August 20, 2025 • 31 mins
Jamilah went from daily dance rehearsals to struggling to move through her own home, while her symptoms were continuously dismissed. In this episode, hear how finally getting a diagnosis changed everything: from relearning her body and rebuilding relationships to finding connection again in a whole new way of life.
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Speaker 1 (00:07):
Welcome back to Untold Stories Life with a severe autoimmune condition.
I'm Martine Hackett. Thanks for joining me. This season, we're
exploring strength, resilience, and the power of self advocacy for
those living with MG or CIDP. For many living with
these conditions, the path to diagnosis is long, isolating, and
often marked by being misunderstood or dismissed. Today's guest, Jamilla,
(00:32):
knows that journey well. A dancer and a creative spirit,
she went from daily rehearsals to a nursing home without answers.
But her story isn't just about survival. It's also about
relationships and connection. Jamilla had to relearn how to move
through the world in a new reality and how to
rebuild closeness with herself and the people around her. Because,
(00:55):
as you'll hear, healing isn't just physical. It's about finding
strength in community as you learn how to belong again.
Let's get into it, Hi, Jamila, it's so great to
see you today. Hi, thank you so much for having me. Jamila.
When you first started experiencing symptoms, you were still dancing,
you were working full time and running your business. Looking back,
(01:19):
what was it like trying to make sense of that
shift in your body.
Speaker 2 (01:24):
The first thought that you're thinking is my life is
over now because my body is deteriorating. I sat for
two months in my room just mad at the world
and thinking what am I going to do? Who's going
to be there for me because I'm so independent? And
are my friends going to stick around?
Speaker 1 (01:44):
Like?
Speaker 2 (01:44):
It was a lot to think about and sad, very
very very sad.
Speaker 1 (01:51):
Did others advocate for you or help you to advocate
for yourself more effectively?
Speaker 2 (01:57):
My mom was one of of my biggest advocates, making
sure that, you know, my doctors were doing the tests
that needed to be done. If anything seemed wrong or
out of place, or people weren't taking care of me correctly,
she was on it. You know, a mom's love like that,
(02:17):
that's very much powerful. So she was very very hands
on in my process and I appreciate her so much for.
Speaker 1 (02:26):
That amazing So while that was happening, did you ever
question yourself or the process you were going through?
Speaker 2 (02:34):
A lot? I questioned whether I was going to be
able to even get through this, Like I did some
research about not necessarily the disease itself, but more so
like neuropathy because I was really the only thing that
came up because of what I was feeling. But I
didn't know it would be this severe. So I was
(02:58):
just thinking, am I going to be able to have
a full life? Am I going to be able to
go back to the things that I love to do?
Am I going to be in a nursing home or
with people for the rest of my life and they're
taking care of me and I can't take care of myself.
Am I strong enough to get through it? There were
(03:20):
a lot of times where I just wanted to say,
forget it and this is just going to be my life.
I'm glad I didn't, but it was very, very difficult
for me to think highly of myself at that time
because you're in such a low position, if that makes.
Speaker 1 (03:41):
Sense, of course.
Speaker 2 (03:42):
Yeah, And it's just hard.
Speaker 1 (03:45):
It's super hard, yeah, Jimalie. You said on some initial
visits to your doctor you were told to just stretch,
and how absurd that felt because at that time you
could even walk. Can you tell us about that moment
and what it revealed to you about the medical system.
Speaker 2 (04:01):
It kind of just felt like, I guess if you
just go home and try to do these things on
your own, then maybe it'll help out a little bit,
and I get that, but at the same time, it's
not really helpful. And it's understandable that they can only
do so much, but I still need help. I still
(04:21):
am trying to figure out what's going on, and maybe
the tests that were done weren't enough. Sometimes I think
about it and I feel like more questions could have
been asked. I will say that you're trying to tell
them what's going on with you, but you don't really
understand what's going on with you, and they're just putting
(04:43):
it off and they're like, Okay, well, you know, if
you do this, then you'll be fine. And it's like,
I literally cannot stand up on my own. How are
you telling me that just do this and you'll be fine.
That doesn't make sense. So it's like I'm going through
all of these different avenues and I'm just frustrated because
(05:05):
why is nobody taking me seriously.
Speaker 1 (05:10):
Jamilla's experience is far from uncommon, as we've heard from
so many of our guests, it could take years to
finally receive an accurate diagnosis. In fact, studies show that
these patients with rare diseases often see eight different doctors
and receive two to three misdiagnoses before getting the right one.
(05:30):
That's why community matters so much. Sharing stories, comparing notes,
and realizing you're not alone can be just as powerful
as a diagnosis, sometimes more. And so how did that
shape and the support or the lack of support that
you then received from others.
Speaker 2 (05:50):
It made me put my faith into the people that
I knew would be there for me, and it really
made me have to discern between the people who I
thought were there for me, but they're not. And luckily,
I didn't have too many instances of that where people
(06:14):
either left me high and dry or they weren't there
for me, or things of that nature. So I'm very
blessed and fortunate that I didn't have to go through
that extensively. And even so, I still think about the
people who don't get that kind of support, and it's
just it sucks that you even have to think about that.
(06:37):
You know, you're going through all of this stuff, and
now I have to think about the outside forces of
are people going to support me? Are people going to
help me through all of it? Like it's right on
top of everything exactly. It's just too much it's too much.
Speaker 1 (06:52):
And can you think of a specific example of when
someone did show up for you?
