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I’m Not Sick, I Don’t Need Help! | Dr. Xavier Amador | TEDxOrientHarbor


[Music]
I’m a clinical psychologist who for
thirty years has been working with
people with schizophrenia bipolar and
related psychotic disorders now
some people still think schizophrenia is
split personality I think it’s worth
taking a moment when we talk about these
these psychotic illnesses we’re talking
about neurodevelopmental disorders like
Parkinson’s disease where the person
doesn’t have Parkinson’s disease all
their life they develop it later same
thing with these disorders that I’m
going to be talking about the other
thing is I think a word about psychosis
what is it it’s really a couple of
symptoms that we see most often false
perceptions hallucinations hearing
things hearing voices seeing things that
aren’t there and having delusions I’m
not talking about political opinions I’m
talking about fixed false beliefs
sometimes they’re bizarre there’s an
alien implant in my brain or sometimes
they’re not so bizarre my wife is having
an affair on me
for many years I worked as a clinician
trying to help people with schizophrenia
bipolar and related disorders and I
heard over and over again I’m not sick I
don’t need your help you’re the crazy
one not me and as it turns out about
half of all people with these illnesses
do not take medications that have from
the view of other people help them so
what is this problem what are the
lessons that we learned when I say we
I’m talking now about my colleagues at
at Columbia University where I worked
for two decades doing research what we
uncovered were two main lessons I want
to share with you today
first it’s typically not denial when
someone says I’m not sick for months
years and even decades and to the the
way we were speaking to our patients was
making things worse far worse so let me
start at the beginning the beginning
really starts with my brother Henry who
develop schizophrenia back when I was 21
years old this is a picture of Henry and
myself after we had emigrated from Cuba
this was on the heels of the Cuban
Revolution
that’s me driving the car and Henry
looking through the window Henry was
much more than a brother he was a father
he was as I said at his eulogy Henry was
my rock
he really was a mature responsible
person now why am I telling you this
because the story of this research is
all about relationships and what happens
between family members and health care
professionals who are trying to help
people with these serious mental
illnesses 20 years after this picture
was taken
my brother developed schizophrenia he
heard voices the voice of the devil out
loud just like you can hear my voice now
he didn’t think I have a problem I’m
gonna go see a doctor he thought it was
the double he had delusions our mother
was in cahoots with the devil
her eyes were laser beams this is where
it got a little bit bizarre and she was
actually cutting him lacerating him he
tried to show me the wounds of course
there were no wounds for a week I argued
with my brother I begged him to go to
the hospital at first I gently explained
to him Henry you’re not thinking
straight something is clearly wrong for
a while I thought he might be on drugs
that wasn’t the issue after a week of
gentle persuasion it turned into harsh
confrontation accusing him of being
immature irresponsible not caring about
our poor mother she hasn’t she been
through enough trying to make him feel
guilty I got him into the hospital like
many many families millions at least
three and a half four million families
in America have been through this
experience I had to call the police and
he was involuntarily admitted to the
hospital over the course of a month and
and and you know don’t faint but back
then in the 1980s people could stay in
the hospital for that long he got better
antipsychotic medications eliminated the
hallucinations eliminated the delusions
and he promised he would take his
medication I came home where did I find
it in the trash
and what followed was seven years of my
brother and I butting heads me telling
him you’re ill you need help please get
help him saying no I’m not
nothing’s wrong with me and what did our
relationship look like like this him
running away from me and running away
from all the people who were trying to
help him not much of a relationship he
was homeless for a while he was picked
up by the police a lot never broke laws
thankfully during that same time I was
being trained as a clinical psychologist
and I picked up some gems and probably
the the most important tool I picked up
was not from a psychiatrist or
psychologist it was from Albert Einstein
it was the definition of insanity I was
doing the same thing over and over and
over again for seven years while he was
running away from me he was being
involuntarily admitted almost 30
hospitalizations while I argued with him
Henry you’re sick you need help please
get help over and over again expecting a
different result I called my brother we
had a conversation we got together I
promised him I would never again tell
him he was mentally ill this is after
seven years of trying to convince him
and I also did some other things I’m
going to tell you about that are based
in the research my colleagues and I have
done our relationship changed
dramatically and with that he accepted
treatment and in fact in the next 18
years our relationship looked like this
this is a picture taken out here that’s
my brother on the right that’s me with
the Jerry Seinfeld haircut the way it
looked back then now that’s not a
delusion me thinking that was cool that
was just style
