January 31, 2024 • 34 mins
Jacqueline, also known as Jacq, lived in New York City with big dreams of succeeding in the fashion industry. However, her life took a significant turn after she was diagnosed with myasthenia gravis (MG), which had a profound impact on her career and marriage. Jacq faced debilitating symptoms, including many injuries, oftentimes on her own. Her family and her employer could not fully understand the strain and financial responsibility that MG would add to her life. Despite the challenges, Jacqueline found joy in rebuilding her life on her terms and grounded herself in the support of her chosen family. She has been able to cultivate grace and stability through the adjustments in her life and shares her empowering message.
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Episode Transcript
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Speaker 1 (00:00):
This podcast is not intended to provide medical advice. Please
talk to your doctor about any medical concerns. Hi, everyone,
and welcome back to Untold Stories Life with a severe
autoimmune condition. This podcast is a production of Ruby Studio
in partnership with Argenix and I'm your host, Martine Hackett.
(00:23):
I'm an Associate Professor and Director of Public Health Programs
at Hofstra University. As a researcher, professor, and public health expert,
I've spent my career studying the complex realities of health
care disparities. On this podcast, I speak with real people
living with severe autoimmune conditions to expand the conversation around
these shared experiences. Every person living with an autoimmune condition
(00:47):
has a unique story to tell. Will uncover how each
journey is unique and powerful, Exploring how community and care
are essential parts of each experience. Will also highlight the
importance of self advocacy and support. Mayasthenia gravis or MG
can be such an overwhelming condition that it can feel
like you need a full village of support to manage
(01:08):
it effectively. But what if you're struggling to find that village.
Many of our previous guests have been lucky to find
the love and support of their parents, partners, and family
as they learned to deal with MG. But that's not
the reality for everyone. For today's guest, Jacqueline or Jack,
her MG journey began when she was traveling abroad. At
(01:30):
the time, the native New Yorker had been building a
career in the competitive fashion industry. The fast pace of
the city and high stakes of her career were all
part of the excitement. That is, until she learned of
her MG diagnosis. Without the understanding and support from her family,
she often had to navigate her condition alone. Facing discrimination
(01:52):
at work and a failing marriage, Jack came to realize
that she couldn't let those setbacks stop her. She decided
to embrace and reclaim her life with the support of
her chosen family. Also, learning to advocate for herself in
the workplace has not only empowered Jack, but fueled her
desire to share her story with us today. Hi Jack, Hi,
(02:19):
it's my son's name.
Speaker 2 (02:20):
So, oh is it really? Yes?
Speaker 1 (02:22):
I love that. Yeah, it's a great name. So Jack,
let's start off by telling me what was your life
like before getting a diagnosis? What were you focused on
at that time?
Speaker 2 (02:32):
So funny enough, I didn't realize that I actually had
symptoms further back than I had thought when I started
really thinking about when I got sick. But right before
I got sick, nine to eleven happened and I decided
to quit my job and go to Australia with my
(02:56):
best friend. But got sick when I was there, and
that's when I figured out something was wrong and that
led to other symptoms.
Speaker 1 (03:05):
So what were some of your earliest symptoms?
Speaker 2 (03:07):
So this was my first real moment where I was like, well,
that was weird. It was a year before I was
working and we had a team outing and we decided
to play kickball as a company, and so I was
up to kick and my leg gave out, and so
(03:29):
I was like, well, that's odd. And then I was
able to get back up, and I wasn't able to
run the way that I would normally run, but I
still made it to the base. And that's really the
first time that I can remember like feeling oh, that
was actually my miasinia showing itself. And then when I
(03:51):
was sick, I had really bad symptoms, so I couldn't swallow,
my voice changed, the way that I was talking changed. Wow,
I was having trouble chewing, and I remember the really
scary part was I couldn't really walk well, like it
was really hard. I was like, this doesn't feel right,
(04:14):
and I just kept getting from my family, No, you're
just you're sick, Like you're just tired. You went to Australia,
you're tired. And in the back of my mind, I
just remember thinking, no, there's something else, like I know
my body and this doesn't feel like my body.
Speaker 1 (04:33):
And then what was it that finally prompted you to
get checked out?
Speaker 2 (04:37):
So I'd so like really go through a couple of
events for me finally to say I need to go
to the doctor. So I didn't have insurance, so that
was the big thing, right, I was nervous about going
to the doctor without having insurance and I didn't have
a full time job. But one of the first things
I remember looking at my sister we were driving upstate
(04:57):
to her best friend's house. I looked at her and
I said, Candice, look, I can't drink. And I was
trying to take a sip and it would just start
drooling and She's like, Okay, that's weird, but like brushed
it off, and then we just went upon our day.
And then I went into the city because I was interviewing,
and I was on an express bus, okay, and the
(05:24):
steps up to them are higher than like a normal
city bus that actually comes down. And I went and
I stepped up and my leg gave out, so I
went crashing back down onto sixth Avenue and was just
so stunned. And then I realized I couldn't get up.
(05:45):
So people that were waiting to get on the bus
with me picked me up and helps me get on
the bus.
Speaker 1 (05:52):
Wow.
Speaker 2 (05:53):
And the real event that happened after that, I was like,
I have to figure this out. I need to go
see somebody. I was again going on an interview, and
I was at my sister's house and to get down
her flight of stairs right in front of her apartment building,
there's three concrete steps, okay. And I was again trying
to make the bus to get myself into an interview.
(06:17):
And I went down, and this time I was bleeding.
I ripped open my suit pants, the tailored pants that
I was wearing for the interview, and I remember looking
over to my left and I saw two men who
were gardening, and they just stopped what they were doing
(06:39):
because they saw the fall, and this is something that resonates,
like now, so many people just stare at you when
you go down and they don't come to offer help.
So I kind of sat there and I realized I
couldn't move my hands and my fingers. I was like,
(06:59):
oh no, I think I broke my fingers. And I
of course was like, okay, well what do I do now?
I think that's the way my sister and I were raise.
My dad was very much like a Okay, you just
got to pick yourself up and you just push through.
So I'm constantly saying that to myself, like just push through,
(07:21):
even though there's times I'm sure that I shouldn't be.
But that was a moment where I was like, I
don't have a choice. I'm by myself. How am I
going to get help? I'm just gonna have to get
myself there. And yeah, I had broken three of my
fingers and now it's like permanently spaced, and that was it.
