12:10

. There were some spots that looked

12:12

sort of , you know , angry . So I took some biopsies

12:15

. But this is not what you're dealing with

12:17

. And , tim , I

12:19

have never been in a

12:22

worse I

12:24

mean honestly , like depression , truly

12:26

terrible spiral , than the probably like

12:28

three , four days after that , because I

12:31

had been waiting for so long to

12:34

have a doctor . Believe me

12:36

, listen to me , to get this surgery

12:38

I had to take medical leave from work , I

12:40

had to mentally prepare , you know , and

12:43

then , and then to wake up and be told like nope

12:45

, was the worst

12:47

, freaking thing . And then

12:50

, two weeks later , I had my post-op

12:52

and the biopsies came

12:54

back and they were positive for endometriosis

12:57

, which means that I do have

12:59

the disease . And what it also

13:01

means is that the surgeon , even

13:03

though he's supposed to be one of the best specialists

13:05

, didn't realized

13:08

that I had it , so therefore didn't

13:10

take it out . So

13:12

, after all of that , I

13:14

had a huge surgery , I had all this mental

13:17

stress and spiraling

13:19

and then only to find out

13:21

, yes , I actually was right this whole time . And

13:24

it's still inside of me .

13:28

Wow , okay , well , first off , thank

13:31

you for trusting us with this story . That's

13:33

an incredible emotional roller

13:36

coaster . I'm trying to wrap

13:38

my head around . You know , even

13:40

the preparing for surgery , you know . I've had

13:42

numerous surgeries and the

13:45

mental stress

13:47

, physical stress , the preparation

13:49

, it's just . You know it's not a walk

13:51

in the park , it is there's . there's a

13:53

lot that needs to go on just

13:55

to get ready for surgery , to

13:58

wake up , look at the time and go

14:00

oh , that was short . And then

14:02

to be told sorry , it's nothing

14:04

. I can't imagine

14:06

what you were going through .

14:07

It was terrible .

14:10

And how you know you get the results

14:12

. It's positive . Now

14:14

what ? What do you do now ?

14:16

Yeah , I mean , that was a whole . Luckily

14:18

, before I actually had my

14:20

surgery , like I said , I had done a ton

14:23

of research and so I actually

14:25

did know that . It's a

14:27

pretty common experience , unfortunately

14:29

, for people with endometriosis

14:32

to have surgery and to be told they

14:34

don't have endometriosis and then

14:36

only to find out later that they do . It's

14:38

just they weren't with a surgeon who could identify

14:41

it for whatever reason . So

14:43

you know , there was a part of me

14:45

that was like , okay , well

14:48

, if he didn't find it

14:50

, but I it's not anything else

14:52

, I've been to every other doctor , right , like

14:54

I'm pretty sure it's , it's this

14:57

, then I'm gonna have to , like find

14:59

someone else who will do this again

15:01

. But that's such a daunting thing

15:03

to think about after a major

15:06

surgery . So , you

15:08

know , for a long time after that

15:10

I kind of focused on just

15:14

simply recovering . Like I had

15:16

a couple months of medical leave

15:18

from work . I was working with

15:20

a health coach who I had met a couple months earlier

15:22

, taking

15:35

time to recover . I realized , like how deeply , deeply burnt out I had

15:37

gotten through all the white knuckling I had been doing and I decided that I

15:40

was not going to go back to work . I

15:42

quit my job . Actually , it's funny , like

15:44

two days before the 2020 pandemic

15:46

, like everything shut down and

15:49

I was like , oh , that's good timing

15:51

. Everything

15:58

shut down and I was like , oh , that's good timing . But in a way

16:00

, it was good timing because I ended up

16:02

taking like a full year to recover . It wasn't until

16:05

a year later , after my first surgery

16:07

, that I felt like myself again and

16:10

I had totally lost myself

16:12

in all of the pain and stress

16:14

and mental taxation

16:17

around this illness

16:19

and trying to deal with it . And over

16:22

the course of the year after my first surgery

16:24

, I really found myself again

16:27

.

16:30

I've podcasted with many people

16:32

now like , like yourself

16:34

, and that seems to be a theme

16:36

. It's . It's not uncommon where

16:38

it's exhausting and

16:41

not just exhausting

16:43

to be living with something that is maybe

16:45

out of remission or is in

16:47

flare , or just exhaustion

16:50

from that condition that we live with

16:52

, but the exhaustion of

16:54

fighting , fighting

16:56

for our own health and advocating for our health

16:59

and dealing with , as you

17:01

said , being gaslit not

17:03

being believed . There's just

17:05

so much stress

17:08

and pressure just on that

17:10

piece . And

17:13

so , yeah , I hear you , I

17:15

feel it . You know , quitting

17:17

your job , just focusing on yourself , I can imagine

17:20

was stressful in it in itself , like for

17:22

me . I'm , I'm . I

17:25

get an idea stuck in my head and then I just

17:27

need to . I act with urgency and

17:29

my my wife and I talked about this recently

17:31

and she's like slow down , tim , like I've

17:33

got too many things on the go and and

17:36

I just I need things to happen now . And

17:38

so how was that just ? I know

17:40

you're active in your career , you've

17:43

got your master's , you've building this career

17:45

to shutting it down . How

17:47

did , how did you know ?

