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Health Talk 06: Medical Gaslighting: how it impacts patients and ways to manage it



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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