TEDSummit
Jennifer Brea: What happens when you have a disease doctors can't diagnose
Jen Brea: Hvad sker der, når man har en sygdom, som lægerne ikke kan diagnosticere
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2,042,782 views
For fem år siden blev TED Fellow Jen Brea gradvist syg af myalgic encephalomyelitis, også kendt som kronisk træthedssyndrom; en ødelæggende sygdom, som alvorligt forringer normale aktiviteter og gør selv ruslen af lagner uudholdelig på dårlige dage. I denne gribende fortælling beskriver Brea de forhindringer, hun har stødt på i hendes søgen efter behandling på en sygdom, hvis årsag og fysiske påvirkninger vi ikke helt forstår, såvel som hendes mission med at dokumentere gennem film livet hos patienter, som medicin har svært ved at behandle.
Jennifer Brea - Filmmaker
Jennifer Brea was a PhD student at Harvard when, one night, she found she couldn't write her own name. Full bio
Jennifer Brea was a PhD student at Harvard when, one night, she found she couldn't write her own name. Full bio
Double-click the English transcript below to play the video.
00:17
Hi.
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Hej.
00:19
Thank you.
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Tak.
00:20
[Jennifer Brea is sound-sensitive.
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[Jennifer Brea er lydfølsom.
00:22
The live audience was asked
to applaud ASL-style, in silence.]
to applaud ASL-style, in silence.]
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Publikum er blevet bedt om
bifalde på tegnsprog, i stilhed.]
bifalde på tegnsprog, i stilhed.]
00:25
So, five years ago, this was me.
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Så for fem år siden,
var det her mig.
var det her mig.
00:29
I was a PhD student at Harvard,
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Jeg var Ph.d.-studerende på Harvard,
00:31
and I loved to travel.
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og jeg elskede at rejse.
00:34
I had just gotten engaged
to marry the love of my life.
to marry the love of my life.
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Jeg var lige blevet forlovet
med mit livs kærlighed.
med mit livs kærlighed.
00:39
I was 28, and like so many of us
when we are in good health,
when we are in good health,
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Jeg var 28 år, og ligesom så mange andre,
når man har et godt helbred,
når man har et godt helbred,
00:43
I felt like I was invincible.
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så følte jeg mig uovervindelig.
00:46
Then one day I had
a fever of 104.7 degrees.
a fever of 104.7 degrees.
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Men en dag fik jeg 40°C i feber.
00:50
I probably should have gone to the doctor,
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Jeg skulle sikkert have gået til lægen,
00:52
but I'd never really been sick in my life,
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men jeg havde aldrig rigtigt
været syg i mit liv,
været syg i mit liv,
00:55
and I knew that usually,
if you have a virus,
if you have a virus,
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og jeg vidste,
at hvis man har en virus,
at hvis man har en virus,
00:57
you stay home and you make
some chicken soup,
some chicken soup,
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så bliver man hjemme
og laver kyllingesuppe,
og laver kyllingesuppe,
01:00
and in a few days,
everything will be fine.
everything will be fine.
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og om et par dage,
så er alt godt igen.
så er alt godt igen.
01:04
But this time it wasn't fine.
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Men denne gang
blev det ikke godt igen.
blev det ikke godt igen.
01:07
After the fever broke,
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Efter feberen faldt,
01:09
for three weeks I was so dizzy,
I couldn't leave my house.
I couldn't leave my house.
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var jeg i tre uger så svimmel,
at jeg ikke kunne forlade mit hus.
at jeg ikke kunne forlade mit hus.
01:13
I would walk straight into door frames.
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Jeg gik direkte ind i dørkarme.
01:16
I had to hug the walls
just to make it to the bathroom.
just to make it to the bathroom.
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Jeg klyngede mig til væggen,
bare for at komme på badeværelset.
bare for at komme på badeværelset.
01:20
That spring I got infection
after infection,
after infection,
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Dét forår fik jeg infektion
efter infektion,
efter infektion,
01:23
and every time I went to the doctor,
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og hver gang jeg gik til lægen,
01:25
he said there was absolutely
nothing wrong.
nothing wrong.
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sagde han,
at der intet var galt.
at der intet var galt.
01:29
He had his laboratory tests,
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Han havde sine laboratorietests,
01:31
which always came back normal.
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som altid kom tilbage normale.
01:33
All I had were my symptoms,
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Alt, hvad jeg havde,
var mine symptomer,
var mine symptomer,
01:35
which I could describe,
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som jeg kunne beskrive,
01:37
but no one else can see.
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men som ingen andre kunne se.
01:41
I know it sounds silly,
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Det lyder fjollet,
01:42
but you have to find a way
to explain things like this to yourself,
to explain things like this to yourself,
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men man må finde en måde
at forklare det til sig selv på,
at forklare det til sig selv på,
01:45
and so I thought maybe I was just aging.
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og så tænkte jeg, at jeg måske bare
var ved at blive ældre.
var ved at blive ældre.
01:50
Maybe this is what it's like
to be on the other side of 25.
to be on the other side of 25.
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Måske er det sådan her det føles
at være over 25.
at være over 25.
01:53
(Laughter)
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(Latter)
01:56
Then the neurological symptoms started.
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Så begyndte de neurologiske symptomer.
01:59
Sometimes I would find that I couldn't
draw the right side of a circle.
draw the right side of a circle.
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Nogle gange kunne jeg ikke tegne
den højre side af en cirkel.
den højre side af en cirkel.
02:04
Other times I wouldn't be able
to speak or move at all.
to speak or move at all.
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Andre gange kunne jeg ikke tale
eller bevæge mig.
eller bevæge mig.