17:48

It was so hard . Yeah , I'm . I

17:51

live in Washington DC . I'm like super type

17:53

A . I had

17:55

gone to grad school and was

17:57

working full time while going to grad school

18:00

full time . Then I got this career

18:02

in the nonprofit sector for a great

18:04

national nonprofit organization and

18:06

I was , like you know , just kicking

18:08

butt . Yeah

18:11

, it was unbelievably

18:13

hard to just stop . I

18:17

had multiple phases

18:19

of panic of like , oh

18:21

my God , I am not contributing

18:24

to society , what is my value

18:26

? What am I even doing with my

18:28

life ? Why , what ? Like just

18:31

so many moments . And then , and

18:33

then a while after that , I had kind

18:36

of a new sense of panic around . Ok

18:39

, well , now what ? Like

18:41

, now that I feel recovered

18:43

, what am I going ? What do I

18:45

want to do ? Like I can't just

18:47

sit around . Or I don't want to just sit around

18:49

forever . So like I

18:52

don't . Do I go back to school ? Do I become

18:54

an architect ? Like I would be googling

18:56

, you know career

18:58

jobs , like just tell me what career I should

19:00

have at you know , two in the morning

19:02

, with like absolute panic in my heart

19:04

. And

19:07

so , yeah , it was really hard . The only way

19:09

I was able to do

19:11

it truly is because

19:14

of my health coach , which is

19:16

why I became a health coach , because she

19:18

really helped

19:20

me and sometimes , like

19:23

, had to wrangle me , to

19:26

keep slowing

19:28

down , to keep remembering

19:30

that what I was doing

19:33

was actually work , was

19:35

hard work , and

19:37

was better for me and was better

19:40

for everyone around me and everyone in

19:42

my life and would end up being better for

19:46

society . For what I chose to do next

19:48

, and I mean it was hard

19:50

, we had a whole chose

19:55

to do next , and I mean it was hard , we had a whole . There's a particular conversation

19:57

we had earlier on where she had asked me , like what success meant to me . And

20:00

you know , to me I was like , oh well , it means you

20:02

know , progressing in my career , getting promoted

20:05

, you know , being recognized

20:07

as good at all these things . And she

20:10

asked me is it

20:12

possible that success

20:14

could mean being a good

20:16

partner , being a

20:18

good friend , being a good daughter , sister

20:20

? And I just immediately

20:23

was

20:25

like , no , those things are so important

20:27

to me , they're

20:29

essentially important to me , but that's not

20:31

success , that's not what that means . And

20:33

it was such a hard stop

20:35

and it took honestly a very

20:37

long time to , um

20:40

, I don't know , like

20:42

break down that mentality and

20:44

then and then build it up to what it

20:46

is now , um , which is much

20:48

healthier for me .

20:52

That resonates on every single level

20:54

. You know , just building a career

20:56

, rising up

20:58

in organizations

21:00

, and then all of a sudden it's gone

21:03

. And after

21:05

my last major surgery

21:07

my doctor

21:09

said take time . You know

21:11

, take 8 , 12 , 16

21:13

weeks to heal . And it was

21:15

week four . And I remember exactly where I was

21:17

sitting in my house . It was on our patio and

21:20

it hurt so much to sit up , but

21:22

I had my laptop on my lap and I was looking at my

21:24

labs because I felt I need .

21:26

I need this and I didn't need

21:28

it .

21:30

You know we're fortunate enough to have a

21:32

bit of savings . You know , my job

21:34

ended so there was no health insurance or

21:36

nothing , and so it was like I

21:38

just felt that panic and

21:42

then we threw it out to our

21:44

friends and our neighbors and just hey

21:46

, you know like we just need some support and not

21:48

monetary support . But you know we're going

21:50

through a lot and by just

21:52

throwing it out there . The

21:55

amount of support was incredible .

21:56

That's awesome .

21:57

Complete strangers reaching out . And so when

22:00

you say that , just taking a moment

22:02

for yourself , we live

22:04

in this world that moves

22:06

way too fast for us . I

22:09

don't think we're designed to move this fast

22:11

. We're inundated with social media . We're

22:14

inundated with all this stimuli

22:16

that says we need to do more

22:18

and we need to strive for that

22:20

promotion , because if we don't , we're not succeeding

22:22

. But I love that . What

22:24

does success look like to you ? And

22:27

redefining that for yourself . And

22:32

so here you are . Now . Right

22:34

, you left that job , you had a health coach , you

22:36

wrestled with all of this

22:38

. You still have your diagnosis

22:40

right Endometriosis doesn't go away

22:42

. You didn't go for a second surgery

22:45

.

