Disease Begins Before Diagnosis
[Music]
[Laughter]
[Applause]
when i was
29 years old i got so sick
that i had to stop working i had this
intermittent burning pain in my legs i
woke up each morning with sore and
swollen joints
and i had a visible tremor my body was
so
sluggish that i often needed help just
to get to the bathroom
and my brain was so foggy that i could
barely read
i eventually quit my job as an editor
before i was fired from making too many
obvious mistakes
and i rarely left the house presented
with all of these symptoms
my doctor ran a few standard tests and
told me that everything looked fine
she didn’t see any reason to refer me to
a specialist
and she suggested an antidepressant if
things didn’t improve
i was devastated i’d lost my income
and my social life and i didn’t know
where else to turn for help
my husband of less than a year thought i
was dying
my world was crumbling i was 22
the last time my world fell apart that’s
when my dad died and i felt
devastated and alone i went hunting for
stories that perfectly captured the
grief i was feeling and i found them
i read novels and essays and memoirs
about losing a parent
and they made me feel seen like it
wasn’t the first person to ever go
through this
and so later when i found myself
disabled but
undiagnosed i went looking for stories
about that too
only this time i couldn’t find them
i couldn’t find any traditionally
published essays or books
about life before diagnosis i found a
lot of stories that wanted to offer me
hope
but none that could offer me solace
but how could that be the cdc estimates
that in 2018
there were almost 45 million people in
this country
living with at least one chronic
condition that interferes with their
daily life
and according to those estimates that
number is rising
by more than 700 000 people per year
on average so it stands to reason that
there are a whole lot of people
living with unexplained symptoms right
now just like i was
i bet you know someone with an
undiagnosed chronic illness
maybe they complain about their health
all the time or they always seem to
cancel plans
maybe this has been happening for a
while and you’ve started to write them
off as a hypochondriac
or a drama queen maybe you believe
that if something was seriously wrong
their doctor would have figured it out
by now
that’s what i believed i believed that
if you had a good doctor
and a real illness then diagnosis and
recovery
wouldn’t be far behind so why wasn’t
that happening for me
since i couldn’t find any stories about
life before diagnosis
i decided to start collecting my own and
over the last couple years i’ve
interviewed
around 70 people about their experiences
with chronic illness
and i’ve shared those stories on a
podcast called no end in sight
i also spend a lot of time on twitter
which is where today’s artwork comes
from
and i’ve heard hundreds if not thousands
more anecdotes there
chronic illness is a pretty big umbrella
and it would be impossible to list them
all
some of them are triggered by an injury
like a car accident or something in your
environment
like asbestos or an acute infection like
the epstein-barr virus that can cause
mono
some of them are genetic and some of
them appear to be plain old bad luck
but they all have something in common
and that’s the chronic part
they’re health conditions that can’t be
cured and so they must be managed
most people describe a daily baseline of
symptoms that they live with all the
time
and then periods of more intense
symptoms that are usually called flares
when i had to stop working at 29 it
turned out to be a flare caused by toxic
mold in my house
and so these days i still live with
symptoms every day and i don’t work
full-time
but i have a few good hours most days
when i can read or write
or participate in events like this one
some people
live totally normal lives with their
symptom baseline
while many other people find it hard to
leave their homes or their beds
because their symptom baseline makes
regular life impossible
i interviewed a woman named rachel who
was diagnosed as a teenager with myalgic
encephalomyelitis
or me which you might know as chronic
fatigue syndrome
and at the time her doctor told her that
she would rather be diagnosed
with a treatable cancer than with emmy
and if you don’t know much about chronic
illness then that might sound incredibly
inflammatory
because cancer is serious and we all
know it
but chronic illness is serious too
it’s been years since she got that
diagnosis and rachel told me that she
appreciated how honest her doctor was
and she felt validated to have her
illness taken seriously even though it
wasn’t life-threatening
there are a lot of chronic illnesses
that are unlikely to take your life
but incredibly likely to take you away
from the life you love
over the course of my interviews i’ve
learned that there are a lot of
misunderstandings about diagnosis
that leave genuinely sick people feeling
isolated
and unsupported just like i felt
most people i talked to have spent years
wondering if their symptoms are all in
their heads
and even worse they often feel like
their loved ones believe that too
like their loved ones are writing them
off as weak or lazy
without a medical confirmation of their
illness most people feel uncomfortable
asking for accommodations or using
mobility aids
and without a diagnosis people can’t
access
benefits disabled parking passes or even
patient support groups
it turns out the diagnosis wasn’t nearly
as clear-cut
as i thought it was not only does it
