TEDSummit
Jennifer Brea: What happens when you have a disease doctors can't diagnose
珍·布瑞: 當你的疾病醫生無法診斷時該怎麼辦？
Filmed:
Readability: 4.1
2,042,782 views
五年前，TED的員工珍·布瑞 開始患有肌痛性腦脊髓炎且日趨嚴重。此病俗稱慢性疲勞綜合症，是一種使人衰弱的疾病，它嚴重地影響正常的活動。糟糕的時候甚至床單的沙沙聲都會難以忍受。 在這場令人心酸的演講中，布瑞描述了她在尋求治療這種我們不完全了解根本原因和對身體影響的疾病所以到困難，同時表達她的使命--通過電影的形式記錄患者臨床治療的艱辛。
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.
[珍妮佛·布瑞]
嗨。
00:17
Hi.
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00:19
Thank you.
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謝謝你們。
00:20
[Jennifer Brea is sound-sensitive.
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[珍妮佛 布列對聲音敏感。
00:22
The live audience was asked
to applaud ASL-style, in silence.]
to applaud ASL-style, in silence.]
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現場觀眾被要求以
無聲的手語式鼓掌。]
無聲的手語式鼓掌。]
00:25
So, five years ago, this was me.
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這是五年前的我。
00:29
I was a PhD student at Harvard,
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我那時是哈佛大學攻讀博士的學生，
00:31
and I loved to travel.
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我非常喜歡旅遊。
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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我那時剛與我生命的最愛訂婚。
我那時28歲，
和我們許多人一樣在健康時候，
和我們許多人一樣在健康時候，
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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我覺得我是無所不能。
00:43
I felt like I was invincible.
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突然有一天，我發燒到104.7度。
00:46
Then one day I had
a fever of 104.7 degrees.
a fever of 104.7 degrees.
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我那時應該去看醫生，
00:50
I probably should have gone to the doctor,
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00:52
but I'd never really been sick in my life,
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但是我從沒生過什麼病，
00:55
and I knew that usually,
if you have a virus,
if you have a virus,
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我知道通常如果你感染了病毒，
00:57
you stay home and you make
some chicken soup,
some chicken soup,
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你應該在家裡休息，煮一些雞湯，
01:00
and in a few days,
everything will be fine.
everything will be fine.
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幾天後，你就沒事了。
01:04
But this time it wasn't fine.
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但是這次不是這樣。
01:07
After the fever broke,
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我發燒以後，
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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我暈眩了三個星期，
我根本無法出門。
我根本無法出門。
我常常撞到門框。
01:13
I would walk straight into door frames.
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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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我必須摸著牆壁才能去到浴室。
那個春天我一直重覆感染，
01:20
That spring I got infection
after infection,
after infection,
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每一次我去看醫生，
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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他說我絕對沒有什麼問題。
01:29
He had his laboratory tests,
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他做了一些檢驗，
01:31
which always came back normal.
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結果都是正常。
我可以形容我的症狀，
01:33
All I had were my symptoms,
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我可以形容我的症狀，
01:35
which I could describe,
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01:37
but no one else can see.
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但是沒有人看得到。
01:41
I know it sounds silly,
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我知道聽起來很可笑，
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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但是你必須找到方法來說服你自己，
01:45
and so I thought maybe I was just aging.
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所以我想或許我只是在老化。
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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或許這就像是在25歲的另一頭。
01:53
(Laughter)
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（笑聲）
01:56
Then the neurological symptoms started.
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然後神經的症狀開始出現。
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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有時我發現我無法畫圓形的右邊。
有時我完全無法說話或者無法動。
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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我看過每一科的專科醫師：
02:10
I saw every kind of specialist:
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感染科醫師、
皮膚科醫師、內分泌專家、
皮膚科醫師、內分泌專家、
02:12
infectious disease doctors,
dermatologists, endocrinologists,
dermatologists, endocrinologists,
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心臟科醫師、
02:15
cardiologists.
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我甚至看了精神科醫師。
02:16
I even saw a psychiatrist.
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02:19
My psychiatrist said,
"It's clear you're really sick,
"It's clear you're really sick,
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我的精神科醫師說，
「你是真的有病，
但不是精神疾病，
我希望他們可以找到你的問題。」
我希望他們可以找到你的問題。」
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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隔一天，我的神經科醫師
診斷我有轉換障礙。
診斷我有轉換障礙。
02:30
The next day, my neurologist
diagnosed me with conversion disorder.
diagnosed me with conversion disorder.