I remember saying I'm going to the hospital, like we
(07:42):
have to go whatever it takes. Yeah, I was able
to get a recommendation of somebody in the neurology department.
Speaker 1 (07:53):
In times of uncertainty, we often turn to family as
our first line of support, but Jack found that relying
on family would not be her reality. With her strong
sense of independence, Jack sprung into action to prepare for
the changes ahead.
Speaker 2 (08:09):
Well, I think that I had certain knowledge in terms
of what I knew that I was going to be
willing to do to try to make my life as
healthy as possible. I was raised by somebody who was bipolar,
and we knew that there were certain things that she
had to do to help her feel as best as
she possibly could. And so the first thing that I
(08:30):
knew that I was going to have to do is
I knew that I was going to have to go
into therapy because having anything chronic is very mentally exhausting
and draining, and so making sure that I had the
support in that. I knew that there was a possibility
that I was going to have to be on medication,
because that was another thing that we saw, like my
(08:52):
mom did best when she was in therapy and on medication.
But I also was very adamant about being as healthy
as possible within this illness, and I'm still like that.
But what I wasn't prepared for is the financial aspect
of this illness, So there was a lot of things
(09:14):
that I was thinking of, But I I do remember
being at the hospital and realizing very early on that like,
this was going to be a journey.
Speaker 1 (09:27):
Then you're still on.
Speaker 2 (09:28):
Then I'm still on. Then I'm still on.
Speaker 1 (09:31):
What was the reaction or reception from your family once
you learned about your diagnosis.
Speaker 2 (09:38):
So at the same time that I was getting sick,
my mom was being diagnosed as well with a degenerative
brain disease, So there wasn't a lot of support, And
then my dad had a really hard time admitting that
I was sick. I remember when the doctor our first
(09:59):
visit my to start, and my dad came with me,
and the doctor said, okay, Jacqueline, I want you to
squat all the way down and get back up without
any help. And I squatted down and I was like,
I can't get back up. And my dad stood there
and he's like, get up, you can do it, Get up,
get up, Come on, you can do this. And I
(10:21):
was like, I know, I can't.
Speaker 1 (10:23):
Can't.
Speaker 2 (10:23):
I can't do it. And that's kind of how he
was for a long time. He tried to give the
support that he was capable of giving, but it wasn't
actually what I've needed, and so that's been a struggle.
And then my friends, you know, no one knew what
(10:44):
this was. No one was like, you have what and
even I didn't now, so I have to say my
friends have been an amazing sense of support. Like I
would say, well, I can't come out because you know
this place might have steps, or I'm nervous about this,
and they're like, We've got you. I had one friend, Jason,
(11:07):
who every time we were out in a club or
a bar or anything where the bathroom wasn't on the
same level, he would put me on his back and
carry me down and carry me back up to make
sure that I felt safe and that I wasn't going
to fall. And that's been the case like every single
(11:28):
friend of mine to this day. If they know that
I'm feeling fatigued or if I'm weak, they will offer
a hand or they will they will help me in
any way they possibly can. You know, I've had friends
drive me to the er and sit with me. I've
had friends during COVID who would drop off food because
I was isolated and I couldn't go outside. So I
(11:50):
have a really good core group of friends that I've
been friends with since high school and they are my
family and I love them, and that's I was very lucky.
Speaker 1 (12:02):
It sounds like, too, that your family's lack of support
kind of also informed the need for the support from
your friends. What factors do you think contributed to your
family's lack of support. Do you think it was their background,
their lack of understanding.
Speaker 2 (12:18):
So my sister, I think was just as supportive as
she possibly could, but we were also dealing with my
mom being ill, and I would say with my mom,
I didn't really share that much with my mom because
she just was going through her own thing. And my
mom was very loving, she was very caring, and she
(12:38):
did the best that she could, but in terms of
how she was as a parent, she was very self involved.
So a lot of times it was just about what
she was going through. And it took me years to
realize that she had her own trauma and parents are
just people, but it did. It felt very isolating to
(13:01):
not feel like I was getting the support that I needed.
It was just my sister and I taking care of
my mom. So they did the best that they could.
But there were times. I remember, once in Colombia, I
needed help getting my brawn. And I remember my sister.
I was like, God, what am I going to do
when I have kids? She's like, are you even going
(13:23):
to be able to? And I don't know if she'll
remember this, but she also said that I was a
burden at one point during a fight that we had,
and I remember after that, I never I never really
told her anything again. I mean I didn't even tell
(13:44):
her when I was pregnant. She never knew that I
had to miscarriages. And she's an amazing woman. She's an
amazing mom, and she had her own trauma and how
a sick mom also took a lot out of her,
and I think she tried to separate from me because
(14:09):
having the sick mom and a sick sister was too much.
Speaker 1 (14:16):
Sometimes very visible and other times invisible. Jack's journey is
heavily impacted by how others perceive her MG. This duality
reminds me of Susan Sontagg's work Illness as Metaphor, which
describes how illness is ascribed meaning in our culture. Sontag
points out that shame is the internalization of this cultural
(14:40):
belief that we are somehow at fault for getting ill
and for continuing to be ill. Jack's family struggles to
understand the reality of her condition. However, her powerful empathy
has fueled a great sense of resilience while managing her MG.
Speaker 2 (15:01):
Not everybody knows that I have an illness. I don't
tend to share because it's very hard for people to
see me and think that there's something seriously wrong. My
illness is very serious. It can be life threatening. I
have had moments where I'm like, I've fallen, I've had concussions,
(15:23):
I've broken bones, I have scars and bruises from my falls,
and I think that people still, like I would say
my mom's family in Colombia and my cousins, still struggle
to understand what I've actually gone through, or the difficulty
that I have during my treatments, or how sick I get.
(15:44):
I remember when I was married, my husband at the
time looking at me and saying, I don't think people
know that this is what you deal with. Like I
fell five feet in front of him and he could
not catch me, and I was knocked unconscious because I
hit my head against the concrete, and he had a
really hard time with my ownness and dealing with it.
(16:07):
But I think the hardest for me was getting married
and finally thinking that I found my person and then
I was going to get that support that I needed,
and then realizing that he had his own trauma that
didn't allow for him to be as supportive as I needed.
