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