0:02

This episode contains conversations

0:04

around depression and anxiety. If

0:06

you struggle with anxiety and or depression,

0:09

please take care as you listen and

0:11

reach out to your healthcare provider for

0:13

help. If you're in crisis, you

0:15

can contact the National Suicide Hotline

0:17

at nine eight eight. Hi

0:23

everyone, and welcome back for season three

0:25

of Untold Stories Life with a Severe

0:27

Autoimmune Condition. This podcast

0:30

is a production of Ruby Studio in partnership

0:32

with Argenics, and I'm your host, Martin

0:35

Hackett. I'm an Associate professor

0:37

and Director of Public Health Programs at Hofstra

0:39

University, and as a researcher,

0:41

educator, and public health professional, I've

0:44

spent my career studying the complex

0:46

realities of health care disparities and

0:48

advocating to do something about them.

0:51

On this podcast, I speak with

0:54

real people living with severe

0:56

autoimmune conditions like may asthenia

0:58

gravis or MG and chronic

1:00

inflammatory demielinating polyneuropathy

1:03

otherwise known as CIDP to

1:05

help expand the conversation around

1:07

these shared experiences. Every

1:10

person with a severe autoimmune

1:12

condition has a unique diagnosis,

1:15

journey, and stories of struggles,

1:17

resilience and hope. We're

1:19

here to shine a light on as many

1:21

of these amazing stories as we can,

1:24

stressing the power of community care

1:26

and self advocacy as we embrace

1:29

this very emotional journey together.

1:32

Throughout this series, we've heard incredibly

1:35

moving stories from people living with

1:37

autoimmune conditions. While

1:40

each is deeply personal, there's

1:42

a common thread among so many of them,

1:44

intense feelings of isolation

1:47

and loneliness. For those living

1:49

with Mayasthenia gravis. Navigating

1:52

life while managing the debilitating

1:54

symptoms can amplify these

1:56

feelings tenfold. This is

1:58

particularly true when it seems

2:00

like even your closest friends and family

2:03

struggle to understand what you're going

2:05

through, especially considering so

2:07

many people have never even heard of MG. Unfortunately,

2:11

friendships and other relationships can

2:13

quickly fade, making the journey

2:15

unimaginably lonely. Our

2:18

guest Today, Morgan was in her mid

2:20

twenties when an MG diagnosis

2:22

turned her life upside down. In the

2:24

weeks and months that followed, Morgan found

2:26

herself spiraling into a dark, scary

2:28

place, feeling completely lost

2:31

and battling moments of intense self

2:33

doubt. But then something

2:35

shifted. Morgan decided

2:38

to take back control of her life

2:41

by Tapping into her creativity and

2:43

her passion for writing and sharing

2:45

stories, Morgan created something

2:48

truly spectacular that not only

2:50

transformed her life, but

2:52

also the lives of so many others living

2:54

with MG and other chronic conditions

3:03

before your MG diagnosis, Can you tell

3:05

me what was your life like? What were some

3:07

of the first signs or symptoms

3:09

that led you to question your help.

3:12

I was twenty five

3:15

years old and i had just moved

3:17

out of my mom's place, so like, I

3:19

bought myself a townhouse. I'm

3:22

like in the pinnacle of independence, and I'm

3:24

like, oh, the world is my oyster. I have all these plans,

3:27

and one of the things that I really wanted to do

3:29

was to run a marathon. Like

3:31

all the rest of the girlies. You know,

3:33

we set this New Year's resolution to join the

3:36

gym and get in the best shape.

3:37

Of our lives.

3:39

It was on your vision board.

3:40

Yes, I was doing the training,

3:42

and I noticed, like during

3:45

some of the workouts, I just felt like really

3:47

really fatigued, and I'm like, oh, maybe I'm

3:49

just pushing too hard today.

3:51

Maybe I didn't eat enough.

3:53

You know, I'm making excuses for some of the things

3:55

that I'm starting to feel early

3:57

on. So that started in like January of just

3:59

me feeling more higher than normal, not

4:02

able to push as much as I know I had

4:04

been able to do even the week before,

4:06

you know, like oh, why can't I lift this, you

4:09

know, ten pounds weight the same way, and

4:11

just feeling different but not really been

4:13

able to put it together. I was even like

4:15

on the treadmill, and I stopped the

4:17

treadmill because I started to just feel off, and

4:20

as I was getting off of the tradmill, I actually

4:22

collapsed. But again I was just

4:24

like, I clearly just overdated today,

4:26

Let's go home. So it had been

4:28

you know, like weeks of just that type of

4:30

behavior and me just really

4:32

trying to rationalize some of the things that were

4:35

occurring. And then also again I'm

4:37

training for this marathon, so I had signed up

4:39

for these weekly five k races.

4:42

And as I'm doing the races, they

4:44

time you, of course, and each week my time's

4:47

getting slower. And

4:49

also during that time, like

4:51

my breathing is labored, and

4:54

I'm like, okay, well what's happening now.