(16:27):
Like there was one incident where after the infusion, my
vein just wouldn't close, and I remember going to him,
I mean, like, I need help, I need help. He's like,
I'm so tired. This is just so draining to see
you go through this.
Speaker 1 (16:47):
And I'm like, I'm bleeding.
Speaker 2 (16:49):
Yeah, well that's what I said. I was, and I
was part of my French but I was like, get
the f up, like I need help. I can't, I'm bleeding.
But that was kind of it. That was when I
saw I'm like, and I had very clearly stated to
him being with somebody with a chronic illness is exhausting
and it's mentally draining. But I cannot be your support
(17:13):
when I need to be my own personal support and
build myself up to get through this takes everything. Yeah,
it does, and people don't realize that it is. Sorry,
it is mentally exhausting, of.
Speaker 1 (17:29):
Course it is. You can't escape it. I mean, it's
all the time.
Speaker 2 (17:34):
It's you're constantly trying to plan I'm very organized and
I'm OCD, and I try to plan everything out so
that I can make sure that I'm safe and that
I can't do things. And to just have the person
that you thought was going to be your support kind
of not be able to mentally handle it. Listen, I
(17:57):
appreciate everything he did. He did the best that he could,
and I had wished that he would have listened and
gone to therapy because I think it's important that people
understand what somebody's going through. But I have to plan everything,
Like if I can't cut my food, I have to
ask for help. I remember the other day I went
(18:18):
and I asked my sister to cut my mango. She's like,
what do you want me to cut your mango for?
And I was like, can just you know, because my
hands are weak and I've cut myself with knives. And
then she's like, oh, okay, I didn't realize. And it's
just reminding people that I need certain things. And that's
I think why I don't always ask for help is
(18:42):
because I feel like people think that I'm being lazy
instead of actually meeting, but it is it's a lot
to have somebody who's supposed to be supporting you not
be able to give you that. And I get it,
you go through really bad days. But I also need
the type of environment where I'm going to hear you
got us and you're going to do this.
Speaker 1 (19:03):
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.
(19:24):
MG United was created by Urgenics 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 Maasthenia Gravis journey,
MG United wants to help make today a better day.
(19:45):
For more information about MG United, visit mgdash united dot
com and now to untold stories. Help me understand your
treatment a little bit more. Where were you getting the
(20:08):
infusions when your veins didn't close? Were you at home?
Were you in the hospital? Were you in an infusion center?
Speaker 2 (20:14):
So IVG I started in house, I have my nurse
come to my apartment. The medicine gets delivered. Sometimes she
can find a vein, sometimes she can't. So I'm left
with multiple bruises all over my arms, not on purpose,
depending on where they hit in your arm and your line.
(20:36):
So if you don't keep the band aid and pressure
on that for enough period of time, and if the
gauge of the needle might have been bigger, you will bleed.
And so that's kind of when I was like bleeding
because I had taken the band aid off. I didn't
realize that it wasn't time.
Speaker 1 (20:53):
Wow, So you learned.
Speaker 2 (20:54):
I just learned. I mean. The one good thing though,
now is that the more I hydrate, the better it seems. Okay.
So I'm constantly drinking water and I'm constantly having to
go to the to the restaurant.
Speaker 1 (21:07):
If it works, you gotta do what you gotta do.
I know. Jack is a technical design leader in fashion
by trade, but juggling her condition can feel like another
full time job. In any field, it can be challenging
to advocate for disability accommodations, but Jack's fears of risking
her job stability, including her health coverage, often rivaled her
(21:30):
passion for doing what she loves. Finding that middle ground
has been a journey of its own. How did MG
affect your professional life. How did you approach maintaining a
work life balance. Did you need to create boundaries to
accommodate your condition.
Speaker 2 (21:47):
I didn't do any of that, and I should have.
I was too scared within my industry to share that
I had an illness, So in the beginning, I would
push myself the way that anybody who was healthy would
push themselves. I was working at times, you know. I
make the joke that you would think that like working
(22:10):
in fashion is like being a doctor. You're working NonStop.
The expectation is for you to give everything to the
brands that you're working for, always be on call always. Yeah.
It's one of the most toxic industries for multiple things.
And I just pretended like I was just a healthy
individual because I was so scared of losing my job
(22:32):
because of my illness that I never even said or
thought that I had any rights as a disabled person.
And it has been constant within my industry, the abuse
that I've seen throughout my career, how they don't care.
(22:54):
I remember working a month straight and putting myself in
the hospital because because I was having trouble breathing and
I had gotten sick, and I was like, oh my god,
we have to work, like I have to work. I
can't lose my job. I can't lose my job. I
need the money, I need the insurance, I need that.
Like there was always this constant fear of if I
(23:15):
admit that I have something wrong, I'm going to be
judged or I'm going to be looked upon as something
that I'm not able to do the job and They're
going to replace me. So I've built my career like that,
just continuing to do and I love my job. I
love what I do for a living. And the company
(23:36):
that I'm in now is the first company in my
entire career that has been so supportive and promotes work
life balance and promotes healthy living and they want you
to feel healthy and they don't make you feel bad
if you have a doctor's appointment. And this I also
(23:58):
learned to become my own advocate. I went into this role.
I said, I have infusions every four weeks, I cannot
work during them, but I will never not be able
to do my job. And I've proven that. And unfortunately
with the last company that I had, I had to
(24:18):
take legal action for that based on not making sure
that the environment was safe, not making sure that I
was able to have work hours that were allowing me
to rest. I'm like, we're not saving lives. We're literally
and I will say this to anybody out there. It's fashion.
(24:41):
And I say that with younger people too, when they
lose their job. I'm like, I can literally tell you
that this is just a job and it feels like
the worst thing, and it's not. It's going to lead
you to something better. And I have a great team.
I work with amazing people who do know that I
have an illness and are very supportive of me and
(25:03):
help me. But I tend to realize that I'm controlling
because myestinia is unpredictable. I can feel great, I feel
good right now, and in an hour, I can feel
very tired and fatigued, and so I need to be
able to manage that and be able to live.
Speaker 1 (25:22):
Care of yourself.
Speaker 2 (25:22):
Yeah, I need to be able to take care of myself.
Speaker 1 (25:27):
Caring for yourself is just one piece of the puzzle
for those like Jack. A severe autoimmune condition like MG
can also bring with it a lot of economic concerns.
