July 23, 2025 • 30 mins
Jasmine is a career coach, wife, and mother who is newly diagnosed with CIDP but no stranger to fighting for her health. After years of navigating lupus and rheumatoid arthritis, Jasmine learned how to push back, speak up, and keep going. Join Martine for the season 4 premiere as Jasmine shares what it’s like to face a new diagnosis mid-journey, and why she refuses to stay silent.
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Speaker 1 (00:09):
Welcome back to a new season of Untold Stories Life
with a severe autoimmune condition. I'm Martine Hackett. In season four,
we're exploring the strength and resilience it takes to live
with conditions like mayasthenia gravis or MG and chronic inflammatory
demilinating polyneuropathy otherwise known as CIDP. So whether you're still
seeking answers or redefining support, this season is all about
(00:33):
empowerment through new untold stories. Today we begin with Jasmine.
While many guests reflect on years of navigating their diagnosis,
Jasmine is just starting her journey with CIDP, but she's
no stranger to chronic illness. Through years of managing lupus
and other autoimmune conditions, she has built a strong foundation
(00:54):
of self advocacy. As you'll hear, Jasmine's proactive approach shapes
how she shows up just for herself, but also for
her family and the world. Let's get started, Jasmine, thank
you so much for joining us here today. Many of
our guests on this show have been on their CIDP
journey for many years, but for you this is somewhat new.
(01:17):
What has your diagnosis process been like?
Speaker 2 (01:20):
Yeah, it's been interesting.
Speaker 3 (01:22):
I had to advocate for myself to get to this
point where we have solidified a diagnosis. So I have
loopus and I have rheumatoid arthritis and rainod syndrome as well,
and so in the beginning, it was a little bit
tricky to nail down what was happening to me because
they weren't quite sure if it was more rheumatological or
if it was neurological.
Speaker 1 (01:45):
It's not unusual for CIDP to evade a clear diagnosis
at first. It shares symptoms with several autoimmune and neurological conditions.
But what is unusual is juggling CIDP alongside loopus, rumatoid arthritis,
and rainos all at once. This kind of diagnostic overlap
can make it even harder to untangle what's causing what,
(02:08):
especially when symptoms blur together. So can you tell us
about some of those early signs of your CIDP and
what you first thought was even happening. In the very beginning,
I started experiencing a lot of migrains and dizziness, which
was not typical for me. But one of the symptoms
(02:28):
that I had experienced before, but it was related to
RAYINODS was numbness in my hands and feet, but it
felt a little bit more pronounced than I had experienced.
But I started to notice that when I was walking
my gait was changing. In addition to that, I started
dealing with brain fog and having a really hard time
(02:49):
recalling facts or just remembering different things, which was really
challenging for me because professionally I'm doing a lot of
speaking public speaking. I started recognizing, like, wow, I can't
quite recall the words for different things. I feel like
I'm rambling. What Jasmine is describing is not unusual for
(03:11):
people experiencing the early signs of CIDP. They talk about
dropping things, feeling clumsy, or struggling to find words they
used to have at the ready. For many, these subtle
shifts are what sound the first alarm. Thank you so
much for sharing that and also just being so precise
in your reflections. Because you were managing other conditions like
(03:32):
lupus and rheumatoid arthritis. How did managing those conditions shape
your initial reaction?
Speaker 3 (03:38):
I think because I'm not new to existing within this
healthcare ecosystem, I really tried to capture what exactly am
I feeling and how do I distinguish it from what
I've experienced in the past, because you know, ultimately in
the beginning, I was going to my primary care provider
and then based on my experience with her to get
(04:00):
her to refer me to a specialist. So it's one
of those things where you don't want to go on
a deep dive on Google and diagnose yourself, but I
did want to present to my PCP, Okay, this is
what I'm used to experiencing, and this is what is
feeling different. So I think for me, just realizing, okay,
you know, I've been able to manage my lupis and
(04:21):
rheumatar arthritis and all of that since I was fifteen.
I'm in my mid thirties now, so again I'm not
new to this, but then recognizing, okay, this feels completely different.
And in the beginning it was challenging because my PCP
didn't quite feel comfortable referring me to a neurologist in
the very beginning, which was frustrating because I'm like, I
know my body and I know this feels different, and
(04:44):
I know you are the subject matter expert in the room,
but you're not in my body. You had this additional knowledge,
and you had been very well deep into this idea
of what autoimmune diseases look like in your body, and
you knew that this was something that was different. So
what were some of the biggest obstacles to having your
voice heard? I think initially, whenever I felt like, Okay,
(05:09):
I'm not able to remember things and I'm dealing with
these extreme migrains all of a sudden, if my PCP
is not going to refer me to a neurologist, is
there any way?
Speaker 2 (05:19):
I asked her.
Speaker 3 (05:20):
I was like, can I get a scan of my
brain or something like that? That might seem extreme, but
maybe if we take that route, then something's going to
show up on the results and then that will hopefully
inspired this doctor to refer me to the right specialist.
And so it was frustrating because I can't remember what
type of scan it was, and nothing, there were no results.
There was nothing that showed to be abnormal, and so
(05:43):
then you kind of feel like, Okay, am I crazy?
Like what's happening? There's no results to prove that we
can pinpoint something specific, And.
Speaker 1 (05:51):
Especially since you just advocate, you're like, look, I want
to have this, and you have it, and it's.
Speaker 3 (05:55):
Like, yeah, so then trying to figure out, Okay, maybe
I need to take a more holistic route because I'm
not seeing data or raw data to prove this point.
You know, it was frustrating because I felt my body
slowly deteriorating. My husband could physically see it. And then
even at work, I remember my boss even noticing he
was dealing with neuropathy in his feet as well, and
(06:16):
so we kind of bonded around that because we're both
struggling to walk to the coffee shop together and kind
of laughing together about it, but also recognizing like, oh,
you went from being fully functioning to now, all of
a sudden, you're having to move very slowly. And so
it wasn't until something really extreme happened that finally my
voice was heard. So I met with my rheumatologist and
(06:37):
tried to advocate for myself there to have her maybe
refer me to a neurologist, and she also, I don't
know why, there just was not a sense of urgency.
But then literally the next day, I was at a
meeting downtown and I ended up falling down a fly
to stairs.
Speaker 1 (06:53):
Oh my god.
Speaker 3 (06:53):
And it was pretty extreme and traumatic and embarrassing all
of those different.
Speaker 2 (06:59):
You know, feeling things.
Speaker 3 (07:00):
But even though I hated that that happened, finally that's
when they're like, Okay, maybe we should listen to her.
You know, you want collaborative care to help you from
the beginning of your health crisis, but unfortunately it wasn't
until something like that happened.