4:56

So my new excuse was, oh, i'm running outside,

5:00

Maybe it's my allergies, maybe it's

5:02

something going on. Respiratory, and I remember

5:04

specifically till the five K races were on Friday

5:06

evenings and Saturday morning,

5:09

I woke up and it literally looked like I

5:11

had had a stroke, like I couldn't

5:13

move the right side of my face.

5:15

It just looked droopy.

5:16

It was a movie when I was talking, and I

5:18

was terrified, like what

5:21

in the world is going on? So

5:24

of course I start with, oh, allergies,

5:26

So I go see a allergist, and of course they're

5:28

like, there, you're fine.

5:33

After the allergists, I go see a E and T.

5:35

They're like, uh, you're fine. During

5:37

this time, also, I start experiencing

5:40

double vision because I'm like, okay, maybe

5:42

it's something going on with my eyes, So I make a I

5:45

doctor appointment. Even when they

5:47

were doing the exam individually,

5:49

each of my eyes perfect vision,

5:52

it was only when both eyes were open

5:54

that I experienced the double vision. And

5:56

at this point I'm like so defeated

5:59

because I'm like, what is going on? Even the

6:01

eye doctor saying that my

6:03

vision is perfect, but clearly it's not because it's

6:05

blurry right now and I've

6:07

never worn glasses, so I'm just

6:09

like, what's happening.

6:13

It's these memorable moments filled

6:15

with confusion and uncertainty that

6:18

can hit really hard for those approaching

6:20

an MG diagnosis. From

6:22

Morgan, they marked the beginning of

6:24

a seemingly uncontrollable journey

6:27

down a path of loneliness and

6:29

isolation. We're counting

6:31

the search for answers. Morgan

6:33

brings up some of the common symptoms across

6:36

many MG patients.

6:39

I think they noticed that I was just very, very discouraged

6:42

in that office. So the authomologist

6:44

came back in and reran a couple tests, and she said,

6:47

can you follow my finger again? And she

6:49

just stopped, and she said it

6:51

as calmly as she could, but

6:54

with a sense of urgency. She says, your

6:56

left eye isn't moving, gosh.

6:59

And she's like, we need to schedule

7:01

you for a scan with the neurologist

7:04

asap.

7:05

And so now I'm alarmed.

7:07

And now I'm like, okay, well what's

7:10

going on with my eyes? Like, you know, you

7:12

hear all these things, and I'm like neurologists,

7:14

and I'm like scans and this is something in my brain,

7:17

you know. The whirlwind starts

7:20

and I was able to get an appointment. Literally

7:23

the next morning. I woke up that morning.

7:25

Of course, it's torrential rain pouring

7:28

down. I'm experiencing horrible

7:30

double vision trying to drive

7:33

to the testing site. So it

7:35

was to the point that I had to make like a makeshift

7:37

patch. So I had my sunglasses

7:40

and my car and I took a napkin

7:42

and wrapped it over to like make this

7:45

patch so that I could drive.

7:46

To this scan and we

7:49

had the skins.

7:50

She referred me to a neurologist and

7:52

a neurologist while we're talking, and I'm telling them

7:54

everything that's happening to me, and he

7:56

says, oh, keep talking, and he goes

7:59

into his little mini fridge and he pulls out some

8:01

ice cubes and puts them

8:03

in a sandwich bag and he puts

8:05

it over my eye.

8:06

As we're talking.

8:06

He said, yeah, continue telling me everything that's going on. And

8:09

he says take it down. And literally

8:11

my eyes were open and bright. Wow.

8:14

And he says, I think I know what's

8:16

going on with you. We have to do some subsequent

8:19

tests, but I think you have MG

8:21

or my astenia. And I was like,

8:24

oh, gosh, what's that. He

8:26

tried to explain it, of course, like it's

8:28

gunk. At this point, to me just

8:31

like yeah,

8:33

after like getting that

8:35

official diagnosis, it was like bittersweet

8:38

because on the one hand, this is now

8:41

May when I actually have my diagnosed, So we're talking

8:43

about five months relatively of

8:45

things slowly starting to build, and now

8:47

they're at this heightened place of just like every

8:49

day is just a bad day for me, and

8:52

finally having a name or

8:54

a diagnosis, so it's like, I'm not crazy.

8:56

All the things that came back normal, yeah, that's fine,

8:58

but now there's something that's that's really going

9:00

on. So it was a sense of like, okay,

9:03

finally, but also that

9:06

that numbness of this

9:09

is something that I'm really just going to have to live

9:11

with for the rest of my life, because that's what he said.

9:13

He said, there's no cure. We're going to give you

9:15

medication, you're gonna have to take it for the rest of your life, and

9:17

he pretty much sent me on my way.

