May 29, 2024 • 38 mins
Morgan found herself grappling with many feelings of loneliness and self-doubt on top of the overwhelming physical symptoms of her MG. Diagnosed in her mid-twenties, it felt like everything Morgan had built in her life might be taken away by the changes that came with her condition. Just when it seemed all hope was lost, Morgan found the strength to reconnect with herself and others. By tapping into her creativity and love for storytelling, she created an outlet that changed her life and the lives of many others facing MG. Morgan shares her story and how the experience lifted her up at a time when she felt truly alone.
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Speaker 1 (00:02):
This episode contains conversations around depression and anxiety. If you
struggle with anxiety and or depression, please take care as
you listen and reach out to your healthcare provider for help.
If you're in crisis, you can contact the National Suicide
Hotline at nine eight eight. Hi everyone, and welcome back
(00:24):
for season three of Untold Stories Life with a Severe
Autoimmune Condition. This podcast is a production of Ruby Studio
in partnership with Argenics, and I'm your host, Martin Hackett.
I'm an Associate professor and Director of Public Health Programs
at Hofstra University, and as a researcher, educator, and public
health professional, I've spent my career studying the complex realities
(00:47):
of health care disparities and advocating to do something about them.
On this podcast, I speak with real people living with
severe autoimmune conditions like may asthenia gravis or MG and
chronic inflammatory demielinating polyneuropathy otherwise known as CIDP to help
expand the conversation around these shared experiences. Every person with
(01:11):
a severe autoimmune condition has a unique diagnosis, journey, and
stories of struggles, resilience and hope. We're here to shine
a light on as many of these amazing stories as
we can, stressing the power of community care and self
advocacy as we embrace this very emotional journey together. Throughout
(01:33):
this series, we've heard incredibly moving stories from people living
with autoimmune conditions. While each is deeply personal, there's a
common thread among so many of them, intense feelings of
isolation and loneliness. For those living with Mayasthenia gravis. Navigating
life while managing the debilitating symptoms can amplify these feelings tenfold.
(01:58):
This is particularly true when it seems like even your
closest friends and family struggle to understand what you're going through,
especially considering so many people have never even heard of MG. Unfortunately,
friendships and other relationships can quickly fade, making the journey
unimaginably lonely. Our guest Today, Morgan was in her mid
(02:20):
twenties when an MG diagnosis turned her life upside down.
In the weeks and months that followed, Morgan found herself
spiraling into a dark, scary place, feeling completely lost and
battling moments of intense self doubt. But then something shifted.
Morgan decided to take back control of her life by
(02:41):
Tapping into her creativity and her passion for writing and
sharing stories, Morgan created something truly spectacular that not only
transformed her life, but also the lives of so many
others living with MG and other chronic conditions before your
(03:04):
MG diagnosis, Can you tell me what was your life like?
What were some of the first signs or symptoms that
led you to question your help.
Speaker 2 (03:12):
I was twenty five years old and i had just
moved out of my mom's place, so like, I bought
myself a townhouse. I'm like in the pinnacle of independence,
and I'm like, oh, the world is my oyster. I
have all these plans, and one of the things that
I really wanted to do was to run a marathon.
Like all the rest of the girlies. You know, we
(03:34):
set this New Year's resolution to join the gym and
get in the best shape.
Speaker 3 (03:37):
Of our lives.
Speaker 1 (03:39):
It was on your vision board.
Speaker 2 (03:40):
Yes, I was doing the training, and I noticed, like
during some of the workouts, I just felt like really
really fatigued, and I'm like, oh, maybe I'm just pushing
too hard today.
Speaker 3 (03:51):
Maybe I didn't eat enough.
Speaker 2 (03:53):
You know, I'm making excuses for some of the things
that I'm starting to feel early on. So that started
in like January of just me feeling more higher than normal,
not able to push as much as I know I
had been able to do even the week before, you know,
like oh, why can't I lift this, you know, ten
pounds weight the same way, and just feeling different but
(04:13):
not really been able to put it together. I was
even like on the treadmill, and I stopped the treadmill
because I started to just feel off, and as I
was getting off of the tradmill, I actually collapsed. But
again I was just like, I clearly just overdated today,
Let's go home. So it had been you know, like
weeks of just that type of behavior and me just
really trying to rationalize some of the things that were occurring.
(04:36):
And then also again I'm training for this marathon, so
I had signed up for these weekly five k races.
And as I'm doing the races, they time you, of course,
and each week my time's getting slower. And also during
that time, like my breathing is labored, and I'm like, okay,
well what's happening now. So my new excuse was, oh,
(04:58):
i'm running outside, Maybe it's my allergies, maybe it's something
going on. Respiratory, and I remember specifically till the five
K races were on Friday evenings and Saturday morning, I
woke up and it literally looked like I had had
a stroke, like I couldn't move the right side of
my face.
Speaker 3 (05:15):
It just looked droopy.
Speaker 2 (05:16):
It was a movie when I was talking, and I
was terrified, like what in the world is going on?
So of course I start with, oh, allergies, So I
go see a allergist, and of course they're like, there,
you're fine. After the allergists, I go see a E
and T. They're like, uh, you're fine. During this time, also,
(05:39):
I start experiencing double vision because I'm like, okay, maybe
it's something going on with my eyes, So I make
a I doctor appointment. Even when they were doing the
exam individually, each of my eyes perfect vision, it was
only when both eyes were open that I experienced the
double vision. And at this point I'm like so defeated
because I'm like, what is going on? Even the eye
(06:01):
doctor saying that my vision is perfect, but clearly it's
not because it's blurry right now and I've never worn glasses,
so I'm just like, what's happening.
Speaker 1 (06:13):
It's these memorable moments filled with confusion and uncertainty that
can hit really hard for those approaching an MG diagnosis.
From Morgan, they marked the beginning of a seemingly uncontrollable
journey down a path of loneliness and isolation. We're counting
the search for answers. Morgan brings up some of the
(06:34):
common symptoms across many MG patients.
Speaker 2 (06:39):
I think they noticed that I was just very, very
discouraged in that office. So the authomologist came back in
and reran a couple tests, and she said, can you
follow my finger again? And she just stopped, and she
said it as calmly as she could, but with a
sense of urgency. She says, your left eye isn't moving, gosh.
(06:59):
And she's like, we need to schedule you for a
scan with the neurologist asap.
Speaker 3 (07:05):
And so now I'm alarmed.
Speaker 2 (07:07):
And now I'm like, okay, well what's going on with
my eyes? Like, you know, you hear all these things,
and I'm like neurologists, and I'm like scans and this
is something in my brain, you know. The whirlwind starts
and I was able to get an appointment. Literally the
next morning. I woke up that morning. Of course, it's
torrential rain pouring down. I'm experiencing horrible double vision trying
(07:32):
to drive to the testing site. So it was to
the point that I had to make like a makeshift patch.
So I had my sunglasses and my car and I
took a napkin and wrapped it over to like make
this patch so that I could drive.
Speaker 3 (07:46):
To this scan and we had the skins.
Speaker 2 (07:50):
She referred me to a neurologist and a neurologist while
we're talking, and I'm telling them everything that's happening to me,
and he says, oh, keep talking, and he goes into
his little mini fridge and he pulls out some ice
cubes and puts them in a sandwich bag and he
puts it over my eye.
Speaker 3 (08:06):
As we're talking.
Speaker 2 (08:06):
He said, yeah, continue telling me everything that's going on. And
he says take it down. And literally my eyes were
open and bright. Wow. And he says, I think I
know what's going on with you. We have to do
some subsequent tests, but I think you have MG or
my astenia. And I was like, oh, gosh, what's that.
He tried to explain it, of course, like it's gunk.
(08:29):
At this point, to me just like yeah, after like
getting that official diagnosis, it was like bittersweet because on
the one hand, this is now May when I actually
have my diagnosed, So we're talking about five months relatively
of things slowly starting to build, and now they're at
this heightened place of just like every day is just
(08:50):
a bad day for me, and finally having a name
or a diagnosis, so it's like, I'm not crazy. All
the things that came back normal, yeah, that's fine, but
now there's something that's that's really going on. So it
was a sense of like, okay, finally, but also that
that numbness of this is something that I'm really just
going to have to live with for the rest of
(09:12):
my life, because that's what he said. He said, there's
no cure. We're going to give you medication, you're gonna
have to take it for the rest of your life,
and he pretty much sent me on my way.
