Finding Strength and Compassion in Chronic Illness

What happens when your world flips upside down with a diagnosis that few understand?

Join me, Carmen Cauthen, on "Quiet, no More" as I share the raw and unfiltered journey through the maze of pulmonary arterial hypertension. From the unnerving experience of nodding off at traffic lights to the daunting task of explaining an invisible illness to my children, I unravel the complex layers of living with this rare condition. With a CPAP machine and oxygen therapy becoming part of my daily landscape, I face not only physical and emotional hurdles but also the financial strain that often accompanies chronic illness. This narrative isn't just about the hardships but also the resilience and determination to keep moving forward.

I firmly believe that empathy starts with understanding, and that's where my story takes a turn. Emphasizing the power of personal experience, I explore how facing health challenges with transparency can educate and inspire curiosity, particularly among the young. This openness has taught my own children the importance of kindness and the pitfalls of making assumptions about others' health. By sharing these insights, I hope to encourage a more empathetic society, one willing to communicate openly and break down the walls of misunderstanding. 

Join the conversation, and let's foster a world where asking questions is encouraged, and empathy is the norm.

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Carmen Wimberley Cauthen is an author, speaker, and lover of history, Black history in particular. As a truth teller, she delights in finding the hidden truths about the lives of people who made a difference - whether they were unknown icons or regular everyday people.

To Learn more of Carmen:
www.carmencauthen.com
www.researchandresource.com

Episode Transcript

Speaker 1 (00:01):
Unseen, unheard.
We've lived like that far toolong.
I'm Carmen Coffin and this isQuiet, no More.
There was a point in my lifewhen I was just I was tired.

(00:21):
All the time I would be drivingdown the street and stop at a
stoplight and fall asleep.
I had young children in the car.
It was scary.
We'd even be on the highway andI'd realize that there weren't
any cars close to me and Ididn't know how I'd gotten to

(00:45):
that point.
I didn't remember what the lastthing was I'd seen, so I don't
know if I was asleep or not.
I even remember traveling toWashington DC to take my oldest
daughter and drop her off sothat I could go to a conference,

(01:05):
and having to pull over outsideof Rocky Mount, north Carolina,
which was less than an hour'sdrive, and renting a hotel room
to go and take a nap because Iwas so tired and I just thought
it was my weight.
I thought I was overweight, Ijust wasn't sleeping well, but I

(01:28):
didn't tell anybody because Ididn't want anybody to know that
I was falling asleep atstoplights.
And I went to a conference inVermont no, maybe it was New
Hampshire.
Anyway, we had to walk up ahill to go to an executive
committee dinner and I almostcouldn't make it up the hill and

(01:52):
I'm still thinking I'moverweight, I need to lose
weight.
It wasn't that I came back.
I had started parking in frontof the legislative building so
that I didn't have far to walkto get into the building every
day.
And still some days I'd have tostop between the street and the

(02:13):
front door to catch my breath,to get in, but I still wasn't
telling anybody.
I went to an event with afriend of mine my best friend
and she had driven and we parkedand I had about half a block to
walk to get into the churchthat we were going into and I

(02:35):
had to stop and catch my breath.
And she looked at me and shesaid what's wrong?
And I was like, oh, I just haveto catch my breath.
And she just kind of looked atme and she said you need to go
see the doctor.
Now I don't know if I wouldhave gone to see the doctor and
told him that it wasn't that Ihadn't seen the doctor.

(02:55):
I just wasn't mentioning thatbecause I'm just thinking you're
going to tell me I got to go ona diet.
You're going to tell me I gotto do this regimen.
Da, da, da, da da, and I didn'twant to do it.
So I agreed to tell the doctor.
I made an appointment and I wentand the doctor said let's run
some tests.
Well, it turns out I had severesleep apnea.

(03:20):
Like they woke me up shortlyafter they put me to sleep
during the sleep study andswitched me to a machine and I
think they said I was havinglike 75 stoppings of breath an
hour and it was pretty severe.
So I still sleep with a CPAP,but that did not stop the

(03:46):
sleepiness.
And so they started to look forother things and the doctor
sent me to a cardiologist.
The cardiologist had tests run.
They started talking aboutthings like sarcoidosis, which
is a hardening of your lungs andit will kill you at some point.

(04:11):
And then, after we ran severaltests, doctor said I need to do
one more and that's a heartcatheterization.
And so they inserted a needleinto my groin and ran it up
through a bloodline and itturned out that what I had is a

(04:34):
rare disease and it's calledpulmonary arterial hypertension.
So there is a constriction inthe artery going from my heart
to my lungs.
It is a pulmonary disease,although I see a cardiologist
who specializes in thisparticular disease, and they put

(04:56):
me on medication.
And they gave me medication.
I mean put me on oxygen as well.
This was in 2009.
And I remember the day I knew Iwas getting oxygen, but I don't
think my children knew and theday that the respiratory

(05:19):
specialist came to the house andbrought the oxygen tanks.
My oldest daughter just criedand it's hard to explain to
people, when you look perfectlyhealthy, what's wrong with you.
You know they don't get it.
And I was still working.
The doctor had suggested that Igo home, go on disability, but

(05:45):
I was the main breadwinner.
We wouldn't have any healthinsurance to cover the medicine
or the oxygen and the medicine.
The copay for the medicine thatI was taking at the time was a
hundred dollars a month.
No, that's not true.
The copay was $300 a month.
I had to find a program to helppay for my medication and I

(06:10):
believe it got it down to $100 amonth and that was stressful as
well, because that was a lot ofmoney for a bottle of pills to
me.
The oxygen helped, but I stillwas using the CPAP.
So even at night I'm using theCPAP with the oxygen going.
Through that I was stilltraveling for work sometimes and