Speaker 1 (07:17):
Wow. And so it sounds like throughout this that self
advocacy is something that you are very well versed in, Jessin,
what does self advocacy mean to you? That's a really
good question.
Speaker 3 (07:30):
I think self advocacy for me is, even though I
think it's important to be rooted in the facts and
be able to see that data and know what's specifically
happening to you, also trusting yourself and trusting your body
and trying the best way possible to put words to
those feelings that may feel more abstract within you. And
(07:53):
so I think that's something that I've had to learn
how to do over time. I remember even as a child,
you know, in the hospital there you know, of course
you have your my mother who was advocating for me
and was able to put language to how her child
was feeling. But then as I became an adult like, Okay,
even when somebody is looking you in the face and saying,
(08:14):
oh no, it's not that thing, you kind of digging
deep and saying it is. And I'm going to be
relentless about this. And you know, I think for me, naturally,
I try to be more amicable and try.
Speaker 2 (08:26):
To keep the peace.
Speaker 3 (08:28):
But when it comes to your own quality of life,
you have to speak up. And whether that comes out
in an emotional way where it's tears or maybe it
might be anger, whatever the case may be, like, that's
valid for you and just expressing that however you need
to express it.
Speaker 1 (08:44):
For me, that self advocacy wonderful. So it's this idea
that you're recognizing, you're seeing, and you're finding the words,
you're finding the ways to be able to communicate it
to those in power who can actually help you do
something about it, exactly right. Tapping into that into a
I think is important, right, being very resolute in that. So,
(09:04):
when you were trying to get that referral for a
neurologist and you faced some delays and roadblocks, what advice
would you give to someone in a similar situation.
Speaker 3 (09:15):
I know not everybody has a partner that's going to
be in the room with them. I'm so grateful for
my husband that was there with me, and he, you know,
he's kind of the scribe in the background. He's able
to kind of go back to our notes and we
have like a shared kind of documenter notes tab. But
let's say you don't have that person. I think even
(09:36):
though within our healthcare system, sometimes you can feel like, okay,
you have fifteen minutes and keep it moving, really being
okay with taking up space and saying, oh, I'm so sorry,
can you reiterate that, or can you break this down
for me and then taking time to document it in
whatever format that you need. So for me, whether my
husband was there or not, I pull up my notes
(09:57):
tab and whether it's like, okay, at this in a
voice memo or let me type notes in real time.
I think that's something that I would encourage a patient
to do, is just to take up space and to
take notes.
Speaker 1 (10:10):
So, speaking of your detailed records, you've also kept that
of your symptoms and your experiences. Where did you learn
the importance of record keeping and how it empowers this
self advocacy, especially so early in your CIDP journey.
Speaker 3 (10:25):
I definitely attribute that to my mother actually, and like
I said, being in the healthcare system from such an
early age and just watching the way that my mother
would advocate for me, or she would have notes and
back then we didn't really have smartphone, so she would
physically take notes, or after we would meet with a physician,
(10:45):
she would kind of debrief and capture that information. And
also she would do a really great job of like,
I appreciate your opinion here as again the physician in
the room, but it's okay, I'm going to seek out
another opinion. So you just never know when it might
come up in a handy way where it's like, oh,
I have these receipts.
Speaker 1 (11:06):
Love it, so love it. Yes, I mean and so
awesome that your mom was such a great role model
and not only did you see her do it right,
but it became useful, yes, when she was then able
to say, well, excuse me, let me just refer back.
Speaker 3 (11:19):
Gosh, I'm so glad you asked me that question, because
I hadn't really thought about that until this moment. But
I'm just really grateful for her and the influence that
she's had in my life.
Speaker 1 (11:29):
When talking to your care team and advocating for yourself.
You mentioned before how you're kind of mindful of the
way that you present information to them so that you
pose it as a question so that they could answer.
So could you talk a little bit more about that.
Speaker 3 (11:42):
I think that I really tried to build a relationship
to try to get to know them as a person
as well to humanize them, because I think a lot
of times, as the patient, we almost make the physician
a many God, you know, it's like you're way up here,
I'm way down here. But when I almost try to
level set in the beginning trying to get to know them.
(12:04):
But whenever I'm able to build that connection somehow with them,
and I think that they almost feel even more willing
to be an advocate for me as well. And I
don't know, it may seem strategic, it's also genuine too,
and I've found that that has helped in building that rapport.
And then whenever I'm presenting new ideas, it doesn't come
off like, oh, I'm this pretentious patient.
Speaker 2 (12:27):
It's like, hey, like I'm really trying to grow in
my knowledge in this.
Speaker 1 (12:31):
How has building that relationship impacted the care you received?
Do you think I think that it's definitely increased because
they know that I'm going to follow up and that
I care deeply about what my care looks like. And
in addition, I've communicated to them even though here in
my home in town, you are my physician. I've also
(12:52):
sought out some additional support from a larger healthcare system
that's in a larger metroplex area. And so this is
not to compete with you, but I want you guys
to collaborate together. So, for example, there's a healthcare system
that's quite large and they're more research driven that I've
been able to get access to in the larger Dallas area,
(13:14):
and so I love that they're able to pull from
past studies and use that to inform the care that
they provide to me. And then I ask them to
communicate that to my I'm going to call them my
home base doctor, and I've tried to communicate that to
my doctors that are here in my community that like,
I'm so excited that you guys are working together, so
(13:35):
they don't feel like, oh, why are.
Speaker 2 (13:36):
You going over there?
Speaker 3 (13:37):
But again kind of hearkening back to what I said
about my mom and how she's like, it's okay, to
get a second opinion, and in fact, I'm sure trying
to frame it like this is to support your doctor
that's here that may not have access to all of
that research that's sharpening their skills as well and exposing
them to different medications or different approaches that they may
(13:58):
not have realized existed. Anyway, That's how I try to
look at it and approach it.
Speaker 1 (14:02):
It's wonderful because it really sounds like you're shifting that
power dynamic right to make it more equitable. And it's
not that they have more, you have more, but that
you are both in this together.
Speaker 2 (14:11):
Right.
Speaker 1 (14:12):
Yeah, I love that because again, we as patients right,
want our physicians, our care providers to see us as people. Right.
What you're saying is, let me see my providers as people.
Speaker 3 (14:22):
Yes, yeah, I really tried to and I may not
always strike gold on it, but I would say ninety
percent of the time I do. I can feel the
difference in the care that I receive if I put
a little bit of effort in that way too.
Speaker 1 (14:35):
Jasmin, you've posted about how being hospitalized and undergoing testing
can be overwhelming. How has your support system come into
play here? I really believe in the power of community.
And I'm just so grateful that my husband and I
we've chosen to live where we live.
