About Health Talk
Living with a chronic condition can feel isolating. Health Talk by Flowly was born from wanting to bring often isolated voices into the fold, and connecting different ideas, experiences, and tools to your own health journey.
We talk to health practitioners and chronic health patients to deconstruct the chronic condition journey— from how many have managed the challenging diagnosis experience, to new tools and tips that might help you. We cover conditions including chronic pain, anxiety, autoimmune diseases, and more.
Hosted by Celine, the founder of Flowly, this weekly podcast will dive into conversations with world class researchers, practitioners, and even more importantly, chronic condition warriors themselves.
Search “Flowly” on Apple Podcast or Spotify to find Flowly Health Talk!
Highlighting Black Invisible Illness Voices with Whitney West.
We’re particularly excited to share Whitney’s conversation with Celine. Whitney West is a health advocate, a chronic illness warrior, and works to bring more awareness to her own rare but significant chronic condition: fibrosing mediastinitis. In their conversation Whitney shares how she’s had to navigate her own challenging diagnosis journey, the role that anxiety has played in her daily health management, and how her identity has a Black woman has impacted her relationship with health practitioners.
*This transcript is auto-generated
Hi everyone my name is Celine and I'm
the founder of Flowly as some of you
guys know we're doing a series
highlighting black voices in the
invisible illness community
in case you don't know slowly is a
mobile platform for chronic pain and
anxiety management
essentially we teach you how to control
your heart rate and breathing
to better manage your nervous system you
can find us on the apple app store or on
any of our social media
website www.floaty.world but today let's
cut to
the more interesting part which is i'm
featuring whitney west
whitney is an incredible invisible
illness warrior
she's a health advocate and is here to
share her story with fibrosing media
tinnitus
so i wanted to start um towards the
beginning of your journey
with fibrosis mediastinitis it is a rare
condition
so i'm not sure that everybody does know
what it is so if you wanted to share
briefly about
what that condition means yes like you
said it is a very
very rare condition only a few hundred
people um
are known to have it and most of the
cases um they
really aren't unsure where it comes from
some cases they can trace back
to around the mississippi and the ohio
river valleys where you get
a virus that comes through you get it
goes away in your body
um but your body doesn't realize that
it's gone so it continues from that
point on
to fight it so your immune system is
kind of overreacting and
under reacting to different things and
what it ends up doing is building a mass
in your media styling area and that mass
can be
big or small and then eventually it will
begin to calcify
and when it um starts to build and then
when it starts to calcify those are the
things that cause
issues in your body depending on where
it is and what it does
i started having issues
i believe like my senior year in college
and i was
diagnosed with like asthma so
automatically you know if you're having
a wheezing or like a breathing type
problem that's like the first thing that
anybody ever goes to
so i'm like okay asthma that's fine i
didn't really think much of it
um in terms of okay i grew up in the
country but now that i'm in like dc i
get allergies okay maybe it's pollution
as i went on um i had always been
overweight but then i had
begun to lose weight so i had lost a
substantial amount of weight
probably close to 100 pounds and in
around 2013
i started to have more difficulty
breathing
so i was pretty active in the gym
working out eating right and i live
on the second floor so i was constantly
walking up and down those stairs
but one day it came to the point where
walking up and down those stairs got
very tiresome so i'm like i've been
doing this for a long time
i'm losing weight there's an issue so
that kind of led me to start trying to
go to the doctor to see what was wrong
and from there you know i had some
issues with the doctor that i initially
found
but ended up being admitted to the um
hospital um for an emergency in 2014 to
get
my gallbladder removed which ended up
causing me to um serious case of
pneumonia
which led to them discovering how low my
oxygen level was
and i ended up having to be on a
ventilator for a little bit over a week
and is that when you did get the
diagnosis
um was it from that doctor or did you
have to kind of like move around to
different doctors to get that diagnosis
i had gone to the local hospital in the
town in maryland that i lived in
and luckily there was the pulmonologist
that they called in
he knew that since he was new there he
didn't really have the
ability to treat whatever it was because
they could not figure out what it was
so he worked with me very closely
and then suggested that i go to the
university of maryland medical center
because they had experts in the
cardiology and pulmonology
that could likely help me so i started
to go to