According to one publication Frontiers in Public Health, Among some
of the top economic concerns for some people living with
generalized mayesthenia GRAVIS are managing funds for emergency care and
(25:49):
loss of income. With so much unpredictability associated with MG,
Jack has learned to prioritize the factors she can control.
And so, how were you able to manage the medical expenses?
How did that? How has that evolved for you?
Speaker 2 (26:06):
I've been doing this for so long on my own.
Out of pocket, I can spend anywhere from depending on
the year, sometimes up to I don't know, twenty to
thirty K. In the beginning of my illness, I worked
two jobs. Wow, and it's been tough. It was actually
(26:26):
easier when I was younger because you can save all
of your medical bills and during tax season, if there's
a certain percentage of what is being put towards medical,
you get money back. So I'll see some money back.
But the more you make, the less a percentage hit.
Speaker 1 (26:47):
I see.
Speaker 2 (26:47):
Okay, But I'm just conscious of where my money is
going and what I need to be spending it on.
And listen, there are times where I'm like it's either
I pay my mortgage or I pay this medical bill,
and I just have to wait until my next paycheck
and then I pay the bill.
Speaker 1 (27:01):
Because you got to a place to live.
Speaker 2 (27:02):
I know it's kind of important. That's the big thing. Jack.
Speaker 1 (27:07):
You mentioned that MG can sometimes be an invisible illness
where people might not be aware of the challenges that
you might be facing. What have been the most impactful
lessons you've learned and when you've disclosed your condition and
learning to ask for help.
Speaker 2 (27:24):
One I have to preface. I am still learning to
ask for help. But the first thing that I always
get is, wait, you're sick. There's something wrong with you. No,
I don't believe it. You act so normal, So what's
normal to me is like excruciating for somebody else. So
(27:44):
it's hard for people to understand. It's easier when they see,
actually something happen, when you fell. Yeah, seeing me fall
or seeing me struggle with my hands or not be
able to do something that tends to show people that
there's an issue. But it is really interesting to hear
(28:07):
all the time, like you don't act like you're sick. Yeah,
I'm like, what is acting like you're sick? Mean? And
I said, if I acted the way that I felt
most of the times, I'd never get out of bed. Yeah,
what do you do? Like, I have chronic pain and
it's just one of those things. And I just pushed through,
(28:29):
Like to me, it's if I don't do it and
I don't try to look at what I have and
be appreciative. You know, I've worked my ass off, I
have a beautiful home, I have an amazing dog, I
have great friends. I love my family. I have amazing
two nieces and nephew that I am obsessed with, and
(28:51):
I'm appreciative that. So it is funny to me when
people say, like, you don't look sick, you don't act sick,
you know. And I've had conversations with strangers. I've been
yelled at to walk up an escalator. I was like
verbally accosted on the subway.
Speaker 1 (29:08):
That's New York for you.
Speaker 2 (29:09):
It is New York. But the thing is is that
they don't realize that I'm from Queen's and I'm Colombian.
So the temper comes out. And I remember telling this
woman who made a comment, and I said, you have
no idea what somebody's going through, that's right, I said,
I have a muscular disease. That is why I'm using
(29:29):
the elevator. But it doesn't matter. It shouldn't matter because
you have no idea what somebody's going through.
Speaker 1 (29:37):
Jack, what advice would you give to others in a
similar situation dealing with my aesthenia gravis while also trying
to have a successful career in a personal life.
Speaker 2 (29:47):
I think the one thing that I constantly have to
remind myself is that you can do this. It feels
overwhelming and it's it is a struggle. I won't say
that it's not. And you know, having to go to
all the doctor's appointments or having the er visits, and
I've done everything. I've done plasmaphriesis, I've done steroids, I
(30:08):
had my thimis removed to try to help myself, and
I continuously say, Okay, something doesn't work, go on to
the next thing and try it. So I think telling
yourself that you can keep trying new things to get
yourself to the best place that you possibly can, and
then accept that it's okay that you are going to
(30:29):
have those days where you just don't feel well. Yeah,
and knowing that you have the strength within yourself to
keep going and just try as hard as you can
to remember that and to surround yourself with three people
to feel loved and positive. And I have had the
(30:49):
older I get have created boundaries for myself of who
I will allow into my life and allow the support
that I need. Telling somebody what you need to feel
supported when you have an illness is extremely important. And
now I interview doctors, it's not just them taking me on,
(31:12):
it's me taking them on and saying, are you going
to be the right person that's going to work with
me to get me to the goal that I wanted
to meet? And then in the career, I mean, it's
tough because it was a really tough struggle for me
to get to this place, but it's well worth it.
I do believe that finding something that you actually enjoy
(31:35):
and love, like my job has actually been a safe
haven for me. Like I always knew that even if
I was having a bad day, I would get to
work and if I could do my job, I was happy.
I actually love my job and I've been very lucky
and not everybody has that. And then I also feel
(31:55):
like I wish that I could support people too that
are going through this, and I'm not sure how to
do that, but I am a very supportive and nurturing person,
and I want to make sure that people understand that
if there's anything wrong, it doesn't have to be my
stineo gravis. Like reach out to people.
Speaker 1 (32:14):
Jack, I just want to tell you, you know, when
you talk about giving back I just want to say
that you already have by having this conversation today, and
I really appreciate your time and all that you've shared.
Speaker 2 (32:25):
It's nice to hear that because I haven't met anybody
really in the last few years that even has my
sinia gravis. It's not well known. I feel like it's
not well understood, and it's nice to know that you're
doing something positive and you're sharing these stories, and you know,
I sent a LinkedIn message just saying, like, listening to
(32:48):
the first episode, I remember just crying and saying, oh
my god, there are other people out there going through this,
and it was nice to feel that there's a community.
I appreciate this. I appreciate what you're doing, so thank you.
Speaker 1 (33:08):
Jack's fortitude is so moving. It's hard to speak about
the deep hurt of feeling let down by family and
the pain of it feels so fresh for her, yet
she's still enthusiastic about being a support system for others
along the way. Her battle with MG fuels how she
approaches other challenges in her life, like finding a role
(33:29):
in the fashion industry that accommodates her and creating a
new community that encourages her through her life's obstacles. Thanks
for listening, Join us on February fourteenth for our next episode,
Untold Stories. Life with a Severe Autoimmune Condition is produced
by Ruby's Studio from iHeartMedia in partnership with Argenix, and
(33:51):
hosted by me Martine Hackett. Our executive producer is Molly Sosha.
