TEDSummit
Jennifer Brea: What happens when you have a disease doctors can't diagnose
詹妮弗·布雷亚: 当你得了医生无法诊断的疾病怎么办？
Filmed:
Readability: 4.1
2,042,782 views
五年前，TED会员詹妮弗·布雷亚得了一种越来越严重的疾病，即肌痛性脑脊髓炎，通常被熟知的名字是慢性疲劳综合症，这是一种使人慢慢衰竭的疾病，严重损害人的日常活动，并且在最严重的时候会使人无法忍受哪怕是床单摩擦的声音。在这段令人深刻的讲话中，布雷亚描述了她在寻求治疗的过程中所遇到的挫折，对于这个疾病我们无法完全它的根本原因和物理效果；同样布雷亚也讲述了她的使命，通过电影来记录病人在治愈过程中所作出的医学的斗争。
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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嗨！
00:19
Thank you.
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谢谢你们。
00:20
[Jennifer Brea is sound-sensitive.
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【詹妮弗·布雷亚对声音非常敏感
00:22
The live audience was asked
to applaud ASL-style, in silence.]
to applaud ASL-style, in silence.]
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因此要求现场的观众以手语的方式
安静地鼓掌。】
安静地鼓掌。】
00:25
So, five years ago, this was me.
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这是五年前的我，
00:29
I was a PhD student at Harvard,
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我是哈佛大学的一名博士生，
00:31
and I loved to travel.
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并且热爱旅行，
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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我刚与我人生的挚爱订婚，
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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我28岁，和大部分人
一样身体非常健康，
一样身体非常健康，
我觉得自己无所不能。
00:43
I felt like I was invincible.
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00:46
Then one day I had
a fever of 104.7 degrees.
a fever of 104.7 degrees.
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有一天我高烧40.3度，
00:50
I probably should have gone to the doctor,
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可能我应该去看个医生，
但是当时我认为我
这辈子不可能真的生病，
这辈子不可能真的生病，
00:52
but I'd never really been sick in my life,
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00:55
and I knew that usually,
if you have a virus,
if you have a virus,
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而且我知道，通常来说
如果你被病毒感染，
如果你被病毒感染，
00:57
you stay home and you make
some chicken soup,
some chicken soup,
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在家躺着休息，喝点鸡汤，
01:00
and in a few days,
everything will be fine.
everything will be fine.
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过几天就什么事都没有了。
01:04
But this time it wasn't fine.
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但是这一次它没有好，
01:07
After the fever broke,
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高烧之后，
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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整整三个星期我头昏眼花到无法出门，
01:13
I would walk straight into door frames.
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我直走都能撞到门框上，
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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我不得不扶着墙才能去洗手间。
01:20
That spring I got infection
after infection,
after infection,
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那个春天 我连续被病毒感染，
但是每次我去医院，
01:23
and every time I went to the doctor,
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01:25
he said there was absolutely
nothing wrong.
nothing wrong.
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医生都确定我的身体完全没什么问题。
01:29
He had his laboratory tests,
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他实验室的检测结果，
01:31
which always came back normal.
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永远都显示正常，
所有的都是，
01:33
All I had were my symptoms,
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01:35
which I could describe,
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只有我能描述出来，
01:37
but no one else can see.
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其他人都无法察觉的症状。
01:41
I know it sounds silly,
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我知道这听起来很蠢，
但是你不得不找到一个方式来
解释发生在自己身上的一切，
解释发生在自己身上的一切，
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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01:45
and so I thought maybe I was just aging.
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所以我想我大概只是在衰老，
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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或许这就是二十五岁的另外一面。
01:53
(Laughter)
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（笑声）
01:56
Then the neurological symptoms started.
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接下来神经方面的症状开始出现，
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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我发现有时候我无法画出圆的右半边，
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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有时候我发现
我完全不能说话或者移动，
我完全不能说话或者移动，
02:10
I saw every kind of specialist:
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我见过各种专家，
02:12
infectious disease doctors,
dermatologists, endocrinologists,
dermatologists, endocrinologists,
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感染病医生、皮肤病医生，
内分泌医生、心脏病医生，
02:15
cardiologists.
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02:16
I even saw a psychiatrist.
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我甚至去看过精神病医生。
02:19
My psychiatrist said,
"It's clear you're really sick,
"It's clear you're really sick,
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我的精神病医生说
“很明显你现在在生病，
“很明显你现在在生病，
但这和精神疾病没有任何关系，
02:22
but not with anything psychiatric.