university of maryland medical center
for several months getting all different
types of tests
back and forth the doctors there in
cardiology and pulmonology
were discussing my case all over the
place at different conferences
different things because it was so weird
the only other health issue i had
was high blood pressure and being
overweight but
even in the end it turned out that blood
pressure was due to
the blockage that was building up in my
chest because
as i had been losing weight my blood
pressure never changed
and my primary doctor had noticed that
oh that that is weird it should have at
least
gone down a little bit but maybe it's
hereditary because i had no
other indications that something was
going on
um i ended up going back into the
hospital again
i actually ended up coughing up the
ventilator which is very
strange i had no injuries to my throat
or anything
during that stay my pulmonologist who i
ended up working with the whole time i
was in maryland
until i relocated to new orleans
he happened to talk to a doctor friend
of his in st
louis and he ran through my symptoms
and the doctor just so happened to say
oh i know exactly what that is
and he said it's vibrating mediastinitis
because a lot of the symptoms for it are
very strange like
you have the breathing issues you can
have the wheezing the asthma symptoms
and then also um hemoptysis which is
coughing of blood
um happens and i was having all of those
symptoms and so did you end up meeting
with that doctor
or the doctor you are currently working
with bring back the diagnosis
and kind of start from there he brought
back the diagnosis
and he kind of talked me through it and
he really wanted to do a biopsy just to
be sure
but i wasn't really comfortable with it
and
this was one of the points where i kind
of learned to advocate for myself too
i wasn't really sure and i was thinking
about it and he actually came in to talk
to me
um about it like a day or so later and
he's
he just asked me he was like how do you
feel about it i was like i'm really
unsure
about it just by how i responded when
i've gone under
and i just don't feel right he was like
i actually agree and i think you're
right
um a little bit too unstable for us to
for me to safely feel comfortable and do
that for you i just like the way that
he kind of talked to me and he
and one of the nurses actually came in
another day
because i i just began asking for like
everything i needed
and he became like a very good advocate
for me
um one of the nurses i'd asked for a
breathing treatment
and she told me she couldn't give it to
me because it would affect my blood
pressure so
when he came back in i told him what
happened and i was like i feel like i
really need it
and he was like you're right that was
the wrong thing
because if you're not breathing it
doesn't matter what your blood pressure
is
so if your breathing is off and you stop
breathing that doesn't matter so that
made me realize that
what i'm feeling in my body and what i
feel that i need that i should express
that
because i know what i'm feeling and he
had to talk with me he was like
you're very aware of what's happening
with your body
you're able to spot what you need even
if you don't know
you know what it is medically you're
able to clearly express what's going on
so i trust what you say about what's
going on with you
so that really let me know the power of
advocating for yourself and what you
really feel
i i feel like that is a really powerful
story and experience because not many of
us
especially women and especially when
women of color
are educated and taught to advocate for
ourselves or even to listen to ourselves
and
i think that's also a powerful story in
that that shows what happens when
a doctor or general practitioner or even
a nurse actually takes the time to
listen to the patient
and how much that can actually change
the health and diagnosis journey
how do you feel like your identity as a
black woman
has shaped sort of that initial
experience you know when you're going
through all the different doctors
when this was a rare condition people
weren't giving you the right diagnosis
even let's say like when that nurse
wouldn't give you the oxygen treatment
that you needed
do you feel like it's it's been a factor
i play your identity
and if it is and how so yeah i
absolutely do feel like it's been a
factor
um it's just also been great that i've
been able to find
great doctors who actually did listen to
me and
some of the turning points were actually
when i found practitioners
of color that pulmonologist was a white
man but
he was absolutely everything that he was
supposed to be doing
but um the first practitioner i went to
was the white man and
i think seeing me as an overweight black
woman
was like okay automatically it's because
you're overweight
so i had to come back him to say no
i've lost 70 pounds so shouldn't that
make a factor and he was like well your
lungs are
reading normally my like your lung
functioning test but
if you do the test and then all the
x-rays and the ultrasounds you see the
mass
there and so i had him order tests
i went to take them and it was showing
and i was calling and trying to get the
follow-up appointment for to have him
review them to see what was going on