22:45

I did actually .

22:46

Or did you go for a second surgery ?

22:48

Later on .

22:48

You did Okay , and

22:50

so you went for that second surgery . And

22:52

here you are now , and how

22:54

are you doing now ?

22:55

Yeah , yeah . So it's funny that cause

22:57

my second surgery was actually only in

22:59

October , so it was pretty recently

23:01

, actually , and I'm

23:04

I'm doing so much better , not

23:06

just because of the surgery , because

23:08

of the fact that I took the time

23:11

that I needed to

23:13

like fully and truly

23:15

recover from not just the physical

23:18

trauma of surgery the first time

23:20

, but the

23:22

like mental and emotional trauma , as

23:24

you were saying , of fighting

23:26

and hiding

23:28

. And

23:31

then I

23:33

figured out that I

23:35

wanted to be that

23:38

person that my health coach had been

23:40

for me for somebody

23:43

else , like if there were

23:45

somebody that I could help figure out

23:47

that you

23:49

know , here's what success

23:52

looks like to me , or here's

23:54

what I want from life , or I'm really

23:56

struggling to balance this illness

23:58

with my job , or you know , whatever

24:01

it is . I wanted to be that

24:03

person for somebody else , and

24:05

so I took training to become a coach

24:07

. I took training

24:09

to become a coach and

24:11

I started this business . And

24:14

it's funny because every now and again

24:16

my type A

24:18

self will try to poke

24:20

its head out and be like you know , you got

24:22

to do more Hustle culture . This

24:24

is your business , you're an entrepreneur

24:26

, you should be working 20 hours a day

24:29

, blah , blah , blah . And I have to sort of like go

24:31

back to my , my roots

24:34

now , of like

24:37

, whoa there . That's

24:39

not what success is to me . What

24:41

success is to me is

24:45

taking care

24:47

of myself , listening

24:49

to my body . So if

24:51

it's , you know , a Wednesday morning

24:54

and I'm supposed to have a call and I really

24:56

need a nap , then I

24:58

, I listen to that and I honor

25:00

that . Um , which is very

25:02

, very different than what I used to do . Um

25:05

, and it's building

25:08

this work and helping others

25:10

while taking care of myself

25:12

, while also

25:15

being a good partner , a good sister

25:17

, friend , etc . That

25:19

is what success looks like to me . It's like

25:22

that integrated version of myself

25:24

, and I

25:26

think part of the reason that I

25:28

feel so good now and I was

25:30

even able to undertake

25:33

a second surgery was because I

25:35

had done all that work to have

25:37

that sort of foundation

25:40

.

25:41

That just highlights why

25:44

coaches exist , like yourself

25:46

, and some

25:48

are blessed to have great

25:50

friends who can ask those

25:53

prodding questions , those big questions , those

25:55

existential questions to get us

25:57

thinking . And there's

25:59

so much power in having a coach just to

26:01

understand what's

26:03

important . And you know that

26:06

simple question if somebody's listening to this and

26:08

is really struggling , it's sitting

26:10

down and just even defining what does success look ?

26:12

like to you .

26:13

I wrote a piece

26:15

on self-advocacy recently and

26:18

it starts with just writing

26:20

down what matters most to you . What

26:23

are your values ? Because that is going to help

26:25

you inform the

26:27

direction of your self-advocacy journey . Absolutely the direction of

26:30

your self-advocacy journey . Absolutely , if you

26:32

value curiosity or being heard , but

26:35

maybe you don't . And so that's

26:37

also going to inform how

26:40

you're going to show up in your advocacy

26:42

journey like yourself advocating for years

26:44

, undergoing gaslighting , finding

26:48

a doctor to believe you , to just go

26:50

and undergo surgery to not believe you

26:52

and then get proven wrong . Um , I'm

26:55

curious , did you send that doctor a follow-up email and say I

26:58

wanted to so much .

27:00

No , I never did . I probably should . It's

27:03

funny . The second doctor I went to um for

27:05

my second surgery uh , is

27:07

also in there in my area and he was

27:09

like , why did you go to him

27:11

first ? I was like I don't know

27:13

. So

27:15

I've had a lot of laughs about it now , but

27:18

not yeah .

27:19

Yeah , that's

27:21

, that's what we can do , right ? We just look back and go

27:23

well , I can't change that , I can't change

27:26

what happened . But how does that now inform

27:28

your advocacy journey and the work that you're doing ?

