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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 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


so i wanted to start um towards the

beginning of your journey

with fibrosis mediastinitis it is a rare


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


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


but ended up being admitted to the um

hospital um for an emergency in 2014 to


my gallbladder removed which ended up

causing me to um serious case of


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


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


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


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 just asked me he was like how do you

feel about it i was like i'm really


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


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


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


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


especially women and especially when

women of color

are educated and taught to advocate for

ourselves or even to listen to ourselves


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


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


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


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


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


a black um nurse there and she kind of

said it could be the same things and


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


those doctors who look like you or who


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


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


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


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


human resources office and say i need to


um accommodations yeah i need to be able

to work from home

at least two days a week because at home


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


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


tagging some of the stuff that i put out

there or

addressing it directly um so that

there can be information for people


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


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


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


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


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


so that's why i really created that

community because i knew it was needed

because it's so hard to find information


people who fully support you in that


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

well thank you so much for being here um

and thank you guys for joining in




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