02:10
I saw every kind of specialist:
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Jeg så enhver form for specialist:
02:12
infectious disease doctors,
dermatologists, endocrinologists,
dermatologists, endocrinologists,
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infektionsmedicinske læger,
dermatologer, endokrinologer,
dermatologer, endokrinologer,
02:15
cardiologists.
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kardiologer.
02:16
I even saw a psychiatrist.
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Jeg så endda en psykiater.
02:19
My psychiatrist said,
"It's clear you're really sick,
"It's clear you're really sick,
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Min psykiater sagde,
"Det er tydeligt, at du er virkelig syg,
"Det er tydeligt, at du er virkelig syg,
02:22
but not with anything psychiatric.
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men ikke psykiatrisk.
02:26
I hope they can find out
what's wrong with you."
what's wrong with you."
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Jeg håber, de kan finde ud af,
hvad du fejler."
hvad du fejler."
02:30
The next day, my neurologist
diagnosed me with conversion disorder.
diagnosed me with conversion disorder.
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Den næste dag diagnotiserede min neurolog
mig med konversionssyndrom.
mig med konversionssyndrom.
02:34
He told me that everything --
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Han fortalte mig at alting --
02:37
the fevers, the sore throats,
the sinus infection,
the sinus infection,
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feberen, den ømme hals,
bihulebetændelsen,
bihulebetændelsen,
02:40
all of the gastrointestinal,
neurological and cardiac symptoms --
neurological and cardiac symptoms --
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alle de gastrointestinale,
neurologiske og kardiale symptomer --
neurologiske og kardiale symptomer --
02:44
were being caused
by some distant emotional trauma
by some distant emotional trauma
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var forårsaget af
et fjernt, følelsesmæssigt trauma,
et fjernt, følelsesmæssigt trauma,
02:47
that I could not remember.
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som jeg ikke kunne erindre.
02:50
The symptoms were real, he said,
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Symptomerne var virkelige, sagde han,
02:52
but they had no biological cause.
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men de havde ikke biologisk årsag.
02:56
I was training to be a social scientist.
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Jeg var ved at uddanne mig som sociolog.
02:59
I had studied statistics,
probability theory,
probability theory,
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Jeg havde studeret stastistik,
sandsynlighedsregning,
sandsynlighedsregning,
03:02
mathematical modeling,
experimental design.
experimental design.
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matematiske modeller,
eksperimentelt design.
eksperimentelt design.
03:07
I felt like I couldn't just reject
my neurologist's diagnosis.
my neurologist's diagnosis.
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Jeg følte, at jeg ikke bare
kunne afvise min neurologs diagnose.
kunne afvise min neurologs diagnose.
03:11
It didn't feel true,
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Det føltes ikke rigtigt,
03:13
but I knew from my training
that the truth is often counterintuitive,
that the truth is often counterintuitive,
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men jeg vidste fra min uddannelse,
at sandheden ofte er kontraintuitiv;
at sandheden ofte er kontraintuitiv;
03:17
so easily obscured
by what we want to believe.
by what we want to believe.
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og meget let sløret af det,
vi ønsker at tro.
vi ønsker at tro.
03:20
So I had to consider the possibility
that he was right.
that he was right.
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Jeg var nødt til at overveje,
at han muligvis havde ret.
at han muligvis havde ret.
03:25
That day, I ran a small experiment.
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Dén dag lavede jeg et lille eksperiement.
03:28
I walked back the two miles
from my neurologist's office to my house,
from my neurologist's office to my house,
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Jeg gik de 3 kilometer hjem
fra min neurologs kontor
fra min neurologs kontor
03:33
my legs wrapped in this strange,
almost electric kind of pain.
almost electric kind of pain.
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med mine ben indhyllet i denne sære,
næsten elekstriske smerte.
næsten elekstriske smerte.
03:38
I meditated on that pain,
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Jeg mediterede over smerten,
03:40
contemplating how my mind
could have possibly generated all this.
could have possibly generated all this.
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og tænkte over, hvordan mit sind
kunne have gjort alt dette.
kunne have gjort alt dette.
03:45
As soon as I walked through the door,
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Så snart jeg gik gennem døren,
03:47
I collapsed.
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kollapsede jeg.
03:48
My brain and my spinal cord were burning.
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Min hjerne og min ryggrad brændte.
03:52
My neck was so stiff
I couldn't touch my chin to my chest,
I couldn't touch my chin to my chest,
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Min nakke var så stiv,
jeg ikke kunne røre mit bryst med min hage,
jeg ikke kunne røre mit bryst med min hage,
03:57
and the slightest sound --
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og den mindste lyd --
03:59
the rustling of the sheets,
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lagnernes ruslen,
04:00
my husband walking barefoot
in the next room --
in the next room --
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min mand, der gik barfodet
i det andet rum --
i det andet rum --
04:03
could cause excruciating pain.
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kunne forårsage ulidelig smerte.
04:07
I would spend most
of the next two years in bed.
of the next two years in bed.
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Jeg ville bruge det meste
af de næste to år i sengen.
af de næste to år i sengen.
04:11
How could my doctor
have gotten it so wrong?
have gotten it so wrong?
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Hvordan kunne min læge
have taget så meget fejl?
have taget så meget fejl?
04:14
I thought I had a rare disease,
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Jeg troede, jeg havde en sjælden sygdom,
04:17
something doctors had never seen.
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noget som læger aldrig havde set.
04:19
And then I went online
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Og så gik jeg online
04:21
and found thousands of people
all over the world
all over the world
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og fandt tusindvis af mennesker
over hele verden,
over hele verden,
04:23
living with the same symptoms,
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som levede med de samme symptomer,
04:26
similarly isolated,
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ligeledes isoleret,
04:27
similarly disbelieved.