[Laughter]
Henry look at the way he’s holding me I
actually can’t look at this picture
myself anymore without getting very
emotional but if you can look at the way
he’s holding me and smiling at me you
know sometimes a picture truly is worth
a thousand words
the love was back the trust and respect
were back and importantly he was taking
medication reliably for 18 years one
hospitalization truly voluntary he
checked himself in he called me and said
I’m going to the hospital so this is the
foundation of a lot of insights of my
own it led to a lot of research that our
group did at Columbia University and
people around the world followed up on
it’s now in our diagnostic manual for
mental disorders I was asked to submit
the text on the latest edition of this
which came out in 2013 so I’m going to
summarize some research in just one
minute what do we know we know that
unawareness of illness notice we don’t
use the word denial is typically a
symptom of the disorder like a
hallucination and it’s very much like
what we see in neurological disorders if
you’ve ever worked with neurological
patients as I have you sometimes see
people who are paralyzed and they don’t
know it that symptom is called Ana cig
nausea it’s a tongue twister I didn’t
come up with it it was a French
neurologist in 1919 AB insky so if it’s
Ana signo sia that already starts to
suggest we should be talking to people
differently about their illness not
trying to educate them I wouldn’t tell
someone to stop hallucinating she’s just
stopped being delusional stop
hallucinating because it’s not under
their control but that’s what I had been
doing for many years with not only my
brother but many patients this symptom
and again this is in our psychiatric
manual for mental disorders even though
it’s still not widely known in our field
is the most common predictor of who will
not take medication 50 to 75 percent of
people with these disorders do not take
the medications that reduce those
symptoms I’ve been telling you about the
psychotic symptoms it predicts all kinds
of problems poorer course of illness
involuntary hospitalizations like my
brother had and even aggression in
violence and of course we know some of
the stories that have hit the headlines
in some of the cases I’ve worked on like
Theodore Kaczynski who was diagnosed
with paranoid schizophrenia never
understood he was ill so I’m talking
about this but what does it feel like to
have an ass Ignazio for this I need a
volunteer someone who is married you
don’t have to be happily married just
married could you raise your hand if
you’re married sir can I ask you to help
me right there in the yellow shirt what
is your first name Sir Richard Richard
I’m actually uncomfortable doing this
this is a strange thing I’ve been asked
to do by your family how long you’ve
been married to your to your wife 46
years 46 years what’s her first name
Eleanor Eleanor and where is she in New
York City I’ve been asked to do an
intervention with you you’re not
actually married to Eleanor I have
restraining orders backstage I can I can
bring you back here and show them to you
Eleanor and her husband and family had
been stalked by you for at least 20
years I’m aware of if I showed you those
restraining orders would that help you
to understand I don’t think so you don’t
think so laughter please would they
convince you no okay when you leave here
when you go home where will you go to my
house to his house is that the house
Eleanor lives in when she’s here in
orient yes yeah
well the neighbors see you they call the
police and you end up in front of a
judge it’s called a diversion Court and
the judge says Richard I have really
almost 10 years of paperwork here on you
on your rap sheet I understand you have
a mental illness you believe you’re
married to this woman Eleanor you
violated the restraining order again by
going to her home now I’m the judge I’m
gonna give you a choice Richard you can
go to the hospital and we’ll adjourn
your case of trespassing and by the way
let me ask you something Richard when
you went to the house and the police
showed up and told you you weren’t
married to Eleanor this was not your
house do you think you would resist
going with them in all likelihood and
all likelihood so I’m the judge again
so Richard I have also a of resisting
arrest here so I’m giving you a choice
you can go to the hospital we’ve
arranged something here close by and get
some psychiatric help and in six months
we’ll review and maybe dismiss these
charges or you can go back to jail and
we’ll have an arraignment on Monday
morning you’ll spend the weekend in jail
what would you like to do what do you
think you’ll do Hospital hospital
wonderful choice so you go to the
hospital they relieve you of your
clothing they put your personals in a
plastic bag then they give you a
clothing back they take your vital signs
they offer you medication this one here
is for the delusions that you have this
one here is bring xiety and this one
here is for side effects the nurse gives
you the cup what do you do with it I
would take the medication okay how long
would you take that medication if you
were there for two weeks you take it
every day I would wonderful so then they
can write a great report to the judge
this patient is adhering to treatment
let’s fast forward now because they
don’t let you go back to your home they
want to send you to a group home to be
with other mentally ill people do you go
probably not probably not where do you
go instead probably not probably if I
don’t have a home to go to I probably
live in my car ten years five years go
by you never see Ellenor again you never