Our EP of Post production is Matt Stillo, along with
supervising producers Sierra Kaiser and post producer Sierra Spring. This
episode was written and produced by Tyree Rush.
This podcast is not intended to provide medical advice. Please
talk to your doctor about any medical concerns. Hi, everyone,
and welcome back to Untold Stories Life with a severe
autoimmune condition. This podcast is a production of Ruby Studio
in partnership with Argenix and I'm your host, Martine Hackett.
(00:23):
I'm an Associate Professor and Director of Public Health Programs
at Hofstra University. As a researcher, professor, and public health expert,
I've spent my career studying the complex realities of health
care disparities. On this podcast, I speak with real people
living with severe autoimmune conditions to expand the conversation around
these shared experiences. Every person living with an autoimmune condition
(00:47):
has a unique story to tell. Will uncover how each
journey is unique and powerful, Exploring how community and care
are essential parts of each experience. Will also highlight the
importance of self advocacy and support. Mayasthenia gravis or MG
can be such an overwhelming condition that it can feel
like you need a full village of support to manage
(01:08):
it effectively. But what if you're struggling to find that village.
Many of our previous guests have been lucky to find
the love and support of their parents, partners, and family
as they learned to deal with MG. But that's not
the reality for everyone. For today's guest, Jacqueline or Jack,
her MG journey began when she was traveling abroad. At
(01:30):
the time, the native New Yorker had been building a
career in the competitive fashion industry. The fast pace of
the city and high stakes of her career were all
part of the excitement. That is, until she learned of
her MG diagnosis. Without the understanding and support from her family,
she often had to navigate her condition alone. Facing discrimination
(01:52):
at work and a failing marriage, Jack came to realize
that she couldn't let those setbacks stop her. She decided
to embrace and reclaim her life with the support of
her chosen family. Also, learning to advocate for herself in
the workplace has not only empowered Jack, but fueled her
desire to share her story with us today. Hi Jack, Hi,
(02:19):
it's my son's name.
Speaker 2 (02:20):
So, oh is it really? Yes?
Speaker 1 (02:22):
I love that. Yeah, it's a great name. So Jack,
let's start off by telling me what was your life
like before getting a diagnosis? What were you focused on
at that time?
Speaker 2 (02:32):
So funny enough, I didn't realize that I actually had
symptoms further back than I had thought when I started
really thinking about when I got sick. But right before
I got sick, nine to eleven happened and I decided
to quit my job and go to Australia with my
(02:56):
best friend. But got sick when I was there, and
that's when I figured out something was wrong and that
led to other symptoms.
Speaker 1 (03:05):
So what were some of your earliest symptoms?
Speaker 2 (03:07):
So this was my first real moment where I was like, well,
that was weird. It was a year before I was
working and we had a team outing and we decided
to play kickball as a company, and so I was
up to kick and my leg gave out, and so
(03:29):
I was like, well, that's odd. And then I was
able to get back up, and I wasn't able to
run the way that I would normally run, but I
still made it to the base. And that's really the
first time that I can remember like feeling oh, that
was actually my miasinia showing itself. And then when I
(03:51):
was sick, I had really bad symptoms, so I couldn't swallow,
my voice changed, the way that I was talking changed. Wow,
I was having trouble chewing, and I remember the really
scary part was I couldn't really walk well, like it
was really hard. I was like, this doesn't feel right,
(04:14):
and I just kept getting from my family, No, you're
just you're sick, Like you're just tired. You went to Australia,
you're tired. And in the back of my mind, I
just remember thinking, no, there's something else, like I know
my body and this doesn't feel like my body.
Speaker 1 (04:33):
And then what was it that finally prompted you to
get checked out?
Speaker 2 (04:37):
So I'd so like really go through a couple of
events for me finally to say I need to go
to the doctor. So I didn't have insurance, so that
was the big thing, right, I was nervous about going
to the doctor without having insurance and I didn't have
a full time job. But one of the first things
I remember looking at my sister we were driving upstate
(04:57):
to her best friend's house. I looked at her and
I said, Candice, look, I can't drink. And I was
trying to take a sip and it would just start
drooling and She's like, Okay, that's weird, but like brushed
it off, and then we just went upon our day.
And then I went into the city because I was interviewing,
and I was on an express bus, okay, and the
(05:24):
steps up to them are higher than like a normal
city bus that actually comes down. And I went and
I stepped up and my leg gave out, so I
went crashing back down onto sixth Avenue and was just
so stunned. And then I realized I couldn't get up.
(05:45):
So people that were waiting to get on the bus
with me picked me up and helps me get on
the bus.
Speaker 1 (05:52):
Wow.
Speaker 2 (05:53):
And the real event that happened after that, I was like,
I have to figure this out. I need to go
see somebody. I was again going on an interview, and
I was at my sister's house and to get down
her flight of stairs right in front of her apartment building,
there's three concrete steps, okay. And I was again trying
to make the bus to get myself into an interview.
(06:17):
And I went down, and this time I was bleeding.
I ripped open my suit pants, the tailored pants that
I was wearing for the interview, and I remember looking
over to my left and I saw two men who
were gardening, and they just stopped what they were doing
(06:39):
because they saw the fall, and this is something that resonates,
like now, so many people just stare at you when
you go down and they don't come to offer help.
So I kind of sat there and I realized I
couldn't move my hands and my fingers. I was like,
(06:59):
oh no, I think I broke my fingers. And I
of course was like, okay, well what do I do now?
I think that's the way my sister and I were raise.
My dad was very much like a Okay, you just
got to pick yourself up and you just push through.
So I'm constantly saying that to myself, like just push through,
(07:21):
even though there's times I'm sure that I shouldn't be.
But that was a moment where I was like, I
don't have a choice. I'm by myself. How am I
going to get help? I'm just gonna have to get
myself there. And yeah, I had broken three of my
fingers and now it's like permanently spaced, and that was it.
I remember saying I'm going to the hospital, like we
(07:42):
have to go whatever it takes. Yeah, I was able
to get a recommendation of somebody in the neurology department.
Speaker 1 (07:53):
In times of uncertainty, we often turn to family as
our first line of support, but Jack found that relying
on family would not be her reality. With her strong
sense of independence, Jack sprung into action to prepare for
the changes ahead.