Speaker 2 (06:59):
Yeah, oh, oh gosh, there's plenty. My dad, in the
first stages of me losing my mobility, he kind of
just took the initiative. He didn't live near me at
the time. He lived like a couple of blocks away
from me, but he would come at least two to
three times a week, would bring me food, take my
(07:24):
laundry so that it could be washed. He would go
check my mail because I couldn't even go down the
alleyway to the mailbox. He would do a lot for me.
And because I was so independent, and I would be
on the phone and I would talk to him and
I would tell him what was going on. You know,
you don't sometimes you don't really believe it until you
see it. And it was that type of thing where
(07:45):
when he saw how I couldn't walk around I had
to hold on to walls just to do anything, he
definitely took the initiative to help out as best as
he can. He would take me to the hospital after work,
you know, doing the things that he could within the
parameters that he had. So really, just my parents are
(08:07):
the main ones that took a lot of initiative in
my process.
Speaker 1 (08:12):
What Jamila describes here is another powerful reminder of the
importance of community. These moments of showing up become the
foundation for emotional healing, which is just as vital as
physical recovery. And so speaking of that, your mom and
a neurologist at her hospital helped you to get the
care that you needed. How did that feel to be heard?
Speaker 2 (08:34):
I felt like the whole entire world was lifted off
of my shoulders because for my neurologists to finally do
the test that I needed, it just felt great. I
think when everybody left the room, I just cried because
(08:55):
I literally was like, oh my God, thank you because
finally you gave me somebody who can figure out what's
going on with me, and now I can hit the
ground running and I can get back into who I
was before, or at least part of it, and go
back to somewhat of a normal life, because that's really
all that I was looking for at the time. It
(09:18):
was just something to bring me back to my normalcy.
It was awesome.
Speaker 1 (09:23):
So yeah, and you also had a neuromuscular specialist who
you said changed your life. Yes, I love her so much.
Speaker 2 (09:33):
She's been my specialist for the last three years now.
She is the one that put me on my regular
regimen that I'm currently on with my treatment, and she
gave the confirmation of the CIDEP and she basically was,
(09:55):
just like I've had plenty of patients that I've had this,
You'll be able to again. It might take some time,
but as long as you do what you need to do,
you'll be able to get there. And if it wasn't
for her encouragement, especially as a healthcare professional, I wouldn't
(10:16):
be where I am in this capacity of what I'm
able to do now. So I'm very grateful for her.
Speaker 1 (10:25):
Wonderful And so what made that relationship different from the
earlier medical experiences that you had just.
Speaker 2 (10:31):
The personality alone. I yeah, Oh my gosh, I love
her so much. Like I said, the encouragement, and she
showed a lot of attentiveness to me. Any questions that
I had, She answers everything that I need answered. She
(10:52):
even made a very nice gesture when it came to
my dad starting a fundraiser for me, So that was
really cool. Like it showed that she even though she's
my doctor, she's still a person at the end of
the day. And I love having relationships like that because
sometimes you need that, you know, yeah and yeah, and
(11:15):
it makes it so much better for your recovery because
you have somebody that's willing to do for you and
willing to also advocate for you because she does advocate
for me too.
Speaker 1 (11:28):
Jamela, tell me once you were diagnosed, how did your
understanding of CIDP evolve?
Speaker 2 (11:35):
It opened a new perspective as to autoimmune diseases because
I never knew what an autoimmune disease was, and especially
knowing that this is a rare autoimmune disease, that was like,
okay to be chosen for a rare disease, Okay, girl.
(11:56):
It definitely opened my eyes to a different community, and
especially now being part of the disabled community, that's a
whole different world that I never thought that I would
have experienced so early on. And it showed me that
(12:17):
there's a lot of rare diseases in the world, but
nobody knows about it because nobody talks about it. And
now I have to how think about how I can
move about in the world and talk about this more
and show it more so that we can start opening
the conversation of rare diseases and doing more research on
(12:40):
that as well.
Speaker 1 (12:40):
Yeah, and you talked about being now a part of
the people with disabilities community. What did you learn by
being part of that community?
Speaker 2 (12:49):
We can do anything? That was the most exciting part,
because people look at people with disabilities and it's like,
oh my gosh, they're in a wheelchair, Oh my gosh,
they need this something gosh. You get kind of that
weird sympathetic type of tone to it, and then actually
experiencing it. And I'm experiencing all of these things of
(13:12):
people looking at me in my wheelchair and almost doubting me,
thinking that I can't do certain things, and it's like,
but I can, and I'll show you that I can.
I have a whole different respect for people with disabilities
because I'm still a baby in in this community. But
(13:32):
it gave me a whole different outlook on how to
look at people with disabilities, like, you know, if they
need help, obviously help them. But if they don't, then
let them be like they can do things, you know.
So it's really cool to be immersed in it.
Speaker 1 (13:52):
For many, like Jamilla, finding community after diagnosis is a
second chance at life, a space to not only be scene,
but to thrive. That connection is a vital part of
any treatment plan and has been proven to help healing.
You mentioned changes that happened through your journey. Did you
notice changes in how people treated you after you had
(14:14):
your diagnosis as compared to before. Oh?
Speaker 2 (14:17):
Absolutely, I got a lot of over protectiveness of me. People,
especially like people close to me, just like, are you
sure you want to go do that? Are you sure
you want to do this? Are you sure you would? Yes?
Yes I am. And that's obviously because they care. And
(14:38):
I had to really like drive into my family and
my best friends especially. You know, I might be in
a wheelchair, but there's still a lot of things that
I know I can do. I just got to figure
out how to adapt to it. That's all.
