Hello everyone, I'm Diane Grissell.
I'm also known as Silver Despedience, and this is the
Silver Despedience Perception Dynamics podcast.
And we're recording in iconic Manhattan center.
We have a very interesting guest that we're going to learn about
today and we're really going to learn more about is it in your
head or is it real? And what we're talking about is
pain. There are times when we feel
pain, we can't get it diagnosed, or worse, it gets misdiagnosed
and we get further and further away from finding the answer
that we might need. Well, my guest today is Doctor
Erin Nance, and she is a specialist in helping people
understand pain that might have been misdiagnosed or uncovering
what that pain is and where it's coming from and why.
So welcome. Thank you so much for being
here. Oh, thank you so much, Diane.
It's a pleasure to talk with you and your audience.
OK, let's start with just plain the idea of it's not all in your
head. How many times do you think
people hear that, and what's the impact of hearing you know this
is in your head? So for I would say the vast
majority of people when they start experiencing symptoms, you
you kind of dismiss it yourself, right?
Like that'll go away. It's nothing.
I must have slept on it funny. And that's a universal
experience, but when something. And often that's the case.
Correct. And often that is the case, but
when something is lingering for days, weeks, months, that you
know, is a sign or a red flag that this is something that we
really should be addressing with a healthcare professional.
And if pain is just kind of the only symptom, it is very
difficult to determine where that pain is coming from or what
happened, right? Sometimes you're talking about
your son who's a skateboarder. He fell, he hurt his wrist.
He probably has a fracture. But for most people, there's not
that immediate connection. And that pain comes on what we
call insidious and gradual, right?
There was no one time event that caused this to happen, just
those one time events that are pretty easy actually to
diagnose, right? I, I was sitting down, I heard a
pop in my back. Probably have a herniated disc,
right? You know, I, I was, I was
walking down the street walking my dog and I rolled my ankle and
now my ankle is swollen, probably have a sprained ankle.
But for a lot of conditions that are more what we call systemic
or part of like your bloodstream or autoimmune, rheumatological,
there's no one one like smoking gun, right, as to what is
causing this. And I think that's probably one
of those difficult areas people find themselves when they go
seek out help and they don't have that one diagnose, you know
that that one symptom that a doctor knows immediately.
OK, I know exactly what this is. And people are finding
themselves in this position more and more often.
You know, that is so interesting for for many years you used to
hear the term fibromyalgia and people used to say, Oh my God,
that's what doctors call it when it's all in their head.
You can't identify it. There's really no reason for it.
So they were just going to give it a name.
Now you see no see plastic pain and which seems to be the new
way that that cluster that not necessarily identifiable or as
you said root cause necessarily being clear.
What can you tell us about that? Where?
Where does that all go and where did it come from?
So I think First off is we have to build systems that are rooted
in believing patients and believing that they have a
problem, that there is something wrong.
Because what you asked earlier about what does it do when a
physician tells someone it's all in your head?
Well, it shakes the confidence, right, that we have in our own
ability to trust our gut that something is wrong.
And what I have found is that in the vast majority of cases, when
someone tells you it's all in your head, it's just because
they have not figured it out yet.
And it's, it's a way of kind of pushing, you know someone.
Pushing the boulder way, correct?
And as I said, there are like established diagnostic pathways.
You got a whole lab panel. I have great news.
Your labs are normal. Well, that doesn't help me,
right? I have great news.
We didn't find anything on your MRI.
All right now, yes, that is. It's funny.
You're reminding me of when my mother was in her 90s and dying
and we were going to a super fit woman.
We went to the oncologist, the rheumatologist, the
pulmonologist, the this, that. And they're all like, you know,
I have no idea what's going on. Nothing wrong with you.
And the day she said the oncologist said, well, I just
want to let you know you don't have cancer.
And she goes, oh, crap. I, I just looked at the
oncologist and laughed. I said, you're going to have a
funny dinner conversation. I'm sure you don't have many of
those. You know the patient who said oh
crap. I can tell you.
I bet you see this and you've heard this kind of thing.
Correct from interviewing so many people who have a
misdiagnosis or an autoimmune condition when and multiple
people have actually had a diagnosis of cancer in addition
to these other diagnosis, when they hear they have cancer they
go. Yes.