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02:26
I hope they can find out
what's wrong with you."
what's wrong with you."
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我希望其他医生可以找到你的病因。”
02:30
The next day, my neurologist
diagnosed me with conversion disorder.
diagnosed me with conversion disorder.
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第二天 我的神经病学医生
诊断我得了一种转化性疾患，
诊断我得了一种转化性疾患，
02:34
He told me that everything --
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他告诉我，所有症状--
02:37
the fevers, the sore throats,
the sinus infection,
the sinus infection,
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发烧、嗓子疼、鼻窦炎，
所有的胃肠疾病
神经和心脏方面的症状--
神经和心脏方面的症状--
02:40
all of the gastrointestinal,
neurological and cardiac symptoms --
neurological and cardiac symptoms --
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02:44
were being caused
by some distant emotional trauma
by some distant emotional trauma
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都是由某些持续性精神创伤引起的，
02:47
that I could not remember.
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而这些创伤我都不记得了，
他说，这些症状是真实存在的。
02:50
The symptoms were real, he said,
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02:52
but they had no biological cause.
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但是却没有任何生物学病因，
02:56
I was training to be a social scientist.
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我被培养成为一名社会科学家，
02:59
I had studied statistics,
probability theory,
probability theory,
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我学习过统计学、概念理论，
03:02
mathematical modeling,
experimental design.
experimental design.
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数学建模和实验设计，
03:07
I felt like I couldn't just reject
my neurologist's diagnosis.
my neurologist's diagnosis.
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我觉得我没有办法
反驳这位神经学医生的诊断，
反驳这位神经学医生的诊断，
03:11
It didn't feel true,
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这感觉很不真实，
03:13
but I knew from my training
that the truth is often counterintuitive,
that the truth is often counterintuitive,
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但我的专业知识告诉我
真相往往与直觉相悖，
真相往往与直觉相悖，
03:17
so easily obscured
by what we want to believe.
by what we want to believe.
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所以很容易被我们的主观想法所掩盖，
03:20
So I had to consider the possibility
that he was right.
that he was right.
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所以我不得不考虑
他的诊断可能是对的，
他的诊断可能是对的，
03:25
That day, I ran a small experiment.
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那天，我进行了一个小实验，
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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我从距离两英里的
神经学家的办公室走回家，
神经学家的办公室走回家，
03:33
my legs wrapped in this strange,
almost electric kind of pain.
almost electric kind of pain.
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我的腿被一种奇怪的
像电流一样的疼痛缠住，
像电流一样的疼痛缠住，
03:38
I meditated on that pain,
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我认真思考了那种疼痛，
思考我的意识如何能带来这一切，
03:40
contemplating how my mind
could have possibly generated all this.
could have possibly generated all this.
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在我走过家门的一瞬间，
03:45
As soon as I walked through the door,
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03:47
I collapsed.
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我倒在地上。
03:48
My brain and my spinal cord were burning.
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我的大脑和脊髓灼烧般的疼痛，
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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我的脖子僵硬到我的胸
甚至无法碰到下巴，
甚至无法碰到下巴，
03:57
and the slightest sound --
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最轻微的声音，
03:59
the rustling of the sheets,
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纸张发出的沙沙声。
04:00
my husband walking barefoot
in the next room --
in the next room --
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我丈夫赤着脚在隔壁房间走路的声音，
04:03
could cause excruciating pain.
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都能引发令人煎熬的痛苦，
04:07
I would spend most
of the next two years in bed.
of the next two years in bed.
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而接下来的两年，我大部分的
时间都是在床上度过的，
时间都是在床上度过的，
04:11
How could my doctor
have gotten it so wrong?
have gotten it so wrong?
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我的医生怎么会弄错呢？
04:14
I thought I had a rare disease,
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我想我是得了一种罕见的病，
04:17
something doctors had never seen.
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有些东西医生都没有见过，
于是我上网寻找，
04:19
And then I went online
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04:21
and found thousands of people
all over the world
all over the world
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发现无数的人，
04:23
living with the same symptoms,
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和我有相同的症状，
04:26
similarly isolated,
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一样的孤独，
一样的怀疑，
04:27
similarly disbelieved.