27:30

You know and sorry , you know what I

27:32

was just thinking . I don't think I've really ever thought of it

27:34

this way before . You just were talking , but

27:36

in a way I

27:38

think that if I had had my second

27:41

surgeon first , I would have

27:43

been much more likely to just sort

27:45

of like go back to my life the way it

27:47

had been , rather

27:49

than like really needing to take that

27:52

time to figure out everything , and so

27:54

in a way , I guess I'm grateful

27:56

for the way that that happened yeah

28:01

, in a strange way when we look

28:03

back and go okay , this journey , the

28:06

journey you've been on and I've been on and

28:08

others have been on , we

28:10

look to where we are

28:11

now ? And would we be

28:13

here ? We don't

28:15

know , but

28:19

we can start questioning like would I be here , would you have started your

28:21

coaching business and your podcast ? Or

28:23

would you have gone back to work in the

28:25

nonprofit and just started working up

28:27

that ladder of position ? And

28:31

for me , I wouldn't be here

28:34

. If I wouldn't be

28:36

here , um , at a visible

28:38

condition , unless things happen

28:40

the way they did . Um

28:42

, I just it was . I always had

28:44

an idea of like , hey , I want to do some advocacy work in

28:46

this space , but never would I no

28:48

idea about starting a nonprofit andprofit and all that

28:51

stuff , and so , um yeah

28:53

, grateful is

28:55

the word that you used , and you know the conditions

28:58

we live with .

28:58

And then yeah , it's weird , right but , and it takes

29:00

a it's weird , right .

29:02

This is like . This is the hand we've been dealt , and , um

29:05

, you know , the phrase that keeps coming up in my mind

29:07

is like so now , okay

29:09

, right , I can't change that . I live

29:11

with a few different things you

29:13

can't change . You live with endometriosis

29:15

, so what now ? How

29:17

are we going to approach and that's a fun

29:20

and scary question to wrestle- with yeah

29:22

, fun and scary are the two good words

29:24

for it . Yeah

29:28

, I want to go back to endometriosis

29:30

and I realized that we hadn't even defined it for

29:32

our audience , and maybe

29:35

we'll just go all the way back to

29:37

defining it . And

29:39

then I just have some curiosity

29:42

questions around the stigma that

29:44

surrounds endometriosis .

29:45

Yeah , totally so okay , endometriosis

29:48

is a disease where cells

29:51

that are very similar to , but

29:53

are distinctly different from , the cells

29:56

that line the uterus grow

29:58

outside of the uterus . It's

30:00

a funny like I'm always so particular

30:02

to say it exactly that way , because

30:04

even doctors

30:06

often get that wrong , get

30:09

that wrong . So

30:11

, for example , there's a lot of times where

30:13

you'll hear from a doctor like oh

30:23

, you could get a hysterectomy . Like no , actually , because the definition

30:25

of endometriosis is that they grow outside of the uterus . So

30:27

, anyways , that's why I'm very particular about

30:29

it . It is one of

30:31

the 20 most painful conditions

30:34

in the world . It

30:38

affects one in 10

30:40

, although the statistic

30:42

is changing , I think to one in nine

30:44

women around the world

30:47

, and it's

30:49

interesting to a couple of things

30:51

. So many people think about it

30:53

as like a women's issue because it has

30:55

to do with the pelvis and

30:57

the pelvic area . They've actually found

30:59

surgeons and doctors and researchers have

31:02

found endometriosis on every

31:04

major organ of the body , so that includes the

31:06

lungs , the heart , the brain , the liver

31:08

. It is not

31:11

just around the uterus and

31:13

on the fallopian tubes , and , although

31:15

it's very , very rare , endometriosis

31:18

has also been found in people

31:21

, biologically born male

31:23

. So those are two important

31:26

factors for me . To just make sure

31:28

I say out loud because to your second

31:30

question , a lot of the stigma

31:32

is around oh , but

31:34

that's your pelvis , that's your uterus . Don't talk

31:36

about that . Nobody wants to

31:38

hear about how

31:41

people think it's just a painful period . It's

31:44

not . It's a full body

31:46

, full time , extremely

31:50

painful and sometimes debilitating

31:52

disease .

31:55

I'm just sitting with that for a moment . You know , when you say

31:57

, um , One

31:59

of the top 20 most painful

32:01

conditions out there , that

32:05

is something that I hope our listeners

32:08

just take to heart . When somebody says

32:10

, hey , they live with endometriosis

32:12

or they know someone who does , it's

32:15

not just , as you said , a painful

32:17

period or

32:19

it's a women's issue .

32:22

It is , it's serious , it's serious , yeah , it's serious

32:24

.

32:27

And yet there's still so much stigma

32:29

, especially when it comes to women's

32:31

health . I heard

32:34

something last week that just

32:36

or the week before recording

32:38

this I can't get into

32:40

the details of it , but it was

32:42

around women's health and a

32:45

company had put out some content and

32:48

a decent

32:50

number of people unsubscribed , of

32:52

a specific gender , and

32:55

that just blew my mind . And so

32:57

, when it comes to health , and

33:00

if it's not just , oh , that's a women's

33:02

health problem , I don't need to know about it . It's like , yes

33:04

, we all need to know about it

33:06

because that's how we're going to end the stigma . And

33:09

so when you hear that , what comes to

33:11

mind ?