OK. Because they know this is
something that has a name, it has a treatment and I know what
the prognosis is. And that to them is a better
prospect of just not knowing or trying to chase something you
don't even know what it is. So to get back to your original
question about the fibromyalgia, you know, there, fibromyalgia is
a disease or condition that we call a diagnosis of exclusion,
OK. And what that means is we have
tried to find cancer and we didn't find any.
We have tried to find rheumatoid arthritis and we didn't find
any. We tried to find Lyme disease
and we didn't find any. But you still have these
symptoms. We believe you.
We we, we understand that they're real, that they're
affecting you and they're in a similar pattern to what a lot of
other people are experiencing. But they also don't have
positive labs and they don't have positive CT scans.
And so we're going to diagnose you with fibromyalgia.
Now in giving that diagnosis, and I say this all the time,
diagnosis is power, OK? When you have a diagnosis, that
then opens up a whole variety of potential treatment options of
new specialists of new medications, right?
Because you have a diagnosis, you have to think about what's
going on behind the scenes when you get a diagnosis, that
diagnosis carries an ICD 10 code with it.
And for anyone who's ever seen an EOB or a bill that you get
from your insurance company, OK, correct.
But you need that ICD 10 code in order to get that that treatment
in order to get that IVIG in order to get that new
medication, right? So having a diagnosis is power
not just for your own emotional state, but also from a very
practical standpoint in terms of how insurance works.
So I am glad that people are getting some diagnosis right.
But in my opinion, for the vast majority of people, they have a
root cause that just has not been discovered yet.
And. In some cases then a
misdiagnosis, which is potentially even worse because
you're going down a pathway. It's not, it's not even that
you're you're the pathway is stopping.
You've just stopped because they say, OK, we've figured out your
diagnosis. But for a lot of these
fibromyalgia POTS MCAS, the treatments are drink more water.
Yeah. Exercise more and when you're.
Well, those two factors do help a lot.
Of course. Of course, pretty much anything.
Of course, but it's not specific to your particular problem.
So that's where I feel sometimes when people are given these
diagnosis of exclusion, it prevents them from doing the
further investigation to something that might actually be
treatable. What do you find if someone's,
let's say, been diagnosed with fibromyalgia?
What are underlying things that are often missed once that
diagnosis is given? So for fibromyalgia, right
patients are usually complaining of pain in multiple areas of
their bodies at different times. Sometimes it can.
People can have brain fog or extreme fatigue and there are
many different either infections, EBV or mono, you
know the kissing disease. I find that a lot of people have
had undiagnosed chronic EBV that have been diagnosed with
fibromyalgia. EBV as in Epstein Barr.
Correct. Epstein Barr virus, same thing.
Lyme disease, right? You might have been diagnosed
with fibromyalgia, but your underlying cause was untreated
Lyme disease. Or sometimes there's a, a, a
huge, well, I'll talk about two large categories of disease. 1
is called dysautonomia. And that is when your nervous
system is just kind of off the, the, the, you know, off the
walls and firing in ways that it shouldn't be.
And then a connective tissue disorder called Ehlers Danlos
syndrome, which I find more and more women are being diagnosed
or trying to be diagnosed. And that is that is the root
cause, right? That is your connective tissue,
which is your skin. Everything that holds your
organs together in place, everything that's deep inside of
you, it's not at the right can. Think of it like tension.
Is that tied to lupus? No, Lupus is an autoimmune
disorder that is your body kind of attacking itself.
Eller's download is a. There can be associations.
And comorbidities, because I've heard of associations between
those, right? So people who have Ellers
Danlos, it's actually called the unholy Trinity, they are often
diagnosed with POTS, which is a form of dysautonomia, Ellers
Danlos and MCAS or mast cell activation syndrome.
And they probably what's going on is there is one overarching
problem and it's displaying in these different ways.
So people with MCAS get hives, get food allergies, get allergic
reactions out of the blue. You've been eating strawberries
your whole life and then one day you eat a strawberry and now you
can't breathe. OK.
You have hives and rashes all over your body.
It's not I didn't try a new body wash.
I didn't do any new, you know, detergent.
And all of a sudden you're having these hypersensitive kind
of histamine reaction. And then POTS is a case where
your blood pressure, when you go from sitting to standing, drops
like that. And you, you faint.
And this is now being connected to post viral syndromes.
So when this exploded was post COVID because people had COVID.