Speaker 3 (14:54):
Neither of us are from this small town. My husband's
from Seattle, Washington, and I grew up as a military child,
so I've lived all over the place around the globe.
For us, our faith community is really important to us.
And the way that our church has provided I would
call it wrap around services for us, like they put
together a meal train for us, have written handwritten notes,
(15:16):
have just shown up in big and small ways. But
then in addition to that, I have incredible friends. One
of the things that I love about our friend group
we get together every single Sunday and we call ourselves
a Sunday Crew, and we do Sunday dinners together, we
have a game night, maybe we're watching a movie, and
so anyway, having that to look forward to as well
(15:37):
has just been incredible. And then I work in an
environment where they have been incredibly flexible and really portant
to me as well. You know this is not common,
and so anyway, I feel immensely blessed by my community.
Speaker 1 (15:53):
There's something powerful about not having to explain yourself about
being seen social support like Jasmine isn't just comforting for
people with chronic illness, it can be a protective factor
emotionally and physically. And is this something that you realized
was there after you needed them, after you moved there?
(16:14):
Just can you tell me a little bit more about
because I'm fascinated by this.
Speaker 3 (16:17):
Yeah, I knew that it existed before experiencing this health crisis.
My husband and I are very involved in the community.
We both really like to volunteer in the community and
serve on nonprofit boards, and so being able to see
from that perspective just the way that people in our
community show up for one another. For example, one of
the nonprofits that we've provided grants to is Meals on Wheels.
(16:40):
We were able to go in do a tour of
that facility and see all the great work they're doing
in the surrounding areas. And now here I am now
a patient at home and I'm receiving services from Meals
on Wheels and so this kind of full circle moment
has been awesome. So anyway, going back to your question,
absolutely I was able to reckickiz that before being a
(17:01):
recipient of all this love and care, and prior to
my being at this point we'll be back with more
untold stories after a quick break. As a global immunology
company committed to improving the lives of people suffering from
severe autoimmune conditions, our Genics is dedicated to shining a
(17:25):
light on resources that support the CIDP or chronic inflammatory
demilinating polynorropathy community. Shining through CIDP is a website that
aims to help those living with CIDP and their caregivers
by providing reliable information, helpful tips, and relatable stories of
both trial and triumph featuring people with CIDP like you.
(17:47):
Shining through CIDP features real stories, tips on emotional self care,
and new ideas to help navigate the CIDP journey. For
more information, visit Shining THROUGHCIDP dot com and now back
(18:09):
to untold stories. So, as someone who is still new
to your CIDP journey, and you've said before that this
has been a season of mourning and awakening, Yes, what
does resilience look like to you? I think resilience to
me means showing up with purpose even when things are hard,
(18:34):
like even when you feel like you're suffering, like really
trying to stay grounded in who you are no matter
what life throws at you. For me, purpose is rooted
in serving others and being present for others, educating others.
And so for me in the midst of these trials
and tribulations, still trying to communicate to others even while
(18:57):
I'm suffering, How can I still find joy in the
midst of all of this? And I don't know. For
me in this season, that's what resilience has looked like.
But even if I look over the course of my life,
trying to still press forward even when you're in the
middle of suffering, that's kind of how I would describe resilience.
Speaker 1 (19:13):
Yeah, I mean, it's not black or white, right, there
are times when you know you're really feeling it, and
you allow yourself to feel it, but you also recognize
that that's not everything, and that there's still these, like
you said, moments that you have that are able to
propel you forward and that you're not stuck in this
right And so when we think about that, what small
(19:35):
winds are you celebrating.
Speaker 3 (19:38):
Well, sometimes it's just opening my eyes in the morning.
Trying to capture those small winds was a challenge in
the beginning, because I'm definitely someone that's goal oriented, and
I even sometimes have a hard time celebrating my big wins.
Like let's say I accomplish something huge, I'm like, Okay,
what's the next thing? You know. I don't want to
be that way. I want to be able to even
celebrate this small winds. And I think going through this
(20:00):
season where I literally could not use my hands and feet,
you know, and I really had to rely on other
people to help me walk, to go to the restroom,
to bathe. All of that, I really had to take
a step back and recognize waking up in the morning,
taking one little step, holding a spoon in your hand
and bringing it to your mouth, that is a wind, Jasmine.
(20:21):
It's really helped me reframe what are winds. I think
everything is worth's celebrating. And I'm grateful that I've gone
through this experience because it's helped to ground me in
that fact.
Speaker 1 (20:32):
I also saw that you were at your sister's wedding,
and that seems like a big win that you want,
oh my God, to be able to travel there and
to dance. Can you talk a little bit about that.
Speaker 3 (20:41):
Yeah, So we found out that my sister got engaged
last year, but then of course, my health started to
decline back in October, and I was so afraid that
I would not be able to go to the wedding.
I really wanted to be able to celebrate with her
and be there with her, but the wedding was all
the way in Italy, and so I just remembered telling
my therapist, like, I want to be able to dance
(21:03):
at my sister's wedding, and this seems absolutely impossible because
I can barely move right now, but this is something
that I really want to do. And so each time
I would go to therapy, my inpatient rehab therapist and
also my outpatient rehab therapist, they would integrate some type
of exercise to help me get ready and increase my
(21:24):
strength to be able to dance at my sister's wedding.
And I was able to do it and it was
so awesome. So I was really proud of myself and
just again grateful to the team that helped get me there.
Speaker 2 (21:35):
That's a big one for sure.
Speaker 1 (21:36):
Yes, Josin, you've talked about your husband and your young son.
How have your health challenges brought you and your family
closer and shaped you as a mother.
Speaker 3 (21:47):
My husband has always been a very patient, kind, empathetic person.
That's what drew me to him even when we were dating.
But it takes it to another level when you have
a child involved, and being able to witness the ways
that he's been tender with me, and then seeing my
five year.
Speaker 2 (22:06):
Old model that has been so special. My son is high.
Speaker 3 (22:10):
Energy, you know, he's your typical five year old boy,
pretty rambunctious, but when he's with me, he's very patient
and takes his time with me, holds my hand. It's
precious to watch it, and there have been times where
I didn't think i'd be able to get up off
the couch and he'll look at me and my five
year old saying, Mommy, you can do hard things.
Speaker 2 (22:30):
You got what? I know? It's so sweet.