Speaker 2 (08:09):
Well, I think that I had certain knowledge in terms
of what I knew that I was going to be
willing to do to try to make my life as
healthy as possible. I was raised by somebody who was bipolar,
and we knew that there were certain things that she
had to do to help her feel as best as
she possibly could. And so the first thing that I
(08:30):
knew that I was going to have to do is
I knew that I was going to have to go
into therapy because having anything chronic is very mentally exhausting
and draining, and so making sure that I had the
support in that. I knew that there was a possibility
that I was going to have to be on medication,
because that was another thing that we saw, like my
(08:52):
mom did best when she was in therapy and on medication.
But I also was very adamant about being as healthy
as possible within this illness, and I'm still like that.
But what I wasn't prepared for is the financial aspect
of this illness, So there was a lot of things
(09:14):
that I was thinking of, But I I do remember
being at the hospital and realizing very early on that like,
this was going to be a journey.
Speaker 1 (09:27):
Then you're still on.
Speaker 2 (09:28):
Then I'm still on. Then I'm still on.
Speaker 1 (09:31):
What was the reaction or reception from your family once
you learned about your diagnosis.
Speaker 2 (09:38):
So at the same time that I was getting sick,
my mom was being diagnosed as well with a degenerative
brain disease, So there wasn't a lot of support, And
then my dad had a really hard time admitting that
I was sick. I remember when the doctor our first
(09:59):
visit my to start, and my dad came with me,
and the doctor said, okay, Jacqueline, I want you to
squat all the way down and get back up without
any help. And I squatted down and I was like,
I can't get back up. And my dad stood there
and he's like, get up, you can do it, Get up,
get up, Come on, you can do this. And I
(10:21):
was like, I know, I can't.
Speaker 1 (10:23):
Can't.
Speaker 2 (10:23):
I can't do it. And that's kind of how he
was for a long time. He tried to give the
support that he was capable of giving, but it wasn't
actually what I've needed, and so that's been a struggle.
And then my friends, you know, no one knew what
(10:44):
this was. No one was like, you have what and
even I didn't now, so I have to say my
friends have been an amazing sense of support. Like I
would say, well, I can't come out because you know
this place might have steps, or I'm nervous about this,
and they're like, We've got you. I had one friend, Jason,
(11:07):
who every time we were out in a club or
a bar or anything where the bathroom wasn't on the
same level, he would put me on his back and
carry me down and carry me back up to make
sure that I felt safe and that I wasn't going
to fall. And that's been the case like every single
(11:28):
friend of mine to this day. If they know that
I'm feeling fatigued or if I'm weak, they will offer
a hand or they will they will help me in
any way they possibly can. You know, I've had friends
drive me to the er and sit with me. I've
had friends during COVID who would drop off food because
I was isolated and I couldn't go outside. So I
(11:50):
have a really good core group of friends that I've
been friends with since high school and they are my
family and I love them, and that's I was very lucky.
Speaker 1 (12:02):
It sounds like, too, that your family's lack of support
kind of also informed the need for the support from
your friends. What factors do you think contributed to your
family's lack of support. Do you think it was their background,
their lack of understanding.
Speaker 2 (12:18):
So my sister, I think was just as supportive as
she possibly could, but we were also dealing with my
mom being ill, and I would say with my mom,
I didn't really share that much with my mom because
she just was going through her own thing. And my
mom was very loving, she was very caring, and she
(12:38):
did the best that she could, but in terms of
how she was as a parent, she was very self involved.
So a lot of times it was just about what
she was going through. And it took me years to
realize that she had her own trauma and parents are
just people, but it did. It felt very isolating to
(13:01):
not feel like I was getting the support that I needed.
It was just my sister and I taking care of
my mom. So they did the best that they could.
But there were times. I remember, once in Colombia, I
needed help getting my brawn. And I remember my sister.
I was like, God, what am I going to do
when I have kids? She's like, are you even going
(13:23):
to be able to? And I don't know if she'll
remember this, but she also said that I was a
burden at one point during a fight that we had,
and I remember after that, I never I never really
told her anything again. I mean I didn't even tell
(13:44):
her when I was pregnant. She never knew that I
had to miscarriages. And she's an amazing woman. She's an
amazing mom, and she had her own trauma and how
a sick mom also took a lot out of her,
and I think she tried to separate from me because
(14:09):
having the sick mom and a sick sister was too much.
Speaker 1 (14:16):
Sometimes very visible and other times invisible. Jack's journey is
heavily impacted by how others perceive her MG. This duality
reminds me of Susan Sontagg's work Illness as Metaphor, which
describes how illness is ascribed meaning in our culture. Sontag
points out that shame is the internalization of this cultural
(14:40):
belief that we are somehow at fault for getting ill
and for continuing to be ill. Jack's family struggles to
understand the reality of her condition. However, her powerful empathy
has fueled a great sense of resilience while managing her MG.
Speaker 2 (15:01):
Not everybody knows that I have an illness. I don't
tend to share because it's very hard for people to
see me and think that there's something seriously wrong. My
illness is very serious. It can be life threatening. I
have had moments where I'm like, I've fallen, I've had concussions,
(15:23):
I've broken bones, I have scars and bruises from my falls,
and I think that people still, like I would say
my mom's family in Colombia and my cousins, still struggle
to understand what I've actually gone through, or the difficulty
that I have during my treatments, or how sick I get.
(15:44):
I remember when I was married, my husband at the
time looking at me and saying, I don't think people
know that this is what you deal with. Like I
fell five feet in front of him and he could
not catch me, and I was knocked unconscious because I
hit my head against the concrete, and he had a
really hard time with my ownness and dealing with it.
(16:07):
But I think the hardest for me was getting married
and finally thinking that I found my person and then
I was going to get that support that I needed,
and then realizing that he had his own trauma that
didn't allow for him to be as supportive as I needed.
(16:27):
Like there was one incident where after the infusion, my
vein just wouldn't close, and I remember going to him,
I mean, like, I need help, I need help. He's like,
I'm so tired. This is just so draining to see
you go through this.
Speaker 1 (16:47):
And I'm like, I'm bleeding.
Speaker 2 (16:49):
Yeah, well that's what I said. I was, and I
was part of my French but I was like, get
the f up, like I need help. I can't, I'm bleeding.
