Jennifer Brea: What happens when you have a disease doctors can't diagnose
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
to applaud ASL-style, in silence.]
to marry the love of my life.
when we are in good health,
a fever of 104.7 degrees.
if you have a virus,
some chicken soup,
everything will be fine.
I couldn't leave my house.
just to make it to the bathroom.
to explain things like this to yourself,
to be on the other side of 25.
draw the right side of a circle.
to speak or move at all.
"It's clear you're really sick,
what's wrong with you."
diagnosed me with conversion disorder.
the sinus infection,
neurological and cardiac symptoms --
by some distant emotional trauma
my neurologist's diagnosis.
that the truth is often counterintuitive,
by what we want to believe.
that he was right.
from my neurologist's office to my house,
almost electric kind of pain.
could have possibly generated all this.
I couldn't touch my chin to my chest,
in the next room --
of the next two years in bed.
have gotten it so wrong?
all over the world
and weekends in bed,
the next Monday.
the sound of a human voice
with myalgic encephalomyelitis.
"chronic fatigue syndrome."
as serious as this.
physically, mentally --
he might be sore for a couple of days.
I might be bedridden for a week.
from my neurologist's office.
people around the world
it's about one million people.
as multiple sclerosis.
with the physical function
are homebound or bedridden,
can't even work part-time.
and this devastating
with conversion disorder,
of ideas about women's bodies
by sexual deprivation
would literally dry up
in search of moisture,
for several millennia until the 1880s,
the theory of hysteria.
could produce physical symptoms
mind to handle.
into physical symptoms.
could now get hysteria,
the most susceptible.
the history of my own disease,
these ideas still run.
at the Los Angeles County General Hospital
in the neck and back, fevers --
I had when I first got diagnosed.
it was a new form of polio.
than 70 outbreaks documented
to disproportionately affect women,
the one cause of the disease,
were mass hysteria.
doctors want to help.
what would otherwise be untreatable,
that have no explanation.
can cause real harm.
named Eliot Slater
who had been diagnosed with hysteria.
and 30 had become disabled.
like multiple sclerosis,
renamed "conversion disorder."
that diagnosis in 2012,
to receive that diagnosis.
or psychogenic illness
the absence of evidence,
have held back biological research.
of the least funded diseases.
roughly 2,500 dollars per AIDS patient,
per ME patient.
has been a choice,
that were supposed to protect us.
sometimes runs in families,
after almost any infection,
to Epstein-Barr virus to Q fever,
at two to three times the rate of men.
than just my disease.
of a cohort of women in their late 20s
much trouble we were having
that it was all in her head.
that it was just early menopause.
for years as anxiety.
who are eventually diagnosed
this has everything to do with gender
of autoimmune disease patients are women,
it's as high as 90 percent.
disproportionately affect women,
and ME affects millions of men.
you're exaggerating your symptoms,
to be strong, to buck up.
a more difficult time getting diagnosed.
thought of as psychological
their biological mechanisms.
could be forcibly institutionalized
abnormal electrical activity in the brain.
as hysterical paralysis
discovered brain lesions.
were just caused by stress,
that H. pylori was the culprit.
from the kind of science
to find evidence of autoimmunity,
are finding abnormalities
away from normal.
are running a phase-3 clinical trial
causes complete remission.
and our own doctors
five percent there,
or will I wash my hair today?
that I could be treated.
maybe one day I could get better.
around the world,
with something wonderful,
be able to run again,
that I now only get to do in my dreams.
for how far I have come.
when I was stuck in that bedroom,
since I had seen the sun.
had I not been one of the lucky ones,
taken my own life,
we have saved, decades ago,
of my disease is discovered,
our institutions and our culture,
are profoundly human endeavors.
about women's health.
a battleground for equality
to say, "I don't know."
of all that we do not know,
with a sense of wonder.
About the speaker:Jennifer Brea - Filmmaker
Jennifer 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