33:12

Your anecdote you mean about the company

33:14

? Yeah , it's not surprising at all . It's so frustrating

33:17

though I mean , okay , think about it . One

33:19

in 10 , or more likely one

33:21

in nine women around the world

33:24

deal with this disease and still the

33:27

only way to get a

33:29

diagnosis is to be cut

33:31

open and have surgery . And

33:33

still , often

33:35

including me when you do

33:38

have surgery , you're still told

33:40

you don't have it . It's

33:42

like , think about if you know . One in 10

33:44

, I think that's . I might get the stat

33:46

wrong , but I think it's similar to the number

33:48

of women

33:51

or women in America who have

33:53

diabetes . You know it's

33:55

a very common disease and

33:58

the only way to get diagnosis

34:00

through surgery . What

34:02

Like ? That's insane

34:04

. That's ridiculous

34:06

.

34:08

That is . I've tried

34:10

to wrap my head around it and , yeah

34:14

, if a doctor said , yeah , the only way we could diagnose

34:16

you is we're going to have to cut you open . You

34:19

know , that's a lot . To even to process is okay . Well

34:21

, do I just live with this ? Or I

34:24

can't imagine the thought of

34:26

going through some people's mind of , well , like

34:28

, why , like , don't they believe me ? You

34:30

know , what can we do here ? And

34:32

having to undergo

34:35

a surgery . That's not just

34:37

. You know , you're in and out , you have to take time off , work out

34:39

. You have to take time off work . And

34:42

this is where you

34:44

know I was reading a stat . You know one

34:50

in four people in the US and now Canada I think Canada was one in five and

34:52

I think they're changing that stat to now one in four live with a disability

34:55

. And I don't like to say , you know , not

34:57

every condition is a disability

34:59

. It's a disease or illness or whatnot

35:01

. And so when we look around , if

35:04

you know more than four people , you

35:06

know someone who's living with something

35:08

and maybe they've chosen not to say Because

35:11

of that fear , because of the shame

35:13

that they maybe have

35:15

undergone . Maybe that's the

35:17

shame they feel themselves , or maybe the shame

35:19

somebody else has imposed on

35:22

them , or maybe the shame somebody else has

35:24

imposed on them . It kind of breaks

35:26

my heart but also gives me hope

35:30

, like people like yourself who are just like no , we're going to talk

35:32

about this and just like my seven-year-old

35:35

daughter said hey , we're going to talk about this and we need

35:37

to talk about this . We got to talk about it , but

35:39

there's other ways . I think we can end

35:41

the stigma . I'm curious what comes to mind

35:43

?