And then later on, basically the virus caused this
disorganization of your, your, you know, autonomic system,
which manifested itself as POTS. But post virus syndrome has been
going on for as long as viruses have been along.
There just has been added attention because of COVID and
the effects. That's very interesting.
And it's interesting too since you mentioned COVID, because so
many different things are coming out post vaccination of all
different problems people are having.
Correct. And I think one thing that, you
know, as part of the medical community and one of the, you
know, physicians who I was one of the first people to get the
COVID vaccine. I got the COVID vaccine in
December 2020, you know, had all the boosters.
And I myself had a reaction where I developed very heavy
bleeding during my periods. And I, I have a large social
media page and I told my story and the beginning I said, I am
one of the first people to get the vaccine.
I have had all the boosters. This is not some type of anti
vaccine post or commentary but I want to share my story about a
side effect that I had and that post was taken down for
community guidelines violation. I believe it all right.
So here I am a, you know, credentialed, verified physician
just talking about, again, the effects of a vaccine that I had.
This is not a post about passing judgment up.
People got vaccines or didn't get vaccines.
But I think if we withhold the information, that's what breeds
the mistrust. Well, I'm a I'm a big believer.
Popular or not, I really don't care that science went out the
freaking window for the past five years.
I mean, as I said to you right before we started, I worked with
biotechnology, medical device, pharmaceutical companies for 29,
well, since 1996. So that's a long time.
You know, you know, that's a solid 30 years.
And so much of what I saw and the lack of debate, I mean, if
that, if I had ever propagated that and pushed that out, I'd
have been in jail any number of times or censored or barred from
the industry. And the fact that the discussion
got removed, I mean, I don't care what anybody thinks about
this either. I'm a big fan of X now because
you can actually post things and it can get debated.
I mean, you don't have to like it, but at least it can get
debated. And that's to me what science
always was. And it took a nasty, a really
nasty turn. And I think it's going to take a
long time for that trust to come back.
And maybe it maybe an evaluation is important because there's,
there's a lot of people that are expressing what you're, you're
saying right now. And I think that again, as
scientists, we do the best with the information that we have at
the time. And I, I say this all the time
in my podcast where we go through people stories of
misdiagnosis that it is very easy to to Monday morning
quarterback the situation. Now we have, you know, more
information and data. And what I do hope is that what
is preserved is the discourse, is the transparency, because as
an institution, right, as I'm part of the healthcare
institution, I think what we've learned is that trust is no
longer blindly given, right? It has to be earned.
And I see this with the younger generation of.
Google doctors. People using Google, but what I
will say is that, you know, to to the physicians who get, I
would say miffed or kind of upset when people are bringing
to them things that they read on Google or something they saw on
TikTok or whatnot, they're going to those sources because they're
not getting the answers that they need from the traditional
pathways. And I think it was a real eye
opener to physicians to understand that, you know, if
you ask someone how, if I said I'm going to give you a referral
to a neurologist, how long do you think it would take them to
get that appointment? Well, I can tell you first hand
because I woke up with no hearing two years ago with
sudden sensorial neural hearing loss.
And I will say my probably my biggest shock is when I actually
went to a doctor and told him I had had three confirmed
concussions within the pet prior three months.
He told me it was unrelated. And I remember thinking I'm
where this is what hospital? I mean, I might as well be in La
La land that somebody actually just said that to me.
Not that I thought it was going to resolve the issue, but I was
pretty sure they were concussion.
It was concussion related. So for some people, they're
waiting upwards of six months to see a specialist, right?
And then you may see a specialist and just not be
aligned with what they're saying.
And we have to remember when you go to see a physician, you are
asking for their opinion. And I say this all the time.
I'm a hand surgeon, right? And a patient may see me in my
office. They may see my colleague down
the street, they may see another colleague, you know, in New
Jersey, and we may diagnose them with the same problem, which is
carpal tunnel syndrome. And I may recommend you do a
cortisone shot. Someone may recommend wear a
night brace at night. And the other surgeon may
recommend surgery tomorrow. And it's not necessarily that
any of. Us are wrong, right?
Correct. I agree.
That they are different opinions.
And you know, I tell people if you are in the position to get a
second opinion or multiple opinions, please do.
And no surgeon should ever feel threatened if someone says I'm
seeking another opinion. Because in the end it is.