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04:29
Some could still work,
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他们中一些人仍然可以工作，
04:31
but had to spend their evenings
and weekends in bed,
and weekends in bed,
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但是不得不整个晚上
和周末躺在床上休息，
和周末躺在床上休息，
04:33
just so they could show up
the next Monday.
the next Monday.
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这样在下一个星期一
他们还可以继续工作，
他们还可以继续工作，
04:36
On the other end of the spectrum,
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而这个圈子的另一端。
04:38
some were so sick
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有一些人生病太重，
04:40
they had to live in complete darkness,
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一部分人已经太过虚弱所以他们
不得不生活在彻底的黑暗中，
不得不生活在彻底的黑暗中，
04:42
unable to tolerate
the sound of a human voice
the sound of a human voice
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无法忍受任何声音，
04:45
or the touch of a loved one.
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或者是来自爱人的触碰，
04:49
I was diagnosed
with myalgic encephalomyelitis.
with myalgic encephalomyelitis.
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我被确诊为肌痛性脑脊髓炎。
你可能也听说过它被称为
“慢性疲劳综合症”，
“慢性疲劳综合症”，
04:54
You've probably heard it called
"chronic fatigue syndrome."
"chronic fatigue syndrome."
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04:58
For decades, that's a name
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几十年来，这种病的，
05:00
that's meant that this
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主要形象正如，
05:03
has been the dominant image
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这张图片所展示的，
05:04
of a disease that can be
as serious as this.
as serious as this.
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也是这种病所能达到的严重程度，
05:09
The key symptom we all share
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我们所共有的关键症状就是，
05:11
is that whenever we exert ourselves --
physically, mentally --
physically, mentally --
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每当我们消耗自己—体力，精力—
05:15
we pay and we pay hard.
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我们越来越辛苦，
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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如果我丈夫出去跑步
他可能会全身酸痛几天，
他可能会全身酸痛几天，
如果我试图走半个街区
我也许就要整整一周卧床不起，
我也许就要整整一周卧床不起，
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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05:25
It is a perfect custom prison.
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这是个完美的定制监狱，
05:28
I know ballet dancers who can't dance,
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我知道不能跳舞的芭蕾演员，
05:31
accountants who can't add,
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不能计算的会计师，
05:33
medical students who never became doctors.
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永远无法成为医生的医学生，
05:36
It doesn't matter what you once were;
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这和你曾经做什么毫无关系。
05:39
you can't do it anymore.
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你再也不能继续做了。
05:41
It's been four years,
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四年以来，
05:43
and I've still never been as well as I was
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我仍然无法恢复到，
我从我的神经学医生办公室
走回家之前的那一刻。
走回家之前的那一刻。
05:46
the minute before I walked home
from my neurologist's office.
from my neurologist's office.
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05:50
It's estimated that about 15 to 30 million
people around the world
people around the world
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据估计，全世界
有150万到300万人，
有150万到300万人，
05:53
have this disease.
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患有这种疾病，
在我所在的美国，大约有100万人，
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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05:58
That makes it roughly twice as common
as multiple sclerosis.
as multiple sclerosis.
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普遍性是多发性硬化症人数的两倍，
06:03
Patients can live for decades
with the physical function
with the physical function
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只要器官保持运作，
06:06
of someone with congestive heart failure.
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充血性心肌衰竭病人可以生活几十年，
06:09
Twenty-five percent of us
are homebound or bedridden,
are homebound or bedridden,
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而我们当中的25%的人是
生病在家或者卧床不起，
生病在家或者卧床不起，
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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75%到85%连兼职工作
都没有办法完成，
都没有办法完成，
06:17
Yet doctors do not treat us
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但是医生并不治疗这种疾病。
06:20
and science does not study us.
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也没有学科研究这个病，
06:23
How could a disease this common
and this devastating
and this devastating
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一个如此常见且有杀伤力的疾病，
06:27
have been forgotten by medicine?
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怎么能被医学给遗忘了？
06:31
When my doctor diagnosed me
with conversion disorder,
with conversion disorder,
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当我的医生诊断我患了转化性疾患时，
06:33
he was invoking a lineage
of ideas about women's bodies
of ideas about women's bodies
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他引用了一系列有2500年历史的，
06:36
that are over 2,500 years old.
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关于女性身体的观点，
06:39
The Roman physician Galen thought
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罗马医学家迦林认为，
06:40
that hysteria was caused
by sexual deprivation
by sexual deprivation
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癔病是有由性生活不足造成的，
尤其是那些性欲旺盛的女性，
06:43
in particularly passionate women.