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på samme måde i vantro.
04:29
Some could still work,
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Nogle kunne stadig arbejde,
04:31
but had to spend their evenings
and weekends in bed,
and weekends in bed,
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men brugte deres aftener
og weekender i sengen,
og weekender i sengen,
04:33
just so they could show up
the next Monday.
the next Monday.
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kun for at kunne møde op den næste mandag.
04:36
On the other end of the spectrum,
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På den anden side af spektrummet,
04:38
some were so sick
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var nogle så syge,
04:40
they had to live in complete darkness,
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at de var nødt til at leve
i komplet mørke,
i komplet mørke,
04:42
unable to tolerate
the sound of a human voice
the sound of a human voice
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ude af stand til at klare lyden
af en menneskestemmme
af en menneskestemmme
04:45
or the touch of a loved one.
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eller beøringen af sine elskede.
04:49
I was diagnosed
with myalgic encephalomyelitis.
with myalgic encephalomyelitis.
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Jeg var dianotiseret
med myalgic encephalomyelitis.
med myalgic encephalomyelitis.
04:54
You've probably heard it called
"chronic fatigue syndrome."
"chronic fatigue syndrome."
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I har sikkert hørt det blive kaldt
"kronisk træthedssyndrom."
"kronisk træthedssyndrom."
04:58
For decades, that's a name
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For årtider var det et navn
05:00
that's meant that this
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som har betydet at det her
05:03
has been the dominant image
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har været det dominerede syn
05:04
of a disease that can be
as serious as this.
as serious as this.
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på en sygsom,
som kan være så alvorlig som dette.
som kan være så alvorlig som dette.
05:09
The key symptom we all share
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Symptomet, som vi alle deler,
05:11
is that whenever we exert ourselves --
physically, mentally --
physically, mentally --
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er, at når vi anstrenger os selv --
fysisk, psykisk --
fysisk, psykisk --
05:15
we pay and we pay hard.
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så bøder vi for det hårdt.
05:17
If my husband goes for a run,
he might be sore for a couple of days.
he might be sore for a couple of days.
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Hvis min mand løber en tur,
så er han måske øm i et par dage.
så er han måske øm i et par dage.
05:21
If I try to walk half a block,
I might be bedridden for a week.
I might be bedridden for a week.
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Hvis jeg prøver at gå 100 meter,
så er jeg måske sengeliggende i en uge.
så er jeg måske sengeliggende i en uge.
05:25
It is a perfect custom prison.
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Det er det perfekte
brugerdefinerede fængsel.
brugerdefinerede fængsel.
05:28
I know ballet dancers who can't dance,
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Jeg kender balletdansere,
som ikke kan danse,
som ikke kan danse,
05:31
accountants who can't add,
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revisorere, som ikke kan lægge tal sammen,
05:33
medical students who never became doctors.
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lægestuderende, som aldrig blev læger.
05:36
It doesn't matter what you once were;
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Det er ligegyldig, hvad du engang var;
05:39
you can't do it anymore.
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du kan ikke gøre det længere.
05:41
It's been four years,
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Det er gået fire år,
05:43
and I've still never been as well as I was
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og jeg har stadig aldrig haft det så godt,
05:46
the minute before I walked home
from my neurologist's office.
from my neurologist's office.
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som minuttet før jeg gik hjem
fra min neurologs kontor.
fra min neurologs kontor.
05:50
It's estimated that about 15 to 30 million
people around the world
people around the world
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Det er anslået at omkring 15-30 millioner
mennesker over hele verden
mennesker over hele verden
05:53
have this disease.
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har denne sygdom.
05:55
In the US, where I'm from,
it's about one million people.
it's about one million people.
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I USA, hvor jeg er fra,
er det omtrent en million mennesker.
er det omtrent en million mennesker.
05:58
That makes it roughly twice as common
as multiple sclerosis.
as multiple sclerosis.
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Det gør den groft sagt dobbelt så hyppig,
som multipel sclerose.
som multipel sclerose.
06:03
Patients can live for decades
with the physical function
with the physical function
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Patienter kan leve for årtider
med den fysiske funktion,
med den fysiske funktion,
06:06
of someone with congestive heart failure.
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som en med kongestivt hjertesvigt.
06:09
Twenty-five percent of us
are homebound or bedridden,
are homebound or bedridden,
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25 procent af os er bundet
til hjemmet eller sengen,
til hjemmet eller sengen,
06:12
and 75 to 85 percent of us
can't even work part-time.
can't even work part-time.
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og 75-85 procent af os
kan ikke engang arbejde deltid.
kan ikke engang arbejde deltid.
06:17
Yet doctors do not treat us
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Alligevel behandler læger os ikke
06:20
and science does not study us.
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og videnskaben studerer os ikke.
06:23
How could a disease this common
and this devastating
and this devastating
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Hvordan kan en sygdom,
der er så almindelig og altødelæggende
der er så almindelig og altødelæggende
06:27
have been forgotten by medicine?
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været blevet glemt af lægevidenskaben?
06:31
When my doctor diagnosed me
with conversion disorder,
with conversion disorder,
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Da min læge gav mig
diagnosen konversionssyndrom,
diagnosen konversionssyndrom,
06:33
he was invoking a lineage
of ideas about women's bodies
of ideas about women's bodies
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så inddrog han en række af idéer
om kvinders kroppe,
om kvinders kroppe,
06:36
that are over 2,500 years old.
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som er over 2.500 år gamle.