It's an opinion based off of our experience, off of what we see
our own patients go through. And I may have a very different
reason for recommending A cortisone injection to you as
opposed to the surgeon who's recommending surgery.
You know, that, that perspective alone, I bet the more that
people become aware of your, you having that perspective, I bet
it could have people lined up outside their, your door if
they're not already, because, because it's, it's, it's great
to hear. And you know, one of the, I'm
sure I drive my, our children crazy because I'll, I'll say,
well, let's go get a second opinion.
You know, I, I think that's, I love and oh, you don't trust
that doctor. I said I didn't trust him.
I said, this is the practice of medicine and you know your body
better than anyone else does. And you're not 100% in
agreement. You know, there's a doubt you
have in your head. I'm not the one who's facing
surgery. You are.
So why not look at another and see as you said, it might be a
cortisone shot that helps and alleviates that inflammation
before you need that scraping of your ankle or whatever it is.
Correct. And you know, I use this line
all the time, which is a line from one of my mentors at at
Lenox Hill. Actually the father was named
Chit Roundelwatt, but he always said the eyes only see what the
mind knows. That's such a good line if.
You see a doctor and you just don't think that they have come
to the right conclusion or you're uneasy with the treatment
protocol that they're suggesting see someone else because you
don't know what they don't know. Yeah.
And sometimes they don't even know what they don't know.
Now, that is to say, we are in a Really.
Privileged position where we are in New York City where there is
an abundance of physicians to go to and there are probably some
people listening to this podcast.
So they're like, there's only one rheumatologist in town,
right? And that's that's who I got and
that's when I also feel like listening to other people's
stories online, researching for yourself, using pub Med as a
great if nobody here knows what pub Med is, it is, you know, for
physicians, it is our gold standard.
What is the actual peer reviewed literature being published?
And I often tell people, because I get thousands of messages a
week, people asking me, could you help me?
Could you? And I tell them the same thing I
say #1 put your symptoms into ChatGPT and ask for the top five
differential diagnosis so that you just have an idea of what it
could be. Then go into pub Med and look
who are the people actively researching this topic.
What great advice. Well, you know, pub Med is it's,
it's behind a firewall for most articles, but for most people
you can get the gist from the abstracts.
And again, it's not your job to have a PhD in these subjects.
But I do think being able to connect with someone who is up
to date in the area that you are looking for help.
If anything, they may tell you you don't have this.
And that is also valuable. Getting back to the, your labs
look normal and everything that's also valuable pieces of
of data, right? And sometimes it's collecting
all of the different pieces of data.
But the real question is who is going to piece that together.
And that I find is what is really lacking in our
interactions with doctors is that we no longer have that
quarterback for our care. And that used to be your primary
care doctor, but nowadays you ask someone who's your primary
care doctor. It's whoever I saw at City, MD.
You know, they're they're such truth in that medicine has
changed so, so much. I wish we could go back to the
days of this really dating me, but there was Blue Cross and
Blue Shield. You know, you knew you had your
primary care doctor and they would help you find, you know,
other people if you needed it. And now things have become so
specialized and so diffractioned and divided in ways that and,
and I really see it when I talk with older people.
And I say, does your cardiologist know what the
rheumatologist or the whoever has prescribed you?
Because like I said, I work with clinical trials for over 30
years. I can count on one hand the ones
that would do cocktails. Usually it was only with cancer
drugs where you had somebody test this drug and this drug at
the same trial to find out what were the interactions that might
be causing. And I bet you could even narrow
down a lot of that when you're talking with people with
misdiagnosis, that sometimes you may have two medicines just
plain interacting poorly and causing that fainting or those
drops or spikes in blood pressure or any other things.
Absolutely. I just I have a podcast called
the Medical Detectives and we interviewed.
That's a good one, the medical. Detectives, detectives and we
interviewed. Actually, it was the patient's
wife, but it was a fascinating story because he had a history
of substance abuse and he started having the symptoms that
mimicked and looked very similar to alcohol withdrawal.
But he had been sober, had been passing every drug test, but
people just categorized him. You know, this is who you are,
this is what your problem is. And all along for two years, it
was a side effect from a medication that was prescribed
from his primary care doctor. And again, this is where I feel
like the integration of AI into our, you know, think of yourself
as the CEO of your own healthcare.
You can use AI as a tool, all right, to help you really
proactively take care of your health.