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06:47
The Greeks thought the uterus
would literally dry up
would literally dry up
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希腊人认为子宫确实会干涸，
06:49
and wander around the body
in search of moisture,
in search of moisture,
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然后在身体中四处游走寻找水分，
压迫着身体内的器官。
06:52
pressing on internal organs --
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06:54
yes --
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是的，
06:56
causing symptoms from extreme emotions
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引起的症状从极端的情绪，
到头晕、麻痹，
06:59
to dizziness and paralysis.
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07:02
The cure was marriage and motherhood.
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而治疗方法就是结婚和生子，
07:06
These ideas went largely unchanged
for several millennia until the 1880s,
for several millennia until the 1880s,
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这种想法在几千年里都没有大的变化
直到十九世纪八十年代，
直到十九世纪八十年代，
07:11
when neurologists tried to modernize
the theory of hysteria.
the theory of hysteria.
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神经学家们试图用现代化的方法
来解释癔病的疾病原理，
来解释癔病的疾病原理，
07:15
Sigmund Freud developed a theory
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奥地利精神分析学家西格蒙德·弗洛伊德
发展出一个学说，
发展出一个学说，
07:17
that the unconscious mind
could produce physical symptoms
could produce physical symptoms
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认为当无意识心理在
有意识心理因为
有意识心理因为
07:20
when dealing with memories or emotions
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过于痛苦而无法处理
记忆或者情感时，
记忆或者情感时，
07:22
too painful for the conscious
mind to handle.
mind to handle.
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会产生一种物理症状。
07:24
It converted these emotions
into physical symptoms.
into physical symptoms.
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它将这些情感转化成物理症状，
07:29
This meant that men
could now get hysteria,
could now get hysteria,
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这意味着男性也可能会患癔病
07:31
but of course women were still
the most susceptible.
the most susceptible.
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但是女性仍然是最易受到感染的，
07:35
When I began investigating
the history of my own disease,
the history of my own disease,
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当我开始对我这个病的
历史进行调查研究时，
历史进行调查研究时，
07:39
I was amazed to find how deep
these ideas still run.
these ideas still run.
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我非常吃惊的发现这些
观点是多么的深入人心。
观点是多么的深入人心。
07:43
In 1934,
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1934年，
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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洛杉矶县综合医院的198名
医生、护士和工作人员，
医生、护士和工作人员，
07:49
became seriously ill.
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病得非常严重，
07:50
They had muscle weakness, stiffness
in the neck and back, fevers --
in the neck and back, fevers --
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他们开始肌肉酸痛、颈部及
后背开始变得僵硬以及高烧
后背开始变得僵硬以及高烧
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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和我最初诊断的所有症状一模一样，
医生们认为这是
小儿麻痹症的最新形式。
小儿麻痹症的最新形式。
07:58
Doctors thought
it was a new form of polio.
it was a new form of polio.
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08:02
Since then, there have been more
than 70 outbreaks documented
than 70 outbreaks documented
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从那之后，全世界有70多次关于
08:05
around the world,
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这个有着惊人相似的感染性疾病，
08:06
of a strikingly similar
post-infectious disease.
post-infectious disease.
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爆发的记载。
08:09
All of these outbreaks have tended
to disproportionately affect women,
to disproportionately affect women,
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所有的疾病爆发都不同
比例的倾向于影响女性，
比例的倾向于影响女性，
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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而同时，当医生们无法找到
任何这个疾病的起因，
任何这个疾病的起因，
08:17
they thought that these outbreaks
were mass hysteria.
were mass hysteria.
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他们认为这些爆发属于大规模癔病，
为什么这个观点一直保持着
这么大的影响力？
这么大的影响力？
08:21
Why has this idea had such staying power?
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08:25
I do think it has to do with sexism,
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我认为这是针对女性的偏见，
但是我同时也认为从根本上来说
医生们想提供帮助。
医生们想提供帮助。
08:27
but I also think that fundamentally,
doctors want to help.
doctors want to help.
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08:30
They want to know the answer,
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他们想知道答案，
08:32
and this category allows doctors to treat
what would otherwise be untreatable,
what would otherwise be untreatable,
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这个分类使医生们可以去治疗
根本无法治愈的疾病，
根本无法治愈的疾病，
08:37
to explain illnesses
that have no explanation.
that have no explanation.