35:43

Yeah , I was thinking about this a little

35:45

bit and I think kind

35:48

of two things come to my

35:50

head , and

35:54

one is more micro and

35:56

one is more macro . The

35:58

stigma is for us

36:02

as people to

36:05

start talking about chronic

36:08

illness invisible conditions , as

36:11

a systemic societal issue

36:13

. So we

36:16

as a society , in

36:18

my opinion , are not

36:20

good at knowing how to

36:23

deal with people who don't get

36:25

better . We

36:27

expect people to get sick and then

36:29

to get better , or we

36:31

kind of understand cancer

36:33

, something like that , that doesn't necessarily

36:36

get better , but we really do not know

36:38

how to handle . Like what do

36:40

you mean ? You know , five years later you're still

36:42

dealing with the same thing . We just

36:45

are so uncomfortable with that . I think

36:47

we were talking on my podcast about how there's

36:49

that like oh , are you better yet ? Kind

36:52

of question that

36:54

someone with a chronic illness gets all

36:56

the time and how sort

36:58

of frustrating and tiring

37:00

it is to kind of explain like well

37:03

, no , not really

37:05

it's much more complex than

37:07

that . So I think starting

37:10

to talk about this as like how do we

37:12

in our society

37:14

deal better with knowing

37:18

and understanding that there are

37:20

conditions that do not go away and

37:22

someone might feel better

37:24

or worse , might be in remission or in a flare

37:26

at some time , but that's not the

37:28

same as , like the black and white , you're sick , then

37:30

you're better , because

37:33

I think that would help us kind of take

37:35

the burden off of individuals

37:38

to do so much

37:40

explaining and

37:42

advocating and

37:44

labor honestly , mental

37:47

and emotional labor , to

37:50

explain this to everyone in their

37:52

lives . So that's one thing , and

37:55

then I think the second thing is more actually

37:57

on the individual level , which you

37:59

kind of mentioned earlier . I

38:02

think it's like about self-awareness

38:04

. You

38:07

know a lot of people who come and work

38:09

with me . Come and work with me because

38:12

they're dealing with this chronic

38:14

illness and they're really struggling

38:16

to balance taking care of themselves

38:19

with the other parts of their lives

38:21

. So you know their jobs or their family

38:23

or friendships , whatever that might look like . And

38:27

I think a huge part of ending

38:29

stigma is to really think

38:32

about where am

38:34

I out of balance ? Where

38:36

in my life do I

38:38

put on a mask and pretend

38:41

that ? Put

38:47

on a mask and pretend that I don't feel as much pain as I actually do ? Or

38:49

who am I afraid to tell the truth to ? Who do I worry that

38:51

if they know this is what I'm dealing

38:53

with , they'll treat me differently . And

38:56

I think

38:58

with that self-awareness comes

39:01

the next question , which is

39:04

what would balance look

39:06

like , what would integration look like

39:08

, and how would it look different than what I'm doing

39:10

right now ? And that's what I

39:13

try to work with people on . So

39:15

I think it's yeah , those two things one on

39:17

a bigger societal level and one is

39:21

more of an individual question , like how do I really

39:23

want to live my life and how do I integrate

39:25

this disease or this illness

39:27

into my life , rather than siloing it

39:29

away ?

39:42

Truth makes me uncomfortable . In a way . It makes me uncomfortable

39:44

because you look at

39:46

friends and family and for years

39:48

I hid it . I

39:58

hid the fact that I have Crohn's and that I would not participate in things , to the

40:00

point where people just stopped inviting me to things , being , at the time , a new dad . We

40:02

talked before we hit record about sleepless nights

40:04

. You've got a new puppy and not

40:07

comparing puppy and kids , but it's

40:09

a lot of sleep in the first while

40:11

.

40:19

And living with a disease that has taken so much , you just put on that mask and

40:21

hide it . It's funny because I think it seems easier in the moment

40:23

and then maybe it often is easier

40:25

in the moment , but it

40:28

makes it so much harder in the long

40:30

run .

40:31

Yeah , yeah , my , my wife has

40:33

often called me on that and

40:36

saying , hey , why did you

40:38

not tell them the truth , like why did you not tell

40:40

them that you're , you know you can't participate

40:42

, or you know you

40:49

can't drink , or you can't eat this or whatever ? It is because of this condition

40:51

and honestly , it's sometimes it's just easier , um easier

40:53

to say no um not tonight or I can't go out tonight . I

40:56

live with , uh , I'm , I'm anemic

40:58

and can't get my iron levels up , and

41:01

usually by Thursdays I just need

41:03

to sleep . And trying

41:06

to explain that to someone who doesn't understand

41:08

, who has never understood that

41:11

feeling of no

41:13

energy , it's like , oh , I have no energy because

41:15

I only slept four hours last night . It's like , oh , I

41:17

slept 12 and I still have no energy

41:19

. It's a lot of effort

41:21

, but , like you said , katie , of

41:25

your energy . It's a lot of effort , but like you said , katie it's you have to look inside , of going

41:27

well , what matters ? You know , if you're struggling with this balance

41:29

or struggling with this , how

41:33

do you show up or how do you live with this condition

41:35

. It's like

41:37

what matters most , yeah .

41:38

And I think it's also . You know it's

41:41

not like you have to one day just decide

41:44

okay , you know the

41:46

mask is off and everyone can know every single

41:48

thing . Like it's a process and I get

41:50

it . I went through it myself . I used

41:53

to hide a lot more than

41:55

I do now . You

41:57

know it's a lot of work to figure out

41:59

. Okay , like who might it

42:01

be comfortable to tell a little

42:03

bit more about today , and

42:06

then what's tomorrow ? And then

42:08

you know it's a process to get to the point

42:10

where then , at the end , you're

42:13

living like a fully

42:15

true and integrated life , where you're

42:17

not afraid to share what's going on with you

42:19

and you're also not afraid to

42:21

stand up for what that

42:23

means you need .

42:26

Yeah , understanding finding out what you need

42:28

and practicing

42:30

and so I've shared with people myself is

42:32

practice it . Maybe it's with

42:35

a partner or one of your close friends

42:37

, or maybe it's in

42:39

the mirror because you haven't shared . It's

42:42

just practicing and understand . You know , maybe

42:44

it's I don't know what I need , but I just feel I

42:46

need to share this or , hey , I

42:49

need this . And

42:52

for those who are on the other end , who are listening

42:54

to this , how do you want them to respond ?

42:56

You know it's funny because I was

42:58

just going to , I was thinking like it's a self-reinforcing

43:00

cycle in a good way , so

43:02

meaning that , in

43:04

my experience at least , every time

43:06

I have shared a little more

43:09

whether it's with someone I work

43:11

with or someone I don't know at all

43:13

or I love , a deep

43:16

, dear loved one the

43:18

response has always

43:21

, 100% of the time

43:23

, been kind and

43:27

helpful to me , so that

43:30

makes it easier to do it again

43:32

the next day , right ? Like I think the

43:34

more to your point you practice , the

43:37

more you kind of realize like , oh

43:39

, the world is actually not going to fall

43:41

apart if I need

43:45

to just be who I am right now , and

43:48

so I guess you know to

43:50

people listening who would be on the receiving

43:52

end of that . Like you

43:54

know , think about what it might

43:56

be like to share that kind of information

43:58

with someone and how vulnerable that person

44:00

is being , and I think inevitably

44:03

your response will be lovely

44:05

.