Speaker 1 (15:02):
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 light on resources that support the CIDP,
(15:22):
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. Shining through CIDP features real stories, tips
(15:44):
on emotional self care, and new ideas to help navigate
the CIDP journey. For more information, visit Shining THROUGHCIDP dot com.
And now back to untold stories. And So after your diagnosis,
(16:08):
did you lose any relationships?
Speaker 2 (16:11):
Honestly no, that was like the best thing that I
didn't lose anybody and amazing. Yeah, And I remember having
this conversation with my best friend and he was just like,
you know, because of the person that you are to everybody,
you're always there for everybody. You help out as much
(16:32):
as you possibly can. You're very encouraging. Why would we
leave you high and dry when you're in your time
of need. It made me so emotional because I really
do have people that supported me through everything and me
getting back into dance. It's a lot of support that
I've gotten over the years, and I'm just really really
(16:54):
glad that I was able to have that, and I'm
very appreciative.
Speaker 1 (17:00):
Jamilla. You spent over a year in a rehab center,
in a nursing home, learning how to eat and to
bathe and more. How did that experience shape you?
Speaker 2 (17:12):
Oh man, it was very humbling.
Speaker 1 (17:18):
Yea.
Speaker 2 (17:18):
I will say that to have people coming in your
room just to turn you, change, you, bathe, you do
all of this stuff and they're like touching you, and
you don't want to be touched. I went through a
period where I was just trying to figure out, how
can I do this on my own? I don't want
(17:40):
anybody touching me. I don't want to be bathed. I
don't want to do this. I don't want to do
so it made me understand that sometimes you're gonna need
the help.
Speaker 1 (17:50):
Yeah, take the help.
Speaker 2 (17:52):
You have to take the help. Sometimes it's okay to
not have to do things on your own.
Speaker 1 (18:00):
You also mentioned losing nearly one hundred pounds from depression
and lack of nutrition. How did you start rebuilding emotionally?
Speaker 2 (18:08):
Even now, I'm still in the process of rebuilding myself. Honestly,
I can say it was insane. It was It was
insane because I'm fighting my feelings of the world is
crashing down around me, like it's a lot of heavy
(18:30):
feelings that you're having to deal with. And like I said,
my dad was bringing me food, and he was bringing
me the things that he thought would be able to
sustain me. So it was a lot of salads. It
was a lot of turkey cheese sandwiches, ham and cheese
san wiches, like different things like that. And to a
point where I was only eating the salads because it
(18:50):
was difficult for me to even make a sandwich, not
even being able to lift up a gallon of water
or a gallon of apple because it's too heavy. I
dealt with a lot of internal are you going to
get up and fight this or are you just going
to succumb to it? And having my degree program in
(19:14):
psychology it helped me a lot. Wow, yeah, Like who
knew my degree would help me in the process, And
I'm discovering this is what we were talking about in class.
So now having to apply all of those things and
shifting to Okay, how can I give myself some positive
(19:38):
self talk? How can we do this? How can we
do that? And I think that really got me through
it is because I'm such a naturally bubbly person. I
had to dive into that completely. And when people came
in the room.
Speaker 1 (19:55):
It was always hi.
Speaker 2 (19:56):
Hell, you know you like the famous th fake it
till you make it. I faked it, yeah, every single day,
and it worked, and it worked. I made sure that
I was at least pretending to be the happiest person
I could be. The people that were there for me,
I never made them feel like the world is gloom
(20:18):
and doom and there's a dark cloud over me every
day and life is terrible. I never try to exude
that because, again, I want people to feel comfortable around me.
And when that happens, you tend to feel a little
bit different about yourself.
Speaker 1 (20:36):
Yeah, and it turns out people maybe treat you better too.
Speaker 2 (20:39):
Yeah, And you get things and it helped, and it
helps to really build your confidence up a lot more so.
I use that tactic the whole entire time. I still
do it now, but it's a little less fake now.
It's very d because I made it and it's very
(21:00):
real and I am very happy. I exude positivity everywhere
I go. My chair is literally the most colorful thing
that you could look at. So that helps me to
be who I am and not be so sad all
the time.
Speaker 1 (21:17):
And speaking of that, how did it feel to return
to dance class.
Speaker 2 (21:22):
Oh man, I was nervous, especially because I'm in New
York and now I'm having to come into a space
that I've never danced in before, in a new body
and a mechanism that I've never danced in before. I've
seen wheelchair dancers before, but I would think to myself, like,
that's a lot of work to have to turn and bopara,
(21:47):
and then to do it, it was like, oh wow, okay.
And receiving the feedback from other people and the environment
that they provided for me where I could just be
who I am and just do what I need to
do and nobody is looking at me weird. We're just
(22:08):
trying to learn the moves. We're not worried about what
each other is doing. So it felt really really good
to be able to be in this space where I
feel so comfortable.
Speaker 1 (22:20):
It felt awesome, wonderful. And so how were you able
to acknowledge your limitations that, like you mentioned while still
finding joy in movement? Yeah?
Speaker 2 (22:30):
I take it day by day. But if there's certain
limitations on certain moves that I can do, do I
have to modify how I interpret a turn and a routine.
Do I have to position myself a certain way so
that the choreography looks remotely similar to what the teacher
(22:53):
was explaining to us. It's a lot of modification on
the spot. But it's a challenge that I'm willing to
accept because I love a challenge. I love to figure
out different things and how can I modify it? How
can I do this? How can I do that? So
being put in that environment really gave me a chance
(23:14):
to show myself in a different way other than I
can do what I need to do regardless of being
in my wheelchair. Now, how can I expand on that?
You know?