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给这个无解的疾病一个解释，
08:41
The problem is that this
can cause real harm.
can cause real harm.
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这里的问题就是这样做
会造成真实的伤害，
会造成真实的伤害，
08:44
In the 1950s, a psychiatrist
named Eliot Slater
named Eliot Slater
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在20世纪50年代，一个名为
艾略特·斯莱特的精神病学家，
艾略特·斯莱特的精神病学家，
08:48
studied a cohort of 85 patients
who had been diagnosed with hysteria.
who had been diagnosed with hysteria.
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研究了一个85名被诊断
为癔病的患者群体，
为癔病的患者群体，
08:52
Nine years later, 12 of them were dead
and 30 had become disabled.
and 30 had become disabled.
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9年之后，他们中的
12人死亡，30人残疾。
12人死亡，30人残疾。
08:56
Many had undiagnosed conditions
like multiple sclerosis,
like multiple sclerosis,
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许多人得了尚未确诊的情况
比如多发性硬化、
比如多发性硬化、
癫痫以及脑肿瘤。
09:00
epilepsy, brain tumors.
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09:03
In 1980, hysteria was officially
renamed "conversion disorder."
renamed "conversion disorder."
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在1980年，癔病被正式重新
命名为 “（神经）转化性疾患”。
命名为 “（神经）转化性疾患”。
09:07
When my neurologist gave me
that diagnosis in 2012,
that diagnosis in 2012,
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当我的神经科医生在
2012年将我确诊为这个病时，
2012年将我确诊为这个病时，
09:10
he was echoing Freud's words verbatim,
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他逐字地重复佛洛依德的话，
09:13
and even today,
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甚至到了今天，
09:14
women are 2 to 10 times more likely
to receive that diagnosis.
to receive that diagnosis.
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女性确诊这个疾病的概率
仍然是男性的2到10倍，
仍然是男性的2到10倍，
09:20
The problem with the theory of hysteria
or psychogenic illness
or psychogenic illness
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癔病或者精神性疾病理论的问题，
09:24
is that it can never be proven.
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在于他们从来没有被证实过，
09:26
It is by definition
the absence of evidence,
the absence of evidence,
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很明显的它缺少依据，
09:30
and in the case of ME,
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至于慢性疲劳综合症，
09:31
psychological explanations
have held back biological research.
have held back biological research.
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心理学解释阻止了生物研究的继续。
09:35
All around the world, ME is one
of the least funded diseases.
of the least funded diseases.
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在全世界范围内，慢性疲劳综合症
是被投入最少的疾病之一，
是被投入最少的疾病之一，
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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在美国，我们每年为每名艾滋病
患者投入大约2500美元，
患者投入大约2500美元，
09:46
250 dollars per MS patient
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为每名多发性硬化症患者
投入250美元，
投入250美元，
09:50
and just 5 dollars per year
per ME patient.
per ME patient.
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而对于慢性疲劳综合症患者
这个数字只有5美元，
这个数字只有5美元，
09:54
This was not just lightning.
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这不仅仅是减少，
09:56
I was not just unlucky.
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我不仅仅是不走运，
09:58
The ignorance surrounding my disease
has been a choice,
has been a choice,
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接受这个疾病一直
被无视已经是一个选择。
被无视已经是一个选择。
10:01
a choice made by the institutions
that were supposed to protect us.
that were supposed to protect us.
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这个选择是由本该保护
我们的那些研究机构做出的，
我们的那些研究机构做出的，
10:07
We don't know why ME
sometimes runs in families,
sometimes runs in families,
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我们不知道为什么慢性
疲劳综合症会在家族遗传，
疲劳综合症会在家族遗传，
10:10
why you can get it
after almost any infection,
after almost any infection,
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为什么任何一个传染病，
10:12
from enteroviruses
to Epstein-Barr virus to Q fever,
to Epstein-Barr virus to Q fever,
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从肠道病毒到疱疹病毒到Q热
感染之后都会得慢性疲劳综合症？
感染之后都会得慢性疲劳综合症？
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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或者，为什么女性得这个病的
概率会是男性的两到三倍？
概率会是男性的两到三倍？
10:21
This issue is much bigger
than just my disease.
than just my disease.
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这些问题比我得这个病本身更严重，
10:24
When I first got sick,
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当我第一次生病的时候，
老朋友们都来联系我，
10:25
old friends were reaching out to me.