9:21

There's no doubt that her MG diagnosis

9:24

struck Morgan hard, especially

9:26

in her twenties when she was just coming into

9:28

her own Imagine the whirlwind

9:31

of emotions upon learning your illness

9:33

is permanent and without a cure.

9:36

She was facing a challenging road ahead.

9:40

What were your biggest anxieties now at that time?

9:44

For me, it was thinking about losing

9:46

the independence that I just got,

9:49

Like I just am I going to lose my house?

9:51

Am I going to lose my job? Am I not going to be able

9:53

to drive? All the things that I

9:56

had pretty much worked for up until that point,

9:58

And it was like it was literally hanging on

10:01

by a thread. And then also

10:03

when I think about, oh, I

10:06

had a plan for my life and now

10:08

are any of these things even possible

10:11

for me at this point? Like will I

10:14

ever get married? Well I ever have children? Will I

10:16

ever you know, run this marathon?

10:20

I don't forget. The answer is still no up

10:22

today, but maybe

10:24

one day soon, that's right.

10:27

What were some of the initial questions then after the

10:29

diagnosis that you had for your doctor

10:32

and what were some of the things that

10:34

you wanted to know about.

10:35

I'm still just trying to wrap

10:37

my mind around it. My mom and

10:40

as any mom knows, she's in mommy

10:42

mode. So she's on the internet looking

10:45

for any type of MG specialist

10:47

within like one hundred mile radius, and

10:49

I was on like all of their wait lists

10:52

trying to get appointment.

10:54

Thankfully, due to her du diligence.

10:56

Within like a couple of weeks, I found the specialist

10:58

who just specially not just prologists, but I actually

11:01

have a my estenia specialist who

11:03

specializes in MG cases. And

11:05

I went to see him, and from that first appointment,

11:08

it was just like he never rushes you.

11:10

He always talks and answers all of the questions,

11:13

and he was more optimistic,

11:16

you know, like he gave me all the answers

11:18

and he was like, listen, I know that this is

11:21

this is a big deal, but

11:23

we're going to get through it together. And so like

11:26

some of the questions that you know, I

11:28

took to that first appointment, where

11:30

like how did I get this? Like

11:33

is it genetic? Is it something that I did?

11:37

What are my treatment options?

11:39

How bad can it really get versus

11:42

best case scenario. I'm

11:44

still trying to understand some

11:46

I'm like, well, long term, like will

11:48

I ever be able to have children? And will

11:50

I be able to do some of the things that I felt

11:52

like I want to do in my

11:55

life.

11:56

What were some of the emotions you were experiencing

11:59

during this process? I

12:01

like to parken it to like the stages of grief. You

12:03

know, I was in heavy denial

12:06

for several months after that, because

12:09

I was just like, I'm

12:11

not going to allow this diagnosis to change

12:13

my life. And so I was very very

12:15

stubborn and very very hard headed, and I kept

12:17

trying to maintain the lifestyle

12:19

that I had before, So that was going

12:22

out all the time and you

12:24

know, traveling and just pushing my

12:26

body, and each time

12:28

my body fought back, Like for

12:31

five or six months I was in the hospital

12:33

because I was being hard headed and I wasn't

12:35

listening to my body because I was just so determined

12:38

because I didn't want to accept that

12:40

this was happening to me, so it was hard

12:43

for me to grasp. And then I just

12:45

remember, after one hospital

12:47

stayed just feeling so hopeless

12:49

and breaking down and just being in such despair,

12:52

like fine, you when I give

12:54

up. And at that point I decided

12:57

to be a recluse and I completely

13:00

shut myself out from the word. So all I did

13:02

every day I woke up, I went to

13:04

work, I came home, and

13:07

like I said, I bought a three level town home and

13:09

my bedroom was on the third level. I couldn't even

13:11

make it up my stairs to go to my room. So

13:13

every day when I came in, I just had to lay

13:16

in like my sitting area for hours, take

13:18

a nap, and I would just sometimes stay there

13:20

till nine o'clock at night and then finally

13:23

make my way up the stairs. But like I just

13:25

reclused because I had given up, because

13:27

I just felt like, what's the point if I try

13:30

to do anything.

13:31

My body's fighting against me. This

13:33

is my new reality. My new reality is

13:36

nothingness, and all I have is work right

13:38

now. I was someone who, like

13:41

I set a goal, I met it. I was

13:43

a very type a personality, and

13:45

so not having control over,

13:48

you know, my body, it was a

13:50

really tough pill to swallow, and

13:52

I just felt like basically

13:55

a failure. And then on

13:57

top of that, you know, my family

14:00

and my friends, you know, they're calling and

14:02

they're texting, and they're trying

14:04

to check on me. They're having behind

14:07

the scenes conversations without me

14:11

talking about well, who's going to move in

14:13

with Morgan and be there to keep an eye on

14:15

her and take, you know, take

14:17

her to where she needs to be. And so then

14:19

on top of everything else, I felt the guilt

14:22

of being a burden to those

14:24

that I cared about.