Because to be honest, I don't think the physicians are taking
the time to really go through all.
Of that, and I'm not even sure they have the time anymore.
No, they don't. With the, with the, you know,
the, all the things that have happened in medicine where
you've got my mind's blinking on the word, but you know,
everybody's in the silos and you've got the insurance
companies. And we're not going to go into
the whole insurance company issue, but we've got the
insurance companies And then the doctors have to see X number of
patients a day. And if you have to get, you
know, you've been assigned that many patients within your
insurance company or your responsibilities.
I mean, how can you talk to someone?
So I feel for the doctors, too. It's like things have really
gone awry there. Yes.
And I feel that the vast majority of patients have that
perspective that a doctor is not intentionally trying to blow you
off. They're not intentionally only
wanted to see you for for 5 minutes.
They are put in a system where there are time constraints and
resource constraints, right? Not everyone can just get an MRI
for every headache every, every time you have 1.
So they are, you know, balancing that as well.
But for a patient, you're like, well, I think I need the MRI for
my headache, right? And that's when, if you have, I
would say either a longer standing relationship with
someone like a primary care doctor, they're able to see
like, you know what, you are really off.
And I, I think we need to, you know, do something about it.
Whereas if you're just unfortunately showing up to the
ER because probably you weren't even able to get to see someone,
they don't know your background, they don't know what your normal
is. But the irony is you're more
likely to get that MRI right then and there or.
Not not in the ERMRIS are actually very, very difficult to
get to the ER again, depends on what it's for.
So for example, if you hit your head and you could possibly have
a brain bleed, right, that could kill you.
I mean, eminently and so, so you're going to have either CT
scan of your head or an MRI of your head.
If you go skiing and you injure your knee, you're going to be
checked out to make sure your knee is still, you know, stable,
but you're going to get the MRI. Out weeks later.
Correct. Because that's not an emergency.
So that's what we're talking about, the rationing of these
resources. It's not that you don't need it,
probably eventually, but in this moment like what needs to that's
in the ER setting, it really is about triage.
You've got a book coming out. What's your book about?
South my book is called Little Misdiagnosed, which is the same
name as my TikTok channel and I actually started that Channel
when I diagnosed a woman's 10 year medical mystery in three
seconds. Not in my office but over TikTok
and I thought why should it take this woman 10 years to get
diagnosed with something that I knew immediately?
And so I started to tell. Can I ask what that was?
It was a glomus tumor, so probably very few people
listening may know what that is, but this woman sent me a direct
message, she said. I don't normally talk to
strangers on the Internet, but I'm desperate.
I have had 10 years of severe fingernail pain, and nobody can
tell me what's wrong. I've seen five doctors.
They tell me nothing's wrong with me.
They make me feel like I'm crazy.
But I swear if I just rush my fingernail against something,
I'll jump to the ceiling. And so I messaged her back.
I said I also don't normally talk to strangers on the
Internet, but out of curiosity, do you have a little blue dot
under your fingernail? She said.
I do have a little blue dot under my fingernail.
So I said you're going to ask your doctor to get an MRI of
your finger. It's going to show that you have
a mask called a glomus tumor. Hand surgeon is going to take it
out and you're going to be cured immediately.
So you messaged me back six weeks later.
Oh my God, I got the MRI. It showed I had a mask.
They took it out. It was a glomus tumor.
I'm I'm completely healed now. What that woman didn't know is
that if you go on to Google and type in pub Med glomus tumor, my
name pops up. Or my maiden name, Erin
McDermott, because I'm one of the world's experts on glomus
tumors. OK, but she didn't know that
when she reached out to me, right?
She was just looking for someone who would believe her, because
if someone believed her, then someone could help her.
So I then started telling stories about my time in
residency when I had kind of these interesting cases or, you
know, examples of what would happen when someone would come
in and they didn't have insurance, right?
And they had to have surgery. And what, what did that feel
like? Or, you know, someone was
actually here illegally, didn't have papers and they had to have
major surgery, but they, they, they didn't want their name, you
know, published anywhere else. They thought they could be
picked up. So it was really about stories
of what it was like, you know, as a as a female orthopedic
surgeon also. And those stories went viral on
TikTok. And yeah, so that's the this
book is about those. It's a memoir from my time in
residency talking about these cases and how they those cases,
how they impacted me and how I practice medicine today.