Speaker 1 (09:21):
There's no doubt that her MG diagnosis struck Morgan hard,
especially in her twenties when she was just coming into
her own Imagine the whirlwind of emotions upon learning your
illness is permanent and without a cure. She was facing
a challenging road ahead. What were your biggest anxieties now
(09:42):
at that time?
Speaker 2 (09:44):
For me, it was thinking about losing the independence that
I just got, Like I just am I going to
lose my house? Am I going to lose my job?
Am I not going to be able to drive? All
the things that I had pretty much worked for up
until that point, And it was like it was literally
hanging on by a thread. And then also when I
(10:04):
think about, oh, I had a plan for my life
and now are any of these things even possible for
me at this point? Like will I ever get married?
Well I ever have children? Will I ever you know,
run this marathon?
Speaker 3 (10:20):
I don't forget. The answer is still no up today,
but maybe one day soon, that's right.
Speaker 1 (10:27):
What were some of the initial questions then after the
diagnosis that you had for your doctor and what were
some of the things that you wanted to know about.
Speaker 2 (10:35):
I'm still just trying to wrap my mind around it.
My mom and as any mom knows, she's in mommy mode.
So she's on the internet looking for any type of
MG specialist within like one hundred mile radius, and I
was on like all of their wait lists trying to
get appointment.
Speaker 3 (10:54):
Thankfully, due to her du diligence.
Speaker 2 (10:56):
Within like a couple of weeks, I found the specialist
who just specially not just prologists, but I actually have
a my estenia specialist who specializes in MG cases. And
I went to see him, and from that first appointment,
it was just like he never rushes you. He always
talks and answers all of the questions, and he was
more optimistic, you know, like he gave me all the
(11:17):
answers and he was like, listen, I know that this
is this is a big deal, but we're going to
get through it together. And so like some of the
questions that you know, I took to that first appointment,
where like how did I get this? Like is it genetic?
Is it something that I did? What are my treatment options?
(11:39):
How bad can it really get versus best case scenario.
I'm still trying to understand some I'm like, well, long term,
like will I ever be able to have children? And
will I be able to do some of the things
that I felt like I want to do in my life.
Speaker 1 (11:56):
What were some of the emotions you were experiencing during
this process? I like to parken it to like the
stages of grief. You know, I was in heavy denial
for several months after that, because I was just like,
I'm not going to allow this diagnosis to change my life.
And so I was very very stubborn and very very
hard headed, and I kept trying to maintain the lifestyle
(12:19):
that I had before, So that was going out all
the time and you know, traveling and just pushing my body,
and each time my body fought back, Like for five
or six months I was in the hospital because I
was being hard headed and I wasn't listening to my
body because I was just so determined because I didn't
want to accept that this was happening to me, so
(12:42):
it was hard for me to grasp. And then I
just remember, after one hospital stayed just feeling so hopeless
and breaking down and just being in such despair, like fine,
you when I give up. And at that point I
decided to be a recluse and I completely shut myself
out from the word. So all I did every day
(13:03):
I woke up, I went to work, I came home,
and like I said, I bought a three level town
home and my bedroom was on the third level. I
couldn't even make it up my stairs to go to
my room. So every day when I came in, I
just had to lay in like my sitting area for hours,
take a nap, and I would just sometimes stay there
till nine o'clock at night and then finally make my
(13:23):
way up the stairs. But like I just reclused because
I had given up, because I just felt like, what's
the point if I try to do anything.
Speaker 2 (13:31):
My body's fighting against me. This is my new reality.
My new reality is nothingness, and all I have is
work right now. I was someone who, like I set
a goal, I met it. I was a very type
a personality, and so not having control over, you know,
my body, it was a really tough pill to swallow,
(13:52):
and I just felt like basically a failure. And then
on top of that, you know, my family and my friends,
you know, they're calling and they're texting, and they're trying
to check on me. They're having behind the scenes conversations
without me talking about well, who's going to move in
(14:13):
with Morgan and be there to keep an eye on
her and take, you know, take her to where she
needs to be. And so then on top of everything else,
I felt the guilt of being a burden to those
that I cared about.
Speaker 3 (14:26):
It was frustrating to me because I didn't want to
talk about it.
Speaker 2 (14:29):
I didn't want to talk about it because I didn't
know how to talk about it. It was still just
very very new. I grew up an only child, so
being alone wasn't really a bad.
Speaker 3 (14:39):
Thing for me.
Speaker 2 (14:39):
But being alone in that mental state, you just stew
in your misery because that's all I have to do, right,
I can't really do anything. My body won't allow me
to do anything. I didn't want to allow people in
to like visit me or come do anything because I
was feeling sorry for myself, and so it was a
bit lonely. Yeah, And I say all the time, there's
(15:02):
a difference between being lonely and being alone. Like I
was fine being alone, but being lonely in your journey
because again, this is happening to me, And as much
as my family wanted to help or wanted to be
there for me, they could not even begin to understand
what was going on with me, and so I felt
(15:23):
very much alone in just this journey. I also remember
at that time, when I googled MG, it was saying
that it was mostly for older people. So now I
feel like this giant weirdo because I'm like, where are
the people my age that are actually going through this.
Speaker 3 (15:40):
I visited like a couple of support groups.
Speaker 2 (15:42):
Because I'm like, Okay, well maybe I'll find someone who
can relate to me. And again it was older people
and they're talking about they're fatigued, but they don't know
if they're fatigued from the MG or just because they're
just in their seventies or eighties, and I'm just like.
Speaker 1 (15:58):
That's not experience.
Speaker 2 (16:00):
Yeah, it was still just very much alone, just feeling
like nobody gets in, nobody understands me, and this is
what I have to look forward to for the rest
of my life unless something changes.
Speaker 1 (16:14):
We'll be back with more untold stories after a quick break.
As a global immunology company committed to improving the lives
of people living with severe autoimmune conditions, Urgenics is dedicated
to serving the Mayasthenia Gravis or MG community through MG United.
(16:35):
MG United was created by Ergenics to support those living
with MG and their caregivers by providing the latest information,
resources and support to address the unique ways MG can
affect their lives. Wherever you are in your Mayasthenia Gravis journey,
MG United wants to help make today a better day.
(16:56):
For more information about MG United, visit MG dash United
and now back to untold stories. And So, with those
(17:16):
isolating feelings you talked about with your family, how did
the other people in your life understand what you were
going through?
Speaker 2 (17:24):
It took a lot of conversations. Some people understood, some
people did not. As far as like dating, I would
just cancel the dates and stuff and didn't really provide
explanation because again, I'm struggling to understand it for myself,
let alone explain it to someone else. I've told people
and they'll like, they would make jokes, and I guess,
(17:45):
you know, some people deal with difficult situations like making
a joke, like the guy said I was telling him
about my eyepatch and he said, it's okay, I don't
mind going out with pirate Pete. Needless to say, we
did not continue to date, and I'm like wow. As
far as my family, they tried to understand, But for us,
(18:09):
it was more about me getting them to understand my
boundaries more so than the illness, because I felt like
they were very much trying to I knew they were
trying to be helpful, but again it came across as
me feeling like I was a burden to them or
that they were trying to too early take away my independence,
(18:30):
Like let me come to you and tell you that
I need the help, don't just hover and take it
from me because we're not there yet, and trust me
to be able to tell you when I need that intervention.
But that also took time because I had to resolve
within myself that hey, it's okay for me to ask
(18:51):
for that help. I'm worthy of the help. I'm still
a person and I'm worthy and i'm value. But that
took time, Like I didn't get to that point until
probably a year post diagnosis.
Speaker 1 (19:02):
You mentioned the stages of grief that you were going through,
denial and despair and like you said, feeling like you're
a burden to your family. Is there a particular moment
that stands out as sort of like this is the bottom?