Speaker 3 (22:34):
It's making me emotional just thinking about it, and I'm
just I know that it's incredible, and I know that
I can attribute that to the father that my husband
is and the husband that he has been to me,
and I know that my son is watching that, and
so that's been really special. I think that prior to
this diagnosis and going through all of this, I was definitely,
(22:55):
like I said, very goal oriented, and I think that
I wasn't as present as I could have been. I
wasn't as tuned in as I could have been. And again,
being in a position where I'm literally hospital bound and
not able to move, I'm able to listen more. I'm slower,
and I think that's a good thing. I'm able to
be still, and my son, I think, was able to
(23:15):
tune into that. And I feel like I was a softer,
more present mother because of what has happened, and I
just I feel like it's brought us all so much
closer together, and so another positive thing that i can
pull from this experience, and I'm really grateful for that. Wow.
Speaker 1 (23:30):
I mean to even have that ability to reflect in
the way that you are, that's really powerful, Jasmine, to
just really kind of point that out that even though
you're going through really hard things, that you see something
that has come out of that that's positive. What do
you wish other people that are understood about this stage
of your diagnosis. I wish that people understood that it
(23:59):
can be incredibly isolating, for sure, especially because you know,
right now, even though I'm slowly regaining my ability to walk,
I still can't fill my feet. I'm not able to
be as independent as I was before. I can't drive.
Speaker 3 (24:15):
I have to rely on other people to pick me
up and take me places, and that's really that can
definitely take a toll on your mental health. And to
communicate to others what it looks like to try to
aspire towards identifying joy in each day. I think that
also I can acknowledge that this is a really challenging
(24:35):
season too, and I'm grateful for my community that has
shown up for me. Mental health is important and to
not have any shame around reaching out to a mental
health professional and to prioritize that from the beginning if
you can, because being in the hospital and kind of
that takes a toll already, and then when you get
(24:56):
home and you're not able to get out as much,
it's just that's really challenging.
Speaker 1 (25:01):
And so to recognize that you are going to have
a time to be able to deal with it, and
like you said, to be able to acknowledge that and
to reach out for help. It also seems to me
with what you said, Jasmine, that this is often invisible disability, right,
and people might look at you and you're like you
look fine, you know, yes, readily, you know whatever, Yeah,
to recognize that there's more going on.
Speaker 2 (25:21):
Mm hmm. Yeah.
Speaker 3 (25:23):
I definitely have hit some highs, but then I don't know.
Sometimes it hits me like a sack of bricks. Then
I'll hit those lows as well, And so for me,
I think trying to capture those feelings, whether in blog
post form or writing poetry, has been really helpful for me.
And circling back to what we talked about with communication
(25:44):
with your physicians and building partnerships with them, you mentioned
about leaving notes and also in the online.
Speaker 1 (25:53):
Portals as receiints josmen. What kind of resources do you
wish existed for newly diagnosed people.
Speaker 3 (26:00):
One of the reasons why I even started my Instagram
page was because I was desperate to find resources that
could showcase what it's like in the middle of walking
through this journey with CIDP, I came across a lot
of pages of individuals that were on the other side
of the diagnosis, and it's like, now they're running a marathon, right.
I don't want to discount that because I view that
(26:22):
as aspirational. I'm so grateful for that, but I wish
that there was more more capturing the middle of the journey,
the ugly side of it, the bad and the ugly.
Had a friend that encouraged me and said, Hey, like,
while you're in the middle of this and I know
that you really want to be able to capture your progress,
why not share it with people who are supporting you.
You know, I'm sharing things on my social media page
(26:44):
that i'm Sometimes i look back, I'm like, I can't
believe I shared that. But I'm also grateful because I
you know, there are people who reach out to me
privately that are like, I'm so glad you talked about
depersonalization or derealization and what it feels like to feel
dissociated from yourself when you're in the hospital, something that
not many people talk about, or those topics that are
not sexy topics, but they're real, and so I wish
(27:07):
there was more of that.
Speaker 1 (27:11):
This moment was pivotal for Jasmine. When she couldn't find
the stories that reflected the complicated middle of her journey,
she started sharing her own. Her Instagram became a form
of self advocacy, a way to stay connected to her
care and create and build the kind of community she
wished she'd found for herself. Sooner. Absolutely, And it sounds
like that's what you're providing, because again, it provides people
(27:34):
with those sort of steps along the way that are
really the hard part. Yeah, I want to just reflect back.
You said you've change as a person, before you said
you felt like you've shed a skin. Could you talk
a little bit more about that.
Speaker 3 (27:47):
Yeah, it's hard to explain or to articulate. I can
only describe it as in some ways, I was wearing
a mask like it wasn't that, it wasn't me, but
I felt like I almost like a robot, like this
is the formula that I need to follow. Society says
you have to follow this formula in order to achieve
these things. And I think I'm coming out on the
(28:08):
other side softened a little bit and not feeling like, oh,
I need to wear this mask. Like No, I feel
like I can live more authentically, and if that means
I'm slowing down or I'm not showing up to all
the things, or you know, I feel like I'm a
little more intentional now. I'm a little less focused on
what society is trying to project onto me and more
(28:30):
in tune with what my body needs, what my family needs,
and being okay with that and not trying to compare
compare exactly. Yeah, I think I struggled a lot with
that before, and I just feel more settled and grounded
in who I am and I'm grateful for that absolutely.
Speaker 1 (28:49):
And it sounds like to me, Jusmine, that idea of
letting yourself feel those emotions is what propelled you to
that next phase, Like you said, that sort of in
between where you then have come out on the other side,
where you have shed your skin, where you have slowed down,
where you've become more present, and like that's kind of
what you needed to do to get to where you
are now. Yes, oh, Jasmine, this has been such a
(29:12):
great conversation. Thank you so much.
Speaker 2 (29:14):
Yay, I love this so much, Martine.
Speaker 3 (29:16):
And uh, you're more than welcome to join our Sunday
crew as long as you bring food so.
Speaker 2 (29:24):
Viciously.
Speaker 1 (29:25):
This is yes, that's it's a community is so important
and it's such like one of those small things where
you know, you feel like, you know, oh, I'm going
to you know, have a kid, and we're gonna have
to do these things. But it's like, no, why don't
you just slow down and like talk to people and
like hang out and plan what you're gonna.
Speaker 3 (29:40):
Eat as you know, just be yes, just be Thank you, Martine,
I appreciate that.
Speaker 1 (29:49):
A huge thank you to Jasmine for sharing not just
her story, but her strength. Her journey is a reminder
to all of us that self advocacy isn't just about
speaking up. It's about knowing your body, trusting your instincts,
and showing up for yourself in ways you never imagined possible.
Whether you're at the start of your own journey or
(30:09):
deep in the middle of it, I hope Jasmine's resilience
reminds you that your voice matters and that you're never alone.
