In this enlightening conversation, Kelly Mendenhall shares with Celine her work in highlighting medical gaslighting, what it is, and how she has personally experienced it as a Spoonie and chronic condition patient.
Kelly is the senior community leader for SpineNation, one of the leading patient advocacy organizations for back pain. Kelly is also an author, blogger, and journalist raising awareness of medical gaslighting which often leaves women permanently disabled or worse. Kelly is a Spoonie who manages multiple invisible illnesses. She published her debut memoir last year called Skin in the Game: the stories my tattoos tell. She is now working on her second book, The Medical Gaslighting Project.
*This transcript is auto-generated
Hey y'all, my name is Celine and I'm the
founder of Flowly and your host for
today's Health Talk by Flowly.
As you might know Flowly is a mobile
platform for chronic pain and anxiety
management
Essentially we teach users to control
their heart rate and their breathing to
better manage their nervous system.
We like to invite everyone from chronic
pain patients, chronic pain advocates,
professionals and practitioners in the
industry to really share their different
perspective
and experiences on a very unique and
challenging journey often
but i'm really excited to speak with
Kelly Mendenhall today
because not only she is Spoonie herself
but she has years of experiencing
patient advocacy
and writing in the space. Kelly is a
senior community leader for Spine Nation
one of the leading patient advocacy
organizations for back pain.
She's an author, blogger, journalist
and all about raising awareness of
medical gaslighting which often leads
women
permanently disabled or worse. She
published her debut memoir last year
called Skin In The Game: The Stories My
Tattoos Tell.
And she's now working on her second book
The Medical Gaslighting Project.
My team and I have actually worked with
Kelly in partnering with Spine Nation so
I'm particularly warm to welcome a
friend
and Flowly user. Welcome Kelly.
Thank you so much. Thanks for having me on today.
So I wanted to start at the beginning of
your journey because I know you
managed multiple different
illnesses and conditions
and you've been through it.
What was your journey to
diagnosis? What were some of the
challenges you faced along the way in
that?
Well, for starters, I just would like to
say
I didn't really think of myself as a
Spoonie when I lived
with PTSD and major depressive disorder
and generalized anxiety disorder. I had
never really put
myself in that category. So it wasn't
until my chronic pain
and spine rehab journey started that I
started thinking of myself
as a Spoonie. I think it's different for
everyone
and everyone's journey is different when
it comes to how we self-identify
just like with so many other aspects of
life.
My journey to diagnosis took quite a bit
of time.
So I was a person who experienced
kind of chronic aches and pains and
occasional bouts of sciatica
for several years. I'm talking like
throughout my 20s
and 30s and then all of a sudden
I went from being a person with aches
and pains who had a lot of Ibuprofen on
hand at all times to being a person who
couldn't walk
and had no range of motion in my legs
I could only shuffle my feet a couple of
inches at a time
the pain was so bad that I was like
sneaking into empty offices at work and
crying
in pain and then I'd like pull myself
together and go back out and try and
face it
That happened really quickly. It was that
part of the
progression was very fast and it took
until
June of 2019 before we had a full
understanding and picture of what was
going on and
that's just with my spine and I have a
whole another set of issues that I'm
dealing with
with my female, my lady bits as I like to
call it,
my baby box. And so
that's like been separate in addition
to the spine but
what it took was firing a lot of doctors
making a lot of doctors angry and
insisting on new doctors
and referrals and I finally got to the
right neurologist
who was like "What on earth is happening?
They've only ever looked at your low
back.
Have you ever asked to have a full
spinal MRI?" and I said "Yes, I asked three
different doctors on three different
occasions."
For full spinal MRIs knowing that I have
trauma history as far as like physical
injuries and stuff
and they all denied me that. They all
said "No, you don't need it. You're fine.
You shouldn't be having this pain blah
blah."
yeah and so this neurologist was like "No,
you have
very clear neurological symptoms. You
have foot drop.