Speaker 2 (19:15):
Yes, I don't know how many of the listeners have
ever been on like a steroid or something like that,
and like some of the side effects of that, of course,
are like the weight game.
Speaker 3 (19:26):
And so again, I was.
Speaker 2 (19:28):
A girlie who was in the gym trying to make
her body the best it could possibly be and to
now have this body that I couldn't control, I didn't recognize,
and trying to shop for this body that I really
didn't like, and trying to find something I felt like
made me look flattering. Now I was in some store
in the dressing room trying to try and close. I
(19:50):
have moonface, I'm wearing an eyepatch, I'm you know, just
all the things, and trying to try and close, and
I literally just us down crying. I'm in the dressing
room crying and.
Speaker 3 (20:05):
No no one. I was like, does someone ask me?
Was okay? No one asked me? Was okay? That was
a different time? Crying in the car?
Speaker 2 (20:11):
Someone came asked me, was if that.
Speaker 3 (20:14):
Was the other time? Yeah, that was the other time.
Speaker 2 (20:16):
I was having a full meltdown, and I was just
like I don't like anything about myself or my life.
Speaker 3 (20:25):
I felt just so broken.
Speaker 2 (20:28):
I felt like unworthy, and I was just like why,
Like what is the point? Like what am I doing here?
Like what is going on?
Speaker 1 (20:40):
These difficult emotions Morgan was grappling with are all too
common among those living with MG. In fact, studies have
shown that anxiety and depression affect the mental health of
patience with MG. In Morgan's case, the emotional weight of
her condition only underlined her growth feelings of isolation.
Speaker 2 (21:03):
I felt like I was just a shell of the
person that I used to be, and that really really
hurt me. So that was kind of like the moment
like that, aham, I'm like, Okay, you don't really like yourself.
That sucks because you used to be a super cool person.
Which is really why I started doing well. When I
decided I was gonna start doing like self love or
(21:26):
I started doing what I call like my self Love
Challenge and self for like a month, I challenged myself
just to like do all the things that I felt
were difficult and it was really simple. It was difficult
for me to look at myself in the mirror and
tell myself that I love myself. It was difficult for
me to take pictures of myself, like for years. I
don't have any pictures for about three years of my
(21:49):
life because I hated the way that I looked.
Speaker 3 (21:52):
I wouldn't take pictures with other people. I stood in
the back.
Speaker 2 (21:56):
I shrunk myself, yes, because I just really wasn't in
that place to show up. So I was like, I'm
going to take a picture of myself and I'm going
to write something nice about myself. I started doing affirmations
and I did that for a month, and that first
week it was I first, they felt super stupid. I
was like, this is never going to work. On never
going to work. But I, you know, I stuck it
(22:17):
out and the first week it was definitely awkward.
Speaker 3 (22:19):
By the end of the month, I.
Speaker 2 (22:21):
Did notice that I felt a little better, just a
smidgen better, and I was like, Okay, maybe there's something
more to this. And from there it's kind of just
been like me constantly building myself and I found it
that comes in handy because with a chronic illn it,
there's so many ups and downs, like you could be
doing great and then at the drop of a hat
(22:41):
you are plummeting, and so it's like you need something
there to kind of buffer that so that you don't
stay low.
Speaker 1 (22:49):
Yeah, so you need like this sort of base, protective
layer almost to kind of keep you going. And when
you were taking those self care steps, I know that
your blog and your face fantastic YouTube channel was will
be It's been an incredible outlook for you right in
your MG journey as an aside. I really enjoyed the
way that you've played with the format over the years,
(23:11):
and I especially loved the demoing of the acrylic painting
that I'd never seen that before. That was really very,
very cool to be able to see that.
Speaker 3 (23:20):
How have you.
Speaker 1 (23:21):
Experienced how your work inspires people living with MG?
Speaker 2 (23:26):
On my year anniversary, I wrote a letter to my
MG's and I don't know what prompted me, but I
decided to post it on social media, and I got
a lot of responses. So half of the responses were
I had no idea you were even sick, because again,
I was so embarrassed and so ashamed of what my
(23:49):
life had been reduced to that I was hiding. So
people just, I guess, thought that I was just.
Speaker 3 (23:56):
Laying long in. Yeah, she's feeling some kind of way now.
Speaker 2 (24:00):
Yeah, No one knew that I was going through this
like the hardest thing that I faced this far in life.
And then you had other people who were like, wow,
I have something similar, maybe not MG, but you know,
another autoimmune condition. And they were like, you were able
to put into words exactly how I was feeling that
I couldn't articulate. That was kind of like a light bulb.
(24:23):
Writing has always been like a place of solace for me,
and I was like, what if I can use this
my pain because I was in a lot of pain
and help other people. And so I started blogging, and
you know, I slowly found my community, people of other
even if it wasn't MG, just people with other autoimmune illnesses.
Speaker 3 (24:44):
My age, but who could relate.
Speaker 2 (24:47):
To some of the things, some of the worries, some
of the outlooks that we were all facing, and just
build this little, small, little community.
Speaker 3 (24:55):
It's been great.
Speaker 2 (24:55):
Every time I can just make a post and someone
says I feel this way, or if they send me
a message and they ask questions to me, like I
try to respond to every single person because I know
what it feels like in those beginning stages to feel
so lost and so long alone, like nobody understands. And
you know, you go to Google and a whole bunch
(25:18):
of horrible things pop up. But here I am, and
I'm thankful that. You know, my journey has been what
it's been. I mean, it was bad at one point,
but once I stopped being hard headed and started doing
the things that I needed to do for myself, it's
been a lot better, and so I pride myself on
being that police for other people, where you know, I'm
(25:38):
very candid and I'm like, hey, this is what's happening.
But I'm also a place so of like, hey, let's
be a bit optimistic and let's tune into the things
that we can't control. We may not be able to
control our bodies, but we can definitely control how we
speak about ourselves, how we think about ourselves, and showing
up for ourselves in the middle of this battle. That
definitely has changed, like my mental health. I started doing,
(26:01):
you know, different things and coming out of my show
a little bit more you talk about the acrylic painting.
I was looking for things that I could do in
the house because again I'm pretty much going to work
and coming home and I was like, I have to
do something. Let me find So I started experimenting with
just different art forms of like sculpturing and taking pictures
(26:22):
and I was making candles, just all the different things
to try to say, Okay, what can I do that
I can still find joy and enjoyment in this season
of my life. And that has been like transformative for me,
on top of just helping other people.
Speaker 1 (26:39):
Does anything come to mind of response to your blog
that sort of sticks out with you.
Speaker 2 (26:47):
Yes, one of my most popular blogs was talking about
dos and don'ts with family members. Yes, and one person
it was like coming around the holidays and she was
dreading visiting her family members because of all the questions
(27:08):
and the lack of understanding. She read my blog that
I posted about that, and then she DMed me and
when we talked like the full holiday season, and like
I was like, okay, well, I would suggest that maybe preemptively,
like set this boundary, like hey, I'm not answering questions
about this at this time, and if you can't respect that,
(27:29):
then I wouldn't even bother to come. But you know,
you have to be firm, and it's okay to be firm,
you know. When she wrote back and said that it
was like the best family gathering that she had attendance
since she had been sick, like I was, like, I
felt so good. It really is amazing how being able
to use my pain and like help other people has
(27:49):
helped me heal in other ways. Even though I would
not wish autoimmune illness on anybody, but it gives me purpose,
you know, Like, Okay, well, LEAs this was for a reason.
At least I'm able to give back or help someone
not get to that super low point that I've been
in my journey to permit that, Like, let's catch you
before you hit rock bottom. Maybe you dropped a little bit,
(28:11):
but let's get you before you get all the way
down there.
Speaker 1 (28:13):
Yes, yes, and you know and that you will be
there for them, you know, like you said, with their
questions or just to be a friend.
Speaker 3 (28:20):
Yeah, definitely.