14:26

It was frustrating to me because I didn't

14:28

want to talk about it.

14:29

I didn't want to talk about it because I didn't know how to talk

14:31

about it. It was still just very

14:34

very new. I grew up an only

14:36

child, so being alone wasn't really

14:38

a bad.

14:39

Thing for me.

14:39

But being alone in

14:42

that mental state, you

14:44

just stew in your misery because

14:47

that's all I have to do, right, I can't really do

14:49

anything. My body won't allow me to do anything.

14:52

I didn't want to allow people in to like visit

14:54

me or come do anything because I was feeling sorry

14:56

for myself, and so it

14:59

was a bit lonely. Yeah,

15:01

And I say all the time, there's a difference between being

15:04

lonely and being

15:06

alone. Like I was fine being

15:08

alone, but being lonely

15:11

in your journey because again, this is happening

15:13

to me, And as much as my family

15:15

wanted to help or wanted to be

15:17

there for me, they could not even begin

15:20

to understand what was going

15:22

on with me, and so I felt very much

15:24

alone in just this journey. I

15:26

also remember at that time, when I

15:28

googled MG, it

15:30

was saying that it was mostly for older people.

15:33

So now I feel like this giant weirdo

15:36

because I'm like, where are the people my age that

15:38

are actually going through this.

15:40

I visited like a couple of support groups.

15:42

Because I'm like, Okay, well maybe I'll find someone

15:45

who can relate to me. And again

15:47

it was older people and they're

15:50

talking about they're fatigued, but they don't know if they're

15:52

fatigued from the MG or just because they're

15:54

just in their seventies or eighties,

15:57

and I'm just like.

15:58

That's not experience.

16:00

Yeah, it was still just very much alone,

16:03

just feeling like nobody gets in, nobody understands

16:05

me, and this is what I have

16:07

to look forward to for the rest of my life

16:10

unless something changes.

16:14

We'll be back with more untold stories

16:17

after a quick break. As

16:23

a global immunology company committed

16:25

to improving the lives of people living with severe

16:27

autoimmune conditions, Urgenics

16:29

is dedicated to serving the Mayasthenia Gravis

16:32

or MG community through MG

16:34

United. MG United

16:36

was created by Ergenics to support those

16:38

living with MG and their caregivers

16:41

by providing the latest information, resources

16:44

and support to address the unique

16:46

ways MG can affect their lives.

16:49

Wherever you are in your Mayasthenia

16:51

Gravis journey, MG United

16:53

wants to help make today a better day.

16:56

For more information about MG United,

16:58

visit MG dash United and

17:10

now back to untold stories. And

17:15

So, with those isolating feelings

17:18

you talked about with your family, how

17:20

did the other people in your life understand

17:23

what you were going through?

17:24

It took a lot of conversations.

17:28

Some people understood, some people did

17:30

not. As far as like dating, I

17:32

would just cancel the dates and stuff and didn't really

17:34

provide explanation because again, I'm

17:37

struggling to understand it for myself, let alone

17:39

explain it to someone else. I've

17:41

told people and they'll like, they

17:43

would make jokes, and I guess, you know, some people

17:45

deal with difficult situations like making a

17:48

joke, like the guy

17:50

said I was telling him about my eyepatch and

17:52

he said, it's okay, I don't

17:54

mind going out with pirate Pete.

17:57

Needless to say, we did not continue to date,

18:00

and I'm like wow. As far as

18:03

my family, they

18:05

tried to understand, But for

18:08

us, it was more about me

18:11

getting them to understand my boundaries

18:13

more so than the illness, because

18:16

I felt like they were very much trying

18:18

to I knew they were trying to be helpful, but again

18:21

it came across as me feeling like I was a burden

18:23

to them or that they were trying

18:25

to

18:28

too early take away my independence,

18:30

Like let me come to you and tell

18:32

you that I need the help, don't

18:34

just hover and take it from me because

18:37

we're not there yet, and trust

18:39

me to be able to tell

18:41

you when I need that intervention. But

18:44

that also took time because I

18:46

had to resolve within myself

18:49

that hey, it's okay for me to ask

18:51

for that help. I'm worthy of the help. I'm

18:53

still a person and I'm worthy and

18:55

i'm value. But that took time, Like I didn't

18:58

get to that point until probably a year

19:00

post diagnosis.

19:02

You mentioned the stages of grief that

19:04

you were going through, denial and despair and

19:06

like you said, feeling like you're a burden to

19:08

your family. Is there a particular

19:11

moment that stands out as sort of

19:13

like this is the bottom?

19:15

Yes, I don't know how many

19:18

of the listeners have ever been on like

19:20

a steroid or something like that, and like some

19:22

of the side effects of that, of course, are

19:25

like the weight game.

19:26

And so again, I was.