We'll see you next time on Untold Stories. Untold Stories
Life with a Severe autoimmune condition is produced by Ruby's
Studio from iHeartMedia in partnership with Argenix and hosted by
(30:30):
me Martine Hackett. Our executive producer is Yvonne Shehan. Our
producer is Leah Sutherland. This episode was written and produced
by Diana Davis. Post production for this season is by
Tom Sullivan and Paul Videlen's of Audiography
Welcome back to a new season of Untold Stories Life
with a severe autoimmune condition. I'm Martine Hackett. In season four,
we're exploring the strength and resilience it takes to live
with conditions like mayasthenia gravis or MG and chronic inflammatory
demilinating polyneuropathy otherwise known as CIDP. So whether you're still
seeking answers or redefining support, this season is all about
(00:33):
empowerment through new untold stories. Today we begin with Jasmine.
While many guests reflect on years of navigating their diagnosis,
Jasmine is just starting her journey with CIDP, but she's
no stranger to chronic illness. Through years of managing lupus
and other autoimmune conditions, she has built a strong foundation
(00:54):
of self advocacy. As you'll hear, Jasmine's proactive approach shapes
how she shows up just for herself, but also for
her family and the world. Let's get started, Jasmine, thank
you so much for joining us here today. Many of
our guests on this show have been on their CIDP
journey for many years, but for you this is somewhat new.
(01:17):
What has your diagnosis process been like?
Speaker 2 (01:20):
Yeah, it's been interesting.
Speaker 3 (01:22):
I had to advocate for myself to get to this
point where we have solidified a diagnosis. So I have
loopus and I have rheumatoid arthritis and rainod syndrome as well,
and so in the beginning, it was a little bit
tricky to nail down what was happening to me because
they weren't quite sure if it was more rheumatological or
if it was neurological.
Speaker 1 (01:45):
It's not unusual for CIDP to evade a clear diagnosis
at first. It shares symptoms with several autoimmune and neurological conditions.
But what is unusual is juggling CIDP alongside loopus, rumatoid arthritis,
and rainos all at once. This kind of diagnostic overlap
can make it even harder to untangle what's causing what,
(02:08):
especially when symptoms blur together. So can you tell us
about some of those early signs of your CIDP and
what you first thought was even happening. In the very beginning,
I started experiencing a lot of migrains and dizziness, which
was not typical for me. But one of the symptoms
(02:28):
that I had experienced before, but it was related to
RAYINODS was numbness in my hands and feet, but it
felt a little bit more pronounced than I had experienced.
But I started to notice that when I was walking
my gait was changing. In addition to that, I started
dealing with brain fog and having a really hard time
(02:49):
recalling facts or just remembering different things, which was really
challenging for me because professionally I'm doing a lot of
speaking public speaking. I started recognizing, like, wow, I can't
quite recall the words for different things. I feel like
I'm rambling. What Jasmine is describing is not unusual for
(03:11):
people experiencing the early signs of CIDP. They talk about
dropping things, feeling clumsy, or struggling to find words they
used to have at the ready. For many, these subtle
shifts are what sound the first alarm. Thank you so
much for sharing that and also just being so precise
in your reflections. Because you were managing other conditions like
(03:32):
lupus and rheumatoid arthritis. How did managing those conditions shape
your initial reaction?
Speaker 3 (03:38):
I think because I'm not new to existing within this
healthcare ecosystem, I really tried to capture what exactly am
I feeling and how do I distinguish it from what
I've experienced in the past, because you know, ultimately in
the beginning, I was going to my primary care provider
and then based on my experience with her to get
(04:00):
her to refer me to a specialist. So it's one
of those things where you don't want to go on
a deep dive on Google and diagnose yourself, but I
did want to present to my PCP, Okay, this is
what I'm used to experiencing, and this is what is
feeling different. So I think for me, just realizing, okay,
you know, I've been able to manage my lupis and
(04:21):
rheumatar arthritis and all of that since I was fifteen.
I'm in my mid thirties now, so again I'm not
new to this, but then recognizing, okay, this feels completely different.
And in the beginning it was challenging because my PCP
didn't quite feel comfortable referring me to a neurologist in
the very beginning, which was frustrating because I'm like, I
know my body and I know this feels different, and
(04:44):
I know you are the subject matter expert in the room,
but you're not in my body. You had this additional knowledge,
and you had been very well deep into this idea
of what autoimmune diseases look like in your body, and
you knew that this was something that was different. So
what were some of the biggest obstacles to having your
voice heard? I think initially, whenever I felt like, Okay,
(05:09):
I'm not able to remember things and I'm dealing with
these extreme migrains all of a sudden, if my PCP
is not going to refer me to a neurologist, is
there any way?
Speaker 2 (05:19):
I asked her.
Speaker 3 (05:20):
I was like, can I get a scan of my
brain or something like that? That might seem extreme, but
maybe if we take that route, then something's going to
show up on the results and then that will hopefully
inspired this doctor to refer me to the right specialist.
And so it was frustrating because I can't remember what
type of scan it was, and nothing, there were no results.
There was nothing that showed to be abnormal, and so
(05:43):
then you kind of feel like, Okay, am I crazy?
Like what's happening? There's no results to prove that we
can pinpoint something specific, And.
Speaker 1 (05:51):
Especially since you just advocate, you're like, look, I want
to have this, and you have it, and it's.
Speaker 3 (05:55):
Like, yeah, so then trying to figure out, Okay, maybe
I need to take a more holistic route because I'm
not seeing data or raw data to prove this point.
You know, it was frustrating because I felt my body
slowly deteriorating. My husband could physically see it. And then
even at work, I remember my boss even noticing he
was dealing with neuropathy in his feet as well, and
(06:16):
so we kind of bonded around that because we're both
struggling to walk to the coffee shop together and kind
of laughing together about it, but also recognizing like, oh,
you went from being fully functioning to now, all of
a sudden, you're having to move very slowly. And so
it wasn't until something really extreme happened that finally my
voice was heard. So I met with my rheumatologist and
(06:37):
tried to advocate for myself there to have her maybe
refer me to a neurologist, and she also, I don't
know why, there just was not a sense of urgency.
But then literally the next day, I was at a
meeting downtown and I ended up falling down a fly
to stairs.
Speaker 1 (06:53):
Oh my god.
Speaker 3 (06:53):
And it was pretty extreme and traumatic and embarrassing all
of those different.
Speaker 2 (06:59):
You know, feeling things.
Speaker 3 (07:00):
But even though I hated that that happened, finally that's
when they're like, Okay, maybe we should listen to her.
You know, you want collaborative care to help you from
the beginning of your health crisis, but unfortunately it wasn't
until something like that happened.
Speaker 1 (07:17):
Wow. And so it sounds like throughout this that self
advocacy is something that you are very well versed in, Jessin,
what does self advocacy mean to you? That's a really
good question.