take a long time
but people are often misdiagnosed along
the way
i’ve spoken to two people with a genetic
condition called ehlers-danlos syndrome
who were initially diagnosed with
lupus and autoimmune disease i’ve spoken
to someone with lyme disease
who was initially told that she has
diabetes and someone with diabetes who
was initially told that nothing was
wrong at all
and almost everyone i talked to has had
a doctor blame
all of their symptoms on stress
depression or anxiety
often your doctor will tell you that’s
the cause without consulting a mental
health professional
and without offering you any follow-up
testing or specialized
care that’s what happened to me when my
doctor offered me an antidepressant
instead of a neurology referral
but even when you and your doctor both
agree that you have the right diagnosis
it might not explain anything
if you have an autoimmune condition like
hashimoto’s disease
then you might learn that your immune
system is attacking your own tissue
but nobody knows why and there are
clinical diagnoses like fibromyalgia
that we don’t know how to find in lab
work yet and so you’re left wondering
what is happening
in addition to why and if that’s not
frustrating enough
your diagnosis might not come with any
good
evidence-based treatment options science
and medicine are still looking for
answers
and research funding isn’t distributed
what i’d call fairly
plus it can take a long time for
academic research to make its way into
medical practice
so many people i talked to are cobbling
together their own treatment options
through some combination of off-label
drugs dietary experiments
and plenty of rest rest is actually one
of the most effective tools for managing
or preventing symptom flares
but prioritizing rest can be incredibly
difficult
and sometimes impossible when you have
bills to pay
and a family to care for our medical
system also has this glaring
problem where there’s no feedback loop
to let doctors know when they’re wrong
so if you’re living with unexplained
pain or fatigue and your doctor can’t
help you
you might go looking for a new doctor
and while your new doctor may help you
get a diagnosis
your old doctor will go on believing
wrongly
that you were just another anxious
hypochondriac
so how do you actually get a diagnosis
it turns out that it’s more of a process
than an event and i’m going to explain
that by telling you about felicia
a woman i interviewed when felicia was
25
she started to feel this intermittent
tingling in her legs
and so she went to a neurologist who ran
some nerve conduction studies
and told her that she had idiopathic
neuropathy before sending her on her way
idiopathic is one of those words that
comes up a lot in these stories
it basically means yes this is happening
but we don’t know why
anyway so felicia was working these long
days on her feet and her legs kept
misbehaving over the next three years
she started to need longer and longer
breaks just to get some relief from this
neuropathy
and by the time she was 28 it got so bad
that she had to stop working
felicia told me that she could barely
walk but she had to make up an excuse
when she called off work because she
didn’t have an actual explanation to
give her boss
and i want to tell on myself a little
bit here
by letting you know that a lot of
stories start this way
right now this could be a story about
fibromyalgia or functional neurological
disorder or me which i mentioned earlier
but i chose felicia’s story because
unlike those diagnoses i just listed
felicia’s illness is no longer shrouded
in skepticism and stigma
so after a few weeks of using her
grandma’s walker to get around the house
felicia went to the er where she got an
mri and was diagnosed with multiple
sclerosis
and then felicia spent six weeks in the
hospital
trying to recover from this flare that
might have been prevented or at least
diminished
if her ms had been caught earlier closer
to when our symptoms started
and this time between symptom onset and
diagnosis
is glossed over in a lot of illness
narratives
for felicia that time lasted three years
i’ve spoken to people who spent a couple
weeks in this phase
and i’ve spoken to people who spent
literal decades
in this phase people in this phase are
often classified as
problem patients the worried well
hypochondriacs
maligners and even drug seekers
people in this stage can feel isolated
and crazy and scared
because their bodies are failing them
but nobody knows why
they often have little support from
their friends family and colleagues
because most of the general public
doesn’t know about this stage at all
they watch house or grey’s anatomy or er
and they believe
somehow the diagnosis should be
instantaneous
but it’s not instantaneous first
there’s the alarm you feel when your
body stops behaving the way that you
expect it to
and the frustration when your test
results come back normal and so you’re
left to wonder if maybe this is all in
your head
in our current system most doctors can
only spend 15 to 20 minutes with their
patients
and that’s not enough time to take a
comprehensive health history
most of my interviews last well over an
hour
and during those early appointments you
might feel like your doctor doesn’t
really
understand what’s going on with your
body or how serious it is
fatigue for example takes on a whole new
meaning when you become chronically ill
it’s not the same as being tired and you
have a vocabulary problem if that’s what
your doctor hears when you tell them
about your fatigue
one woman i spoke to randy spent decades