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他告訴我所有的問題 －
02:34
He told me that everything --
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02:37
the fevers, the sore throats,
the sinus infection,
the sinus infection,
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發燒、喉嚨痛、鼻竇炎、
02:40
all of the gastrointestinal,
neurological and cardiac symptoms --
neurological and cardiac symptoms --
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所有的胃腸、神經和心臟症狀 －
02:44
were being caused
by some distant emotional trauma
by some distant emotional trauma
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都是因為我不記得的
一些過去的情緒創傷所引起的。
一些過去的情緒創傷所引起的。
都是因為我不記得的
一些過去的情緒創傷所引起的。
一些過去的情緒創傷所引起的。
02:47
that I could not remember.
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02:50
The symptoms were real, he said,
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他說，那些症狀都是真的，
02:52
but they had no biological cause.
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但是它們的病因與生理無關。
我那時學的是社會科學。
02:56
I was training to be a social scientist.
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02:59
I had studied statistics,
probability theory,
probability theory,
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我修過統計學、機率理論、
03:02
mathematical modeling,
experimental design.
experimental design.
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數學建模、實驗設計。
03:07
I felt like I couldn't just reject
my neurologist's diagnosis.
my neurologist's diagnosis.
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我覺得我不能否認
我的神經科醫生的診斷。
我的神經科醫生的診斷。
我感覺實際並非如此，
03:11
It didn't feel true,
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03:13
but I knew from my training
that the truth is often counterintuitive,
that the truth is often counterintuitive,
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但從我的訓練
我知道真理往往是違反直覺。
我知道真理往往是違反直覺。
03:17
so easily obscured
by what we want to believe.
by what we want to believe.
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所以直覺很容易地
因為我們想要相信而被遮蔽了。
因為我們想要相信而被遮蔽了。
03:20
So I had to consider the possibility
that he was right.
that he was right.
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我必須考慮醫生的診斷是正確的可能性。
03:25
That day, I ran a small experiment.
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那天，我做了一個小實驗。
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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我走了兩英里，
從我的神經科醫師的診所回到家裡，
從我的神經科醫師的診所回到家裡，
03:33
my legs wrapped in this strange,
almost electric kind of pain.
almost electric kind of pain.
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我的腿感覺被包在一種奇怪的
像是被電到的痛苦。
像是被電到的痛苦。
我對著那個痛感冥思，
03:38
I meditated on that pain,
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03:40
contemplating how my mind
could have possibly generated all this.
could have possibly generated all this.
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思維著我的心
如何有可能產生這一切。
如何有可能產生這一切。
03:45
As soon as I walked through the door,
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當我走進門時，
03:47
I collapsed.
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我癱瘓在地上。
03:48
My brain and my spinal cord were burning.
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我的頭腦和我的脊椎像是在燃燒。
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
我的下巴無法碰到我的胸部，
我的下巴無法碰到我的胸部，
03:57
and the slightest sound --
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而且很小的聲音 －
03:59
the rustling of the sheets,
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床單的沙沙聲，
04:00
my husband walking barefoot
in the next room --
in the next room --
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我的丈夫在隔壁房間赤腳走路的聲音－
04:03
could cause excruciating pain.
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都讓我感到極度的痛苦。
04:07
I would spend most
of the next two years in bed.
of the next two years in bed.
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接下來的兩年我都臥床。
04:11
How could my doctor
have gotten it so wrong?
have gotten it so wrong?
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我的醫師怎能錯得如此離譜？
04:14
I thought I had a rare disease,
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我以為我得到罕見的疾病，
04:17
something doctors had never seen.
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醫生從沒見過的。
後來我就上網
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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發現世界各地有數千人
有著同樣的症狀，
04:23
living with the same symptoms,
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04:26
similarly isolated,
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同樣的孤立，
同樣的無法相信。
04:27
similarly disbelieved.
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04:29
Some could still work,
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有些人還可以工作，
但是晚上和週末就只能臥床，
04:31
but had to spend their evenings
and weekends in bed,
and weekends in bed,
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04:33
just so they could show up
the next Monday.
the next Monday.
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他們才有可能在下個星期一去上班。
04:36
On the other end of the spectrum,
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在另一端，
04:38
some were so sick
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有些人嚴重到
04:40
they had to live in complete darkness,
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他們只能在完全黑暗中生活，
04:42
unable to tolerate
the sound of a human voice
the sound of a human voice
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無法容忍任何人的聲音
04:45
or the touch of a loved one.
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或是被所愛的人觸摸。
04:49
I was diagnosed
with myalgic encephalomyelitis.
with myalgic encephalomyelitis.