Speaker 3 (07:30):
I think self advocacy for me is, even though I
think it's important to be rooted in the facts and
be able to see that data and know what's specifically
happening to you, also trusting yourself and trusting your body
and trying the best way possible to put words to
those feelings that may feel more abstract within you. And
(07:53):
so I think that's something that I've had to learn
how to do over time. I remember even as a child,
you know, in the hospital there you know, of course
you have your my mother who was advocating for me
and was able to put language to how her child
was feeling. But then as I became an adult like, Okay,
even when somebody is looking you in the face and saying,
(08:14):
oh no, it's not that thing, you kind of digging
deep and saying it is. And I'm going to be
relentless about this. And you know, I think for me, naturally,
I try to be more amicable and try.
Speaker 2 (08:26):
To keep the peace.
Speaker 3 (08:28):
But when it comes to your own quality of life,
you have to speak up. And whether that comes out
in an emotional way where it's tears or maybe it
might be anger, whatever the case may be, like, that's
valid for you and just expressing that however you need
to express it.
Speaker 1 (08:44):
For me, that self advocacy wonderful. So it's this idea
that you're recognizing, you're seeing, and you're finding the words,
you're finding the ways to be able to communicate it
to those in power who can actually help you do
something about it, exactly right. Tapping into that into a
I think is important, right, being very resolute in that. So,
(09:04):
when you were trying to get that referral for a
neurologist and you faced some delays and roadblocks, what advice
would you give to someone in a similar situation.
Speaker 3 (09:15):
I know not everybody has a partner that's going to
be in the room with them. I'm so grateful for
my husband that was there with me, and he, you know,
he's kind of the scribe in the background. He's able
to kind of go back to our notes and we
have like a shared kind of documenter notes tab. But
let's say you don't have that person. I think even
(09:36):
though within our healthcare system, sometimes you can feel like, okay,
you have fifteen minutes and keep it moving, really being
okay with taking up space and saying, oh, I'm so sorry,
can you reiterate that, or can you break this down
for me and then taking time to document it in
whatever format that you need. So for me, whether my
husband was there or not, I pull up my notes
(09:57):
tab and whether it's like, okay, at this in a
voice memo or let me type notes in real time.
I think that's something that I would encourage a patient
to do, is just to take up space and to
take notes.
Speaker 1 (10:10):
So, speaking of your detailed records, you've also kept that
of your symptoms and your experiences. Where did you learn
the importance of record keeping and how it empowers this
self advocacy, especially so early in your CIDP journey.
Speaker 3 (10:25):
I definitely attribute that to my mother actually, and like
I said, being in the healthcare system from such an
early age and just watching the way that my mother
would advocate for me, or she would have notes and
back then we didn't really have smartphone, so she would
physically take notes, or after we would meet with a physician,
(10:45):
she would kind of debrief and capture that information. And
also she would do a really great job of like,
I appreciate your opinion here as again the physician in
the room, but it's okay, I'm going to seek out
another opinion. So you just never know when it might
come up in a handy way where it's like, oh,
I have these receipts.
Speaker 1 (11:06):
Love it, so love it. Yes, I mean and so
awesome that your mom was such a great role model
and not only did you see her do it right,
but it became useful, yes, when she was then able
to say, well, excuse me, let me just refer back.
Speaker 3 (11:19):
Gosh, I'm so glad you asked me that question, because
I hadn't really thought about that until this moment. But
I'm just really grateful for her and the influence that
she's had in my life.
Speaker 1 (11:29):
When talking to your care team and advocating for yourself.
You mentioned before how you're kind of mindful of the
way that you present information to them so that you
pose it as a question so that they could answer.
So could you talk a little bit more about that.
Speaker 3 (11:42):
I think that I really tried to build a relationship
to try to get to know them as a person
as well to humanize them, because I think a lot
of times, as the patient, we almost make the physician
a many God, you know, it's like you're way up here,
I'm way down here. But when I almost try to
level set in the beginning trying to get to know them.
(12:04):
But whenever I'm able to build that connection somehow with them,
and I think that they almost feel even more willing
to be an advocate for me as well. And I
don't know, it may seem strategic, it's also genuine too,
and I've found that that has helped in building that rapport.
And then whenever I'm presenting new ideas, it doesn't come
off like, oh, I'm this pretentious patient.
Speaker 2 (12:27):
It's like, hey, like I'm really trying to grow in
my knowledge in this.
Speaker 1 (12:31):
How has building that relationship impacted the care you received?
Do you think I think that it's definitely increased because
they know that I'm going to follow up and that
I care deeply about what my care looks like. And
in addition, I've communicated to them even though here in
my home in town, you are my physician. I've also
(12:52):
sought out some additional support from a larger healthcare system
that's in a larger metroplex area. And so this is
not to compete with you, but I want you guys
to collaborate together. So, for example, there's a healthcare system
that's quite large and they're more research driven that I've
been able to get access to in the larger Dallas area,
(13:14):
and so I love that they're able to pull from
past studies and use that to inform the care that
they provide to me. And then I ask them to
communicate that to my I'm going to call them my
home base doctor, and I've tried to communicate that to
my doctors that are here in my community that like,
I'm so excited that you guys are working together, so
(13:35):
they don't feel like, oh, why are.
Speaker 2 (13:36):
You going over there?
Speaker 3 (13:37):
But again kind of hearkening back to what I said
about my mom and how she's like, it's okay, to
get a second opinion, and in fact, I'm sure trying
to frame it like this is to support your doctor
that's here that may not have access to all of
that research that's sharpening their skills as well and exposing
them to different medications or different approaches that they may
(13:58):
not have realized existed. Anyway, That's how I try to
look at it and approach it.
Speaker 1 (14:02):
It's wonderful because it really sounds like you're shifting that
power dynamic right to make it more equitable. And it's
not that they have more, you have more, but that
you are both in this together.
Speaker 2 (14:11):
Right.
Speaker 1 (14:12):
Yeah, I love that because again, we as patients right,
want our physicians, our care providers to see us as people. Right.
What you're saying is, let me see my providers as people.
Speaker 3 (14:22):
Yes, yeah, I really tried to and I may not
always strike gold on it, but I would say ninety
percent of the time I do. I can feel the
difference in the care that I receive if I put
a little bit of effort in that way too.
Speaker 1 (14:35):
Jasmin, you've posted about how being hospitalized and undergoing testing
can be overwhelming. How has your support system come into
play here? I really believe in the power of community.
And I'm just so grateful that my husband and I
we've chosen to live where we live.
Speaker 3 (14:54):
Neither of us are from this small town. My husband's
from Seattle, Washington, and I grew up as a military child,
so I've lived all over the place around the globe.
For us, our faith community is really important to us.