Speaker 1 (23:25):
So that's what that was, Jamal. Tell me what drives
that sense of joy for you? Now?
Speaker 2 (23:32):
Everything? I look at life now as a means of
we're here and things are going to happen, and sometimes
those things are going to happen and you can't change that.
So how are you going to adapt to that? And
are you up for what it is that you have
(23:53):
to go through to get through what you need? So
I look at life now, It's not dreary for me anymore.
It's not a chore. I don't really have to run
the rat race anymore of having to like work all
the time and make sure I make my money so
that I can live and do the things that I
(24:14):
need to do. Like with a little bit that I have.
I'm very appreciative of it, and I'm happy, and I
try to put as much happiness into every situation as
much as I possibly can so, and it also helps
me to be more compassionate towards other people too, because
you know what it's like me, because I know what
(24:34):
it's like. It's all just giving me such a much
better perspective.
Speaker 1 (24:40):
Losing your sister while losing the body that you once knew,
added another layer of grief. What did you learn about
love and loss and your relationships with those around you
during that time?
Speaker 2 (24:54):
A lot it was very difficult because she was also
battling stomach cancer and I used to joke around with
her and it was like, you know, this is kind
of cool. We were going through our things together, and
then when she passed on, it was obviously devastating, but
it definitely taught me that again, life is just going
(25:18):
to happen, and the people around you that are there
to support you are the ones that matter the most.
And I don't take my time with them for granted,
so I appreciate them and it helped me to love
a little bit harder.
Speaker 1 (25:37):
Jamala, tell me what are some of the ways you
started celebrating your winds big and small with yourself and others.
Speaker 2 (25:43):
Anybody who knows me knows that I love food, so
I'm always treating myself in that way.
Speaker 1 (25:52):
Okay.
Speaker 2 (25:53):
I like to express myself in my clothes. And you
go from living in a nursing home wearing sweatpants and
T shirts all the time. That's not cute.
Speaker 1 (26:03):
And I can do better, and I could do better,
and I like to look cute.
Speaker 2 (26:08):
So I started getting back into what I like to
wear and figuring out like, okay, because my body was
fluctuating with the medications, Sometimes your weight fluctuates, so you
have to figure out what it is that fits what
doesn't fit. And I'm figuring out how to use my
fashion with that. Again, I have my chair, like everything
(26:32):
that comes to how I present myself outwardly. If you
see me looking better, you know I'm doing better. Basically,
it's gonna be it's gonna be real obvious. And like
I said, I started getting back into dance. I filmed,
I did a visual from my nursing home literally on
(26:52):
FaceTime having to I can't teach anybody how to do
the dance moves that I'm looking to do, so I'm
having to explain it and with words and over face
time and having to manage it again over the phone.
And people are doing the things like to be able
to do certain things like that and still put out
(27:15):
my art. That's all I want to do is create
or I celebrate those things in my creation as well.
I just continue doing what it is that I want
to do.
Speaker 1 (27:26):
And just expressing yourself.
Speaker 2 (27:27):
Yeah, I celebrate by expression. I celebrate by my work.
I celebrate just by continuing to do what it is
that I want to do. And that's pretty much all
that is.
Speaker 1 (27:38):
I mean, you are finally doing things on your own terms.
How do you define strength today?
Speaker 2 (27:45):
Wow, I've never been asked that question. I define it
now as strength is pulling from every single resource that
you could pass use. And strength also comes from not
just within yourself, but within the community that you have
(28:08):
around you, because sometimes you don't have anything and you
have to rely on those people around you. So I
get a lot of my strength from the people around me,
and it's just been helpful and I create all of
these pillars from people, from myself, from the things that
(28:28):
I do.
Speaker 1 (28:30):
It.
Speaker 2 (28:30):
There's there's a lot of facets to what strength is.
There's not just one particular thing, and it's not physical,
it's it's everything encompassed into one big, overall concept. So yeah,
it's a lot, but it's worth it. It's very worth it.
Speaker 1 (28:53):
And it sounds like the way that you have discovered
what that definition is is just by living through it.
Nothing to it but today right exactly, Jamila, I just
want to say thank you so much for your joy
and your ability to sort of find silver linings where
people would not have found them, that is for sure.
Speaker 2 (29:13):
I'm very happy that I was able to do this
and shed some light on the possibilities of coming out
on the other side and being maybe even better than
who you used to be. And that's like my biggest
thing also that I've learned is I can be better
than who I was before, and I feel much better
(29:34):
than what I used to feel.
Speaker 1 (29:36):
So you know, sometimes the IDP is not such a
bad thing.
Speaker 2 (29:39):
And I mean that in a sense of your outlook
has to change, and your outlook has to be Yes,
I'm going through this but if I have other people
that are telling me that I can come out of it,
then what radical idea what I have than to believe
(29:59):
in myself and come out.
Speaker 1 (30:00):
Of it, especially when you know the proof is right
in front of you. You did it and you're doing
it exactly.
Speaker 2 (30:06):
So yeah, we're moving and grooving.
Speaker 1 (30:10):
Thank you so much for your time today, and what
a joy and a pleasure it's been talking to you.
Speaker 2 (30:16):
Absolutely. Thank you again for having me. I'm just so again,
I'm so grateful.
Speaker 1 (30:25):
We can't thank Jamilla enough for sharing her story and
her positivity with us today. She's proof that healing isn't
something we do alone. It's about connection, trust, leaning on
people around us, and finding your way back to community
after everything has changed. I hope Jamilla inspired you and
reminded you that even in your darkest days, you're never alone.