194
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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
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很快我发现我自己成为了一群
在接近30岁的时候，
在接近30岁的时候，
身体就开始衰弱的女性中的一员，
10:31
whose bodies were falling apart.
196
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10:34
What was striking was just how
much trouble we were having
much trouble we were having
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令人感到打击的是，
10:36
being taken seriously.
198
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被重视的仅仅只是
我们遇到了多少困难。
我们遇到了多少困难。
10:38
I learned of one woman with scleroderma,
199
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我认识了一位得了硬皮病的女性，
10:40
an autoimmune connective tissue disease,
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这是一种自身免疫性结缔组织疾病，
10:42
who was told for years
that it was all in her head.
that it was all in her head.
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在几年的时间里她被
告知这个病在她的脑部，
告知这个病在她的脑部，
10:45
Between the time of onset and diagnosis,
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在着手治疗和诊断的这段时间里，
她的食道被完全损坏，
10:47
her esophagus was so thoroughly damaged,
203
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10:50
she will never be able to eat again.
204
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至今仍然无法进食，
10:52
Another woman with ovarian cancer,
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另外一位得了卵巢癌的女性，
10:55
who for years was told
that it was just early menopause.
that it was just early menopause.
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在很长时间里被医生
告知只是早期更年期，
告知只是早期更年期，
10:59
A friend from college,
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另外一位大学里的朋友，
11:00
whose brain tumor was misdiagnosed
for years as anxiety.
for years as anxiety.
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得了脑瘤却被错误的诊断成焦虑症，
11:06
Here's why this worries me:
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这就是为什么让我感觉忧虑的原因：
11:09
since the 1950s, rates of many
autoimmune diseases
autoimmune diseases
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从20世纪50年代起
自身免疫系统的得病率，
自身免疫系统的得病率，
11:12
have doubled to tripled.
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是以前的两倍到三倍，
11:14
Forty-five percent of patients
who are eventually diagnosed
who are eventually diagnosed
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45%最终被诊断为
11:17
with a recognized autoimmune disease
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1994
已知的自身免疫系统疾病的患者，
11:19
are initially told they're hypochondriacs.
214
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最初只是被告知得了忧郁症。
11:22
Like the hysteria of old,
this has everything to do with gender
this has everything to do with gender
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就像古时的癔病，
11:25
and with whose stories we believe.
216
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这与性别和我们
所相信的故事都有关系，
所相信的故事都有关系，
11:28
Seventy-five percent
of autoimmune disease patients are women,
of autoimmune disease patients are women,
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3651
75%自身免疫系统疾病
的患者都是女性，
的患者都是女性，
11:32
and in some diseases,
it's as high as 90 percent.
it's as high as 90 percent.
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并且在某些疾病中
这个比例高达90%，
这个比例高达90%，
11:37
Even though these diseases
disproportionately affect women,
disproportionately affect women,
219
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尽管这些疾病不同比例的影响着女性，
它们并非女性疾病，
11:39
they are not women's diseases.
220
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11:41
ME affects children
and ME affects millions of men.
and ME affects millions of men.
221
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慢性疲劳综合症也影响着儿童和男性，
11:45
And as one patient told me,
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就像一位患者告诉我的，
11:47
we get it coming and going --
223
695154
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这个病是来来去去变化不定的--
11:48
if you're a woman, you're told
you're exaggerating your symptoms,
you're exaggerating your symptoms,
224
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如果你是女性，他们说你夸大了症状，
11:52
but if you're a guy, you're told
to be strong, to buck up.
to be strong, to buck up.
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但是如果你是男性，他们
鼓励你要强壮要振作起来，
鼓励你要强壮要振作起来，
11:56
And men may even have
a more difficult time getting diagnosed.
a more difficult time getting diagnosed.
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尽管男性会更难以确诊，
12:09
My brain is not what it used to be.
227
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我的大脑已经不是曾经那样了。
12:25
Here's the good part:
228
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1327
但是依旧有好消息：
尽管如此，我依然有希望，
12:28
despite everything, I still have hope.
229
736645
2179
12:31
So many diseases were once
thought of as psychological
thought of as psychological
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3900
有太多的疾病在科学揭示
他们的生物原理之前，
他们的生物原理之前，
12:35
until science uncovered
their biological mechanisms.
their biological mechanisms.
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都被认为是心理上的
12:39
Patients with epilepsy
could be forcibly institutionalized
could be forcibly institutionalized
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747323
3094
癫痫患者会被强制收容治疗，
12:42
until the EEG was able to measure
abnormal electrical activity in the brain.
abnormal electrical activity in the brain.