19:28

A girlie who was in the gym trying to make

19:30

her body the best it could possibly

19:33

be and to now have this body

19:35

that I couldn't control, I didn't recognize,

19:38

and trying to shop for this body

19:40

that I really didn't like, and

19:43

trying to find something I felt like made me

19:45

look flattering. Now I was in

19:47

some store in the dressing room trying to try and close.

19:50

I have moonface, I'm

19:52

wearing an eyepatch, I'm

19:55

you know, just all the things, and trying to try and

19:57

close, and I literally just us

20:00

down crying. I'm in the dressing room crying

20:02

and.

20:05

No no one. I was like, does someone ask me? Was okay?

20:07

No one asked me? Was okay? That

20:10

was a different time? Crying in the car?

20:11

Someone came asked me, was if

20:14

that.

20:14

Was the other time? Yeah, that was the other time.

20:16

I was having a full meltdown, and

20:20

I was just like I don't

20:22

like anything about myself

20:24

or my life.

20:25

I felt just so broken.

20:28

I felt like unworthy, and

20:31

I was just like why, Like what is the

20:33

point? Like what am I doing here? Like

20:35

what is going on?

20:40

These difficult emotions Morgan was

20:43

grappling with are all too common

20:45

among those living with MG. In

20:47

fact, studies have shown that anxiety

20:50

and depression affect the mental

20:52

health of patience with MG. In

20:54

Morgan's case, the emotional weight

20:57

of her condition only underlined

20:59

her growth feelings of isolation.

21:03

I felt like I was just a shell of

21:06

the person that I used to be, and that really

21:09

really hurt me. So that

21:11

was kind of like the moment like that, aham, I'm like, Okay,

21:13

you don't really like yourself. That

21:16

sucks because you

21:18

used to be a super cool person. Which

21:20

is really why I started doing well.

21:23

When I decided I was gonna start doing

21:25

like self love or I started

21:27

doing what I call like my self Love Challenge

21:29

and self for like a month, I challenged

21:31

myself just to like do all the things that I felt

21:34

were difficult and it was really simple. It

21:36

was difficult for me to look at myself

21:38

in the mirror and tell myself that I love myself.

21:41

It was difficult for me to take pictures of

21:43

myself, like for years. I

21:45

don't have any pictures for about

21:48

three years of my life because

21:50

I hated the way that I looked.

21:52

I wouldn't take pictures with other people. I

21:55

stood in the back.

21:56

I shrunk myself, yes, because

21:58

I just really wasn't in that place to

22:01

show up. So I was like, I'm going to take a picture

22:03

of myself and I'm going to write something nice about

22:05

myself. I started doing affirmations and I did that

22:07

for a month, and that first week

22:09

it was I first, they felt super stupid.

22:11

I was like, this is never going to work. On

22:14

never going to work. But I, you know, I

22:16

stuck it out and the first week it

22:18

was definitely awkward.

22:19

By the end of the month, I.

22:21

Did notice that I felt a little better,

22:23

just a smidgen better, and I was like, Okay,

22:26

maybe there's something more to this. And from

22:29

there it's kind of just been like me

22:31

constantly building myself and I

22:33

found it that comes in handy because

22:36

with a chronic illn it, there's so many ups and downs,

22:38

like you could be doing great and then at

22:40

the drop of a hat you are plummeting,

22:43

and so it's like you need something

22:46

there to kind of buffer that so that you

22:48

don't stay low.

22:49

Yeah, so you need like this sort of base, protective

22:52

layer almost to kind of keep you going.

22:54

And when you were taking those self

22:57

care steps, I know that your

22:59

blog and your face fantastic YouTube

23:01

channel was will be It's

23:03

been an incredible outlook for you right in your MG

23:06

journey as an aside. I really enjoyed

23:08

the way that you've played with the format over

23:10

the years, and I especially loved

23:12

the demoing of the acrylic painting that

23:15

I'd never seen that before. That was really very,

23:18

very cool to be able to see that.

23:20

How have you.

23:21

Experienced how your work inspires

23:24

people living with MG?

23:26

On my year anniversary, I

23:28

wrote a letter to

23:30

my MG's and I don't know what

23:33

prompted me, but I decided to post

23:35

it on social media, and

23:38

I got a lot of responses. So half

23:40

of the responses were I had no idea

23:43

you were even sick, because again, I

23:45

was so embarrassed and so ashamed

23:48

of what my life had been reduced

23:50

to that I was hiding.

23:53

So people just, I guess, thought

23:55

that I was just.

23:56

Laying long in. Yeah,

23:58

she's feeling some kind of way now.