Oh, that's very interesting. So if you've watched The Pit, I
would say it's very similar to The Pit or like a Grey's Anatomy
behind the curtain scene. What?
What are what are some standout stories somebody might find?
What's another one? Well, I think the story that
kind of jump started it all was actually a story that I had to
ask my brother permission to tell because it involves him as
well. But it was my first day at work
as an orthopedic surgeon, as the general surgery intern, right?
It's July 4th weekend. Everything is crazy.
People are, you know, running with, they're like, you know,
all over the place. And I had started on night
float. So I came in at 7:00 ready to,
you know, take care of all the patients at night.
It's kind of scary because there's no attendings with you.
You're doing it on your own. And I was about to admit my
first patient and work them up for a pre op and I kept getting
calls from my mom. I was like why is my mom calling
me? You know I told everyone I'm at
work please don't call me. You know I need to focus.
But she wouldn't stop calling me.
And I finally answered. I said mom.
I said what what's going on? I'm at work.
And she said it's your it's your brother.
He, he was in an accident. And So what kind of accident?
He said, well, he was in the Hamptons and he dove into a pool
and his friends, they, they had to bring him out of the pool
and, and the reception was really bad.
So I couldn't, I couldn't hear them Well, but they're taking
him to the hospital and I said, OK, well, you know, it's, it's
the first weekend of July, right?
Make sure in attending, make sure he looks over his scans and
make sure he's, he's going to be OK.
And then I went back to the pre op and then I got a call from my
younger brother a couple minutes later and I said I know, I know.
Kev hit his head and he said no, I don't.
I don't think you understand. He he can't walk.
Oh my gosh. He can't move.
He's being airlifted to Stony Brook.
And so at that moment I realized he's a quadriplegic, all right.
And I kind of walked back in shock to the, the surgery room
or all the residents were getting ready to go home.
And I just, I said, I can't, I can't do this pre op.
Like, what's, what's the matter? What's going on?
I said, I think my brother's paralyzed and I just dropped to
the ground and went into shock. And so that was kind of the
first, you know, that's I always wanted to tell that first day of
work story from my perspective back.
Of a first day, Oh my. As an orthopedic surgeon, but
being on the other side right as the family member and watching
him go through waiting, waiting for his name to be called for
the add on surgery. Going through, you know, being
in the ICU, not being able to move a muscle, going to rehab
when you're 21 year old NCAA, Team USA All American with 80
year old people who've got in their hips and knees replaced,
you know, and then just the resilience of what it's like to
recover from a spinal cord injury.
And that really set the stage for how I approach the next five
years of my training. It doesn't surprise.
Well, the story certainly surprises me.
I didn't expect you to tell me that story, and I feel like I
still need to catch my breath from it.
But having listened to you for the first bit of this podcast,
there was something in my gut saying something happened that
impacted you in an interesting way because you're, you've got a
high level of compassion in how you speak.
And, and we never met before this podcast.
And I didn't know you till I read a little bit about you and
thought, wow, this is going to be a really interesting
interview. But you, your compassion is
extremely high, which makes you exceptional in a medical in the
medical world, well. I really appreciate you saying
that it is always the the highest compliment when someone
compliments me for my empathy or my, you know, compassion towards
others. And I find that there are other
physicians who are quite popular on social media.
And what I have realized the common denominator is that we
have all had some personal, you know, family event that has
affected how we, you know, our doctors ourselves.
You know, one of my close friends, her name is lady spine
doc Doctor Betsy Grunch. Her mother was an officer who in
the line of duty was in a car accident and became paralyzed,
another neurosurgeon whose son was killed in a drunk driving
accident. And so, you know, we carry these
stories that then, you know, come out in our interactions
with our patients. And I, I know that I am a better
physician because of Kevin's accident and what happened to
our family. And I feel that now what I do on
social media is really, I'm spreading that compassion at
scale because it seems that there is a large, I would guess
or call it a compassion gap between doctors and their
patients now. I think it's, it's very
interesting because that you say the community that is drawn to
you by the Internet because in some places people describe the
Internet as super cold, because people flip off comments and
physical comments and everything else that they would never do
anywhere else. You know, they just say things
and do things that they would never do.
And so I think there's then there's that side of finding
compassion and finding someone that someone, I think people
just want to be heard. And it sounds to me like you're
an excellent listener and that you're sometimes I think the
biggest part of healing starts with you, when you feel
someone's hearing you. Absolutely.