44:06

Yeah , most people don't

44:09

have ill intent and people

44:11

might say something without thinking

44:14

, and it's then

44:16

your choice . If

44:18

you've received something that's like , oh , that's

44:20

questionable , it's our

44:22

choice on how we're going to react . Is

44:24

it just a gentle correction , is it

44:26

? You know ? All right , gloves are

44:28

off . We're going to go at it now and I'm just going to tell you what

44:30

I think . I don't always advocate for

44:33

that response , but it's an opportunity to educate

44:35

and even say , hey , that's not helpful . I

44:37

was recording with somebody recently

44:39

and he said if

44:42

somebody he shares some with

44:45

somebody , what he lives with , and the response starts

44:47

with at least he knows

44:49

it's not going to be .

44:50

That's such a good point but he uses

44:52

.

44:52

he uses that as an opportunity to then

44:55

, um , gently correct

44:57

and say you know , that's not helpful to me because

44:59

my normal and this is

45:01

my words now is my normal is different than your normal

45:04

and different to somebody else's normal . So

45:06

I live with Crohn's disease and it's very

45:08

different than other people I know who live with Crohn's

45:10

disease . They you

45:13

can't compare . You know , endometriosis

45:15

might be different for you than

45:18

somebody else and we can't compare and I think that's

45:20

a problem we have with in

45:22

our circles and in our society is like oh

45:24

, you hear it . It's like oh , you have arthritis , oh

45:26

, your joint must be sore . Well

45:30

, that's not the case for everyone , so it's

45:32

that approach of curiosity . But for

45:36

someone who is listening and who

45:39

needs and

45:42

just feels that they need some

45:44

support or need to get something off their

45:46

mind , or maybe considering a coach

45:48

, I'm curious if there's a couple of common

45:50

themes that you've seen within your coaching

45:53

clients that might help somebody else who's

45:55

going through that

45:57

journey .

45:57

Yeah , absolutely . I mean

46:00

, I think , which

46:03

is the whole point of your podcast . Communicating is

46:06

really difficult . I was talking to someone

46:08

a couple of months ago who

46:10

said you know ? I said , obviously

46:13

we can't get rid of your condition , but

46:16

if we could wave a magic wand , what

46:19

would you want ? And she said all

46:22

I really want is to be able to

46:24

explain to people whom

46:26

I love how difficult

46:28

this is and for them to understand , and

46:32

to me that's so powerful

46:34

. She wasn't saying I don't want to be

46:36

in pain . She wasn't saying

46:38

I don't want to have to miss work . You

46:40

know , I just want people

46:42

to understand me and

46:45

to hear me , and

46:48

that's something that can be really

46:50

challenging .

46:52

That's powerful and challenging , as you said

46:54

, because I was writing

46:56

a note is how do we help people understand

46:59

? And so it's almost

47:01

that cycle right Of . Well

47:03

, I don't want to share because I don't know if they

47:05

trust , or I don't know if I can , but I

47:07

want them to understand , but

47:10

they'll never understand if I don't share . And

47:12

so you get into that cycle

47:14

and I think that ties right

47:16

back into our earlier

47:18

part of the conversation is understand

47:21

what's valuable to you and important .

47:22

Yeah , and you know sort

47:25

of exactly to that point . I think it's

47:27

one thing that I think is sometimes

47:29

difficult but also really powerful to

47:32

continue to remember as someone

47:34

who lives with chronic illness , is that

47:37

it's not a static thing , right

47:39

Like it's a constantly evolving process

47:42

. So , you know , one

47:45

month I might be feeling

47:47

like I have the energy to do

47:49

that gentle correction that you were just

47:51

talking about the person you spoke to

47:54

does , and

47:56

you know , the next month I might be in

47:58

a pain flare and I might decide actually

48:00

it's more valuable to me right now to

48:02

protect my energy and so

48:04

I'm not going to do that . It's not

48:06

like a black and white like when

48:08

someone says X , I say Y . It's

48:11

a really continuous

48:14

process to check

48:16

in with yourself and like notice

48:19

what you need and listen to yourself

48:21

and then decide like how

48:23

much am I going to let

48:27

people in or how

48:29

much am I willing to share right now

48:31

, today ? You

48:34

know it's something that's constantly

48:37

evolving and iterating .

