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
sanity
through stuff like this.
I mean I think
your ability to like, right now the
ability to connect with each other even
online is so critical
but the other thing that you've done is
you have your own blog and you share a
lot of
deeply personal experiences and I wonder
for you
what is the balance in that like. Do you
feel vulnerable? Is it hard to share
these experiences?
And what was the decision behind
starting to write about them and sharing
it with the world?
originally my
decision to start sharing it and write
about it and blog about it was
this weird desire I had to turn a mess
into a message
I guess in my former life I
call myself a recovering non-profit
professional
and from working in nonprofit for so
long
you know I was used to to writing and
communicating with donors and
and conveying emotion and all these
different things and I've been a writer
since I was a little kid
but when I was going through this and I
started to realize
how alone and isolated I felt. I thought
"Well if I
talk about my stuff even if only like
five people read my blog
then you know that's it'll help those
five people."
Of course it's gone way
beyond that.
And I had a podcast and I've done all
kinds of things and
sometimes I feel vulnerable talking
about it. I really don't feel vulnerable
when it comes to my health because
that's not
anything I did wrong, it's not anything
to feel ashamed of.
And it raises awareness
about medical gaslighting and helps
other women.
When I share about my personal life
that feels a little bit more vulnerable
like I went public about my abortion
in my book and on my podcast
and that scared the hell out of me
honestly but I made it and the world
didn't stop spinning and so and
once I published my memoir I was
like
I don't have any secrets anymore
like at that point I was like
it would be silly to stop now. It's so far
gone yeah.
Well so here's my next question for
you is you
do a lot of things. While you're
managing all these invisible
illnesses you're running like a
community, you're a community leader,
you're a writer, you're blogging, all
these things. What are some of the tools
that you use on a daily basis
to manage your symptoms
whether it's physically, emotionally even
socially?
I wanted to make sure that I didn't skip
over. You brought up that it would be
traumatic
to have the experiences I did with
doctors
and it was in fact my PTSD had been
in remission for
for four and a half years until all
this started
and then I was full blown right back
into it as though it was like
square one. And so it is traumatic and it
has only compounded
my PTSD and I already have what they
call
complex PTSD because it's not just one
significant event
it is a smattering and layering of
traumatic experiences and events and
this medical stuff has
only added to that also
I'm a spinal fusion patient. I've had two
spinal fusions now and the one was
really big and I had to re-learn how to
walk and everything because it was
the big rupture that was crushing my
spinal cord.
About 20% they estimate of spinal fusion
patients will also experience PTSD from
that. From the physical trauma. So
I want to make sure that people
understand that
while I have been turning my mess into a
message
I'm also very authentic and honest with
people about the days when I
can't even make myself get out of bed or
I just need to take a mental
health day. And so some of the things
that I
do to manage my symptoms one
is exercise. I have a rehabilitative
personal trainer which I highly
recommend to any
Spoonie who is trying to get healthier
and doesn't know where to start.
Sometimes you have to hire the experts
because we can't be experts at
everything and that was definitely the
case for me
and my rehabilitative trainer. It helps
manage the
inflammation and physical pain in my
body and in my left leg.
It also helps manage my
feelings of overwhelming anxiety or like
impending doom on the bad days
and even if I'm depressed and I don't
feel like going to the gym
if i can just make myself get there I
feel much better when I leave. So
definitely physical exercise and diet is
super important.
What's your diet? I do an
anti-inflammatory diet but kind of like
a dumbed down version of it.
I'm allergic to gluten and corn so that
made those two
things really easy to keep up
and I don't eat very much animal protein
if I do eat animal protein it's mostly
chicken or fish
or turkey. I use coconut sugar for baking
or in my coffee or cooking whatever I
need.
I just started trying that. Yeah because
for those who don't know
coconut sugar does not cause the insulin
response in your body that cane sugar or
artificial sweeteners do
which those that reaction that insulin
reaction can cause inflammation in your
body so the coconut sugar.
I'm not gonna drink black coffee.
I refuse.
That's all I have left is good coffee
but so coconut sugar is really
helpful
so a basic anti-inflammatory diet
eating lots of like
I'll make a smoothie every morning
that's a vegan smoothie with like pea
protein
and frozen blueberries. It's all
vegan
except for I add collagen peptides which
is like powder
and the reason why I do that is because
I had so much bone removed from my back
in my spine and I'm trying to regrow new
bone cells
and I'm trying to keep things from
getting worse
too much faster so that's why I use the
collagen peptides.
Another thing that I
use to manage anxiety is the Flowly app
honestly and you and I have talked about
that extensively.
For those who don't know I did a
whole series of videos where I reviewed
different modules and talked about it
and that helps because it can be way too
easy to
when my flight or fight kicks in
to dissociate and shut down
and then I forget coping mechanisms.