and he would never make the appointment
or would cancel it and put it off and in
that time
i ended up in the hospital and then
finally while i was in the hospital i
got a call from his nurse to say
oh now he's ready to schedule the
appointment but it was at that point
it was just too far gone and so i
already had
other doctors so it's just like i could
have caught this
six to seven months and never had to be
hospitalized at least for that reason or
if i had
gotten hospitalized to have my
gallbladder removed
it wouldn't have deteriorated so quickly
because they would have known
everything else that was going on and
then
to even get to the point to see that um
pulmonologist i had presented at urgent
care a few times already
with the hemoptysis the um coughing of
the blood
and no one they were like oh you
probably just coughed too hard
or you know just gave general reasons
nobody really ever
kind of dug too deep until um i came
across
a black um nurse there and she kind of
said it could be the same things and
then
she came back in and she was like but
you know i really want you to go to
a pulmonologist when she said that
that's actually what led
to the trend of me saying you know i
really should
be looking more into this is sometimes
really
those doctors who look like you or who
are
who are women of color who actually
pay attention or go the extra mile to
help you figure out what's going on
i made it a point when i moved here
to new orleans to find a black woman as
my primary
and whenever i say any kind of thing to
her she immediately she'll order tests
she'll ask more questions she'll figure
it out she'll calm
me down and there's nothing that she
just waves off even if i'm like oh i
don't think it's so bad she'll say
i'm ordering it anyway you know like
she'll make sure
that i know that like i feel good about
it and i have whatever results i need
that just speaks to how important it is
to have
uh diversity in the healthcare system
in the doctors and nurses that you're
working with and like i remember i
my first gynecologist i ever worked with
was a woman of color and it actually
changed my experience a lot versus going
to like a white male gynecologist which
there are many of
um and not to say that you know they
can't be good doctors if they're not
from your same race or ethnicity but
it definitely i think adds a layer
of empathy and understanding and greater
complexity because
we we are our bodies are also different
um
and our health journeys and experiences
are so different
you know where you have to become your
own health advocate
is a really hard one right and it's
really really challenging and we hear
that over and over again
and i think most of the patients and
users we've worked with
experience a lot of anxiety what was
your experience kind of
with anxiety and when did you first
realize you had it just kind of walk me
through that
so with anxiety i think it's probably
been something that i've dealt with
probably my whole life
um and most of it has been annoying i'm
a firstborn
recovering perfectionist type person so
it's just like
you know i've always like been concerned
with what my grades were what people
thought about me and like a lot of that
i've been able to shed
as i've gotten older but i realize is
not completely shed it's kind of
transformed and
initially when i got sick i didn't think
i had a lot of anxiety about it
until recently kind of looking back in
hindsight
is i actually discovered something
called over
functioning and like over functioning
anxiety and i feel like that's how
things presented
like i had to have a whole lot of
control
over all the issues and like i would
take on
a lot of stuff even though once i got
sick i
probably should have been sitting down
and taking on less
i was just trying to overcompensate or
making sure that because i was sick it
didn't seem like i was sick or
i felt like i would be judged for taking
a day off
to be sick or things like that i didn't
want to be seen as
being hindered by my illness when i
reflect on it's like i need to kind of
let some of that stuff go because
in the end that's what i have to do
to make sure that i'm okay i read an
article and it was like
those are those times that i ran in
there were like so me it was like
taking on tasks for like people that you
worked with because you know you could
get it done quicker or you didn't want
to take the time to
um explain it to them and like i knew
that i was doing that
and i knew i didn't have the time so i
was just like
with certain things like that it was
like let me explain to people
what they can do so they can do it i
don't have to worry about it so with my
illness i try to do the same thing like
this is what's going on with me this is
how it is i'm gonna be off today
sick day that's it like i don't
like make any kind of excuses for it
and i just made a point to say this is
what it is i also made a point to go to
my
human resources office and say i need to
have
um accommodations yeah i need to be able
to work from home
at least two days a week because at home
i
have my larger oxygen machine i know the
area is clean
i know everything is okay and i can rest
in the middle of the day if i need to