And the way that our church has provided I would
call it wrap around services for us, like they put
together a meal train for us, have written handwritten notes,
(15:16):
have just shown up in big and small ways. But
then in addition to that, I have incredible friends. One
of the things that I love about our friend group
we get together every single Sunday and we call ourselves
a Sunday Crew, and we do Sunday dinners together, we
have a game night, maybe we're watching a movie, and
so anyway, having that to look forward to as well
(15:37):
has just been incredible. And then I work in an
environment where they have been incredibly flexible and really portant
to me as well. You know this is not common,
and so anyway, I feel immensely blessed by my community.
Speaker 1 (15:53):
There's something powerful about not having to explain yourself about
being seen social support like Jasmine isn't just comforting for
people with chronic illness, it can be a protective factor
emotionally and physically. And is this something that you realized
was there after you needed them, after you moved there?
(16:14):
Just can you tell me a little bit more about
because I'm fascinated by this.
Speaker 3 (16:17):
Yeah, I knew that it existed before experiencing this health crisis.
My husband and I are very involved in the community.
We both really like to volunteer in the community and
serve on nonprofit boards, and so being able to see
from that perspective just the way that people in our
community show up for one another. For example, one of
the nonprofits that we've provided grants to is Meals on Wheels.
(16:40):
We were able to go in do a tour of
that facility and see all the great work they're doing
in the surrounding areas. And now here I am now
a patient at home and I'm receiving services from Meals
on Wheels and so this kind of full circle moment
has been awesome. So anyway, going back to your question,
absolutely I was able to reckickiz that before being a
(17:01):
recipient of all this love and care, and prior to
my being at this point we'll be back with more
untold stories after a quick break. As a global immunology
company committed to improving the lives of people suffering from
severe autoimmune conditions, our Genics is dedicated to shining a
(17:25):
light on resources that support the CIDP or chronic inflammatory
demilinating polynorropathy community. Shining through CIDP is a website that
aims to help those living with CIDP and their caregivers
by providing reliable information, helpful tips, and relatable stories of
both trial and triumph featuring people with CIDP like you.
(17:47):
Shining through CIDP features real stories, tips on emotional self care,
and new ideas to help navigate the CIDP journey. For
more information, visit Shining THROUGHCIDP dot com and now back
(18:09):
to untold stories. So, as someone who is still new
to your CIDP journey, and you've said before that this
has been a season of mourning and awakening, Yes, what
does resilience look like to you? I think resilience to
me means showing up with purpose even when things are hard,
(18:34):
like even when you feel like you're suffering, like really
trying to stay grounded in who you are no matter
what life throws at you. For me, purpose is rooted
in serving others and being present for others, educating others.
And so for me in the midst of these trials
and tribulations, still trying to communicate to others even while
(18:57):
I'm suffering, How can I still find joy in the
midst of all of this? And I don't know. For
me in this season, that's what resilience has looked like.
But even if I look over the course of my life,
trying to still press forward even when you're in the
middle of suffering, that's kind of how I would describe resilience.
Speaker 1 (19:13):
Yeah, I mean, it's not black or white, right, there
are times when you know you're really feeling it, and
you allow yourself to feel it, but you also recognize
that that's not everything, and that there's still these, like
you said, moments that you have that are able to
propel you forward and that you're not stuck in this
right And so when we think about that, what small
(19:35):
winds are you celebrating.
Speaker 3 (19:38):
Well, sometimes it's just opening my eyes in the morning.
Trying to capture those small winds was a challenge in
the beginning, because I'm definitely someone that's goal oriented, and
I even sometimes have a hard time celebrating my big wins.
Like let's say I accomplish something huge, I'm like, Okay,
what's the next thing? You know. I don't want to
be that way. I want to be able to even
celebrate this small winds. And I think going through this
(20:00):
season where I literally could not use my hands and feet,
you know, and I really had to rely on other
people to help me walk, to go to the restroom,
to bathe. All of that, I really had to take
a step back and recognize waking up in the morning,
taking one little step, holding a spoon in your hand
and bringing it to your mouth, that is a wind, Jasmine.
(20:21):
It's really helped me reframe what are winds. I think
everything is worth's celebrating. And I'm grateful that I've gone
through this experience because it's helped to ground me in
that fact.
Speaker 1 (20:32):
I also saw that you were at your sister's wedding,
and that seems like a big win that you want,
oh my God, to be able to travel there and
to dance. Can you talk a little bit about that.
Speaker 3 (20:41):
Yeah, So we found out that my sister got engaged
last year, but then of course, my health started to
decline back in October, and I was so afraid that
I would not be able to go to the wedding.
I really wanted to be able to celebrate with her
and be there with her, but the wedding was all
the way in Italy, and so I just remembered telling
my therapist, like, I want to be able to dance
(21:03):
at my sister's wedding, and this seems absolutely impossible because
I can barely move right now, but this is something
that I really want to do. And so each time
I would go to therapy, my inpatient rehab therapist and
also my outpatient rehab therapist, they would integrate some type
of exercise to help me get ready and increase my
(21:24):
strength to be able to dance at my sister's wedding.
And I was able to do it and it was
so awesome. So I was really proud of myself and
just again grateful to the team that helped get me there.
Speaker 2 (21:35):
That's a big one for sure.
Speaker 1 (21:36):
Yes, Josin, you've talked about your husband and your young son.
How have your health challenges brought you and your family
closer and shaped you as a mother.
Speaker 3 (21:47):
My husband has always been a very patient, kind, empathetic person.
That's what drew me to him even when we were dating.
But it takes it to another level when you have
a child involved, and being able to witness the ways
that he's been tender with me, and then seeing my
five year.
Speaker 2 (22:06):
Old model that has been so special. My son is high.
Speaker 3 (22:10):
Energy, you know, he's your typical five year old boy,
pretty rambunctious, but when he's with me, he's very patient
and takes his time with me, holds my hand. It's
precious to watch it, and there have been times where
I didn't think i'd be able to get up off
the couch and he'll look at me and my five
year old saying, Mommy, you can do hard things.
Speaker 2 (22:30):
You got what? I know? It's so sweet.
Speaker 3 (22:34):
It's making me emotional just thinking about it, and I'm
just I know that it's incredible, and I know that
I can attribute that to the father that my husband
is and the husband that he has been to me,
and I know that my son is watching that, and
so that's been really special. I think that prior to
this diagnosis and going through all of this, I was definitely,
(22:55):
like I said, very goal oriented, and I think that
I wasn't as present as I could have been. I
wasn't as tuned in as I could have been. And again,
being in a position where I'm literally hospital bound and
not able to move, I'm able to listen more. I'm slower,
and I think that's a good thing. I'm able to
be still, and my son, I think, was able to
(23:15):
tune into that. And I feel like I was a softer,
more present mother because of what has happened, and I
just I feel like it's brought us all so much
closer together, and so another positive thing that i can
pull from this experience, and I'm really grateful for that. Wow.