06:39
The Roman physician Galen thought
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Den romerske læge, Galen, mente,
06:40
that hysteria was caused
by sexual deprivation
by sexual deprivation
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at hysteriet var forårsaget
af seksuel mangel
af seksuel mangel
06:43
in particularly passionate women.
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i særdeles passionerede kvinder.
06:47
The Greeks thought the uterus
would literally dry up
would literally dry up
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Grækerne mente,
at livmoderen ville tørre ud
at livmoderen ville tørre ud
06:49
and wander around the body
in search of moisture,
in search of moisture,
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og vandre rundt i kroppen
i søgen efter fugt,
i søgen efter fugt,
06:52
pressing on internal organs --
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og ligge pres på indre organer --
06:54
yes --
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ja --
06:56
causing symptoms from extreme emotions
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og forårsage symptomer som alt
fra ekstreme følelser
fra ekstreme følelser
06:59
to dizziness and paralysis.
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til svimmelhed og paralyse.
07:02
The cure was marriage and motherhood.
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Kuren var ægteskab og moderskab.
07:06
These ideas went largely unchanged
for several millennia until the 1880s,
for several millennia until the 1880s,
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Disse idéer var stort set uforandrede i
adskillige årtusinder frem til 1880'erne,
adskillige årtusinder frem til 1880'erne,
07:11
when neurologists tried to modernize
the theory of hysteria.
the theory of hysteria.
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hvor neurologer prøvede
at modernisere hysteri-teorien.
at modernisere hysteri-teorien.
07:15
Sigmund Freud developed a theory
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Sigmund Freud udviklede teorien,
07:17
that the unconscious mind
could produce physical symptoms
could produce physical symptoms
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at ubevidstheden kunne
producere fysiske symptomer,
producere fysiske symptomer,
07:20
when dealing with memories or emotions
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når det gjaldt minder eller føleleser,
07:22
too painful for the conscious
mind to handle.
mind to handle.
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der var for smertefulde for bevidstheden.
07:24
It converted these emotions
into physical symptoms.
into physical symptoms.
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Den forvandlede disee følelser
til fysiske symptomer.
til fysiske symptomer.
07:29
This meant that men
could now get hysteria,
could now get hysteria,
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Det betød nu,
at mænd godt kunne få hysteri,
at mænd godt kunne få hysteri,
07:31
but of course women were still
the most susceptible.
the most susceptible.
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men selvfølgelig var kvinder
stadig de mest udsatte.
stadig de mest udsatte.
07:35
When I began investigating
the history of my own disease,
the history of my own disease,
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Da jeg begyndte at undersøge historien
bag min egen sygdom,
bag min egen sygdom,
07:39
I was amazed to find how deep
these ideas still run.
these ideas still run.
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så blev jeg forbløffet over,
hvor forankrede idéerne stadig er.
hvor forankrede idéerne stadig er.
07:43
In 1934,
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I 1934,
07:44
198 doctors, nurses and staff
at the Los Angeles County General Hospital
at the Los Angeles County General Hospital
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blev 198 læger, sygeplejerskere og ansatte
på Los Angeles County General Hospital
på Los Angeles County General Hospital
07:49
became seriously ill.
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alvorligt syge.
07:50
They had muscle weakness, stiffness
in the neck and back, fevers --
in the neck and back, fevers --
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De havde muskelsvaghed,
stivhed i nakken og ryggen, feber --
stivhed i nakken og ryggen, feber --
07:55
all of the same symptoms
I had when I first got diagnosed.
I had when I first got diagnosed.
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alle de samme symptomer,
som jeg havde, da jeg blev diagnosticeret.
som jeg havde, da jeg blev diagnosticeret.
07:58
Doctors thought
it was a new form of polio.
it was a new form of polio.
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Læger mente,
at det var en ny form for polio.
at det var en ny form for polio.
08:02
Since then, there have been more
than 70 outbreaks documented
than 70 outbreaks documented
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Sidenhed har der været
dokumenteret flere end 70 udbrud
dokumenteret flere end 70 udbrud
08:05
around the world,
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over hele verden
08:06
of a strikingly similar
post-infectious disease.
post-infectious disease.
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af en påfaldende lignende
postinfektiøs sygdom.
postinfektiøs sygdom.
08:09
All of these outbreaks have tended
to disproportionately affect women,
to disproportionately affect women,
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Alle disse udbrud har som regel
uforholdsmæssigt ramt kvinder,
uforholdsmæssigt ramt kvinder,
08:13
and in time, when doctors failed to find
the one cause of the disease,
the one cause of the disease,
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og med tiden, når læger ikke fandt
årsagen til sygdommen,
årsagen til sygdommen,
08:17
they thought that these outbreaks
were mass hysteria.
were mass hysteria.
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så mente de, at disse udbrud
var massehysteri.
var massehysteri.
08:21
Why has this idea had such staying power?
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Hvorfor har denne idé været så forankret?
08:25
I do think it has to do with sexism,
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Jeg tror,
det har at gøre med sexisme,
det har at gøre med sexisme,
08:27
but I also think that fundamentally,
doctors want to help.
doctors want to help.
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men jeg tror også, at læger
fundamentalt set gerne vil hjælpe.
fundamentalt set gerne vil hjælpe.
08:30
They want to know the answer,
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De vil gerne kende svaret,
08:32
and this category allows doctors to treat
what would otherwise be untreatable,
what would otherwise be untreatable,
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og denne kategori lader læger behandle det,
man ellers ville anse som uhelbredeligt,
man ellers ville anse som uhelbredeligt,
08:37
to explain illnesses
that have no explanation.
that have no explanation.