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我被診斷為肌痛性腦脊髓炎。
04:54
You've probably heard it called
"chronic fatigue syndrome."
"chronic fatigue syndrome."
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你們可能聽過，它也被稱為
“慢性疲勞綜合症”。
“慢性疲勞綜合症”。
04:58
For decades, that's a name
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數十年來這個病名
05:00
that's meant that this
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意味著
05:03
has been the dominant image
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一直主導的形象是
這個疾病可以是如此嚴重。
05:04
of a disease that can be
as serious as this.
as serious as this.
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05:09
The key symptom we all share
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我們都有的主要的症狀是
05:11
is that whenever we exert ourselves --
physically, mentally --
physically, mentally --
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每當我們過度使用我們的身體或精神，
05:15
we pay and we pay hard.
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我們就要付出代價，很大的代價。
如果我丈夫去跑步，
他可能會酸痛一兩天。
他可能會酸痛一兩天。
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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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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如果我嘗試走半條街，
我可能就會臥床一個星期。
我可能就會臥床一個星期。
05:25
It is a perfect custom prison.
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這是一個完美的訂製監獄。
我認識無法跳舞的芭蕾舞者，
05:28
I know ballet dancers who can't dance,
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05:31
accountants who can't add,
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無法做加法的會計師，
05:33
medical students who never became doctors.
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無法成為醫生的醫科學生。
05:36
It doesn't matter what you once were;
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無論你曾經是什麼；
05:39
you can't do it anymore.
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你都無法再做了。
05:41
It's been four years,
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已經四年了，
05:43
and I've still never been as well as I was
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我還是無法恢復到
05:46
the minute before I walked home
from my neurologist's office.
from my neurologist's office.
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我從我的神經醫師的診所
走回家前的那一分鐘的狀態。
走回家前的那一分鐘的狀態。
[1500 到 3000萬]
根據統計，全世界大約有一千五百到三千萬人
05:50
It's estimated that about 15 to 30 million
people around the world
people around the world
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05:53
have this disease.
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罹患這個疾病。
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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在美國，我的家鄉，大約有一百萬人。
05:58
That makes it roughly twice as common
as multiple sclerosis.
as multiple sclerosis.
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它大約是多發性硬化的兩倍。
有充血性心力衰竭的患者可以活幾十年。
06:03
Patients can live for decades
with the physical function
with the physical function
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06:06
of someone with congestive heart failure.
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有充血性心力衰竭的患者可以活幾十年。
06:09
Twenty-five percent of us
are homebound or bedridden,
are homebound or bedridden,
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我們有25%的人
無法出門或整日臥床，
無法出門或整日臥床，
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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我們有75％到85％的人
甚至不能做兼職的工作。
甚至不能做兼職的工作。
06:17
Yet doctors do not treat us
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然而，醫生不治療我們，
06:20
and science does not study us.
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科學不研究我們。
06:23
How could a disease this common
and this devastating
and this devastating
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為何這麼常見和如此具毀滅性的疾病，
被醫學遺忘了呢？
06:27
have been forgotten by medicine?
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06:31
When my doctor diagnosed me
with conversion disorder,
with conversion disorder,
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當我的醫生診斷我的病為轉換障礙，
06:33
he was invoking a lineage
of ideas about women's bodies
of ideas about women's bodies
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他所用的是關於婦女身體的傳統想法，
那是2,500年以來的想法。
06:36
that are over 2,500 years old.
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06:39
The Roman physician Galen thought
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羅馬時代的加倫醫生認為
06:40
that hysteria was caused
by sexual deprivation
by sexual deprivation
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歇斯底里症是由於缺乏性生活所造成的,
06:43
in particularly passionate women.
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特別是熱情的婦女。
06:47
The Greeks thought the uterus
would literally dry up
would literally dry up
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希臘人認為子宮會乾掉
06:49
and wander around the body
in search of moisture,
in search of moisture,
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並在身體各處尋找水分，
06:52
pressing on internal organs --
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給內臟造成壓力 -
06:54
yes --
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是的 －
06:56
causing symptoms from extreme emotions
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引起極端情緒化的症狀，
06:59
to dizziness and paralysis.
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頭暈和癱瘓。
07:02
The cure was marriage and motherhood.
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治愈的方法是結婚和成為母親。
07:06
These ideas went largely unchanged
for several millennia until the 1880s,
for several millennia until the 1880s,
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這些想法從幾千年前到1880年代，
基本上沒有改變，
基本上沒有改變，
07:11
when neurologists tried to modernize
the theory of hysteria.
the theory of hysteria.