Speaker 1 (23:30):
I mean to even have that ability to reflect in
the way that you are, that's really powerful, Jasmine, to
just really kind of point that out that even though
you're going through really hard things, that you see something
that has come out of that that's positive. What do
you wish other people that are understood about this stage
of your diagnosis. I wish that people understood that it
(23:59):
can be incredibly isolating, for sure, especially because you know,
right now, even though I'm slowly regaining my ability to walk,
I still can't fill my feet. I'm not able to
be as independent as I was before. I can't drive.
Speaker 3 (24:15):
I have to rely on other people to pick me
up and take me places, and that's really that can
definitely take a toll on your mental health. And to
communicate to others what it looks like to try to
aspire towards identifying joy in each day. I think that
also I can acknowledge that this is a really challenging
(24:35):
season too, and I'm grateful for my community that has
shown up for me. Mental health is important and to
not have any shame around reaching out to a mental
health professional and to prioritize that from the beginning if
you can, because being in the hospital and kind of
that takes a toll already, and then when you get
(24:56):
home and you're not able to get out as much,
it's just that's really challenging.
Speaker 1 (25:01):
And so to recognize that you are going to have
a time to be able to deal with it, and
like you said, to be able to acknowledge that and
to reach out for help. It also seems to me
with what you said, Jasmine, that this is often invisible disability, right,
and people might look at you and you're like you
look fine, you know, yes, readily, you know whatever, Yeah,
to recognize that there's more going on.
Speaker 2 (25:21):
Mm hmm. Yeah.
Speaker 3 (25:23):
I definitely have hit some highs, but then I don't know.
Sometimes it hits me like a sack of bricks. Then
I'll hit those lows as well, And so for me,
I think trying to capture those feelings, whether in blog
post form or writing poetry, has been really helpful for me.
And circling back to what we talked about with communication
(25:44):
with your physicians and building partnerships with them, you mentioned
about leaving notes and also in the online.
Speaker 1 (25:53):
Portals as receiints josmen. What kind of resources do you
wish existed for newly diagnosed people.
Speaker 3 (26:00):
One of the reasons why I even started my Instagram
page was because I was desperate to find resources that
could showcase what it's like in the middle of walking
through this journey with CIDP, I came across a lot
of pages of individuals that were on the other side
of the diagnosis, and it's like, now they're running a marathon, right.
I don't want to discount that because I view that
(26:22):
as aspirational. I'm so grateful for that, but I wish
that there was more more capturing the middle of the journey,
the ugly side of it, the bad and the ugly.
Had a friend that encouraged me and said, Hey, like,
while you're in the middle of this and I know
that you really want to be able to capture your progress,
why not share it with people who are supporting you.
You know, I'm sharing things on my social media page
(26:44):
that i'm Sometimes i look back, I'm like, I can't
believe I shared that. But I'm also grateful because I
you know, there are people who reach out to me
privately that are like, I'm so glad you talked about
depersonalization or derealization and what it feels like to feel
dissociated from yourself when you're in the hospital, something that
not many people talk about, or those topics that are
not sexy topics, but they're real, and so I wish
(27:07):
there was more of that.
Speaker 1 (27:11):
This moment was pivotal for Jasmine. When she couldn't find
the stories that reflected the complicated middle of her journey,
she started sharing her own. Her Instagram became a form
of self advocacy, a way to stay connected to her
care and create and build the kind of community she
wished she'd found for herself. Sooner. Absolutely, And it sounds
like that's what you're providing, because again, it provides people
(27:34):
with those sort of steps along the way that are
really the hard part. Yeah, I want to just reflect back.
You said you've change as a person, before you said
you felt like you've shed a skin. Could you talk
a little bit more about that.
Speaker 3 (27:47):
Yeah, it's hard to explain or to articulate. I can
only describe it as in some ways, I was wearing
a mask like it wasn't that, it wasn't me, but
I felt like I almost like a robot, like this
is the formula that I need to follow. Society says
you have to follow this formula in order to achieve
these things. And I think I'm coming out on the
(28:08):
other side softened a little bit and not feeling like, oh,
I need to wear this mask. Like No, I feel
like I can live more authentically, and if that means
I'm slowing down or I'm not showing up to all
the things, or you know, I feel like I'm a
little more intentional now. I'm a little less focused on
what society is trying to project onto me and more
(28:30):
in tune with what my body needs, what my family needs,
and being okay with that and not trying to compare
compare exactly. Yeah, I think I struggled a lot with
that before, and I just feel more settled and grounded
in who I am and I'm grateful for that absolutely.
Speaker 1 (28:49):
And it sounds like to me, Jusmine, that idea of
letting yourself feel those emotions is what propelled you to
that next phase, Like you said, that sort of in
between where you then have come out on the other side,
where you have shed your skin, where you have slowed down,
where you've become more present, and like that's kind of
what you needed to do to get to where you
are now. Yes, oh, Jasmine, this has been such a
(29:12):
great conversation. Thank you so much.
Speaker 2 (29:14):
Yay, I love this so much, Martine.
Speaker 3 (29:16):
And uh, you're more than welcome to join our Sunday
crew as long as you bring food so.
Speaker 2 (29:24):
Viciously.
Speaker 1 (29:25):
This is yes, that's it's a community is so important
and it's such like one of those small things where
you know, you feel like, you know, oh, I'm going
to you know, have a kid, and we're gonna have
to do these things. But it's like, no, why don't
you just slow down and like talk to people and
like hang out and plan what you're gonna.
Speaker 3 (29:40):
Eat as you know, just be yes, just be Thank you, Martine,
I appreciate that.
Speaker 1 (29:49):
A huge thank you to Jasmine for sharing not just
her story, but her strength. Her journey is a reminder
to all of us that self advocacy isn't just about
speaking up. It's about knowing your body, trusting your instincts,
and showing up for yourself in ways you never imagined possible.
Whether you're at the start of your own journey or
(30:09):
deep in the middle of it, I hope Jasmine's resilience
reminds you that your voice matters and that you're never alone.
We'll see you next time on Untold Stories. Untold Stories
Life with a Severe autoimmune condition is produced by Ruby's
Studio from iHeartMedia in partnership with Argenix and hosted by
(30:30):
me Martine Hackett. Our executive producer is Yvonne Shehan. Our
producer is Leah Sutherland. This episode was written and produced
by Diana Davis. Post production for this season is by
Tom Sullivan and Paul Videlen's of Audiography
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