24:00

Yeah, No one knew that I was

24:02

going through this like the hardest thing

24:04

that I faced this far in life. And

24:07

then you had other people who were like,

24:09

wow, I have something similar,

24:12

maybe not MG, but you know, another autoimmune

24:14

condition. And they were like, you were able to put

24:17

into words exactly how I was feeling

24:19

that I couldn't articulate. That was

24:21

kind of like a light bulb. Writing has always

24:24

been like a place of solace for me, and

24:26

I was like, what if I

24:28

can use this my pain

24:30

because I was in a lot of pain and

24:33

help other people. And

24:36

so I started blogging, and you

24:38

know, I slowly found my community, people

24:41

of other even if it wasn't MG, just people with

24:43

other autoimmune illnesses.

24:44

My age, but who could relate.

24:47

To some of the things, some of the worries, some of

24:49

the outlooks that we were all facing, and

24:52

just build this little, small, little community.

24:55

It's been great.

24:55

Every time I can just make a post

24:58

and someone says I feel this way,

25:00

or if they send me a message and they

25:02

ask questions to me, like I try to

25:05

respond to every single person because I know

25:07

what it feels like in those beginning stages

25:09

to feel so lost and so long

25:12

alone, like nobody

25:14

understands. And you know, you go to

25:16

Google and a whole bunch of horrible

25:18

things pop up. But here I am,

25:20

and I'm thankful that. You know, my journey

25:23

has been what it's been. I mean, it was bad at

25:25

one point, but once I stopped being

25:28

hard headed and started doing

25:30

the things that I needed to do for myself, it's

25:32

been a lot better, and so I

25:34

pride myself on being that police for

25:37

other people, where you know, I'm very candid

25:39

and I'm like, hey, this is what's happening.

25:41

But I'm also a place so of like, hey, let's be

25:43

a bit optimistic and let's tune

25:45

into the things that we can't control. We may not be

25:48

able to control our bodies, but we can definitely control

25:50

how we speak about ourselves, how we think about

25:52

ourselves, and showing up for ourselves

25:55

in the middle of this battle. That

25:57

definitely has changed, like my mental health. I

26:00

started doing, you know, different things and coming

26:02

out of my show a little bit more you talk about

26:05

the acrylic painting. I was looking for things

26:07

that I could do in the house because again I'm pretty

26:09

much going to work and coming home and

26:12

I was like, I have to do something. Let me

26:14

find So I started experimenting with

26:16

just different art forms of like

26:19

sculpturing and taking

26:21

pictures and I was making candles,

26:24

just all the different things to try to

26:26

say, Okay, what can I do that I

26:28

can still find joy and enjoyment

26:30

in this season of my life. And

26:33

that has been like transformative

26:36

for me, on top of just helping other people.

26:39

Does anything come to mind of

26:41

response to your blog that sort

26:44

of sticks out with you.

26:47

Yes, one of my most

26:49

popular blogs was

26:51

talking about

26:55

dos and don'ts with family members. Yes,

26:59

and one person it was like

27:01

coming around the holidays and she was

27:03

dreading visiting her family

27:06

members because of all the questions

27:08

and the lack of understanding. She

27:11

read my blog that I posted about that, and

27:13

then she DMed me and when we

27:15

talked like the full holiday season, and

27:18

like I was like, okay, well, I would suggest that maybe

27:20

preemptively, like set this boundary, like hey,

27:23

I'm not answering questions about this at

27:26

this time, and if you can't

27:28

respect that, then I wouldn't even bother to

27:30

come. But you know, you have to be

27:32

firm, and it's okay to be firm, you know.

27:35

When she wrote back and said that it was like the

27:37

best family gathering that

27:39

she had attendance since she had

27:41

been sick, like I was, like, I felt so good.

27:44

It really is amazing how being

27:46

able to use my pain and like help other people

27:49

has helped me heal in

27:51

other ways. Even though I

27:53

would not wish autoimmune illness on anybody,

27:56

but it gives me purpose, you know, Like,

27:58

Okay, well, LEAs this was for a reason. At least

28:00

I'm able to give back or help someone

28:03

not get to that super low

28:05

point that I've been in my journey

28:07

to permit that, Like, let's catch you before you hit

28:09

rock bottom. Maybe you dropped a little bit, but let's

28:11

get you before you get all the way down there.

28:13

Yes, yes, and you know and that you

28:15

will be there for them, you know, like

28:17

you said, with their questions or just to be

28:19

a friend.

28:20

Yeah, definitely.

28:22

It makes me think about when you talk about

28:24

how you experience this loneliness.

28:27

That loneliness is by definition individual,

28:30

but as a public health professor, I

28:32

teach about things like the Surgeon General

28:35

of the United States declaring loneliness

28:37

and isolation and epidemic and

28:39

a public health crisis. It

28:41

actually has significant health consequences

28:44

like increased risk of stroke and dementia

28:46

for everybody. Yeah,

28:48

so it's a real thing, even though it can feel

28:50

very individual because that's

28:52

what it is, right, isolating, But this is something

28:55

that is true for people across the country.

28:58

How for you, then, building

29:00

this community and these social connections

29:04

changed your outlook on your MG journey.