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直到神經學家試圖將
歇斯底里的理論現代化。
歇斯底里的理論現代化。
弗洛伊德制定了一個理論
07:15
Sigmund Freud developed a theory
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07:17
that the unconscious mind
could produce physical symptoms
could produce physical symptoms
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那就是潛意識的心
可能產生身體症狀，
可能產生身體症狀，
當它在處理記憶或情緒
07:20
when dealing with memories or emotions
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因為太痛苦，清醒的意識無法處理。
07:22
too painful for the conscious
mind to handle.
mind to handle.
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07:24
It converted these emotions
into physical symptoms.
into physical symptoms.
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它將這些情緒轉化成生理的症狀。
07:29
This meant that men
could now get hysteria,
could now get hysteria,
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這意味著男人是可能得到歇斯底里症，
但當然婦女還是最容易得的。
07:31
but of course women were still
the most susceptible.
the most susceptible.
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07:35
When I began investigating
the history of my own disease,
the history of my own disease,
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當我開始調查我的疾病的歷史，
07:39
I was amazed to find how deep
these ideas still run.
these ideas still run.
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我很驚訝於發現這些想法仍然深植於人心。
07:43
In 1934,
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在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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在洛杉磯縣總醫院有
198位醫師、護士、和醫療工作人員
198位醫師、護士、和醫療工作人員
生了重病。
07:49
became seriously ill.
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07:50
They had muscle weakness, stiffness
in the neck and back, fevers --
in the neck and back, fevers --
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他們有肌肉無力、
頸部和背部僵硬、和發燒等症狀－
頸部和背部僵硬、和發燒等症狀－
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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就是我剛被診斷時的所有一樣的症狀。
07:58
Doctors thought
it was a new form of polio.
it was a new form of polio.
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那時醫生認為這是一種新的小兒麻痺症。
08:02
Since then, there have been more
than 70 outbreaks documented
than 70 outbreaks documented
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從那時起，世界上有超過70起的發病記錄，
從那時起，世界上有超過70起的發病記錄，
08:05
around the world,
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幾乎和感染後疾病完全相似。
08:06
of a strikingly similar
post-infectious disease.
post-infectious disease.
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08:09
All of these outbreaks have tended
to disproportionately affect women,
to disproportionately affect women,
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這些發病都不成比率地
發生在婦女身上。
發生在婦女身上。
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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過了一段時間，
當醫生找不到單一病因，
當醫生找不到單一病因，
08:17
they thought that these outbreaks
were mass hysteria.
were mass hysteria.
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他們認為這些病例
是集體性歇斯底里症。
是集體性歇斯底里症。
08:21
Why has this idea had such staying power?
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為什麼這個想法有如此持續力呢？
08:25
I do think it has to do with sexism,
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我覺得這是和性別歧視有關，
08:27
but I also think that fundamentally,
doctors want to help.
doctors want to help.
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但我也認為，從根本上說，
醫生是想幫助。
醫生是想幫助。
08:30
They want to know the answer,
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他們想知道答案，
08:32
and this category allows doctors to treat
what would otherwise be untreatable,
what would otherwise be untreatable,
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用這個分類，讓醫生治療
這個否則會被當做無法治療的病，
這個否則會被當做無法治療的病，
08:37
to explain illnesses
that have no explanation.
that have no explanation.
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解釋這個無法解釋的病。
08:41
The problem is that this
can cause real harm.
can cause real harm.
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問題是這樣可能造成真正的傷害。
08:44
In the 1950s, a psychiatrist
named Eliot Slater
named Eliot Slater
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在1950年代，
一位叫做 艾利耶特·斯雷特 的精神科醫生，
一位叫做 艾利耶特·斯雷特 的精神科醫生，
08:48
studied a cohort of 85 patients
who had been diagnosed with hysteria.
who had been diagnosed with hysteria.
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研究了一群85名
被診斷為歇斯底里症的患者。
被診斷為歇斯底里症的患者。
08:52
Nine years later, 12 of them were dead
and 30 had become disabled.
and 30 had become disabled.
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九年後，其中12人死亡，
30人已經變成殘疾。
30人已經變成殘疾。
08:56
Many had undiagnosed conditions
like multiple sclerosis,
like multiple sclerosis,
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許多人有未確診的情況
如多發性硬化、
如多發性硬化、
09:00
epilepsy, brain tumors.
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癲癇、腦腫瘤。
09:03
In 1980, hysteria was officially
renamed "conversion disorder."
renamed "conversion disorder."
