Health Talk 02: Managing a rare disease: standing up and advocating for yourself
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