Speaker 1 (28:22):
It makes me think about when you talk about how
you experience this loneliness. That loneliness is by definition individual,
but as a public health professor, I teach about things
like the Surgeon General of the United States declaring loneliness
and isolation and epidemic and a public health crisis. It
actually has significant health consequences like increased risk of stroke
(28:45):
and dementia for everybody. Yeah, so it's a real thing,
even though it can feel very individual because that's what
it is, right, isolating, But this is something that is
true for people across the country. How for you, then,
building this community and these social connections changed your outlook
on your MG journey.
Speaker 2 (29:07):
It's one hundred percent help you know your family and
your friends, they care about you. They want to be
there for you. But a chronic illness is something that
you just really just don't understand unless you have one
One of my best friends, she was diagnosed with crones
like when we were eighteen, and I really did I
completely did not understand it. It was only after I
(29:29):
was diagnosed that I had to come back to her
and I was like, I really didn't understand. I'm sorry
that I was, you know, trying to pressure you to
come out or pressure you to do different things because
of lack of understanding. Because it wasn't that I didn't understand, Okay,
you have this illness, and it's that I understood the
mechanics of it. I didn't understand the weight, the emotional
weight of it. And so, like I said, when I
(29:52):
was going to those different support groups and I didn't
see anyone like me that could relate to the phase
of life that I was in and been able to
even create that community or just reach out to other
people online who were around the same age, who were
encountering or trying to navigate some of the situations that
I was dealing with. It changed the journey because it
(30:15):
finally felt like, wow, you understand me. You get it,
you really get it. Sometimes you don't even have to
say anything. It's just about, hey, we're in this together.
We're here together, we see what's happening. We're here to
uplift each other. Or even if you know it's just
a time to vent, because you know, when you've been
(30:37):
to your family and friends, they're trying to fix it
for you. You've been to someone else with a chronic illness,
they know you're just trying to get it off your
chest and just have a sounding board of a safe
space where you're not being judged for saying I'm having
a bad day and I hate my life today and
this is so hard and why me versus so WHOA, Well,
don't think that way, you know, toxically positive, you know
(31:00):
they're trying to make it better.
Speaker 3 (31:01):
It's not helping.
Speaker 2 (31:02):
But that's something that once you're in it, you understand
that mindset that that person is in, how they got there,
and you're just able to relate and just build each other.
So I think having that place for me made me
feel a bit more understood, a bit more heard, a
bit more validated in some of the things that I
was feeling, and safe to journey and on the ups
(31:27):
and down, safe to have good days and safe to
have bad days because I've lost several friends who really
didn't understand what was going on, and I'm okay with
that now.
Speaker 3 (31:36):
They didn't understand, like you were just fine yesterday, so
why can't you come out today?
Speaker 2 (31:40):
They don't understand, like literally any second I can have
a flare up or a crisis. How I have to
schedule out my plans, like if I do something this week,
I'm not doing something next week because I want to
give my body that full time to recover and recoup.
And you pressuring me makes me beat myself up. It
(32:00):
makes me feel like I'm disappointing you, but really I'm
just trying to take care of myself. Having to explain
that to other people is also very exhausting. Versus you
don't have to explain that to someone else living with
the chronic inn it's because they aught already get it.
I remember when I learned about the term spoony. I
was like, oh, there's a name. It's a crew, Like,
oh my gosh, I'm so excited to be a part
(32:21):
of this.
Speaker 3 (32:21):
Can tell me what it means.
Speaker 2 (32:23):
I'm actually not familiar with, so spoony is a term
to explain energy levels and fatigue to people who didn't
have chronic illnesses. So it was just saying, every day
you have a set number of spoons, maybe six. You
take a shower, that's a spoon. You cook a meal
that's two spoons. You do the laundry that's three spoons,
like you've already overspooned yourself. And so from there they've
(32:46):
created term coined the term spoony as someone living with
the chronic illness. And I just think it's super cool,
especially when talking about like chronic fatigue or trying to
explain to someone how you don't have this unlimited resources
to do things for them and it's not as simple
as og take a nap, because you can take as
many naps as you want to and still be depleted
(33:08):
with a chronic illness. I just love the community and
they've been.
Speaker 1 (33:12):
Very, very welcoming, wonderful, and I'm sure it's probably helped
your physical health too, right because you have that decreased
level of those stressors by having people who understand you
and her listening to you. What would you say to
the past Morgan who was worried that she was about
to lose everything that she built.
Speaker 2 (33:32):
I would say, Morgan, take a breath, and don't roll
your eyes at me when I say that, but trust
the process, trust the journey. Everything is unfolding the way
that it is meant to, and there is going to
be so many unforeseen great things to come.
Speaker 1 (33:58):
And what would you say to any listener out there
who's been recently diagnosed with MG.
Speaker 2 (34:05):
Take the time that you need to process what's happening
to you. Don't allow anyone else to dictate your story,
your truth. Do everything in your own time. So just
take it one step at a time, one breath at
a time, one moment at a time, and when you're ready,
take a step forward in whatever direction feels right for you.
And if you fall, just lay there for a few
(34:26):
moments and then get back up.
Speaker 1 (34:30):
And always have extra napkins.
Speaker 3 (34:33):
Okay, yes, I always have extra napkins.
Speaker 1 (34:36):
So, now that you are living with an autoimmune condition
and you are fully embracing that identity looking forward, what
are your aspirations for the future.
Speaker 2 (34:46):
I am a mommy now, so I was able to
have my little girl and it's just the best thing ever, fantastic,
Thank you, even like the pregnancy journey of having an
autoimmune and like being considered high risk and all those
different things. Like that's emotionally another journey in itself on
top of just regular pregnancy and emotions. Those questions I
(35:11):
had that day one, Will I ever be a mom?
Will I ever have those things? And to just see
like you, you're worried about nothing, girl, Like it's fine.
Like if I could go back and write a letter
to my younger, like it's gonna be fine. It's gonna
be rough, but it's gonna be fine. It's gonna be
worth it. Just ride the wave and you're gonna get there.
So I look forward to being the best mom I can,
(35:31):
but also taking care of myself so that I can
be there for her and doing the things. And also
I mean maybe one day we will run a marathon.
We're gonna start out with the humble five k maybe
from walk maybe Yeah. For me, it's about living intentionally
and being that example for her of like taking care
(35:53):
of yourself even when you have something else going on,
and how to like set priorities and living like according
to values and different things. So those are some of
the things like as I look for my outlook. It's
being like a role model or for her so that
she can say, hell, my mom had this major thing
happened to her, and she overcame it and she did
(36:14):
you know, X, Y and Z, and she was still
here for me and she was still doing those things.
I would love to do more work with the spoonies
and in the community and just continue to you know,
spread light and uplift others. Whenever I go to my
specialist and I follow up with him and he mentions
the R word, I don't like to say it too
(36:35):
loud because it makes me nervous. Right, I'm like, is
it possible? Like is it over? But also knowing it's
never really over, but just being able to say, hey,
there's light at the end of the tunnel. Stay the course, like,
don't give up on yourself. Your future self, you know, five, ten,
fifteen years from now is going to be rooting for you.
But even if you are never one of those people
(36:57):
who hear those words, your life is still worth living.
And tagling on my blog is living your illness life.
So it's about defining what that means for you and
doing that thing. And so that's really what I see
myself doing in the future is really just spreading that
awareness that every single person living with the autoimmune illness
has a life worth living, and it's up to you
(37:20):
to define that, to capture that, and to go guns blazing.
Speaker 1 (37:24):
Oh Morgan, you have such a beautiful way of being
vulnerable but also connecting with others and offering inspiration and hope.
So thank you for doing what you do, and I
really appreciate this conversation. Thank you, Thank you so much.
It's been a pleasure speaking with you, and I hope
you have a great one. What an inspiring story learning
(37:51):
about her MG diagnosis as life was seemingly just beginning,
yet finding the courage to transform her situation truly highlights
the strength that a supportive community can provide. Thank you
for tuning in to the first episode of season three
of Untold Stories. If you enjoyed the show, join us
every other week for new episodes, and don't forget to
(38:12):
rate and review wherever you listen to podcasts. Untold Stories
Life with a Severe Autoimmune Condition is produced by Ruby
Studio from iHeartMedia in partnership with Argenis and hosted by
me Martin Hackett. Our executive producer is Mali Sosha. Our
EP of post production is Matt Stillo, along with supervising
producer Sierra Kaiser and post producer Sierra Spreen. This episode
(38:37):
was written by Diana Davis.