(06:34):
I didn't realize I neededoxygen while I was in an
airplane and when my doctor toldme that I didn't have enough
time for the next trip that Iwas going on, which was later
that week, to rent an oxygenconcentrator that I could take
on a plane.
So I flew without it and one ofthe things that they told me,

(06:58):
as I'm walking, my oxygen satswould drop.
And that was how they knew thatI needed the oxygen.
So I use a wheelchair to get mefrom when I get to an airport,
to get around, because it justis too much for me to try to

(07:19):
walk and carry bags and all thatkind of thing.
I remember on one tripreturning home and didn't have
it must have been this firsttrip I didn't have any oxygen
with me but I had to wait forthe wheelchair to come down the
ramp to get me and one of theflight attendants both of them

(07:39):
knew I was waiting for awheelchair and one of them said
to the other one what does sheneed a wheelchair for?
She's fine, is she just fat?
And I heard her and I wasfurious.
And I heard her and I wasfurious.
And so, as I got ready to go tothe wheelchair, when they told
me it was ready, I told her.
I said don't judge people bywhat you don't know.

(08:01):
I said I can't walk that farwithout oxygen or I might pass
out.
So, yes, I have extra weight onmy body, but that is not the
reason that I need thewheelchair and you should not
make that assumption.
And so she was very apologetic.

(08:22):
But what do you look like whenyou're sick?
Sometimes you look unwell toothers, but sometimes it's just
like you know, asking a woman ifshe's pregnant because her, her
belly fat is, is is big, um, Igot belly fat.
I'm not pregnant.
Um, and you don't know that Ihave a rare disease.

(08:47):
Uh, I have lost some weight, soI don't have to have the oxygen
all the time, don't really haveto have it at all right now.
But it's important that youdon't judge people about how
they look.
So what do you look like whenyou're sick?

(09:08):
I look like I normally look.
I still take medication thatactually was originally being
researched for pulmonaryhypertension patients, and they
found out that the properties ofthe medications would help men
who have erectile dysfunction,and so the medication that I

(09:32):
take was originally marketed formen for erectile dysfunction.
Cialis and Viagra that's wherethey came from.
They have different names forthat medication for people who
have pulmonary hypertension, butthey marketed it for eight or
nine years to men with erectiledysfunction before they started

(09:54):
to market it for people who havepulmonary arterial hypertension
.
And so if you see me and we'rewalking somewhere and I stop
talking or you hear me panting,it's because I have to catch my
breath.
It's difficult for me to walkand talk at the same time.

(10:14):
So you know, for me that'sdifficult because I like to talk
and so I had had to learn tosave my breath when I'm walking
and talking and, like I said, Idon't have to have oxygen
anymore.
But you just never know whatpeople are dealing with.

(10:35):
Do you think about what peopleare, especially women, who have
a head covering on?
Do you wonder if they're justnot taking care of their hair
and or having a bad hair day?
Or do you wonder if maybethey're having cancer treatments
and they've lost their hair?

(10:55):
The same for men.
Do you wonder if you suddenlystart to see a man wearing a cap
that he might be sick, he mighthave some health issues?
We have to think about thosethings sometimes and not
necessarily judge what we see.
And you know, as my daughterwould say, that's not my

(11:17):
business.
But sometimes even though it'snot your business doesn't mean
you don't wonder.
Wondering and making judgmentsare two different things and one
of the things that I learned todo when I was using the oxygen
all the time, because I'm theperson who you might see me in

(11:37):
the grocery store with pushingthe cart with the oxygen
contained canister in the cartbecause I was not going to stop
doing what I was doing because Ihad to be on oxygen.
I'm not trying to stop life forany of that kind of stuff.
Children would see me and youknow how we tell our children

(11:59):
don't stare, don't ask questions.
You know children have a anatural curiosity and a lot of
times children will ask stuffthat the adults want to know.
They just think you know that'spoor etiquette for me to go ask
.
I would take my oxygen cannulaoff of my nose and let the kids
feel the air blowing through andtell them this helps me breathe

(12:22):
and parents would look at meand they would go okay.
Well, I think it's important forchildren to be able to
understand things that are goingon.
It was certainly important formy children to understand the
health situation that I wasliving with.
It has helped them tounderstand that.

(12:43):
That's why they have to do thelaundry, because one of the
things I was told not to do wasraise my arms up over a certain
point and I couldn't fold thelaundry.
I was not upset about that,because laundry is not my
favorite thing to do, but whatelse do people look like
sometimes when and we don't knowthat they're sick?

(13:07):
I've had a child who had to havescoliosis surgery.
She came out of surgery fourinches taller than she was
because her, her, her spinalcord was curved.
I had a relative, an aunt, whohad surgery and her rib cage,

(13:28):
her organs, had been pushed upand when she came out of surgery
, that had been relaxed and ithad been causing her pain.
We just never know.
And so, again, it's importantto not be judgmental and assume
things.
Again, it's important to not bejudgmental and assume things.
It's also important to be kindand encouraging and help people,

(13:50):
and so my children have learnedto be helpers to people whose
health is not necessarily asfortunate as others.
They've learned.
They learned to take care ofelders.
They helped with my parents.
They would ride with themsometimes when my dad was having
to go do something or theywould, they know, to help.

(14:12):
You know, fix the food or fix aplate and carry it to someone.
So these are all importantthings, but think about it.
What kinds of things have youhad to deal with in terms of
health that you didn't sharewith folks and they made
assumptions.
It's hurtful and you know it is.

(14:34):
So let's be quiet no more as wework on those things.
You've been listening to quietno more where I share my journey

(14:56):
.
So you can be quiet.