You have hyper reflexes in your arms and
your legs
and your fingers and even your jaw." Like
there I couldn't pass a sobriety
test
even though I was sober. I was just in
his office and that's one of the things
that they sometimes do
to check your neurological you know
functioning
And I couldn't pass the
sobriety test and so he sent me
for those full spinal MRIs and that's
when we found
out the full depth of what was happening
in my spine
and what was happening is that I have
degenerative disc
disease and mine is considered moderate
and probably has progressed pretty
quickly even though I'm only in my 30s
still
but I had four bulging discs in a row in
my lumbar spine but what they were
missing the biggest piece of the puzzle
they were missing by only looking at my
lumbar spine
was that I had a very rare type of
rupture
in my spine called the centralized
rupture. So normally when a disc
in your spine ruptures it pushes out to
the left or the right side
and they can see it when they do scans
and things but mine was a centralized
rupture so
it pushed straight back onto my spinal
cord
that in and of itself is rare but then
it was also at the junction where your
thoracic and lumbar spine
meet right under my bottom rib which is
an extremely rare place to have
a rupture so I was a unicorn in a lot of
ways.
I see the unicorn on your shirt right now.
Yeah one of my best friends got
me this shirt
But I wanted to kind of
dive into that a little bit because
you know you're talking about
your unicorn these are very
rare conditions you
talked to like so many doctors. You've had
to fire doctors like
this is I think you know itself this
could be a
for some people traumatic experience
and of itself when you're talking about
something that's health and it's so
vulnerable to each person and yet you're
getting questioned and
people are not taking you seriously and
I think this might lead into
what you're writing about now which is
you know kind of sharing from your
perspective what is medical gaslighting
and what inspired you to be writing
and sharing awareness about this.
Yeah absolutely. It is that, that's a
really big piece of my life now is
raising awareness of medical gas
lighting. So medical gas lighting if
we think of gas lighting
in a romantic relationship or an
interpersonal relationship
we generally in a very general way we
think of it as like
someone trying to make you feel crazy or
make you feel like you're not
seeing reality when really they're like
distorting reality
and so medical gaslighting which happens
to women statistically more than men but
does happen to men too
is when your doctor is doing that so
your doctor
is saying things to you like "Well your
scans don't show any reason for you to
be experiencing that.
So you shouldn't be experiencing that." or
"Are you sure that you just don't feel
like working?"
or I would get accused of drug seeking a
lot
and wanting narcotic and opioids but I
think you and I have discussed,
I early on made a decision that
opioids were and narcotics were not a
good option for me
for one because it was nerve pain and
for two
because I have an addiction history in
my family
very like up to my sister I mean it's
really close
I would get accused by some of them for
drug seeking
and then other ones would get mad at me
when I refused
prescriptions for those kinds of meds
and they would say "Well then it must not
be that bad." And it was like
I couldn't win, right? Those types of
things are
what I'm talking about when I talk about
medical gas lighting and
and it really does happen to women way
more
than we probably realize and I
found that out on accident so
my master's degree is in political
science
and I've always been a researcher by
nature and so I was working on an
article
that I was writing for blasting news
about
women and chronic pain and
my experience and my mom actually
pointed out to me that the comedian
Jim Gaffigan's wife almost died because
she had a brain tumor and like me
doctors were saying "No everything's fine.
You're fine. There's nothing wrong. You're
fine."
and it turned out she had a brain tumor
it nearly killed her
and so I read that article and then
I was like well I wonder if this is
happening more often and that's where
the research came in
and I was like blown away by some of the
clinical and legal studies that have
been
done on this. It's crazy.
it's absolutely insane and like when I
tell you
every single user we talk to
has experienced this, it is like an
understatement and it's shocking
and it's like I think the work you're
doing is so important in raising
awareness about this to let people know
like
first of all you you have the authority
to be your own health advocate
and to know that these doctors you know
some might be great but there are many
that aren't going to be there for you
and listen to you
and so I think the first step is
actually recognizing that you're not
alone in this and that it's not just in
your head.
And that's where a community like what
what we have on Spine Nation or in
Flowly that's where those things come
in handy because
you know when I was immobilized my
online community became my lifeline to
the world
and I was scared though and
I felt alienated and alone
because I didn't know anyone else
personally going through anything like I
was going through
well I found people through the online
community and
that helped me a lot building
the online
kind of safety net and people who I can
talk to and commiserate with
and that's really when I dove more into
the Spoony culture
because I was like the these guys
like they know exactly what I'm dealing
with. Yeah exactly.
You know whereas everyone that I
worked with outside the home
had kind of I ceased to exist when I
didn't walk into the office anymore
I had people who are online who I only
knew online
who were checking on me every day and
yeah so that's where
things like Flowly and Spine Nation
come in I think and are critical to our