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og forklare sygdomme,
der ingen forklaring har.
der ingen forklaring har.
08:41
The problem is that this
can cause real harm.
can cause real harm.
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Problemet er,
at det kan gøre alvorlig skade.
at det kan gøre alvorlig skade.
08:44
In the 1950s, a psychiatrist
named Eliot Slater
named Eliot Slater
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I 1950'erne, studerede en psykiater
ved navn Eliot Slater
ved navn Eliot Slater
08:48
studied a cohort of 85 patients
who had been diagnosed with hysteria.
who had been diagnosed with hysteria.
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en gruppe af 85 patienter,
som var diagnosticeret med hysteri.
som var diagnosticeret med hysteri.
08:52
Nine years later, 12 of them were dead
and 30 had become disabled.
and 30 had become disabled.
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Ni år senere var 12 af dem døde,
og 30 af dem havde funktionsnedsættelse.
og 30 af dem havde funktionsnedsættelse.
08:56
Many had undiagnosed conditions
like multiple sclerosis,
like multiple sclerosis,
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Mange havde udiagnosticeret lidelser,
som multipel sclerose,
som multipel sclerose,
09:00
epilepsy, brain tumors.
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epilepsi, hjernesvulster.
09:03
In 1980, hysteria was officially
renamed "conversion disorder."
renamed "conversion disorder."
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I 1980 blev hysteri officielt
omdømt til "konversionssyndrom".
omdømt til "konversionssyndrom".
09:07
When my neurologist gave me
that diagnosis in 2012,
that diagnosis in 2012,
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Da mine neurologer
gav mig diagnosen i 2012,
gav mig diagnosen i 2012,
09:10
he was echoing Freud's words verbatim,
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2617
så ekkoede han Freuds ord verbatim,
09:13
and even today,
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og selv i dag,
09:14
women are 2 to 10 times more likely
to receive that diagnosis.
to receive that diagnosis.
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er kvinder 2-10 gange mere sandsynlige
til at få stillet diagnosen.
til at få stillet diagnosen.
09:20
The problem with the theory of hysteria
or psychogenic illness
or psychogenic illness
175
548487
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Problemet med hysteri-teorien
eller psykogene lidelser
eller psykogene lidelser
09:24
is that it can never be proven.
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2034
er, at de aldrig kan påvises.
09:26
It is by definition
the absence of evidence,
the absence of evidence,
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Det er per definition manglen af beviser,
09:30
and in the case of ME,
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og i tilfældet med ME,
09:31
psychological explanations
have held back biological research.
have held back biological research.
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4005
så har psykologiske forklaringer
holdt biologisk forskning tilbage.
holdt biologisk forskning tilbage.
09:35
All around the world, ME is one
of the least funded diseases.
of the least funded diseases.
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Over hele verden er ME
én af de mindst finansierede sygdomme.
én af de mindst finansierede sygdomme.
09:39
In the US, we spend each year
roughly 2,500 dollars per AIDS patient,
roughly 2,500 dollars per AIDS patient,
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6942
I USA bruger vi hvert år
omtrent 2.500 dollars per AIDS-patient,
omtrent 2.500 dollars per AIDS-patient,
09:46
250 dollars per MS patient
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574809
2720
250 dollars per MS-patient
09:50
and just 5 dollars per year
per ME patient.
per ME patient.
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3207
og kun 5 dollars om året per ME-patient.
09:54
This was not just lightning.
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582125
2081
Det var ikke bare ingenting.
09:56
I was not just unlucky.
185
584230
1764
Det var ikke bare uheldigt.
09:58
The ignorance surrounding my disease
has been a choice,
has been a choice,
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586494
3091
Ignorancen, der omgiver min sygdom,
har været et valg.
har været et valg.
10:01
a choice made by the institutions
that were supposed to protect us.
that were supposed to protect us.
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589609
4124
et valg truffet af de institutioner,
der skulle beskytte os.
der skulle beskytte os.
10:07
We don't know why ME
sometimes runs in families,
sometimes runs in families,
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595535
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Vi ved ikke hvorfor ME nogle gange
løber i familien,
løber i familien,
10:10
why you can get it
after almost any infection,
after almost any infection,
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hvorfor man kan få det
efter næsten alle infektioner
efter næsten alle infektioner
10:12
from enteroviruses
to Epstein-Barr virus to Q fever,
to Epstein-Barr virus to Q fever,
190
600919
3733
lige fra enterovira,
til Epstein-Barr-virus og Q-feber,
til Epstein-Barr-virus og Q-feber,
10:17
or why it affects women
at two to three times the rate of men.
at two to three times the rate of men.
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605123
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eller hvorfor det rammer kvinder
to til tre gange så ofte som mænd.
to til tre gange så ofte som mænd.
10:21
This issue is much bigger
than just my disease.
than just my disease.
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2719
Dette problem er meget større
end bare min sygdom.
end bare min sygdom.
10:24
When I first got sick,
193
612356
1183
Da jeg først blev syg,
10:25
old friends were reaching out to me.
194
613563
2158
så tog gamle venner kontakt til mig.
10:28
I soon found myself a part
of a cohort of women in their late 20s
of a cohort of women in their late 20s
195
616180
3129
Jeg blev hurtigt en del
af en gruppe af kvinder sidst i 20'erne,
af en gruppe af kvinder sidst i 20'erne,
10:31
whose bodies were falling apart.
196
619333
1686
hvis kroppe var ved at forfalde.
10:34
What was striking was just how
much trouble we were having
much trouble we were having
197
622012
2855
Hvad der var forbløffende var,
hvor svært vi havde ved
hvor svært vi havde ved
10:36
being taken seriously.