I you know, we were talking earlier that I had given this
Ted talk about the stages of misdiagnosis and.
Oh yes, let's get into that. Well, I'll, I'll, I'll start at
the end, but to, to get to your point, but really, I find one of
the most important pieces to someone who's going through a
misdiagnosis is having a North Star believer, right?
Whether that is a family member or a friend or a doctor or
someone online who you've never actually met in person.
But these are people who make you feel seen, who make you feel
heard, who make you feel like your story matters, right?
And that you are worth fighting for getting that diagnosis.
So I hear it all the time on my podcast.
Everyone that I have interviewed, they all have a
North Star believer. And going back to the original
conversation we had about saying it's all in your head or making
you feel like you're crazy. If you hear that enough, you
start to internalize that and you believe it.
And it's those North Star believer people who say, no,
that's not right, you know, trust yourself.
I believe you and they they give you the courage to re enter this
cycle. One that's very heart warming,
one of the things you mentioned was when we were talking just
before we went on air, was your Ted talk about the stages of
grief with misdiagnosis. Can you tell us about that?
Of course. So, you know, this is based off
of Doctor Kubler Ross. She had a book called On Death
and Dying and she outlined the the five stages of grief.
And this has been a framework in use for over 50 years.
And it has been really helpful for people to process these
emotions. And what I saw was that there
was a very similar pattern of stages going on in people who
had been misdiagnosed. And I thought it would be
helpful to give them a framework to be able to process these
complex emotions, to start the conversation about the the pain
and the trauma that happened from being misdiagnosed, which a
lot of doctors don't talk about or understand that they can be
part of the problem. And, and then also just give
people that ability to finally someone see them and hear them
for, you know, this journey that they've been on.
So as I mentioned earlier, the first stage and many of the
stages are very similar to the stages of grief.
And, and they can people cannot go through stages.
They can skip stages or do stages in different orders, but
typically they are, you know, denial, right?
That's what we talked about earlier.
I just slept on it Funny. It'll go away.
But then when those symptoms, they linger, right?
They don't go away. Then the next stage is gathering
the research, right? Gathering the like, OK, now I'm
going to go to Google. I'm going to, you know, see a
bunch of doctors. I'm going to join a Facebook
group. I'm, you know, going to look on,
use AI. And then it turns into anxious
optimism, right? OK, I saw a specialist and they,
they want me to do this test and they're positive that this is
going to give me the answer, right?
And you put all your energy and all your hopes into getting this
CT scan. And then the next stage is self
doubt when that CT scan comes back as normal, didn't find
anything. You think are they?
How could they not find anything?
Maybe I am wrong, maybe I am going crazy.
And then when you realize again the symptoms are not going away,
that fades into anger. Like no, I'm not crazy.
I do have pain. I do have symptoms and you're
you're mad at the system and you're mad at your doctors and
you're mad at your family and friends who maybe don't think
this is a serious problem or you know, you're mad at someone
suggesting maybe you should, maybe you should talk to you
know, someone, a psychologist or a psychiatrist.
And then once all that angry energy fades, you are in
depression, right? You're tired.
You're tired of seeing all the doctors.
You are grieving the life that you had before you got sick,
right? And you're grieving the life you
thought you were going to have before this happened to you.
And it's incredibly isolating. And you're really, and you're
really sad. And then in the end, you're just
in the stage of apathy. You've just given up.
There's nothing more you can do. Like I've been to all the
doctors. I've told everyone my story.
There's nothing left. Now that I said, I don't want
everyone to leave this podcast being sad, you know, and
depressed. That's I don't want to cause
millions of people crying on the Internet today.
But I tell these stages because I think it's helpful to
normalize that these are the possible emotions you could be
going through. Well, what I find fascinating
that she said that is I've, I've always been very complementary
medicine oriented and worked in very traditional medicine for 30
years. So I always look at everything
as a blend, but I believe in the whole body connection in a big
way. And when I have people come in
to me that are, are a lot of different doctors groups have
always referred their patients to me to work with them with
hypnosis. So I have a very and I always
start with, when was the last time you had a full physical?
And so often they'll say to me, why are you asking that?
I'm like, because whatever's going on in your mind is somehow
impacted by your body. Now, I don't know what that is.