This episode contains conversations around depression and anxiety. If you
struggle with anxiety and or depression, please take care as
you listen and reach out to your healthcare provider for help.
If you're in crisis, you can contact the National Suicide
Hotline at nine eight eight. Hi everyone, and welcome back
(00:24):
for season three of Untold Stories Life with a Severe
Autoimmune Condition. This podcast is a production of Ruby Studio
in partnership with Argenics, and I'm your host, Martin Hackett.
I'm an Associate professor and Director of Public Health Programs
at Hofstra University, and as a researcher, educator, and public
health professional, I've spent my career studying the complex realities
(00:47):
of health care disparities and advocating to do something about them.
On this podcast, I speak with real people living with
severe autoimmune conditions like may asthenia gravis or MG and
chronic inflammatory demielinating polyneuropathy otherwise known as CIDP to help
expand the conversation around these shared experiences. Every person with
(01:11):
a severe autoimmune condition has a unique diagnosis, journey, and
stories of struggles, resilience and hope. We're here to shine
a light on as many of these amazing stories as
we can, stressing the power of community care and self
advocacy as we embrace this very emotional journey together. Throughout
(01:33):
this series, we've heard incredibly moving stories from people living
with autoimmune conditions. While each is deeply personal, there's a
common thread among so many of them, intense feelings of
isolation and loneliness. For those living with Mayasthenia gravis. Navigating
life while managing the debilitating symptoms can amplify these feelings tenfold.
(01:58):
This is particularly true when it seems like even your
closest friends and family struggle to understand what you're going through,
especially considering so many people have never even heard of MG. Unfortunately,
friendships and other relationships can quickly fade, making the journey
unimaginably lonely. Our guest Today, Morgan was in her mid
(02:20):
twenties when an MG diagnosis turned her life upside down.
In the weeks and months that followed, Morgan found herself
spiraling into a dark, scary place, feeling completely lost and
battling moments of intense self doubt. But then something shifted.
Morgan decided to take back control of her life by
(02:41):
Tapping into her creativity and her passion for writing and
sharing stories, Morgan created something truly spectacular that not only
transformed her life, but also the lives of so many
others living with MG and other chronic conditions before your
(03:04):
MG diagnosis, Can you tell me what was your life like?
What were some of the first signs or symptoms that
led you to question your help.
Speaker 2 (03:12):
I was twenty five years old and i had just
moved out of my mom's place, so like, I bought
myself a townhouse. I'm like in the pinnacle of independence,
and I'm like, oh, the world is my oyster. I
have all these plans, and one of the things that
I really wanted to do was to run a marathon.
Like all the rest of the girlies. You know, we
(03:34):
set this New Year's resolution to join the gym and
get in the best shape.
Speaker 3 (03:37):
Of our lives.
Speaker 1 (03:39):
It was on your vision board.
Speaker 2 (03:40):
Yes, I was doing the training, and I noticed, like
during some of the workouts, I just felt like really
really fatigued, and I'm like, oh, maybe I'm just pushing
too hard today.
Speaker 3 (03:51):
Maybe I didn't eat enough.
Speaker 2 (03:53):
You know, I'm making excuses for some of the things
that I'm starting to feel early on. So that started
in like January of just me feeling more higher than normal,
not able to push as much as I know I
had been able to do even the week before, you know,
like oh, why can't I lift this, you know, ten
pounds weight the same way, and just feeling different but
(04:13):
not really been able to put it together. I was
even like on the treadmill, and I stopped the treadmill
because I started to just feel off, and as I
was getting off of the tradmill, I actually collapsed. But
again I was just like, I clearly just overdated today,
Let's go home. So it had been you know, like
weeks of just that type of behavior and me just
really trying to rationalize some of the things that were occurring.
(04:36):
And then also again I'm training for this marathon, so
I had signed up for these weekly five k races.
And as I'm doing the races, they time you, of course,
and each week my time's getting slower. And also during
that time, like my breathing is labored, and I'm like, okay,
well what's happening now. So my new excuse was, oh,
(04:58):
i'm running outside, Maybe it's my allergies, maybe it's something
going on. Respiratory, and I remember specifically till the five
K races were on Friday evenings and Saturday morning, I
woke up and it literally looked like I had had
a stroke, like I couldn't move the right side of
my face.
Speaker 3 (05:15):
It just looked droopy.
Speaker 2 (05:16):
It was a movie when I was talking, and I
was terrified, like what in the world is going on?
So of course I start with, oh, allergies, So I
go see a allergist, and of course they're like, there,
you're fine. After the allergists, I go see a E
and T. They're like, uh, you're fine. During this time, also,
(05:39):
I start experiencing double vision because I'm like, okay, maybe
it's something going on with my eyes, So I make
a I doctor appointment. Even when they were doing the
exam individually, each of my eyes perfect vision, it was
only when both eyes were open that I experienced the
double vision. And at this point I'm like so defeated
because I'm like, what is going on? Even the eye
(06:01):
doctor saying that my vision is perfect, but clearly it's
not because it's blurry right now and I've never worn glasses,
so I'm just like, what's happening.
Speaker 1 (06:13):
It's these memorable moments filled with confusion and uncertainty that
can hit really hard for those approaching an MG diagnosis.
From Morgan, they marked the beginning of a seemingly uncontrollable
journey down a path of loneliness and isolation. We're counting
the search for answers. Morgan brings up some of the
(06:34):
common symptoms across many MG patients.
Speaker 2 (06:39):
I think they noticed that I was just very, very
discouraged in that office. So the authomologist came back in
and reran a couple tests, and she said, can you
follow my finger again? And she just stopped, and she
said it as calmly as she could, but with a
sense of urgency. She says, your left eye isn't moving, gosh.
(06:59):
And she's like, we need to schedule you for a
scan with the neurologist asap.
Speaker 3 (07:05):
And so now I'm alarmed.
Speaker 2 (07:07):
And now I'm like, okay, well what's going on with
my eyes? Like, you know, you hear all these things,
and I'm like neurologists, and I'm like scans and this
is something in my brain, you know. The whirlwind starts
and I was able to get an appointment. Literally the
next morning. I woke up that morning. Of course, it's
torrential rain pouring down. I'm experiencing horrible double vision trying
(07:32):
to drive to the testing site. So it was to
the point that I had to make like a makeshift patch.
So I had my sunglasses and my car and I
took a napkin and wrapped it over to like make
this patch so that I could drive.
Speaker 3 (07:46):
To this scan and we had the skins.
Speaker 2 (07:50):
She referred me to a neurologist and a neurologist while
we're talking, and I'm telling them everything that's happening to me,
and he says, oh, keep talking, and he goes into
his little mini fridge and he pulls out some ice
cubes and puts them in a sandwich bag and he
puts it over my eye.
Speaker 3 (08:06):
As we're talking.
Speaker 2 (08:06):
He said, yeah, continue telling me everything that's going on. And
he says take it down. And literally my eyes were
open and bright. Wow. And he says, I think I
know what's going on with you. We have to do
some subsequent tests, but I think you have MG or
my astenia. And I was like, oh, gosh, what's that.
He tried to explain it, of course, like it's gunk.
(08:29):
At this point, to me just like yeah, after like
getting that official diagnosis, it was like bittersweet because on
the one hand, this is now May when I actually
have my diagnosed, So we're talking about five months relatively
of things slowly starting to build, and now they're at
this heightened place of just like every day is just
(08:50):
a bad day for me, and finally having a name
or a diagnosis, so it's like, I'm not crazy. All
the things that came back normal, yeah, that's fine, but
now there's something that's that's really going on. So it
was a sense of like, okay, finally, but also that
that numbness of this is something that I'm really just
going to have to live with for the rest of
(09:12):
my life, because that's what he said. He said, there's
no cure. We're going to give you medication, you're gonna
have to take it for the rest of your life,
and he pretty much sent me on my way.