29:07

It's one hundred percent help you

29:09

know your family and your friends, they care about

29:11

you. They want to be there

29:13

for you. But a chronic illness

29:15

is something that you just really just don't understand

29:18

unless you have one One of my best friends,

29:21

she was diagnosed with crones

29:23

like when we were eighteen, and

29:26

I really did I completely did not understand

29:28

it. It was only after I was diagnosed

29:30

that I had to come back to her and I was like, I really didn't understand.

29:33

I'm sorry that I was, you know, trying

29:35

to pressure you to come out or pressure

29:37

you to do different things because of lack of understanding.

29:40

Because it wasn't that I didn't understand, Okay,

29:42

you have this illness, and it's that I

29:45

understood the mechanics of it. I didn't

29:47

understand the weight, the emotional

29:49

weight of it. And

29:51

so, like I said, when I was going to those different

29:53

support groups and I didn't see anyone like

29:56

me that could relate to the

29:58

phase of life that I was in and been able

30:00

to even create that community or just

30:02

reach out to other people online

30:05

who were around the same age, who

30:07

were encountering or trying

30:09

to navigate some of the

30:11

situations that I was dealing with.

30:14

It changed the journey because it finally felt like,

30:17

wow, you understand

30:19

me. You get it, you really

30:21

get it. Sometimes you don't even have to

30:23

say anything. It's just about, hey, we're

30:25

in this together. We're here

30:28

together, we see

30:30

what's happening. We're here to uplift

30:32

each other. Or even if you know it's

30:34

just a time to vent, because you know, when

30:36

you've been to your family and friends, they're trying to fix it

30:38

for you. You've been to someone else

30:40

with a chronic illness, they know you're just trying

30:43

to get it off your chest and just

30:45

have a sounding board of a safe space

30:47

where you're not being judged for saying I'm

30:51

having a bad day and I hate my life today

30:53

and this is so hard and why me versus

30:55

so WHOA, Well, don't think that way, you

30:58

know, toxically positive, you know they're

31:00

trying to make it better.

31:01

It's not helping.

31:02

But that's something that once you're

31:04

in it, you understand that mindset

31:06

that that person is in, how they got there, and

31:09

you're just able to relate and just

31:11

build each other. So I think having that place

31:14

for me made me feel

31:17

a bit more understood, a bit more heard,

31:19

a bit more validated in some of the things that

31:21

I was feeling, and safe

31:24

to journey and on the ups

31:27

and down, safe to have good days and safe

31:29

to have bad days because I've lost several

31:31

friends who really didn't understand what

31:34

was going on, and I'm okay with that now.

31:36

They didn't understand, like you were just fine yesterday,

31:38

so why can't you come out today?

31:40

They don't understand, like literally any

31:43

second I can have a flare up or a crisis.

31:46

How I have to schedule out my plans, like if

31:48

I do something this week, I'm not doing

31:50

something next week because I want to give my body

31:52

that full time to recover and

31:54

recoup. And you pressuring

31:57

me makes me beat myself

31:59

up. It makes me feel like I'm

32:01

disappointing you, but really I'm

32:04

just trying to take care of myself. Having

32:06

to explain that to other people is also very

32:08

exhausting. Versus you don't have to explain that

32:10

to someone else living with the chronic inn it's because they aught

32:12

already get it. I remember when I

32:14

learned about the term spoony. I was

32:16

like, oh, there's a name. It's a crew, Like,

32:18

oh my gosh, I'm so excited to be a part

32:21

of this.

32:21

Can tell me what it means.

32:23

I'm actually not familiar with, so

32:25

spoony is a term to explain

32:27

energy levels and fatigue

32:29

to people who didn't have chronic illnesses. So

32:32

it was just saying, every day you have a set number

32:34

of spoons, maybe six. You

32:36

take a shower, that's a spoon. You cook

32:38

a meal that's two spoons. You do

32:40

the laundry that's three spoons, like you've

32:42

already overspooned yourself. And

32:45

so from there they've created term

32:47

coined the term spoony as someone living

32:49

with the chronic illness. And I just think it's super cool,

32:52

especially when talking about like chronic fatigue

32:54

or trying to explain to someone how you don't have

32:57

this unlimited resources

33:00

to do things for them and it's not as

33:02

simple as og take a nap, because

33:04

you can take as many naps as you want to and

33:06

still be depleted with a

33:08

chronic illness. I just love the

33:10

community and they've been.

33:12

Very, very welcoming, wonderful,

33:14

and I'm sure it's probably helped your physical

33:16

health too, right because you have

33:19

that decreased level of those stressors

33:21

by having people who understand you and

33:23

her listening to you. What

33:25

would you say to the past

33:27

Morgan who was worried that she was

33:29

about to lose everything that she built.

33:32

I would say, Morgan,

33:35

take a breath, and don't

33:37

roll your eyes at me when I say that, but

33:41

trust the process, trust

33:43

the journey. Everything is unfolding

33:46

the way that it is meant to, and

33:49

there is going

33:52

to be so many unforeseen

33:56

great things to come.