233
750441
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直到脑电图能够测量
脑部不正常的电流活动，
脑部不正常的电流活动，
多发性硬化症会被错误的
诊断为癔病性麻痹，
诊断为癔病性麻痹，
12:47
Multiple sclerosis could be misdiagnosed
as hysterical paralysis
as hysterical paralysis
234
755500
4276
12:51
until the CAT scan and the MRI
discovered brain lesions.
discovered brain lesions.
235
759800
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直到造影扫描和核磁
共振发现了脑损伤，
共振发现了脑损伤，
12:55
And recently, we used to think
236
763945
1515
而最近，我们曾经所认为的
12:57
that stomach ulcers
were just caused by stress,
were just caused by stress,
237
765484
2820
胃溃疡是因为压力过大，
13:00
until we discovered
that H. pylori was the culprit.
that H. pylori was the culprit.
238
768328
3320
直到我们发现幽门
螺杆菌才是罪魁祸首，
螺杆菌才是罪魁祸首，
13:04
ME has never benefited
from the kind of science
from the kind of science
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2894
慢性疲劳综合症却从来得益于
13:07
that other diseases have had,
240
775719
2310
这种其它疾病可以获得的科学治疗。
13:10
but that's starting to change.
241
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1664
但是这一切开始在转变，
13:12
In Germany, scientists are starting
to find evidence of autoimmunity,
to find evidence of autoimmunity,
242
780661
3541
在德国，科学家开始
发现自身免疫疾病的依据，
发现自身免疫疾病的依据，
13:16
and in Japan, of brain inflammation.
243
784226
2342
在日本，则发现了脑炎症的依据，
13:19
In the US, scientists at Stanford
are finding abnormalities
are finding abnormalities
244
787406
3054
在美国，斯坦福的科学家
13:22
in energy metabolism
245
790484
1896
正在研究能量代谢的异常情况，
也就是他们发现了与
正常值相差16的标准偏差，
正常值相差16的标准偏差，
13:24
that are 16 standard deviations
away from normal.
away from normal.
246
792404
3462
13:28
And in Norway, researchers
are running a phase-3 clinical trial
are running a phase-3 clinical trial
247
796640
4045
在挪威，研究者正在进行一个
抗癌药物第三阶段的临床试验，
抗癌药物第三阶段的临床试验，
13:32
on a cancer drug that in some patients
causes complete remission.
causes complete remission.
248
800709
3667
这个药物可以使一部分
患者得到完全的好转，
患者得到完全的好转，
13:37
What also gives me hope
249
805798
1661
同样给了我希望的
13:40
is the resilience of patients.
250
808316
2017
是患者的恢复力，
13:43
Online we came together,
251
811968
1874
在网上，我们走到了一起，
13:46
and we shared our stories.
252
814251
1679
我们开始分享各自的故事，
13:49
We devoured what research there was.
253
817449
2774
我们如饥似渴的了解科研的进度，
13:52
We experimented on ourselves.
254
820743
2077
我们在自己身上做实验，
13:55
We became our own scientists
and our own doctors
and our own doctors
255
823496
2373
因为不得已，
我们成为了自己的科学家和医生。
13:57
because we had to be.
256
825893
1591
然后慢慢地，我从这里得到了5%的
进展，从那里得到5%的进展，
进展，从那里得到5%的进展，
14:00
And slowly I added five percent here,
five percent there,
five percent there,
257
828378
3739
直到最后，在最好的时候，
14:04
until eventually, on a good day,
258
832141
2233
14:06
I was able to leave my home.
259
834398
1906
我可以走出我的家，
14:09
I still had to make ridiculous choices:
260
837815
2587
我依然需要做一个很愚蠢的选择：
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
今天我是将在花园里待15分钟
还是去洗个头发？
还是去洗个头发？
14:16
But it gave me hope
that I could be treated.
that I could be treated.
262
844924
2428
但是这给了我被治愈的希望。
14:19
I had a sick body; that was all.
263
847693
2342
我身患疾病，而这就是全部，
如果得到了正确的治疗
某一天我就可以康复。
某一天我就可以康复。
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
14:27
I came together with patients
around the world,
around the world,
265
855740
3203
我和全世界的患者联合起来，
14:31
and we started to fight.