48:39

The question that one of the questions I'd like to

48:41

wrap up with is around self-advocacy

48:44

, and I feel like we've talked a lot about

48:46

it . I think this , your

48:48

expertise as a coach , has really come out

48:50

in really starting to , starting

48:52

at that personal space , like you said , that micro

48:54

and that macro piece . It's

49:04

not a linear process , it's not just black and white . It's not like I live with

49:06

a chronic condition and I'm now going to tell everyone um , or I might

49:08

not tell anyone it's . There's

49:11

so many nuances to it .

49:12

Yeah , it's funny because , uh

49:15

, you know , as you

49:17

probably have have learned starting

49:19

a business . You start a business

49:21

to do the work that you are passionate about

49:23

, right , which for me is

49:26

coaching . Then there's all the

49:28

other aspects like I'm somehow now an accountant

49:30

and marketing , and the marketing

49:33

piece I really struggle with because

49:35

everybody is always like , well , what's

49:38

your takeaway ? What can people

49:40

take away when they work with you

49:42

? What problem are you solving ? And

49:46

I really react

49:49

badly to that because of what you

49:51

just said . It's different for everybody

49:53

, like everybody living with a chronic

49:56

illness . Yes , there are common

49:58

themes . Absolutely , we all deal with a lot

50:00

of similar experience , but

50:02

my version of balance and integration

50:04

and and discover what that is for ourselves , and

50:26

then it's my

50:29

passion to help people figure out

50:31

what that looks like and then how to do it .

50:33

That's where it starts . We

50:35

could go to social media and read

50:38

any business book you

50:41

and I share this . Maybe love this

50:43

.

50:43

Uh , maybe love hate

50:48

, hate , hate , hate

50:50

, hate .

50:52

It's uh , I love it . You

50:55

know , uh , yeah , I

50:57

look at outsource my own . It's um it

50:59

just . You know you're talking about sucking

51:02

energy out of me and it does , and but

51:04

yeah , it's , it's . I just want to do the work

51:06

. I

51:10

don't want to be , I don't want to be , I don't want

51:12

to be all those other things . But you know , katie , as we wrap up , you know

51:14

I want to end just on a note of encouragement

51:16

for our listeners , somebody who maybe

51:19

living with something that is invisible

51:21

, a chronic illness or disease or disability . What

51:24

do you want to end off with ? What's , what do you want to share

51:26

with them ?

51:27

I think I just want to share that I

51:30

don't know , like in my experience and in the

51:33

experience of people I work with and

51:35

also every single person I've talked to

51:37

in my own podcast , the

51:39

more and

52:06

the more you fight for you , the more others fight for you . And it's so scary , it can feel so vulnerable

52:08

and , no , our society is not set up for it . But there's a way , there's a path to really think about what

52:10

that looks like for you and and I think you'll be pleasantly surprised , um , by the reactions you get back

52:12

for the most part , I love it .

52:14

That's a good place to to wrap up , uh , this

52:16

, this great conversation . I learned a lot . Um

52:18

, I went into the conversation knowing a little

52:20

bit about endometriosis not

52:22

a lot and you've helped open

52:25

my eyes and my world to

52:27

this painful condition

52:29

that so many people live with , and

52:32

so thanks , thank you for that . Where

52:34

can people ?

52:34

reach you Well . Thank you for listening and thank you for letting

52:36

me share . I really appreciate it . Yeah

52:39

, so people can listen to my podcast

52:41

. It's called my Chronic Illness and Me . It's on

52:43

every major streaming site and I have an amazing

52:46

episode with Tim . That's a great

52:48

starting point . They

52:50

can also find me on my website , it's reviveandthrivecoachcom

52:54

, or email me at katie

52:56

at reviveandthrivecoachcom

52:58

, or on Instagram , which is

53:00

reviveandthrivecoaching .

53:02

I love it . And for those who are listening

53:05

, if you're like , oh , I missed that , don't worry

53:07

, head to the episode

53:09

page . We'll have all the links there as well

53:12

. On the Invisible Condition website and

53:15

for those who are listening , what

53:17

helps us end the stigma

53:19

of invisible conditions is by

53:22

sharing out these episodes

53:24

. If you like what you heard , if

53:26

you have more questions , share

53:28

it with your friends , your family , your colleagues

53:30

, strangers , or drop it to someone . I don't know what

53:32

you got to do , but this episode

53:34

here , as well as any episode on Katie's

53:37

show as well , that's what we're going to end this with . We're

53:39

going to keep talking about our conditions

53:43

because we want to create a place

53:45

where we don't feel

53:47

like we need to hide . If we don't want to hide

53:49

, we feel trusted and seen . So

53:52

the way you can help support

53:54

Invisible Condition is to subscribe

53:56

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53:59

the means , consider donating

54:01

. The donations go directly

54:03

to support the publication

54:05

, the editing

54:07

, everything to get episodes

54:09

like this off the ground . So for

54:12

those who have supported , thank you so much

54:14

and I hope everyone

54:16

has a great day . Thanks again , katie , for joining

54:18

us .