But that was kind of it. That was when I
saw I'm like, and I had very clearly stated to
him being with somebody with a chronic illness is exhausting
and it's mentally draining. But I cannot be your support
(17:13):
when I need to be my own personal support and
build myself up to get through this takes everything. Yeah,
it does, and people don't realize that it is. Sorry,
it is mentally exhausting, of.
Speaker 1 (17:29):
Course it is. You can't escape it. I mean, it's
all the time.
Speaker 2 (17:34):
It's you're constantly trying to plan I'm very organized and
I'm OCD, and I try to plan everything out so
that I can make sure that I'm safe and that
I can't do things. And to just have the person
that you thought was going to be your support kind
of not be able to mentally handle it. Listen, I
(17:57):
appreciate everything he did. He did the best that he could,
and I had wished that he would have listened and
gone to therapy because I think it's important that people
understand what somebody's going through. But I have to plan everything,
Like if I can't cut my food, I have to
ask for help. I remember the other day I went
(18:18):
and I asked my sister to cut my mango. She's like,
what do you want me to cut your mango for?
And I was like, can just you know, because my
hands are weak and I've cut myself with knives. And
then she's like, oh, okay, I didn't realize. And it's
just reminding people that I need certain things. And that's
I think why I don't always ask for help is
(18:42):
because I feel like people think that I'm being lazy
instead of actually meeting, but it is it's a lot
to have somebody who's supposed to be supporting you not
be able to give you that. And I get it,
you go through really bad days. But I also need
the type of environment where I'm going to hear you
got us and you're going to do this.
Speaker 1 (19:03):
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.
(19:24):
MG United was created by Urgenics 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 Maasthenia Gravis journey,
MG United wants to help make today a better day.
(19:45):
For more information about MG United, visit mgdash united dot
com and now to untold stories. Help me understand your
treatment a little bit more. Where were you getting the
(20:08):
infusions when your veins didn't close? Were you at home?
Were you in the hospital? Were you in an infusion center?
Speaker 2 (20:14):
So IVG I started in house, I have my nurse
come to my apartment. The medicine gets delivered. Sometimes she
can find a vein, sometimes she can't. So I'm left
with multiple bruises all over my arms, not on purpose,
depending on where they hit in your arm and your line.
(20:36):
So if you don't keep the band aid and pressure
on that for enough period of time, and if the
gauge of the needle might have been bigger, you will bleed.
And so that's kind of when I was like bleeding
because I had taken the band aid off. I didn't
realize that it wasn't time.
Speaker 1 (20:53):
Wow, So you learned.
Speaker 2 (20:54):
I just learned. I mean. The one good thing though,
now is that the more I hydrate, the better it seems. Okay.
So I'm constantly drinking water and I'm constantly having to
go to the to the restaurant.
Speaker 1 (21:07):
If it works, you gotta do what you gotta do.
I know. Jack is a technical design leader in fashion
by trade, but juggling her condition can feel like another
full time job. In any field, it can be challenging
to advocate for disability accommodations, but Jack's fears of risking
her job stability, including her health coverage, often rivaled her
(21:30):
passion for doing what she loves. Finding that middle ground
has been a journey of its own. How did MG
affect your professional life. How did you approach maintaining a
work life balance. Did you need to create boundaries to
accommodate your condition.
Speaker 2 (21:47):
I didn't do any of that, and I should have.
I was too scared within my industry to share that
I had an illness, So in the beginning, I would
push myself the way that anybody who was healthy would
push themselves. I was working at times, you know. I
make the joke that you would think that like working
(22:10):
in fashion is like being a doctor. You're working NonStop.
The expectation is for you to give everything to the
brands that you're working for, always be on call always. Yeah.
It's one of the most toxic industries for multiple things.
And I just pretended like I was just a healthy
individual because I was so scared of losing my job
(22:32):
because of my illness that I never even said or
thought that I had any rights as a disabled person.
And it has been constant within my industry, the abuse
that I've seen throughout my career, how they don't care.
(22:54):
I remember working a month straight and putting myself in
the hospital because because I was having trouble breathing and
I had gotten sick, and I was like, oh my god,
we have to work, like I have to work. I
can't lose my job. I can't lose my job. I
need the money, I need the insurance, I need that.
Like there was always this constant fear of if I
(23:15):
admit that I have something wrong, I'm going to be
judged or I'm going to be looked upon as something
that I'm not able to do the job and They're
going to replace me. So I've built my career like that,
just continuing to do and I love my job. I
love what I do for a living. And the company
(23:36):
that I'm in now is the first company in my
entire career that has been so supportive and promotes work
life balance and promotes healthy living and they want you
to feel healthy and they don't make you feel bad
if you have a doctor's appointment. And this I also
(23:58):
learned to become my own advocate. I went into this role.
I said, I have infusions every four weeks, I cannot
work during them, but I will never not be able
to do my job. And I've proven that. And unfortunately
with the last company that I had, I had to
(24:18):
take legal action for that based on not making sure
that the environment was safe, not making sure that I
was able to have work hours that were allowing me
to rest. I'm like, we're not saving lives. We're literally
and I will say this to anybody out there. It's fashion.
(24:41):
And I say that with younger people too, when they
lose their job. I'm like, I can literally tell you
that this is just a job and it feels like
the worst thing, and it's not. It's going to lead
you to something better. And I have a great team.
I work with amazing people who do know that I
have an illness and are very supportive of me and
(25:03):
help me. But I tend to realize that I'm controlling
because myestinia is unpredictable. I can feel great, I feel
good right now, and in an hour, I can feel
very tired and fatigued, and so I need to be
able to manage that and be able to live.
Speaker 1 (25:22):
Care of yourself.
Speaker 2 (25:22):
Yeah, I need to be able to take care of myself.
Speaker 1 (25:27):
Caring for yourself is just one piece of the puzzle
for those like Jack. A severe autoimmune condition like MG
can also bring with it a lot of economic concerns.
According to one publication Frontiers in Public Health, Among some
of the top economic concerns for some people living with
generalized mayesthenia GRAVIS are managing funds for emergency care and
(25:49):
loss of income. With so much unpredictability associated with MG,
Jack has learned to prioritize the factors she can control.
And so, how were you able to manage the medical expenses?
How did that? How has that evolved for you?