see your home again do you think you’d
come to understand you are not married
to her that you have a mental illness I
believe I would in five years really
that’s all it would take
did you propose marriage yes that didn’t
happen
you really think in five years you could
come to believe that the memory that
you’re having right now of that proposal
never happened or the wedding do you
think you could be really convinced that
all of that was just a dream probably
not thank you for your help can we thank
Richard for helping me real quickly any
emotions that you had as we were doing
this I know it’s a roleplay fleeting
emotions just name one resistance
resistance how about any anger or fear
yes yes okay thank you for again for
your help let’s thank him again
and please call Eleanor when this is
over okay that’s what it’s like this is
a fixed firm belief it’s it’s concrete
it’s solid it’s in Richards bones
he knows he’s married to Eleanor and
that’s what it’s like for millions of
Americans with these serious mental
illnesses so when dealing with somebody
who has Ana’s signo seeif or mental
illness not denial of mental illness the
doctor knows best or the father or
mother knows best
or the little brother in my case doesn’t
work there’s no collaboration can I
expect Richard to be grateful were you
grateful for my advice now perceptive no
he learned how to go underground like my
brother did and accept treatment for a
month and maybe longer just to get his
freedom back this is what happens again
to millions of Americans with these
illnesses adherence refers to medication
adherence medication compliance like
again 50% of patients he’s very unlikely
to take medication when I can expect
what the research shows us is that we
will get somebody who is fearful angry
suspicious demoralized lonely and who
will not take the medication so how do I
deal with them well the approach is
believe it or not I told you earlier
that this is about relationships we have
to create respectful non-judgmental
relationships these the research shows
result in acceptance of treatment for an
illness the person doesn’t believe they
have so if Richard comes to me five
years from now and he tells me his story
I would listen to it with respect and
without judgment that Ellen LEEP stands
for listening reflectively again with
respect and without judgment so after he
tells me his story I would say so you
went to that TEDx talk and they took
away your wife your home everything did
I understand you correctly which would
be very different than what had been
hearing which is you know Richard we
want you to calm down we’ve got to keep
you away from Eleanor and what we’ve
learned through doing a lot of research
is that people with these illnesses feel
relief now this is not dishonest I’m not
pretending
I believe I’m simply reflecting back his
experience I would empathize with
Richard strategically especially with
the emotions around the delusions it
must be terrible to have this happen how
was it for you well I was resistant were
you angry yes I was angry you know what
Richard I’d be angry too we work on
those things we could agree on it’s
never going to be that Richard is not
married to Eleanor
that’s a delusion we’ve known that for
60 years we don’t try to talk people out
of their delusions well we also don’t
try to talk people out of their ana
signo Xia there unawareness of mental
illness we partner on what we can work
on together there’s three other tools we
use but again the focus is respectful
non-judgmental communication so with my
brother so mom’s the devil in her eyes
or laser beams is that what you’re
saying yes well no wonder you’re so
terrified of her I would be too Henry if
this happened to me those are the kind
of conversations I had with him if he
asked me do you really believe this if
Richard asked me do you really believe
I’m sick I might delay we call it the
three A’s
I apologize for my opinion I acknowledge
my phal ability agree to disagree what
does that sound like Richard I’ll answer
the question if you want me to but I
want to apologize I might upset you and
I could be wrong I hope you don’t have
to argue when we give our opinion we’re
using those three tools and then we’re
not afraid to apologize for things like
previous confrontations like I did with
my brother apologize for things like an
involuntary hospitalization that we were
a part of sometimes people will say why
are you repeating everything I say the
research shows is you can apologize for
that I’m sorry I’m repeating everything
I just want to understand you I wasn’t
listening before I kept telling you you
were ill I’d like to listen so it’s a
very different approach it’s not the
medical model approach it’s the
motivational interviewing approach it’s
a whole other field of study and I’ll
end with some closure on the story of my
brother I lost sight of who my brother
was in those seven years that we fought
he was a mature kind selfless person he
died being Henry
he was safely on a city bus heard a
woman behind him struggling with
groceries he got off the bus got on a
sidewalk and was handing her groceries
when someone who had lost control of
their car ran him down he saved that
woman’s life it was an act of kindness
that he was engaged in when his life
ended he had a very good life for those
18 years he had a girlfriend he had work
and he had his relationships back as
that picture I showed you I think
demonstrates best so how we approach
people who have these illnesses who say
I’m not sick is vitally important and
the relationships we build are the key
thank you
[Applause]
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