33:58

And what would you say to any listener

34:01

out there who's been recently

34:03

diagnosed with MG.

34:05

Take the time that you need to process what's

34:07

happening to you. Don't

34:09

allow anyone else to dictate

34:12

your story, your truth. Do everything

34:14

in your own time. So just take it one step at

34:16

a time, one breath at a time, one

34:18

moment at a time, and when you're ready, take

34:21

a step forward in whatever direction feels right

34:23

for you. And if you fall, just lay

34:26

there for a few moments and then get back up.

34:30

And always have extra napkins.

34:33

Okay, yes, I always have extra napkins.

34:36

So, now that you are living with an

34:38

autoimmune condition and you are fully embracing

34:41

that identity looking forward,

34:43

what are your aspirations for the future.

34:46

I am a mommy now,

34:49

so I was able to have my little

34:51

girl and it's just the best

34:53

thing ever, fantastic,

34:55

Thank you, even like the pregnancy journey

34:58

of having an autoimmune and

35:00

like being considered high risk and all those

35:02

different things. Like that's emotionally

35:05

another journey in itself on top of just regular

35:08

pregnancy and emotions. Those

35:10

questions I had that day one, Will I ever

35:12

be a mom? Will I ever have those things? And

35:14

to just see like you, you're worried

35:16

about nothing, girl, Like it's fine. Like if I could

35:19

go back and write a letter to my younger, like it's

35:21

gonna be fine. It's gonna be rough, but it's gonna be

35:23

fine. It's gonna be worth it. Just

35:25

ride the wave and you're gonna get there. So

35:28

I look forward to being the best mom

35:30

I can, but also taking care

35:33

of myself so that I can be there for her

35:35

and doing the things. And also I mean maybe

35:37

one day we will run a marathon. We're

35:39

gonna start out with the humble five k maybe

35:43

from walk maybe Yeah.

35:46

For me, it's about living

35:48

intentionally and being that example

35:51

for her of like taking care of

35:53

yourself even when you have something else

35:55

going on, and how to like set priorities

35:57

and living like according to values and different

36:00

things. So those are some of the things

36:02

like as I look for my outlook. It's

36:04

being like a role

36:06

model or for her so that she can say,

36:09

hell, my mom had this major thing happened

36:11

to her, and she overcame it and

36:13

she did you know, X, Y and Z, and she

36:15

was still here for me and she was still

36:18

doing those things. I would love to

36:20

do more work with the spoonies

36:22

and in the community and just continue

36:24

to you know, spread light and uplift

36:28

others. Whenever I go to my specialist

36:30

and I follow up with him and he mentions the

36:32

R word, I don't

36:34

like to say it too loud because it makes

36:37

me nervous. Right, I'm like, is

36:40

it possible? Like is it over? But

36:42

also knowing it's never really over,

36:45

but just being able to say, hey, there's light

36:47

at the end of the tunnel. Stay the course, like, don't

36:49

give up on yourself. Your future

36:51

self, you know, five, ten, fifteen years

36:53

from now is going to be rooting for you. But even if

36:56

you are never one of those people who hear those

36:58

words, your life is still worth

37:00

living. And tagling on my blog is living

37:02

your illness life. So it's about defining

37:05

what that means for you and

37:07

doing that thing. And so that's really

37:10

what I see myself doing in the future is really

37:12

just spreading that awareness

37:14

that every single person living with the autoimmune

37:16

illness has a life worth

37:18

living, and it's up to you to define that, to

37:21

capture that, and to go guns blazing.

37:24

Oh Morgan, you have such a beautiful way

37:26

of being vulnerable but also

37:28

connecting with others and

37:31

offering inspiration and hope. So

37:33

thank you for doing what you do, and

37:36

I really appreciate this conversation. Thank

37:38

you, Thank you so much. It's been

37:40

a pleasure speaking with you, and

37:42

I hope you have a great one. What

37:49

an inspiring story learning

37:51

about her MG diagnosis as life

37:53

was seemingly just beginning, yet finding

37:55

the courage to transform her situation

37:58

truly highlights the strength that

38:00

a supportive community can provide. Thank

38:03

you for tuning in to the first episode of

38:05

season three of Untold Stories.

38:08

If you enjoyed the show, join us every other week

38:10

for new episodes, and don't forget to rate

38:12

and review wherever you listen to podcasts.

38:16

Untold Stories Life with a Severe Autoimmune

38:18

Condition is produced by Ruby Studio from

38:21

iHeartMedia in partnership with Argenis

38:23

and hosted by me Martin Hackett. Our

38:26

executive producer is Mali Sosha. Our

38:28

EP of post production is Matt Stillo, along

38:31

with supervising producer Sierra Kaiser

38:34

and post producer Sierra Spreen. This

38:36

episode was written by Diana Davis.