198
624891
1158
at blive taget alvorlig.
10:38
I learned of one woman with scleroderma,
199
626577
1958
En af kvinderne med sclerodermi,
10:40
an autoimmune connective tissue disease,
200
628559
2100
en autoimmun bindevævssygdom ,
10:42
who was told for years
that it was all in her head.
that it was all in her head.
201
630683
2710
som i årevis fik at vide,
at det hele var i hendes hoved.
at det hele var i hendes hoved.
10:45
Between the time of onset and diagnosis,
202
633417
2512
Tiden mellem udbruddet og diagnosen
10:47
her esophagus was so thoroughly damaged,
203
635953
2427
var hendes spiserør så skadet,
10:50
she will never be able to eat again.
204
638404
2245
at hun aldrig vil kunne spise igen.
10:52
Another woman with ovarian cancer,
205
640673
2182
En anden kvinde med æggestokkræft,
10:55
who for years was told
that it was just early menopause.
that it was just early menopause.
206
643376
2748
som i årevis fik at vide,
det bare var overgangsalderen.
det bare var overgangsalderen.
10:59
A friend from college,
207
647188
1568
En ven fra universitetet,
11:00
whose brain tumor was misdiagnosed
for years as anxiety.
for years as anxiety.
208
648780
3895
hvis hjernesvulst i årevis
var fejldiagnosticeret som angst.
var fejldiagnosticeret som angst.
11:06
Here's why this worries me:
209
654222
1610
Her er hvorfor
det bekymrer mig:
det bekymrer mig:
11:09
since the 1950s, rates of many
autoimmune diseases
autoimmune diseases
210
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3451
siden 1950'erne har antallet
at autoimmune sygdomme
at autoimmune sygdomme
11:12
have doubled to tripled.
211
660600
1703
fordoblet eller tredobelt.
11:14
Forty-five percent of patients
who are eventually diagnosed
who are eventually diagnosed
212
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2940
45 procent af patienter,
som bliver diagnosticeret
som bliver diagnosticeret
11:17
with a recognized autoimmune disease
213
665782
1994
med en anerkendt autoimmun sygdom,
11:19
are initially told they're hypochondriacs.
214
667800
2508
bliver i starten fortalt,
at de er hypokondere.
at de er hypokondere.
11:22
Like the hysteria of old,
this has everything to do with gender
this has everything to do with gender
215
670783
3150
Ligesom hysteriet i gamle dag,
så har det alt at gøre med køn
så har det alt at gøre med køn
11:25
and with whose stories we believe.
216
673957
1866
og med de historier,
som vi tror på.
som vi tror på.
11:28
Seventy-five percent
of autoimmune disease patients are women,
of autoimmune disease patients are women,
217
676974
3651
75 procent af autoimmune
sygdomspatienter er kvinder,
sygdomspatienter er kvinder,
11:32
and in some diseases,
it's as high as 90 percent.
it's as high as 90 percent.
218
680649
3179
og i nogle tilfælde
er det så højt som 90 procent.
er det så højt som 90 procent.
11:37
Even though these diseases
disproportionately affect women,
disproportionately affect women,
219
685076
2857
Selvom at disse sygdomme
uforholdsmæssigt rammer kvinder,
uforholdsmæssigt rammer kvinder,
11:39
they are not women's diseases.
220
687957
1652
så er det ikke en kvindesygdom.
11:41
ME affects children
and ME affects millions of men.
and ME affects millions of men.
221
689633
3688
ME rammer børn
og ME rammer millioner af mænd.
og ME rammer millioner af mænd.
11:45
And as one patient told me,
222
693345
1785
Og som en patient fortalte mig,
11:47
we get it coming and going --
223
695154
1508
vi forstår det --
11:48
if you're a woman, you're told
you're exaggerating your symptoms,
you're exaggerating your symptoms,
224
696686
3608
hvis man er en kvinde, så siger man,
at man overdriver sine symptomer,
at man overdriver sine symptomer,
11:52
but if you're a guy, you're told
to be strong, to buck up.
to be strong, to buck up.
225
700318
3458
men hvis man er en fyr, så siger man,
at man skal være stærk.
at man skal være stærk.
11:56
And men may even have
a more difficult time getting diagnosed.
a more difficult time getting diagnosed.
226
704676
4149
Og mænd har det muligvis
endnu sværere med at blive diagnosticeret.
endnu sværere med at blive diagnosticeret.
12:09
My brain is not what it used to be.
227
717419
2865
Min hjerne er ikke,
hvad den har været.
hvad den har været.
12:25
Here's the good part:
228
733914
1327
Her er den gode del:
12:28
despite everything, I still have hope.
229
736645
2179
på trods af alt, så har jeg stadig håb.
12:31
So many diseases were once
thought of as psychological
thought of as psychological
230
739903
3900
Så mange sygdomme var engang
anset som psykologiske
anset som psykologiske
12:35
until science uncovered
their biological mechanisms.
their biological mechanisms.
231
743827
2908
indtil videnskaben opdagede
deres biologiske mekanismer.
deres biologiske mekanismer.
12:39
Patients with epilepsy
could be forcibly institutionalized
could be forcibly institutionalized
232
747323
3094
Patienter med epilepsi
kunne blive tvangsindlagt
kunne blive tvangsindlagt
12:42
until the EEG was able to measure
abnormal electrical activity in the brain.
abnormal electrical activity in the brain.
233
750441
4604
indtil EEG kunne måle unormal
elektrisk aktivitet i deres hjerne.
elektrisk aktivitet i deres hjerne.