266
859466
1754
我们开始战斗，
14:33
We have filled the void
with something wonderful,
with something wonderful,
267
861863
3171
我们用一些美好的东西
把这片空白填满，
把这片空白填满，
14:37
but it is not enough.
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但这远远不够，
14:40
I still don't know if I will ever
be able to run again,
be able to run again,
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我仍然不知道我是否还能再一次奔跑，
14:44
or walk at any distance,
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或者走上一段距离，
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.
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或者做任何现在只能
在我梦里出现的运动，
在我梦里出现的运动，
但是我对我现在所能走到的
这一步表示感恩，
这一步表示感恩，
14:51
But I am so grateful
for how far I have come.
for how far I have come.
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14:55
Progress is slow,
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进展虽然很慢，
14:57
and it is up
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而且有时出现，
14:59
and it is down,
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有时不见，
15:01
but I am getting a little better each day.
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但是我每天都在变得好一点点，
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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我记得当我在被困在卧室里的样子，
我记得我再一次见到阳光
已经过了好几个月，
已经过了好几个月，
15:10
when it had been months
since I had seen the sun.
since I had seen the sun.
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15:15
I thought that I would die there.
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我想那时我也许是要死了，
15:18
But here I am today,
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但是今天我在这里，
15:21
with you,
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和你们一起。
15:23
and that is a miracle.
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这已经是个奇迹，
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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我不知道如果我
不是这其中一个幸运儿。
不是这其中一个幸运儿。
15:32
had I gotten sick before the internet,
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如果我在有互联网之前生病，
15:34
had I not found my community.
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如果我没有找到属于
我的团体，将会发生什么，
我的团体，将会发生什么，
15:37
I probably would have already
taken my own life,
taken my own life,
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我或许已经自杀，
就像很多人做的那样，
15:41
as so many others have done.
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15:44
How many lives could
we have saved, decades ago,
we have saved, decades ago,
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如果在数十年之前我们可以问出，
正确的问题有多少生命可以得救？
15:47
if we had asked the right questions?
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15:50
How many lives could we save today
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如果我们有了一个真正的开始，
15:53
if we decide to make a real start?
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现在又有多少生命可以得救？
15:57
Even once the true cause
of my disease is discovered,
of my disease is discovered,
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即使慢性疲劳综合症的
真正原因被发现，
真正原因被发现，
16:00
if we don't change
our institutions and our culture,
our institutions and our culture,
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而我们的研究机构和
我们的文化没有改变，
我们的文化没有改变，
16:04
we will do this again to another disease.
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那么下一次我们还是会用同样的
方式去对待另外一种疾病，
方式去对待另外一种疾病，
16:07
Living with this illness has taught me
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与这个疾病共生教会我，
16:09
that science and medicine
are profoundly human endeavors.
are profoundly human endeavors.
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科学和药物是人类深刻地努力，
16:13
Doctors, scientists and policy makers
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医生、科学家和决策者
16:15
are not immune to the same biases
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并不能对影响我们的，
所有偏见免疫。
16:19
that affect all of us.
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16:23
We need to think in more nuanced ways
about women's health.
about women's health.
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我们需要用一个更细致入微的
方式来思考女性健康，
方式来思考女性健康，
16:27
Our immune systems are just as much
a battleground for equality
a battleground for equality
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我们的免疫系统就和我们
身体的其它部分一样，
身体的其它部分一样，
他们是平等的战场，
16:31
as the rest of our bodies.
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16:33
We need to listen to patients' stories,
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我们需要去聆听患者们的故事，
16:36
and we need to be willing
to say, "I don't know."
to say, "I don't know."
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并且我们需要乐意说“我不知道”，
16:40
"I don't know" is a beautiful thing.
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“我不知道”这句话
是一个美妙的事情，
是一个美妙的事情，
16:43
"I don't know" is where discovery starts.
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“我不知道”就是一个探索的开始，
16:47
And if we can do that,
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如果我们可以做到这一点，
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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如果我们可以去探索我们
所有不知道的广袤领域，
所有不知道的广袤领域，
16:53
and then, rather than fear uncertainty,
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而不是去畏惧未知，
16:55
maybe we can greet it
with a sense of wonder.
with a sense of wonder.
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也许我们就可以用惊叹
向那未知的领域致敬。
向那未知的领域致敬。
16:58
Thank you.
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谢谢大家。
谢谢大家。
17:04
Thank you.
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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