(30:48):
Reach out. There's a community waiting for you. 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 me Martin Hackett.
(31:09):
Our executive producer is Yvonne Shehen. 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
Videlin's of Audiography
Welcome back to Untold Stories Life with a severe autoimmune condition.
I'm Martine Hackett. Thanks for joining me. This season, we're
exploring strength, resilience, and the power of self advocacy for
those living with MG or CIDP. For many living with
these conditions, the path to diagnosis is long, isolating, and
often marked by being misunderstood or dismissed. Today's guest, Jamilla,
(00:32):
knows that journey well. A dancer and a creative spirit,
she went from daily rehearsals to a nursing home without answers.
But her story isn't just about survival. It's also about
relationships and connection. Jamilla had to relearn how to move
through the world in a new reality and how to
rebuild closeness with herself and the people around her. Because,
(00:55):
as you'll hear, healing isn't just physical. It's about finding
strength in community as you learn how to belong again.
Let's get into it, Hi, Jamila, it's so great to
see you today. Hi, thank you so much for having me. Jamila.
When you first started experiencing symptoms, you were still dancing,
you were working full time and running your business. Looking back,
(01:19):
what was it like trying to make sense of that
shift in your body.
Speaker 2 (01:24):
The first thought that you're thinking is my life is
over now because my body is deteriorating. I sat for
two months in my room just mad at the world
and thinking what am I going to do? Who's going
to be there for me because I'm so independent? And
are my friends going to stick around?
Speaker 1 (01:44):
Like?
Speaker 2 (01:44):
It was a lot to think about and sad, very
very very sad.
Speaker 1 (01:51):
Did others advocate for you or help you to advocate
for yourself more effectively?
Speaker 2 (01:57):
My mom was one of of my biggest advocates, making
sure that, you know, my doctors were doing the tests
that needed to be done. If anything seemed wrong or
out of place, or people weren't taking care of me correctly,
she was on it. You know, a mom's love like that,
(02:17):
that's very much powerful. So she was very very hands
on in my process and I appreciate her so much for.
Speaker 1 (02:26):
That amazing So while that was happening, did you ever
question yourself or the process you were going through?
Speaker 2 (02:34):
A lot? I questioned whether I was going to be
able to even get through this, Like I did some
research about not necessarily the disease itself, but more so
like neuropathy because I was really the only thing that
came up because of what I was feeling. But I
didn't know it would be this severe. So I was
(02:58):
just thinking, am I going to be able to have
a full life? Am I going to be able to
go back to the things that I love to do?
Am I going to be in a nursing home or
with people for the rest of my life and they're
taking care of me and I can't take care of myself.
Am I strong enough to get through it? There were
(03:20):
a lot of times where I just wanted to say,
forget it and this is just going to be my life.
I'm glad I didn't, but it was very, very difficult
for me to think highly of myself at that time
because you're in such a low position, if that makes.
Speaker 1 (03:41):
Sense, of course.
Speaker 2 (03:42):
Yeah, And it's just hard.
Speaker 1 (03:45):
It's super hard, yeah, Jimalie. You said on some initial
visits to your doctor you were told to just stretch,
and how absurd that felt because at that time you
could even walk. Can you tell us about that moment
and what it revealed to you about the medical system.
Speaker 2 (04:01):
It kind of just felt like, I guess if you
just go home and try to do these things on
your own, then maybe it'll help out a little bit,
and I get that, but at the same time, it's
not really helpful. And it's understandable that they can only
do so much, but I still need help. I still
(04:21):
am trying to figure out what's going on, and maybe
the tests that were done weren't enough. Sometimes I think
about it and I feel like more questions could have
been asked. I will say that you're trying to tell
them what's going on with you, but you don't really
understand what's going on with you, and they're just putting
(04:43):
it off and they're like, Okay, well, you know, if
you do this, then you'll be fine. And it's like,
I literally cannot stand up on my own. How are
you telling me that just do this and you'll be fine.
That doesn't make sense. So it's like I'm going through
all of these different avenues and I'm just frustrated because
(05:05):
why is nobody taking me seriously.
Speaker 1 (05:10):
Jamilla's experience is far from uncommon, as we've heard from
so many of our guests, it could take years to
finally receive an accurate diagnosis. In fact, studies show that
these patients with rare diseases often see eight different doctors
and receive two to three misdiagnoses before getting the right one.
(05:30):
That's why community matters so much. Sharing stories, comparing notes,
and realizing you're not alone can be just as powerful
as a diagnosis, sometimes more. And so how did that
shape and the support or the lack of support that
you then received from others.
Speaker 2 (05:50):
It made me put my faith into the people that
I knew would be there for me, and it really
made me have to discern between the people who I
thought were there for me, but they're not. And luckily,
I didn't have too many instances of that where people
(06:14):
either left me high and dry or they weren't there
for me, or things of that nature. So I'm very
blessed and fortunate that I didn't have to go through
that extensively. And even so, I still think about the
people who don't get that kind of support, and it's
just it sucks that you even have to think about that.
(06:37):
You know, you're going through all of this stuff, and
now I have to think about the outside forces of
are people going to support me? Are people going to
help me through all of it? Like it's right on
top of everything exactly. It's just too much it's too much.
Speaker 1 (06:52):
And can you think of a specific example of when
someone did show up for you?
Speaker 2 (06:59):
Yeah, oh, oh gosh, there's plenty. My dad, in the
first stages of me losing my mobility, he kind of
just took the initiative. He didn't live near me at
the time. He lived like a couple of blocks away
from me, but he would come at least two to
three times a week, would bring me food, take my
(07:24):
laundry so that it could be washed. He would go
check my mail because I couldn't even go down the
alleyway to the mailbox. He would do a lot for me.