so i made that point to do those things
for me
um that so i could be less anxious um
and i can have the environment and the
things that i needed
all the time how did you come to the
realization like
you needed to shed
that sense of control or the
manifestation of that anxiety like what
led to that and then
how do you manage it today like what are
some tools that you've used
i got to the point where i just wasn't
happy where things were
so i wasn't feeling like um
i was the me that i was before my
illness or the me that i was really
trying to become and i felt like i was
really stuck
and i was just i wasn't moving and i was
very stagnant and so i was just like
something has to be done
and so i went through the process of
really just changing my mindset
not only around my illness but
around how i was perceived in general
and then
also just accepting where i am i have an
illness that i'm sick
and that is there and it doesn't mean
that it's something that i like or
something that i enjoy
but just knowing that it's there allows
me to know how to work around it or go
through it
when i got to that point especially um
this year
where my anxiety with this was making me
unhappy
it was making me sick it was just like
okay you've gone through these steps
before like
what can you do to make your life better
doing some of those things for myself
were just like the list of items i made
like what could help
and then i try to attack that list and
those were some of the things that came
from it and
from there i started doing meditations
breathing exercises yoga and getting
into a little more exercise just so
i could also build up my cardiovascular
health and health in general
but also you know get some of those um
that energy going into me so that i
would feel you know more refreshed and
more energetic throughout the day are
there any resources you'd like to share
with people
to educate themselves more about
fibrosis mediastinitis
a website or resource that you have
found helpful yeah
there isn't much information out there i
actually kind of
made it a decision recently to start
like
tagging some of the stuff that i put out
there or
addressing it directly um so that
there can be information for people
later
when i first was diagnosed i think there
may be a few more
youtube videos now but i found one video
it was a memorial
for somebody who passed of it and then
there was
one community i found and it had been
defunct for like
some years and so it was just like
there's nothing
so for me um part of why i started to do
what i'm doing is just because there was
nothing
and i wanted um people to find something
out there to at least help or see
somebody who
was going through it and like i just now
recently in the last
month found another black woman with
fibrosing mediastinitis
and she was one of the only other people
period
that i found with it which it seems like
it's crazy but it's like i was excited
because it's like i found not only did i
find someone else who was young
and had the illness but she was also a
black woman
so there's that ability to relate on all
those different levels
when you find someone like that because
i actually created a group for
black women with chronic illnesses on
facebook it's called sisters with
chronic illnesses
because even though we can find a lot of
chronic illness communities
because we have though all those
intersectional points
some of the questions or some of the
experiences we have
addressed in those larger forms are
sometimes ignored because that's not the
experience of everybody else who has
them
a community so we could come in and
understand that i went to
a therapist to talk about my illness and
they told me i was too sensitive
or i needed to be stronger and we know
our
counterparts who are white would
probably not hear that it's like why do
we as black women get told that we need
to be strong and just deal with things
or our doctor is not listening to us
what can we do
you know telling you different
mechanisms to get the testing that you
need
so that's why i really created that
community because i knew it was needed
because it's so hard to find information
or
people who fully support you in that
realm
that's an incredible community and you
know thank you for starting that because
i think it's sorely needed and
the other thing that you know our team
has noticed in working with a lot of
chronic illness patients
is that a lot of women of color
will have an autoimmune disease will
have a chronic illness but not
know it like not even have the
information or resources to know that
they need to go seek out a diagnosis or
talk to a rheumatologist or
even their you know general practitioner
to advocate for themselves and say hey
there may be something more here
it's an ongoing education it's something
that needs to be talked more about and
i'm glad that we're able to
highlight this rare condition but it's
still a condition that affects people
um by roasting media tonight so um thank
you for joining us here today whitney
and last thing how can people follow
follow your journey
so i'm at the whitney west on all social
media and my website is
www.thewhitneywest.com
well thank you so much for being here um
and thank you guys for joining in
you