Speaker 1 (09:21):
There's no doubt that her MG diagnosis struck Morgan hard,
especially in her twenties when she was just coming into
her own Imagine the whirlwind of emotions upon learning your
illness is permanent and without a cure. She was facing
a challenging road ahead. What were your biggest anxieties now
(09:42):
at that time?
Speaker 2 (09:44):
For me, it was thinking about losing the independence that
I just got, Like I just am I going to
lose my house? Am I going to lose my job?
Am I not going to be able to drive? All
the things that I had pretty much worked for up
until that point, And it was like it was literally
hanging on by a thread. And then also when I
(10:04):
think about, oh, I had a plan for my life
and now are any of these things even possible for
me at this point? Like will I ever get married?
Well I ever have children? Will I ever you know,
run this marathon?
Speaker 3 (10:20):
I don't forget. The answer is still no up today,
but maybe one day soon, that's right.
Speaker 1 (10:27):
What were some of the initial questions then after the
diagnosis that you had for your doctor and what were
some of the things that you wanted to know about.
Speaker 2 (10:35):
I'm still just trying to wrap my mind around it.
My mom and as any mom knows, she's in mommy mode.
So she's on the internet looking for any type of
MG specialist within like one hundred mile radius, and I
was on like all of their wait lists trying to
get appointment.
Speaker 3 (10:54):
Thankfully, due to her du diligence.
Speaker 2 (10:56):
Within like a couple of weeks, I found the specialist
who just specially not just prologists, but I actually have
a my estenia specialist who specializes in MG cases. And
I went to see him, and from that first appointment,
it was just like he never rushes you. He always
talks and answers all of the questions, and he was
more optimistic, you know, like he gave me all the
(11:17):
answers and he was like, listen, I know that this
is this is a big deal, but we're going to
get through it together. And so like some of the
questions that you know, I took to that first appointment,
where like how did I get this? Like is it genetic?
Is it something that I did? What are my treatment options?
(11:39):
How bad can it really get versus best case scenario.
I'm still trying to understand some I'm like, well, long term,
like will I ever be able to have children? And
will I be able to do some of the things
that I felt like I want to do in my life.
Speaker 1 (11:56):
What were some of the emotions you were experiencing during
this process? I like to parken it to like the
stages of grief. You know, I was in heavy denial
for several months after that, because I was just like,
I'm not going to allow this diagnosis to change my life.
And so I was very very stubborn and very very
hard headed, and I kept trying to maintain the lifestyle
(12:19):
that I had before, So that was going out all
the time and you know, traveling and just pushing my body,
and each time my body fought back, Like for five
or six months I was in the hospital because I
was being hard headed and I wasn't listening to my
body because I was just so determined because I didn't
want to accept that this was happening to me, so
(12:42):
it was hard for me to grasp. And then I
just remember, after one hospital stayed just feeling so hopeless
and breaking down and just being in such despair, like fine,
you when I give up. And at that point I
decided to be a recluse and I completely shut myself
out from the word. So all I did every day
(13:03):
I woke up, I went to work, I came home,
and like I said, I bought a three level town
home and my bedroom was on the third level. I
couldn't even make it up my stairs to go to
my room. So every day when I came in, I
just had to lay in like my sitting area for hours,
take a nap, and I would just sometimes stay there
till nine o'clock at night and then finally make my
(13:23):
way up the stairs. But like I just reclused because
I had given up, because I just felt like, what's
the point if I try to do anything.
Speaker 2 (13:31):
My body's fighting against me. This is my new reality.
My new reality is nothingness, and all I have is
work right now. I was someone who, like I set
a goal, I met it. I was a very type
a personality, and so not having control over, you know,
my body, it was a really tough pill to swallow,
(13:52):
and I just felt like basically a failure. And then
on top of that, you know, my family and my friends,
you know, they're calling and they're texting, and they're trying
to check on me. They're having behind the scenes conversations
without me talking about well, who's going to move in
(14:13):
with Morgan and be there to keep an eye on
her and take, you know, take her to where she
needs to be. And so then on top of everything else,
I felt the guilt of being a burden to those
that I cared about.
Speaker 3 (14:26):
It was frustrating to me because I didn't want to
talk about it.
Speaker 2 (14:29):
I didn't want to talk about it because I didn't
know how to talk about it. It was still just
very very new. I grew up an only child, so
being alone wasn't really a bad.
Speaker 3 (14:39):
Thing for me.
Speaker 2 (14:39):
But being alone in that mental state, you just stew
in your misery because that's all I have to do, right,
I can't really do anything. My body won't allow me
to do anything. I didn't want to allow people in
to like visit me or come do anything because I
was feeling sorry for myself, and so it was a
bit lonely. Yeah, And I say all the time, there's
(15:02):
a difference between being lonely and being alone. Like I
was fine being alone, but being lonely in your journey
because again, this is happening to me, And as much
as my family wanted to help or wanted to be
there for me, they could not even begin to understand
what was going on with me, and so I felt
(15:23):
very much alone in just this journey. I also remember
at that time, when I googled MG, it was saying
that it was mostly for older people. So now I
feel like this giant weirdo because I'm like, where are
the people my age that are actually going through this.
Speaker 3 (15:40):
I visited like a couple of support groups.
Speaker 2 (15:42):
Because I'm like, Okay, well maybe I'll find someone who
can relate to me. And again it was older people
and they're talking about they're fatigued, but they don't know
if they're fatigued from the MG or just because they're
just in their seventies or eighties, and I'm just like.
Speaker 1 (15:58):
That's not experience.
Speaker 2 (16:00):
Yeah, it was still just very much alone, just feeling
like nobody gets in, nobody understands me, and this is
what I have to look forward to for the rest
of my life unless something changes.
Speaker 1 (16:14):
We'll be back with more untold stories after a quick break.
As a global immunology company committed to improving the lives
of people living with severe autoimmune conditions, Urgenics is dedicated
to serving the Mayasthenia Gravis or MG community through MG United.
(16:35):
MG United was created by Ergenics to support those living
with MG and their caregivers by providing the latest information,
resources and support to address the unique ways MG can
affect their lives. Wherever you are in your Mayasthenia Gravis journey,
MG United wants to help make today a better day.
(16:56):
For more information about MG United, visit MG dash United
and now back to untold stories. And So, with those
(17:16):
isolating feelings you talked about with your family, how did
the other people in your life understand what you were
going through?
Speaker 2 (17:24):
It took a lot of conversations. Some people understood, some
people did not. As far as like dating, I would
just cancel the dates and stuff and didn't really provide
explanation because again, I'm struggling to understand it for myself,
let alone explain it to someone else. I've told people
and they'll like, they would make jokes, and I guess,
(17:45):
you know, some people deal with difficult situations like making
a joke, like the guy said I was telling him
about my eyepatch and he said, it's okay, I don't
mind going out with pirate Pete. Needless to say, we
did not continue to date, and I'm like wow. As
far as my family, they tried to understand, But for us,
(18:09):
it was more about me getting them to understand my
boundaries more so than the illness, because I felt like
they were very much trying to I knew they were
trying to be helpful, but again it came across as
me feeling like I was a burden to them or
that they were trying to too early take away my independence,
(18:30):
Like let me come to you and tell you that
I need the help, don't just hover and take it
from me because we're not there yet, and trust me
to be able to tell you when I need that intervention.
But that also took time because I had to resolve
within myself that hey, it's okay for me to ask
(18:51):
for that help. I'm worthy of the help. I'm still
a person and I'm worthy and i'm value. But that
took time, Like I didn't get to that point until
probably a year post diagnosis.
Speaker 1 (19:02):
You mentioned the stages of grief that you were going through,
denial and despair and like you said, feeling like you're
a burden to your family. Is there a particular moment
that stands out as sort of like this is the bottom?
Speaker 2 (19:15):
Yes, I don't know how many of the listeners have
ever been on like a steroid or something like that,
and like some of the side effects of that, of course,
are like the weight game.
Speaker 3 (19:26):
And so again, I was.