12:47
Multiple sclerosis could be misdiagnosed
as hysterical paralysis
as hysterical paralysis
234
755500
4276
Multiple sclerose kunne blive
fejldiagnosticeret som hysterisk paralyse
fejldiagnosticeret som hysterisk paralyse
12:51
until the CAT scan and the MRI
discovered brain lesions.
discovered brain lesions.
235
759800
3312
indtil CAT-skanninger og MRI
opdagede hjernelæsioner.
opdagede hjernelæsioner.
12:55
And recently, we used to think
236
763945
1515
For nyligt plejede vi at mene,
12:57
that stomach ulcers
were just caused by stress,
were just caused by stress,
237
765484
2820
at mavesår var forårsaget af stress,
13:00
until we discovered
that H. pylori was the culprit.
that H. pylori was the culprit.
238
768328
3320
indtil vi opdagede
at H. pylori var årsagen.
at H. pylori var årsagen.
13:04
ME has never benefited
from the kind of science
from the kind of science
239
772801
2894
ME har aldrig nydt godt
af denne form for videnskab,
af denne form for videnskab,
13:07
that other diseases have had,
240
775719
2310
på samme måde
som andre sygdomme har gjort,
som andre sygdomme har gjort,
13:10
but that's starting to change.
241
778053
1664
men det er ved at ændre sig.
13:12
In Germany, scientists are starting
to find evidence of autoimmunity,
to find evidence of autoimmunity,
242
780661
3541
I Tyskland er forskere i gang med
at finde beviser for autoimmunitet
at finde beviser for autoimmunitet
13:16
and in Japan, of brain inflammation.
243
784226
2342
og i Japan, hjerneinflammation.
13:19
In the US, scientists at Stanford
are finding abnormalities
are finding abnormalities
244
787406
3054
I USA er forskere fra Stanford
i gang med at finde abnormaliteter
i gang med at finde abnormaliteter
13:22
in energy metabolism
245
790484
1896
i stofskifte,
13:24
that are 16 standard deviations
away from normal.
away from normal.
246
792404
3462
der er 16 standard afvigelser
fra det normale.
fra det normale.
13:28
And in Norway, researchers
are running a phase-3 clinical trial
are running a phase-3 clinical trial
247
796640
4045
Og i Norge er forskere
i gang med en klinisk test i fase 3
i gang med en klinisk test i fase 3
13:32
on a cancer drug that in some patients
causes complete remission.
causes complete remission.
248
800709
3667
af et kræftmedicin, der forårsager
fuldstændig remission i visse patienter.
fuldstændig remission i visse patienter.
13:37
What also gives me hope
249
805798
1661
Det, som også giver mig håb,
13:40
is the resilience of patients.
250
808316
2017
er patienters modstandsdygtighed.
13:43
Online we came together,
251
811968
1874
Vi fandt sammen online,
13:46
and we shared our stories.
252
814251
1679
og vi delte vores historier.
13:49
We devoured what research there was.
253
817449
2774
Vi fortærede al den forskning der fandtes.
13:52
We experimented on ourselves.
254
820743
2077
Vi eksperimentede på os selv.
13:55
We became our own scientists
and our own doctors
and our own doctors
255
823496
2373
Vi blev vores egne forskere,
og vores egne læger
og vores egne læger
13:57
because we had to be.
256
825893
1591
fordi vi var nødt til det.
14:00
And slowly I added five percent here,
five percent there,
five percent there,
257
828378
3739
Og langsomt tilføjede jeg fem procent her,
fem procent der,
fem procent der,
14:04
until eventually, on a good day,
258
832141
2233
indtil jeg, på en god dag,
14:06
I was able to leave my home.
259
834398
1906
var i stand til at forlade mit hjem.
14:09
I still had to make ridiculous choices:
260
837815
2587
Jeg var stadig nødt til
at træffe absurde valg:
at træffe absurde valg:
14:12
Will I sit in the garden for 15 minutes,
or will I wash my hair today?
or will I wash my hair today?
261
840568
3841
Vil jeg sidde i have i 15 minutter
eller vil jeg vaske mit hår?
eller vil jeg vaske mit hår?
14:16
But it gave me hope
that I could be treated.
that I could be treated.
262
844924
2428
Men det gav mig håb på,
at blive behandlet.
at blive behandlet.
14:19
I had a sick body; that was all.
263
847693
2342
Jeg havde en syg krop; dét var det hele.
14:22
And with the right kind of help,
maybe one day I could get better.
maybe one day I could get better.
264
850789
4031
Og med den rigtige hjælp,
kunne jeg måske en dag få det bedre.
kunne jeg måske en dag få det bedre.
14:27
I came together with patients
around the world,
around the world,
265
855740
3203
Jeg fandt sammen med patienter
fra hele verden,
fra hele verden,
14:31
and we started to fight.
266
859466
1754
og vi begyndte at kæmpe.
14:33
We have filled the void
with something wonderful,
with something wonderful,
267
861863
3171
Vi har fyldt tomrummet
med noget fantastisk,
med noget fantastisk,
14:37
but it is not enough.
268
865698
1492
men det er ikke nok.
14:40
I still don't know if I will ever
be able to run again,
be able to run again,
269
868662
4037
Jeg ved stadigvæk ikke om jeg
nogensinde vil kunne løbe igen,
nogensinde vil kunne løbe igen,
14:44
or walk at any distance,
270
872723
1897
eller gå så langt, som jeg vil,
14:46
or do any of those kinetic things
that I now only get to do in my dreams.
that I now only get to do in my dreams.
271
874644
3909
eller gøre nogle af alle de kinetiske ting,
som jeg nu kun gør i mine drømme.
som jeg nu kun gør i mine drømme.