And because I was so independent, and I would be
on the phone and I would talk to him and
I would tell him what was going on. You know,
you don't sometimes you don't really believe it until you
see it. And it was that type of thing where
(07:45):
when he saw how I couldn't walk around I had
to hold on to walls just to do anything, he
definitely took the initiative to help out as best as
he can. He would take me to the hospital after work,
you know, doing the things that he could within the
parameters that he had. So really, just my parents are
(08:07):
the main ones that took a lot of initiative in
my process.
Speaker 1 (08:12):
What Jamila describes here is another powerful reminder of the
importance of community. These moments of showing up become the
foundation for emotional healing, which is just as vital as
physical recovery. And so speaking of that, your mom and
a neurologist at her hospital helped you to get the
care that you needed. How did that feel to be heard?
Speaker 2 (08:34):
I felt like the whole entire world was lifted off
of my shoulders because for my neurologists to finally do
the test that I needed, it just felt great. I
think when everybody left the room, I just cried because
(08:55):
I literally was like, oh my God, thank you because
finally you gave me somebody who can figure out what's
going on with me, and now I can hit the
ground running and I can get back into who I
was before, or at least part of it, and go
back to somewhat of a normal life, because that's really
all that I was looking for at the time. It
(09:18):
was just something to bring me back to my normalcy.
It was awesome.
Speaker 1 (09:23):
So yeah, and you also had a neuromuscular specialist who
you said changed your life. Yes, I love her so much.
Speaker 2 (09:33):
She's been my specialist for the last three years now.
She is the one that put me on my regular
regimen that I'm currently on with my treatment, and she
gave the confirmation of the CIDEP and she basically was,
(09:55):
just like I've had plenty of patients that I've had this,
You'll be able to again. It might take some time,
but as long as you do what you need to do,
you'll be able to get there. And if it wasn't
for her encouragement, especially as a healthcare professional, I wouldn't
(10:16):
be where I am in this capacity of what I'm
able to do now. So I'm very grateful for her.
Speaker 1 (10:25):
Wonderful And so what made that relationship different from the
earlier medical experiences that you had just.
Speaker 2 (10:31):
The personality alone. I yeah, Oh my gosh, I love
her so much. Like I said, the encouragement, and she
showed a lot of attentiveness to me. Any questions that
I had, She answers everything that I need answered. She
(10:52):
even made a very nice gesture when it came to
my dad starting a fundraiser for me, So that was
really cool. Like it showed that she even though she's
my doctor, she's still a person at the end of
the day. And I love having relationships like that because
sometimes you need that, you know, yeah and yeah, and
(11:15):
it makes it so much better for your recovery because
you have somebody that's willing to do for you and
willing to also advocate for you because she does advocate
for me too.
Speaker 1 (11:28):
Jamela, tell me once you were diagnosed, how did your
understanding of CIDP evolve?
Speaker 2 (11:35):
It opened a new perspective as to autoimmune diseases because
I never knew what an autoimmune disease was, and especially
knowing that this is a rare autoimmune disease, that was like,
okay to be chosen for a rare disease, Okay, girl.
(11:56):
It definitely opened my eyes to a different community, and
especially now being part of the disabled community, that's a
whole different world that I never thought that I would
have experienced so early on. And it showed me that
(12:17):
there's a lot of rare diseases in the world, but
nobody knows about it because nobody talks about it. And
now I have to how think about how I can
move about in the world and talk about this more
and show it more so that we can start opening
the conversation of rare diseases and doing more research on
(12:40):
that as well.
Speaker 1 (12:40):
Yeah, and you talked about being now a part of
the people with disabilities community. What did you learn by
being part of that community?
Speaker 2 (12:49):
We can do anything? That was the most exciting part,
because people look at people with disabilities and it's like,
oh my gosh, they're in a wheelchair, Oh my gosh,
they need this something gosh. You get kind of that
weird sympathetic type of tone to it, and then actually
experiencing it. And I'm experiencing all of these things of
(13:12):
people looking at me in my wheelchair and almost doubting me,
thinking that I can't do certain things, and it's like,
but I can, and I'll show you that I can.
I have a whole different respect for people with disabilities
because I'm still a baby in in this community. But
(13:32):
it gave me a whole different outlook on how to
look at people with disabilities, like, you know, if they
need help, obviously help them. But if they don't, then
let them be like they can do things, you know.
So it's really cool to be immersed in it.
Speaker 1 (13:52):
For many, like Jamilla, finding community after diagnosis is a
second chance at life, a space to not only be scene,
but to thrive. That connection is a vital part of
any treatment plan and has been proven to help healing.
You mentioned changes that happened through your journey. Did you
notice changes in how people treated you after you had
(14:14):
your diagnosis as compared to before. Oh?
Speaker 2 (14:17):
Absolutely, I got a lot of over protectiveness of me. People,
especially like people close to me, just like, are you
sure you want to go do that? Are you sure
you want to do this? Are you sure you would? Yes?
Yes I am. And that's obviously because they care. And
(14:38):
I had to really like drive into my family and
my best friends especially. You know, I might be in
a wheelchair, but there's still a lot of things that
I know I can do. I just got to figure
out how to adapt to it. That's all.
Speaker 1 (15:02):
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 light on resources that support the CIDP,
(15:22):
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. Shining through CIDP features real stories, tips
(15:44):
on emotional self care, and new ideas to help navigate
the CIDP journey. For more information, visit Shining THROUGHCIDP dot com.