Speaker 2 (19:28):
A girlie who was in the gym trying to make
her body the best it could possibly be and to
now have this body that I couldn't control, I didn't recognize,
and trying to shop for this body that I really
didn't like, and trying to find something I felt like
made me look flattering. Now I was in some store
in the dressing room trying to try and close. I
(19:50):
have moonface, I'm wearing an eyepatch, I'm you know, just
all the things, and trying to try and close, and
I literally just us down crying. I'm in the dressing
room crying and.
Speaker 3 (20:05):
No no one. I was like, does someone ask me?
Was okay? No one asked me? Was okay? That was
a different time? Crying in the car?
Speaker 2 (20:11):
Someone came asked me, was if that.
Speaker 3 (20:14):
Was the other time? Yeah, that was the other time.
Speaker 2 (20:16):
I was having a full meltdown, and I was just
like I don't like anything about myself or my life.
Speaker 3 (20:25):
I felt just so broken.
Speaker 2 (20:28):
I felt like unworthy, and I was just like why,
Like what is the point? Like what am I doing here?
Like what is going on?
Speaker 1 (20:40):
These difficult emotions Morgan was grappling with are all too
common among those living with MG. In fact, studies have
shown that anxiety and depression affect the mental health of
patience with MG. In Morgan's case, the emotional weight of
her condition only underlined her growth feelings of isolation.
Speaker 2 (21:03):
I felt like I was just a shell of the
person that I used to be, and that really really
hurt me. So that was kind of like the moment
like that, aham, I'm like, Okay, you don't really like yourself.
That sucks because you used to be a super cool person.
Which is really why I started doing well. When I
decided I was gonna start doing like self love or
(21:26):
I started doing what I call like my self Love
Challenge and self for like a month, I challenged myself
just to like do all the things that I felt
were difficult and it was really simple. It was difficult
for me to look at myself in the mirror and
tell myself that I love myself. It was difficult for
me to take pictures of myself, like for years. I
don't have any pictures for about three years of my
(21:49):
life because I hated the way that I looked.
Speaker 3 (21:52):
I wouldn't take pictures with other people. I stood in
the back.
Speaker 2 (21:56):
I shrunk myself, yes, because I just really wasn't in
that place to show up. So I was like, I'm
going to take a picture of myself and I'm going
to write something nice about myself. I started doing affirmations
and I did that for a month, and that first
week it was I first, they felt super stupid. I
was like, this is never going to work. On never
going to work. But I, you know, I stuck it
(22:17):
out and the first week it was definitely awkward.
Speaker 3 (22:19):
By the end of the month, I.
Speaker 2 (22:21):
Did notice that I felt a little better, just a
smidgen better, and I was like, Okay, maybe there's something
more to this. And from there it's kind of just
been like me constantly building myself and I found it
that comes in handy because with a chronic illn it,
there's so many ups and downs, like you could be
doing great and then at the drop of a hat
(22:41):
you are plummeting, and so it's like you need something
there to kind of buffer that so that you don't
stay low.
Speaker 1 (22:49):
Yeah, so you need like this sort of base, protective
layer almost to kind of keep you going. And when
you were taking those self care steps, I know that
your blog and your face fantastic YouTube channel was will
be It's been an incredible outlook for you right in
your MG journey as an aside. I really enjoyed the
way that you've played with the format over the years,
(23:11):
and I especially loved the demoing of the acrylic painting
that I'd never seen that before. That was really very,
very cool to be able to see that.
Speaker 3 (23:20):
How have you.
Speaker 1 (23:21):
Experienced how your work inspires people living with MG?
Speaker 2 (23:26):
On my year anniversary, I wrote a letter to my
MG's and I don't know what prompted me, but I
decided to post it on social media, and I got
a lot of responses. So half of the responses were
I had no idea you were even sick, because again,
I was so embarrassed and so ashamed of what my
(23:49):
life had been reduced to that I was hiding. So
people just, I guess, thought that I was just.
Speaker 3 (23:56):
Laying long in. Yeah, she's feeling some kind of way now.
Speaker 2 (24:00):
Yeah, No one knew that I was going through this
like the hardest thing that I faced this far in life.
And then you had other people who were like, wow,
I have something similar, maybe not MG, but you know,
another autoimmune condition. And they were like, you were able
to put into words exactly how I was feeling that
I couldn't articulate. That was kind of like a light bulb.
(24:23):
Writing has always been like a place of solace for me,
and I was like, what if I can use this
my pain because I was in a lot of pain
and help other people. And so I started blogging, and
you know, I slowly found my community, people of other
even if it wasn't MG, just people with other autoimmune illnesses.
Speaker 3 (24:44):
My age, but who could relate.
Speaker 2 (24:47):
To some of the things, some of the worries, some
of the outlooks that we were all facing, and just
build this little, small, little community.
Speaker 3 (24:55):
It's been great.
Speaker 2 (24:55):
Every time I can just make a post and someone
says I feel this way, or if they send me
a message and they ask questions to me, like I
try to respond to every single person because I know
what it feels like in those beginning stages to feel
so lost and so long alone, like nobody understands. And
you know, you go to Google and a whole bunch
(25:18):
of horrible things pop up. But here I am, and
I'm thankful that. You know, my journey has been what
it's been. I mean, it was bad at one point,
but once I stopped being hard headed and started doing
the things that I needed to do for myself, it's
been a lot better, and so I pride myself on
being that police for other people, where you know, I'm
(25:38):
very candid and I'm like, hey, this is what's happening.
But I'm also a place so of like, hey, let's
be a bit optimistic and let's tune into the things
that we can't control. We may not be able to
control our bodies, but we can definitely control how we
speak about ourselves, how we think about ourselves, and showing
up for ourselves in the middle of this battle. That
definitely has changed, like my mental health. I started doing,
(26:01):
you know, different things and coming out of my show
a little bit more you talk about the acrylic painting.
I was looking for things that I could do in
the house because again I'm pretty much going to work
and coming home and I was like, I have to
do something. Let me find So I started experimenting with
just different art forms of like sculpturing and taking pictures
(26:22):
and I was making candles, just all the different things
to try to say, Okay, what can I do that
I can still find joy and enjoyment in this season
of my life. And that has been like transformative for me,
on top of just helping other people.
Speaker 1 (26:39):
Does anything come to mind of response to your blog
that sort of sticks out with you.
Speaker 2 (26:47):
Yes, one of my most popular blogs was talking about
dos and don'ts with family members. Yes, and one person
it was like coming around the holidays and she was
dreading visiting her family members because of all the questions
(27:08):
and the lack of understanding. She read my blog that
I posted about that, and then she DMed me and
when we talked like the full holiday season, and like
I was like, okay, well, I would suggest that maybe preemptively,
like set this boundary, like hey, I'm not answering questions
about this at this time, and if you can't respect that,
(27:29):
then I wouldn't even bother to come. But you know,
you have to be firm, and it's okay to be firm,
you know. When she wrote back and said that it
was like the best family gathering that she had attendance
since she had been sick, like I was, like, I
felt so good. It really is amazing how being able
to use my pain and like help other people has
(27:49):
helped me heal in other ways. Even though I would
not wish autoimmune illness on anybody, but it gives me purpose,
you know, Like, Okay, well, LEAs this was for a reason.
At least I'm able to give back or help someone
not get to that super low point that I've been
in my journey to permit that, Like, let's catch you
before you hit rock bottom. Maybe you dropped a little bit,
(28:11):
but let's get you before you get all the way
down there.
Speaker 1 (28:13):
Yes, yes, and you know and that you will be
there for them, you know, like you said, with their
questions or just to be a friend.
Speaker 3 (28:20):
Yeah, definitely.
Speaker 1 (28:22):
It makes me think about when you talk about how
you experience this loneliness. That loneliness is by definition individual,
but as a public health professor, I teach about things
like the Surgeon General of the United States declaring loneliness
and isolation and epidemic and a public health crisis. It
actually has significant health consequences like increased risk of stroke
(28:45):
and dementia for everybody. Yeah, so it's a real thing,
even though it can feel very individual because that's what
it is, right, isolating, But this is something that is
true for people across the country. How for you, then,
building this community and these social connections changed your outlook
on your MG journey.