The Flowly app is right at my fingertips
it's on my phone right in front of me so
it's harder to forget
which is part of why I like it. I don't
even have like I have
the virtual reality goggles so I can use
them if I want but
if I'm in bed having a panic attack I
can just pull out the app.
Creating things is huge for me. I'm a
very creative person
I begged for a typewriter when I was
eight years old for my birthday and my
mom got it for me.
So writing and creating.
I hand sew these meticulous
sequin and beaded applique Christmas
stockings
like our grandmothers
and great-grandmothers (That's amazing)
I make all those for all my nieces
and nephews and great nieces and nephews
and my best friends kids and stuff
and that is very meditative to me
because I'm just, it's repeated,
I'm just like stitching, stitching,
stitching you know
and it's repeated movement and I can
kind of just
zone out listen to a podcast or put on a
documentary or something
in the background that I can listen to
and chill out
You know when you're
doing that you're actually practicing
what you learned in Flowly because the
whole idea of Flowly is that you're
getting into a flow state and I always
write about this and encourage people to
find that hobby or that activity
where you naturally get into flow state
and you're practicing that same
you're sort of at that intersection of
high performance but being super relaxed
and like the act of doing it is
rewarding in of itself.
Which is what biofeedback does. It
teaches you to do, so it's kind of like
you work out that muscle fully and
then when you have that activity
when you actually get to apply it and I
love that that you're sharing that.
Yeah and I really highly recommend
hand crafting. I know a lot of Spoonies
who
use hand stitching, crocheting, knitting,
anything like that hand crafting
my mom does mosaic work
and I highly recommend picking up
one such hobby if you can the felt
stockings are really inexpensive they're
twenty dollars
usually it's like 20 for a kit and that
comes with
everything you need to complete the
project so it's like
affordable for Spoonie's too
and then the thing it's an extra thing
it's more than three
but I really want to say this because i
think we need to normalize it more
I take my freaking meds.
I am in trauma therapy I have a
therapist
even throughout quarantine I have phone
therapy with her once a week
and and I take medication for my
depression and anxiety and
some of my medications double as
like
I have one medication Nortriptyline
which is for chronic pain
patients and depression because it also
helps relieve
some of the pain too so it's like
working double duty
I know a lot of people feel bad or feel
like they're using a crutch or
feel like they're not trying hard enough
or something
if they have to take meds but like
that's all lies we tell ourselves
that's like that's arbitrary it's
whatever
works for you of course it's so
individual and I mean even when we do
like you know we do clinical trials for
Flowly and one of the metrics we do look
at is
the reduction of medication but we never
we always tell them it's
your choice it's voluntary and you know
reduction is great and of itself but no
one's asking you to go to zero
because it depends on your condition
like it depends on what each person
needs
so I'm so glad you
said that because I do think that needs
to be normalized.
Yeah I mean there's no magic
pill for anything so it's not like I
take all these meds and I magically feel
better and
I still have panic days. I still have
high anxiety days. I still have days
where
I'm especially fatigued or sad from my
depression but
at this point I'm a veteran at it like
I've been living with depression and
anxiety
literally my whole life and in and out
of therapy since my dad passed away when
I was four.
I can recognize pretty well when I start
to slip into one of those kinds of
episodes
and it's not a magic pill it's not
not going to make everything better
I do think exercising and watching what
I eat. Because
inflammatory foods also cause
inflammation in the brain and there have
been studies that link that with
depression and anxiety
so diet, exercise, therapy
and meds but I always say do whatever
the f you have to do to survive like
that's the number one rule of
Spoonie life
Do whatever you got to do to survive.
Make your care choices however you need
to make them
and don't allow other people to
belittle or shame you because of your
care choices
I think that's an amazing note to end on.
We have to have you back sometime
Kelly, because you're just like a wealth
of
experience in this space but I'm so glad
we even got into the
nitty-gritty of it because I think
we hear so many tips and you can read so
many like articles online in people's
blogs but
what I really like to hear like
literally what coffee do people drink
like what's the activity they like to do
because even though everybody's
different you might get ideas from that
about what might work for you
and you can try it out. Trial and error I
think for pain management
Absolutely and just
so for the sake of giving myself a
little bit of a shameless plug
if you are listening to this and you are
a Spoonie who is also a creative
and maybe working in a traditional
environment doesn't work for you anymore
and you want to create a lifestyle and
career that honors your body and your
mind's
unique needs and limitations like I'm
100% here for it
I do free coaching calls to like give
people an introduction to me but then I
also have
a new coaching program that's like a
group coaching program and it's super
affordable. It's two weeks for $47
so that Spoonie's can afford it, because
that's who I'm doing this for
and I'm just helping other people
explore things about themselves that can
help
turn their mess into a message
That's amazing
I'll be sure to link it below you can
find Kelly's info (www.nerdzillakelly.com)
in the caption and just look up
Spine Nation Kelly Mendenhall
you'll find all the info all the
things.
All right, thank you so much Kelly, it was
amazing having you.
Thank you have a great day
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