And now back to untold stories. And So after your diagnosis,
(16:08):
did you lose any relationships?
Speaker 2 (16:11):
Honestly no, that was like the best thing that I
didn't lose anybody and amazing. Yeah, And I remember having
this conversation with my best friend and he was just like,
you know, because of the person that you are to everybody,
you're always there for everybody. You help out as much
(16:32):
as you possibly can. You're very encouraging. Why would we
leave you high and dry when you're in your time
of need. It made me so emotional because I really
do have people that supported me through everything and me
getting back into dance. It's a lot of support that
I've gotten over the years, and I'm just really really
(16:54):
glad that I was able to have that, and I'm
very appreciative.
Speaker 1 (17:00):
Jamilla. You spent over a year in a rehab center,
in a nursing home, learning how to eat and to
bathe and more. How did that experience shape you?
Speaker 2 (17:12):
Oh man, it was very humbling.
Speaker 1 (17:18):
Yea.
Speaker 2 (17:18):
I will say that to have people coming in your
room just to turn you, change, you, bathe, you do
all of this stuff and they're like touching you, and
you don't want to be touched. I went through a
period where I was just trying to figure out, how
can I do this on my own? I don't want
(17:40):
anybody touching me. I don't want to be bathed. I
don't want to do this. I don't want to do
so it made me understand that sometimes you're gonna need
the help.
Speaker 1 (17:50):
Yeah, take the help.
Speaker 2 (17:52):
You have to take the help. Sometimes it's okay to
not have to do things on your own.
Speaker 1 (18:00):
You also mentioned losing nearly one hundred pounds from depression
and lack of nutrition. How did you start rebuilding emotionally?
Speaker 2 (18:08):
Even now, I'm still in the process of rebuilding myself. Honestly,
I can say it was insane. It was It was
insane because I'm fighting my feelings of the world is
crashing down around me, like it's a lot of heavy
(18:30):
feelings that you're having to deal with. And like I said,
my dad was bringing me food, and he was bringing
me the things that he thought would be able to
sustain me. So it was a lot of salads. It
was a lot of turkey cheese sandwiches, ham and cheese
san wiches, like different things like that. And to a
point where I was only eating the salads because it
(18:50):
was difficult for me to even make a sandwich, not
even being able to lift up a gallon of water
or a gallon of apple because it's too heavy. I
dealt with a lot of internal are you going to
get up and fight this or are you just going
to succumb to it? And having my degree program in
(19:14):
psychology it helped me a lot. Wow, yeah, Like who
knew my degree would help me in the process, And
I'm discovering this is what we were talking about in class.
So now having to apply all of those things and
shifting to Okay, how can I give myself some positive
(19:38):
self talk? How can we do this? How can we
do that? And I think that really got me through
it is because I'm such a naturally bubbly person. I
had to dive into that completely. And when people came
in the room.
Speaker 1 (19:55):
It was always hi.
Speaker 2 (19:56):
Hell, you know you like the famous th fake it
till you make it. I faked it, yeah, every single day,
and it worked, and it worked. I made sure that
I was at least pretending to be the happiest person
I could be. The people that were there for me,
I never made them feel like the world is gloom
(20:18):
and doom and there's a dark cloud over me every
day and life is terrible. I never try to exude
that because, again, I want people to feel comfortable around me.
And when that happens, you tend to feel a little
bit different about yourself.
Speaker 1 (20:36):
Yeah, and it turns out people maybe treat you better too.
Speaker 2 (20:39):
Yeah, And you get things and it helped, and it
helps to really build your confidence up a lot more so.
I use that tactic the whole entire time. I still
do it now, but it's a little less fake now.
It's very d because I made it and it's very
(21:00):
real and I am very happy. I exude positivity everywhere
I go. My chair is literally the most colorful thing
that you could look at. So that helps me to
be who I am and not be so sad all
the time.
Speaker 1 (21:17):
And speaking of that, how did it feel to return
to dance class.
Speaker 2 (21:22):
Oh man, I was nervous, especially because I'm in New
York and now I'm having to come into a space
that I've never danced in before, in a new body
and a mechanism that I've never danced in before. I've
seen wheelchair dancers before, but I would think to myself, like,
that's a lot of work to have to turn and bopara,
(21:47):
and then to do it, it was like, oh wow, okay.
And receiving the feedback from other people and the environment
that they provided for me where I could just be
who I am and just do what I need to
do and nobody is looking at me weird. We're just
(22:08):
trying to learn the moves. We're not worried about what
each other is doing. So it felt really really good
to be able to be in this space where I
feel so comfortable.
Speaker 1 (22:20):
It felt awesome, wonderful. And so how were you able
to acknowledge your limitations that, like you mentioned while still
finding joy in movement? Yeah?
Speaker 2 (22:30):
I take it day by day. But if there's certain
limitations on certain moves that I can do, do I
have to modify how I interpret a turn and a routine.
Do I have to position myself a certain way so
that the choreography looks remotely similar to what the teacher
(22:53):
was explaining to us. It's a lot of modification on
the spot. But it's a challenge that I'm willing to
accept because I love a challenge. I love to figure
out different things and how can I modify it? How
can I do this? How can I do that? So
being put in that environment really gave me a chance
(23:14):
to show myself in a different way other than I
can do what I need to do regardless of being
in my wheelchair. Now, how can I expand on that?
You know?
Speaker 1 (23:25):
So that's what that was, Jamal. Tell me what drives
that sense of joy for you? Now?