I'm not the MD here, but I think we need to start you with a good
physical with someone so we can just see if there's a reason
you're feeling constantly stressed or why that, you know,
you you can't. Maybe it is just because you're
hunched over your computer or because you can't.
You feel like you're walking in egg shells in your home.
You know, those are all very possible.
And we can look at those with hypnosis all day long and we
can, you know, come up with ways we can move you through things.
But there might be something physical here.
So absolutely what you're talking about, and you'd
mentioned it before, but having the silos, right, of expertise,
but there is also a silo of physical health and mental
health. And what we have to understand
is that it is a continuous spectrum and that one affects
the other. And where I see the major issues
are, is that on the physical side, if they can't figure out
what's going on physically, they're going to punt it to
mental health, right? If you are a woman, well, you
have anxiety, right? Well, you have depression,
You're having a panic attack. No, actually, you're having a
heart attack. Yeah, actually you're having a
stroke. OK.
But these are some of my most popular videos are just even
talking about this, right. And so there's there's that.
Then there's also when you are going through a physical
condition, the help you can have from working with a mental
health counselor can be the main difference.
And I find that people who have been diagnosed, whether it's
cancer, whether it's a, you know, autoimmune disorder, they
are so helped by either talking with a therapist, finding a
group, A community group with the same problems.
OK, because that your mental fortitude is what's going to
help you with your, your physical ailments and getting
back to those stages of, of misdiagnosis, I would say, you
know, the three things that I can recommend how to shortcut or
divert from those final stages of misdiagnosis are #1 finding
your North Star believers. OK, That may mean going to
multiple different doctors. That may mean opening up to
family who you wouldn't normally talk to about medical issues #2
is having the courage to re enter the cycle right?
It's really hard to find another doctor just to be told the.
Same thing. Right.
That is physically and emotionally draining.
So it takes different I call this the will to fight.
It takes courage to have the will to fight and re enter that
that cycle. And then finally, we are living
in a day and age where we have access to tools that were not
available even six months ago, right?
I mean, there there's an AI facial recognition app where you
can upload your picture and you can diagnose you with a rare
genetic disease in three seconds.
OK. I remember years ago working
with a company that was doing that with the Irish that
ultimately became part of Clear, correct, correct.
But it was to diagnose mental imbalances.
It was psychiatric originally. Correct.
So, you know, the putting together all of these, you know,
my social media channel and my podcast and all things has been
building towards what I am actually building, which is a
social media platform called Feel Better, where you have
access to credible health information from health experts,
but then also be able to find a community of people who are
going through the same problem as you.
That's fantastic. What, what I, you know, one of
my thesis is that it's an, if you're a woman with
endometriosis, there's no one you trust more than another
woman with endometriosis. And I really believe in the
power of combining the medical expertise with the community
support. Again, attacking it from the
physical health and the mental health is how we're all going to
be able to help take care of each other.
Oh my gosh, I could keep talking to you, Doctor Aaron Nance, for
another hour, but our time is up and I wish it wasn't because,
well, first of all, that was one heck of an ending.
And I. And what was the name of this
community you're creating? So it's called feel better, feel
better BETR it will be an app launching in June.
Not sure when the podcast is airing, but yeah, we are, you
know, as I said, taking the best from medical social media and
then working with health foundations and really trusted
communities that are rooted, you know, in in health and and
community support. And that's, we just want to make
it as easy as possible for you to, they say, help us, help
ourselves. And that's the ultimate goal.
Well, this has been an absolute pleasure.
Thank you for your time. Well, thank you, Diana.
It's a pleasure. And thank you for inviting me on
and getting these types of stories on because as I said, I
think so many people are feeling isolated and lonely going
through these health challenges. And I just want them to know
that you're not alone, you do matter, and that your stories
are worth listening to. That comes across loud and clear
and it's heart warming. Thank you.
Thank you so much. That's Doctor Aaron Nance and
I'm Diane Griselle. I'm also known as silver
disbedience. This the silver disbedience
perception dynamics podcast. There will be all kinds of
information below this podcast where you can follow doctor
Aaron Nance and I highly recommend you do because she's a
heartworm warming, fresh breath of air so and also happens to be
very intelligent and smart and accomplished too.
So what a combo. So please hit subscribe, share
this with your friends. Follow Doctor Nancy's
information below. Thanks again everybody and thank
you. Thank you.