looking for answers before she was
diagnosed with ehlers-danlos syndrome at
the age of 50. and she told me
that she started to describe her
sometimes debilitating fatigue to
doctors
by telling them she felt like she’d had
two bottles of benadryl
so next comes the difficult and
sometimes slow process
of validating your symptoms our private
insurance system can be
tough to navigate and they sometimes
refuse to pay for
tests or treatments that your doctor
thinks you need
and of course not everyone can afford
insurance in the first place
so in order to access specialized care
you need approval from your insurance
company
you need the money to pay for your
co-pay or your deductible
you need time off work for probably a
lot of appointments
and you may need to travel to another
city or even another state
just to find a doctor who might know how
to help you
specialized care isn’t accessible to a
lot of people
and even when you can access specialized
care you still need to find a doctor who
believes you
systemic bias in medicine is a huge
problem that treats some patients like
they’re not
credible this bias impacts
black patients women young people
anybody with a pre-existing mental
health diagnosis
and folks who are told to lose weight
before they can access follow-up care
but if you have the energy to be
persistent
and the money to pay for specialists and
the support to travel to multiple
doctors
then your chart will start to fill up
with the formal names for your symptoms
my chart for example now says that i
have small fiber neuropathy
and postural orthostatic tachycardia
syndrome
neurological stuff
and then at some point hopefully
your symptoms will start to tell a story
that your doctor understands
at some point you get a diagnosis
diagnosis itself can be incredibly
fraught
people tell me over and over again that
their diagnosis
brought them validation because it
confirmed that they hadn’t been
imagining their
experience this whole time and it gave
them permission
to rest instead of constantly pushing
their bodies until they flared
and to ask for accommodations it also
gave them the language they needed
to connect with other people who
understand and i can’t overstate how
important this is
access to patient communities changes
lives
but diagnosis could also be
anticlimactic
because as i mentioned earlier it
doesn’t always come with an explanation
let alone a cure and sometimes it comes
long after you’ve been managing your
symptoms with the limited options
available
but one of the strangest things about
diagnosis is that sometimes it’s the
first time that the people around you
acknowledge your struggle and express
sympathy as if the diagnosis
itself is the bad news
but when you’ve been living with
disabling symptoms that are unexplained
for months years or even decades
the diagnosis itself is usually not the
bad part
it might even be a relief and even if
you’re relieved
this whole process can be riddled with
grief
earlier i mentioned losing my dad and
how hard that was
when i became chronically ill i felt
like i was losing myself
still i find myself grieving the life i
had before
i used to manage an online publication
and collaborate on a monthly
storytelling event
and volunteer three different places
every week
i used to get my fulfillment from the
things i did
and then suddenly i couldn’t count on my
brain and body to function
on any given day and i had to find
fulfillment elsewhere
but when i lost my dad the people around
me had some
context for what i was feeling even if
they’d never lost a parent themselves
they’d seen stories about losing a
parent on tv
and in movies and in books they had a
vague idea about what they were supposed
to say
and when i got so sick that i
disappeared from my own life
most of the people around me had no
context for what was happening
they didn’t know that you could get that
sick and never really get better
and since they’d never seen a story like
mine before
they struggled to imagine what i was
feeling and what they were supposed to
say
and so hopefully today i’ve given you
a little bit of context about what it’s
like to become chronically ill
i’m sure some of you have been through
this before and you’re managing a
chronic illness right now
and i bet some of you are in that
excruciating stage
where everyone implies that it’s all in
your head it’s not
it just takes time and maybe some of you
are health care professionals who went
into medicine
because you wanted to help people but
you don’t know what to say to patients
you can’t help
i’m going to tell you right now that the
most powerful thing that you can do for
a patient who might be chronically ill
is to believe them even if you don’t
know how to help them
and actually that’s true for all of you
the most powerful thing that you can do
for anybody in your
life who’s navigating an ongoing health
issue
is to believe them believe that they’re
trying as hard as they can to get to the
root of the problem
instead of imagining that you’d know
what to do in their situation
believe that they’re using all available
resources to build the best life
possible
instead of bombarding them with
suggestions about how to get healthy
believe that they found their bodies
limits through exhausting trial and
error
instead of encouraging them to just push
a little harder
and more than anything else believe them
when they tell you how they feel
instead of looking for a silver lining
in their pain or their grief
whatever they’re going through believe
them
it’s enough thank you