14:51
But I am so grateful
for how far I have come.
for how far I have come.
272
879143
3090
Men jeg er også taknemmelig over,
hvor langt jeg er kommet.
hvor langt jeg er kommet.
14:55
Progress is slow,
273
883955
1485
Fremskridt går langsomt,
14:57
and it is up
274
885464
1292
og det går op
14:59
and it is down,
275
887310
1256
og det går ned,
15:01
but I am getting a little better each day.
276
889222
2913
men jeg får det en smule bedre hver dag.
15:06
I remember what it was like
when I was stuck in that bedroom,
when I was stuck in that bedroom,
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Jeg kan huske, hvordan det var,
da jeg var fanget i soveværelset,
da jeg var fanget i soveværelset,
15:10
when it had been months
since I had seen the sun.
since I had seen the sun.
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hvor det havde været måneder siden,
jeg sidst havde set solen.
jeg sidst havde set solen.
15:15
I thought that I would die there.
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Jeg troede, at jeg skulle dø der.
15:18
But here I am today,
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Men her er jeg i dag
15:21
with you,
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sammen med jer
15:23
and that is a miracle.
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og det er et mirakel.
15:28
I don't know what would have happened
had I not been one of the lucky ones,
had I not been one of the lucky ones,
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Jeg ved ikke hvordan det ville være,
hvis jeg ikke havde været heldig,
hvis jeg ikke havde været heldig,
15:32
had I gotten sick before the internet,
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hvis jeg var blevet syg før internettet,
15:34
had I not found my community.
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hvis jeg ikke havde
fundet mit fællesskab.
fundet mit fællesskab.
15:37
I probably would have already
taken my own life,
taken my own life,
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Jeg ville sikkert allerede
have taget mit eget liv,
have taget mit eget liv,
15:41
as so many others have done.
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som så mange andre har gjort.
15:44
How many lives could
we have saved, decades ago,
we have saved, decades ago,
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Hvor mange liv kunne
vi have reddet for årtier siden,
vi have reddet for årtier siden,
15:47
if we had asked the right questions?
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havde vi stillet de rigtige spørgsmål?
15:50
How many lives could we save today
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Hvor mange liv kan vi redde i dag,
15:53
if we decide to make a real start?
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hvis vi beslutter os for at gøre noget?
15:57
Even once the true cause
of my disease is discovered,
of my disease is discovered,
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Selv når den rigtige årsag
til min sygdom bliver opdaget,
til min sygdom bliver opdaget,
16:00
if we don't change
our institutions and our culture,
our institutions and our culture,
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hvis vi ikke ændrer
vores institutioner og vores kultur,
vores institutioner og vores kultur,
16:04
we will do this again to another disease.
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så vil vi gøre dette igen
med en anden sygdom.
med en anden sygdom.
16:07
Living with this illness has taught me
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At leve med denne sygdom har lært mig,
16:09
that science and medicine
are profoundly human endeavors.
are profoundly human endeavors.
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at videnskab og medicin
er menneskelige bestræbelser.
er menneskelige bestræbelser.
16:13
Doctors, scientists and policy makers
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Læger, forskere og politikere
16:15
are not immune to the same biases
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er ikke immune til de samme bias,
16:19
that affect all of us.
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som påvirker os alle.
16:23
We need to think in more nuanced ways
about women's health.
about women's health.
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Vi skal tænke over kvinders helbred
på mere nuancerede måder.
på mere nuancerede måder.
16:27
Our immune systems are just as much
a battleground for equality
a battleground for equality
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Vores immunforsvar er ligeså meget
en slagmark for lighed,
en slagmark for lighed,
16:31
as the rest of our bodies.
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som resten af vores krop.
16:33
We need to listen to patients' stories,
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Vi er nødt til at lytte
til patienters historier,
til patienters historier,
16:36
and we need to be willing
to say, "I don't know."
to say, "I don't know."
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og villig til at sige, "jeg ved det ikke."
16:40
"I don't know" is a beautiful thing.
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2352
"Jeg ved det ikke" er en smuk ting.
16:43
"I don't know" is where discovery starts.
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"Jeg ved det ikke" er,
hvor opdagelse begynder.
hvor opdagelse begynder.
16:47
And if we can do that,
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Og hvis vi kan gøre dette,
16:49
if we can approach the great vastness
of all that we do not know,
of all that we do not know,
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hvis vi kan nærme os den enorme mængde
af alt det, som vi ikke ved,
af alt det, som vi ikke ved,
16:53
and then, rather than fear uncertainty,
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og istedet for at frygte usikkerhed,
16:55
maybe we can greet it
with a sense of wonder.
with a sense of wonder.
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så kan vi måske byde den velkommen
med en følelse af forunderlighed.
med en følelse af forunderlighed.
16:58
Thank you.
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Tak.
17:04
Thank you.
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Tak.
ABOUT THE SPEAKER
Jennifer Brea - FilmmakerJennifer Brea was a PhD student at Harvard when, one night, she found she couldn't write her own name.
Why you should listen
Over the following months, while doctors insisted her condition was psychosomatic, Brea became bedridden. She started filming herself and the community that she discovered online, collecting the first footage of what would become a feature documentary about myalgic encephalomyelitis (ME), often referred to as chronic fatigue syndrome. The film, Unrest, which will premiere at the 2017 Sundance Film Festival, tells Jen's story as well as the stories of four other patients living with ME.
Brea is also the founder of #MEAction, an online organizing platform for ME patients around the world, many of whom cannot leave their homes.
Jennifer Brea | Speaker | TED.com