Speaker 2 (23:32):
Everything? I look at life now as a means of
we're here and things are going to happen, and sometimes
those things are going to happen and you can't change that.
So how are you going to adapt to that? And
are you up for what it is that you have
(23:53):
to go through to get through what you need? So
I look at life now, It's not dreary for me anymore.
It's not a chore. I don't really have to run
the rat race anymore of having to like work all
the time and make sure I make my money so
that I can live and do the things that I
(24:14):
need to do. Like with a little bit that I have.
I'm very appreciative of it, and I'm happy, and I
try to put as much happiness into every situation as
much as I possibly can so, and it also helps
me to be more compassionate towards other people too, because
you know what it's like me, because I know what
(24:34):
it's like. It's all just giving me such a much
better perspective.
Speaker 1 (24:40):
Losing your sister while losing the body that you once knew,
added another layer of grief. What did you learn about
love and loss and your relationships with those around you
during that time?
Speaker 2 (24:54):
A lot it was very difficult because she was also
battling stomach cancer and I used to joke around with
her and it was like, you know, this is kind
of cool. We were going through our things together, and
then when she passed on, it was obviously devastating, but
it definitely taught me that again, life is just going
(25:18):
to happen, and the people around you that are there
to support you are the ones that matter the most.
And I don't take my time with them for granted,
so I appreciate them and it helped me to love
a little bit harder.
Speaker 1 (25:37):
Jamala, tell me what are some of the ways you
started celebrating your winds big and small with yourself and others.
Speaker 2 (25:43):
Anybody who knows me knows that I love food, so
I'm always treating myself in that way.
Speaker 1 (25:52):
Okay.
Speaker 2 (25:53):
I like to express myself in my clothes. And you
go from living in a nursing home wearing sweatpants and
T shirts all the time. That's not cute.
Speaker 1 (26:03):
And I can do better, and I could do better,
and I like to look cute.
Speaker 2 (26:08):
So I started getting back into what I like to
wear and figuring out like, okay, because my body was
fluctuating with the medications, Sometimes your weight fluctuates, so you
have to figure out what it is that fits what
doesn't fit. And I'm figuring out how to use my
fashion with that. Again, I have my chair, like everything
(26:32):
that comes to how I present myself outwardly. If you
see me looking better, you know I'm doing better. Basically,
it's gonna be it's gonna be real obvious. And like
I said, I started getting back into dance. I filmed,
I did a visual from my nursing home literally on
(26:52):
FaceTime having to I can't teach anybody how to do
the dance moves that I'm looking to do, so I'm
having to explain it and with words and over face
time and having to manage it again over the phone.
And people are doing the things like to be able
to do certain things like that and still put out
(27:15):
my art. That's all I want to do is create
or I celebrate those things in my creation as well.
I just continue doing what it is that I want
to do.
Speaker 1 (27:26):
And just expressing yourself.
Speaker 2 (27:27):
Yeah, I celebrate by expression. I celebrate by my work.
I celebrate just by continuing to do what it is
that I want to do. And that's pretty much all
that is.
Speaker 1 (27:38):
I mean, you are finally doing things on your own terms.
How do you define strength today?
Speaker 2 (27:45):
Wow, I've never been asked that question. I define it
now as strength is pulling from every single resource that
you could pass use. And strength also comes from not
just within yourself, but within the community that you have
(28:08):
around you, because sometimes you don't have anything and you
have to rely on those people around you. So I
get a lot of my strength from the people around me,
and it's just been helpful and I create all of
these pillars from people, from myself, from the things that
(28:28):
I do.
Speaker 1 (28:30):
It.
Speaker 2 (28:30):
There's there's a lot of facets to what strength is.
There's not just one particular thing, and it's not physical,
it's it's everything encompassed into one big, overall concept. So yeah,
it's a lot, but it's worth it. It's very worth it.
Speaker 1 (28:53):
And it sounds like the way that you have discovered
what that definition is is just by living through it.
Nothing to it but today right exactly, Jamila, I just
want to say thank you so much for your joy
and your ability to sort of find silver linings where
people would not have found them, that is for sure.
Speaker 2 (29:13):
I'm very happy that I was able to do this
and shed some light on the possibilities of coming out
on the other side and being maybe even better than
who you used to be. And that's like my biggest
thing also that I've learned is I can be better
than who I was before, and I feel much better
(29:34):
than what I used to feel.
Speaker 1 (29:36):
So you know, sometimes the IDP is not such a
bad thing.
Speaker 2 (29:39):
And I mean that in a sense of your outlook
has to change, and your outlook has to be Yes,
I'm going through this but if I have other people
that are telling me that I can come out of it,
then what radical idea what I have than to believe
(29:59):
in myself and come out.
Speaker 1 (30:00):
Of it, especially when you know the proof is right
in front of you. You did it and you're doing
it exactly.
Speaker 2 (30:06):
So yeah, we're moving and grooving.
Speaker 1 (30:10):
Thank you so much for your time today, and what
a joy and a pleasure it's been talking to you.
Speaker 2 (30:16):
Absolutely. Thank you again for having me. I'm just so again,
I'm so grateful.
Speaker 1 (30:25):
We can't thank Jamilla enough for sharing her story and
her positivity with us today. She's proof that healing isn't
something we do alone. It's about connection, trust, leaning on
people around us, and finding your way back to community
after everything has changed. I hope Jamilla inspired you and
reminded you that even in your darkest days, you're never alone.
(30:48):
Reach out. There's a community waiting for you. 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 me Martin Hackett.
(31:09):
Our executive producer is Yvonne Shehen. 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
Videlin's of Audiography
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