Speaker 2 (26:06):
I've been doing this for so long on my own.
Out of pocket, I can spend anywhere from depending on
the year, sometimes up to I don't know, twenty to
thirty K. In the beginning of my illness, I worked
two jobs. Wow, and it's been tough. It was actually
(26:26):
easier when I was younger because you can save all
of your medical bills and during tax season, if there's
a certain percentage of what is being put towards medical,
you get money back. So I'll see some money back.
But the more you make, the less a percentage hit.
Speaker 1 (26:47):
I see.
Speaker 2 (26:47):
Okay, But I'm just conscious of where my money is
going and what I need to be spending it on.
And listen, there are times where I'm like it's either
I pay my mortgage or I pay this medical bill,
and I just have to wait until my next paycheck
and then I pay the bill.
Speaker 1 (27:01):
Because you got to a place to live.
Speaker 2 (27:02):
I know it's kind of important. That's the big thing. Jack.
Speaker 1 (27:07):
You mentioned that MG can sometimes be an invisible illness
where people might not be aware of the challenges that
you might be facing. What have been the most impactful
lessons you've learned and when you've disclosed your condition and
learning to ask for help.
Speaker 2 (27:24):
One I have to preface. I am still learning to
ask for help. But the first thing that I always
get is, wait, you're sick. There's something wrong with you. No,
I don't believe it. You act so normal, So what's
normal to me is like excruciating for somebody else. So
(27:44):
it's hard for people to understand. It's easier when they see,
actually something happen, when you fell. Yeah, seeing me fall
or seeing me struggle with my hands or not be
able to do something that tends to show people that
there's an issue. But it is really interesting to hear
(28:07):
all the time, like you don't act like you're sick. Yeah,
I'm like, what is acting like you're sick? Mean? And
I said, if I acted the way that I felt
most of the times, I'd never get out of bed. Yeah,
what do you do? Like, I have chronic pain and
it's just one of those things. And I just pushed through,
(28:29):
Like to me, it's if I don't do it and
I don't try to look at what I have and
be appreciative. You know, I've worked my ass off, I
have a beautiful home, I have an amazing dog, I
have great friends. I love my family. I have amazing
two nieces and nephew that I am obsessed with, and
(28:51):
I'm appreciative that. So it is funny to me when
people say, like, you don't look sick, you don't act sick,
you know. And I've had conversations with strangers. I've been
yelled at to walk up an escalator. I was like
verbally accosted on the subway.
Speaker 1 (29:08):
That's New York for you.
Speaker 2 (29:09):
It is New York. But the thing is is that
they don't realize that I'm from Queen's and I'm Colombian.
So the temper comes out. And I remember telling this
woman who made a comment, and I said, you have
no idea what somebody's going through, that's right, I said,
I have a muscular disease. That is why I'm using
(29:29):
the elevator. But it doesn't matter. It shouldn't matter because
you have no idea what somebody's going through.
Speaker 1 (29:37):
Jack, what advice would you give to others in a
similar situation dealing with my aesthenia gravis while also trying
to have a successful career in a personal life.
Speaker 2 (29:47):
I think the one thing that I constantly have to
remind myself is that you can do this. It feels
overwhelming and it's it is a struggle. I won't say
that it's not. And you know, having to go to
all the doctor's appointments or having the er visits, and
I've done everything. I've done plasmaphriesis, I've done steroids, I
(30:08):
had my thimis removed to try to help myself, and
I continuously say, Okay, something doesn't work, go on to
the next thing and try it. So I think telling
yourself that you can keep trying new things to get
yourself to the best place that you possibly can, and
then accept that it's okay that you are going to
(30:29):
have those days where you just don't feel well. Yeah,
and knowing that you have the strength within yourself to
keep going and just try as hard as you can
to remember that and to surround yourself with three people
to feel loved and positive. And I have had the
(30:49):
older I get have created boundaries for myself of who
I will allow into my life and allow the support
that I need. Telling somebody what you need to feel
supported when you have an illness is extremely important. And
now I interview doctors, it's not just them taking me on,
(31:12):
it's me taking them on and saying, are you going
to be the right person that's going to work with
me to get me to the goal that I wanted
to meet? And then in the career, I mean, it's
tough because it was a really tough struggle for me
to get to this place, but it's well worth it.
I do believe that finding something that you actually enjoy
(31:35):
and love, like my job has actually been a safe
haven for me. Like I always knew that even if
I was having a bad day, I would get to
work and if I could do my job, I was happy.
I actually love my job and I've been very lucky
and not everybody has that. And then I also feel
(31:55):
like I wish that I could support people too that
are going through this, and I'm not sure how to
do that, but I am a very supportive and nurturing person,
and I want to make sure that people understand that
if there's anything wrong, it doesn't have to be my
stineo gravis. Like reach out to people.
Speaker 1 (32:14):
Jack, I just want to tell you, you know, when
you talk about giving back I just want to say
that you already have by having this conversation today, and
I really appreciate your time and all that you've shared.
Speaker 2 (32:25):
It's nice to hear that because I haven't met anybody
really in the last few years that even has my
sinia gravis. It's not well known. I feel like it's
not well understood, and it's nice to know that you're
doing something positive and you're sharing these stories, and you know,
I sent a LinkedIn message just saying, like, listening to
(32:48):
the first episode, I remember just crying and saying, oh
my god, there are other people out there going through this,
and it was nice to feel that there's a community.
I appreciate this. I appreciate what you're doing, so thank you.
Speaker 1 (33:08):
Jack's fortitude is so moving. It's hard to speak about
the deep hurt of feeling let down by family and
the pain of it feels so fresh for her, yet
she's still enthusiastic about being a support system for others
along the way. Her battle with MG fuels how she
approaches other challenges in her life, like finding a role
(33:29):
in the fashion industry that accommodates her and creating a
new community that encourages her through her life's obstacles. Thanks
for listening, Join us on February fourteenth for our next episode,
Untold Stories. Life with a Severe Autoimmune Condition is produced
by Ruby's Studio from iHeartMedia in partnership with Argenix, and
(33:51):
hosted by me Martine Hackett. Our executive producer is Molly Sosha.
Our EP of Post production is Matt Stillo, along with
supervising producers Sierra Kaiser and post producer Sierra Spring. This
episode was written and produced by Tyree Rush.
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