Speaker 2 (29:07):
It's one hundred percent help you know your family and
your friends, they care about you. They want to be
there for you. But a chronic illness is something that
you just really just don't understand unless you have one
One of my best friends, she was diagnosed with crones
like when we were eighteen, and I really did I
completely did not understand it. It was only after I
(29:29):
was diagnosed that I had to come back to her
and I was like, I really didn't understand. I'm sorry
that I was, you know, trying to pressure you to
come out or pressure you to do different things because
of lack of understanding. Because it wasn't that I didn't understand, Okay,
you have this illness, and it's that I understood the
mechanics of it. I didn't understand the weight, the emotional
weight of it. And so, like I said, when I
(29:52):
was going to those different support groups and I didn't
see anyone like me that could relate to the phase
of life that I was in and been able to
even create that community or just reach out to other
people online who were around the same age, who were
encountering or trying to navigate some of the situations that
I was dealing with. It changed the journey because it
(30:15):
finally felt like, wow, you understand me. You get it,
you really get it. Sometimes you don't even have to
say anything. It's just about, hey, we're in this together.
We're here together, we see what's happening. We're here to
uplift each other. Or even if you know it's just
a time to vent, because you know, when you've been
(30:37):
to your family and friends, they're trying to fix it
for you. You've been to someone else with a chronic illness,
they know you're just trying to get it off your
chest and just have a sounding board of a safe
space where you're not being judged for saying I'm having
a bad day and I hate my life today and
this is so hard and why me versus so WHOA, Well,
don't think that way, you know, toxically positive, you know
(31:00):
they're trying to make it better.
Speaker 3 (31:01):
It's not helping.
Speaker 2 (31:02):
But that's something that once you're in it, you understand
that mindset that that person is in, how they got there,
and you're just able to relate and just build each other.
So I think having that place for me made me
feel a bit more understood, a bit more heard, a
bit more validated in some of the things that I
was feeling, and safe to journey and on the ups
(31:27):
and down, safe to have good days and safe to
have bad days because I've lost several friends who really
didn't understand what was going on, and I'm okay with
that now.
Speaker 3 (31:36):
They didn't understand, like you were just fine yesterday, so
why can't you come out today?
Speaker 2 (31:40):
They don't understand, like literally any second I can have
a flare up or a crisis. How I have to
schedule out my plans, like if I do something this week,
I'm not doing something next week because I want to
give my body that full time to recover and recoup.
And you pressuring me makes me beat myself up. It
(32:00):
makes me feel like I'm disappointing you, but really I'm
just trying to take care of myself. Having to explain
that to other people is also very exhausting. Versus you
don't have to explain that to someone else living with
the chronic inn it's because they aught already get it.
I remember when I learned about the term spoony. I
was like, oh, there's a name. It's a crew, Like,
oh my gosh, I'm so excited to be a part
(32:21):
of this.
Speaker 3 (32:21):
Can tell me what it means.
Speaker 2 (32:23):
I'm actually not familiar with, so spoony is a term
to explain energy levels and fatigue to people who didn't
have chronic illnesses. So it was just saying, every day
you have a set number of spoons, maybe six. You
take a shower, that's a spoon. You cook a meal
that's two spoons. You do the laundry that's three spoons,
like you've already overspooned yourself. And so from there they've
(32:46):
created term coined the term spoony as someone living with
the chronic illness. And I just think it's super cool,
especially when talking about like chronic fatigue or trying to
explain to someone how you don't have this unlimited resources
to do things for them and it's not as simple
as og take a nap, because you can take as
many naps as you want to and still be depleted
(33:08):
with a chronic illness. I just love the community and
they've been.
Speaker 1 (33:12):
Very, very welcoming, wonderful, and I'm sure it's probably helped
your physical health too, right because you have that decreased
level of those stressors by having people who understand you
and her listening to you. What would you say to
the past Morgan who was worried that she was about
to lose everything that she built.
Speaker 2 (33:32):
I would say, Morgan, take a breath, and don't roll
your eyes at me when I say that, but trust
the process, trust the journey. Everything is unfolding the way
that it is meant to, and there is going to
be so many unforeseen great things to come.
Speaker 1 (33:58):
And what would you say to any listener out there
who's been recently diagnosed with MG.
Speaker 2 (34:05):
Take the time that you need to process what's happening
to you. Don't allow anyone else to dictate your story,
your truth. Do everything in your own time. So just
take it one step at a time, one breath at
a time, one moment at a time, and when you're ready,
take a step forward in whatever direction feels right for you.
And if you fall, just lay there for a few
(34:26):
moments and then get back up.
Speaker 1 (34:30):
And always have extra napkins.
Speaker 3 (34:33):
Okay, yes, I always have extra napkins.
Speaker 1 (34:36):
So, now that you are living with an autoimmune condition
and you are fully embracing that identity looking forward, what
are your aspirations for the future.
Speaker 2 (34:46):
I am a mommy now, so I was able to
have my little girl and it's just the best thing ever, fantastic,
Thank you, even like the pregnancy journey of having an
autoimmune and like being considered high risk and all those
different things. Like that's emotionally another journey in itself on
top of just regular pregnancy and emotions. Those questions I
(35:11):
had that day one, Will I ever be a mom?
Will I ever have those things? And to just see
like you, you're worried about nothing, girl, Like it's fine.
Like if I could go back and write a letter
to my younger, like it's gonna be fine. It's gonna
be rough, but it's gonna be fine. It's gonna be
worth it. Just ride the wave and you're gonna get there.
So I look forward to being the best mom I can,
(35:31):
but also taking care of myself so that I can
be there for her and doing the things. And also
I mean maybe one day we will run a marathon.
We're gonna start out with the humble five k maybe
from walk maybe Yeah. For me, it's about living intentionally
and being that example for her of like taking care
(35:53):
of yourself even when you have something else going on,
and how to like set priorities and living like according
to values and different things. So those are some of
the things like as I look for my outlook. It's
being like a role model or for her so that
she can say, hell, my mom had this major thing
happened to her, and she overcame it and she did
(36:14):
you know, X, Y and Z, and she was still
here for me and she was still doing those things.
I would love to do more work with the spoonies
and in the community and just continue to you know,
spread light and uplift others. Whenever I go to my
specialist and I follow up with him and he mentions
the R word, I don't like to say it too
(36:35):
loud because it makes me nervous. Right, I'm like, is
it possible? Like is it over? But also knowing it's
never really over, but just being able to say, hey,
there's light at the end of the tunnel. Stay the course, like,
don't give up on yourself. Your future self, you know, five, ten,
fifteen years from now is going to be rooting for you.
But even if you are never one of those people
(36:57):
who hear those words, your life is still worth living.
And tagling on my blog is living your illness life.
So it's about defining what that means for you and
doing that thing. And so that's really what I see
myself doing in the future is really just spreading that
awareness that every single person living with the autoimmune illness
has a life worth living, and it's up to you
(37:20):
to define that, to capture that, and to go guns blazing.
Speaker 1 (37:24):
Oh Morgan, you have such a beautiful way of being
vulnerable but also connecting with others and offering inspiration and hope.
So thank you for doing what you do, and I
really appreciate this conversation. Thank you, Thank you so much.
It's been a pleasure speaking with you, and I hope
you have a great one. What an inspiring story learning
(37:51):
about her MG diagnosis as life was seemingly just beginning,
yet finding the courage to transform her situation truly highlights
the strength that a supportive community can provide. Thank you
for tuning in to the first episode of season three
of Untold Stories. If you enjoyed the show, join us
every other week for new episodes, and don't forget to
(38:12):
rate and review wherever you listen to podcasts. Untold Stories
Life with a Severe Autoimmune Condition is produced by Ruby
Studio from iHeartMedia in partnership with Argenis and hosted by
me Martin Hackett. Our executive producer is Mali Sosha. Our
EP of post production is Matt Stillo, along with supervising
producer Sierra Kaiser and post producer Sierra Spreen. This episode
(38:37):
was written by Diana Davis.
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