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在1980年，歇斯底里症被正式
更名為“轉換障礙症”。
更名為“轉換障礙症”。
09:07
When my neurologist gave me
that diagnosis in 2012,
that diagnosis in 2012,
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我的神經科醫師在2012年給我那個診斷，
09:10
he was echoing Freud's words verbatim,
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他逐字使用弗洛伊德的話，
09:13
and even today,
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目前仍然如此。
09:14
women are 2 to 10 times more likely
to receive that diagnosis.
to receive that diagnosis.
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婦女得到這個診斷的比率是男人的2到10倍。
09:20
The problem with the theory of hysteria
or psychogenic illness
or psychogenic illness
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問題是歇斯底里症或心因性疾病的理論
09:24
is that it can never be proven.
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永遠無法被證明。
09:26
It is by definition
the absence of evidence,
the absence of evidence,
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它的定義就是缺乏證據，
09:30
and in the case of ME,
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就 ME（肌痛性腦脊髓炎）而言，
09:31
psychological explanations
have held back biological research.
have held back biological research.
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從心理方面的解釋
抑制了生物學方面的研究。
抑制了生物學方面的研究。
09:35
All around the world, ME is one
of the least funded diseases.
of the least funded diseases.
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世界各地，ME 是一個
最少被資助的疾病。
最少被資助的疾病。
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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在美國，我們每年花費
約2,500美元在每位艾滋病患者身上，
約2,500美元在每位艾滋病患者身上，
09:46
250 dollars per MS patient
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250美元在 MS（多發性硬化）患者身上，
09:50
and just 5 dollars per year
per ME patient.
per ME patient.
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但是每年只有5美元在 ME 患者。
09:54
This was not just lightning.
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這不只是偶然的。
09:56
I was not just unlucky.
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我只是很不幸運。
09:58
The ignorance surrounding my disease
has been a choice,
has been a choice,
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圍繞著我得到的疾病的無知
是選擇的結果，
是選擇的結果，
10:01
a choice made by the institutions
that were supposed to protect us.
that were supposed to protect us.
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由應該保護我們的機構做出的選擇。
10:07
We don't know why ME
sometimes runs in families,
sometimes runs in families,
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我們不知道為什麼ME
有時有家族性，
有時有家族性，
10:10
why you can get it
after almost any infection,
after almost any infection,
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為什麼你幾乎可以在任何感染後得到它，
10:12
from enteroviruses
to Epstein-Barr virus to Q fever,
to Epstein-Barr virus to Q fever,
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從腸道病毒到愛潑斯坦 -
巴爾病毒到Q發熱，
巴爾病毒到Q發熱，
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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或為什麼它影響婦女的比率是
是男性的兩到三倍。
是男性的兩到三倍。
10:21
This issue is much bigger
than just my disease.
than just my disease.
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這個問題比僅僅是我的疾病要大得多。
10:24
When I first got sick,
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當我剛生病時，
10:25
old friends were reaching out to me.
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老朋友都還和我聯絡。
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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我很快發現自己是
一群將近30歲的婦女的一部分，
一群將近30歲的婦女的一部分，
10:31
whose bodies were falling apart.
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1686
她們的身體逐漸不行。
10:34
What was striking was just how
much trouble we were having
much trouble we were having
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最驚人的是
我們非常不容易
我們非常不容易
10:36
being taken seriously.
198
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1158
讓人們把我們當一回事。
10:38
I learned of one woman with scleroderma,
199
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1958
我聽說一個有硬皮病的婦女，
10:40
an autoimmune connective tissue disease,
200
628559
2100
那是一種自身免疫性結締組織病。
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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多年來，她被告知
這一切都是她的心裡問題。
這一切都是她的心裡問題。
10:45
Between the time of onset and diagnosis,
202
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2512
在發病和診斷的時間之間，
10:47
her esophagus was so thoroughly damaged,
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2427
她的食道被徹底地損壞，
10:50
she will never be able to eat again.
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她永遠不能再吃東西。
10:52
Another woman with ovarian cancer,
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另一個婦女有卵巢癌，
10:55
who for years was told
that it was just early menopause.
that it was just early menopause.
206
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2748
多年來
醫生告訴她那只是更年期早期症狀。
醫生告訴她那只是更年期早期症狀。
10:59
A friend from college,
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我的一位大學同學，
11:00
whose brain tumor was misdiagnosed
for years as anxiety.
for years as anxiety.
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他的腦腫瘤多年來被誤診為焦慮症。
11:06
Here's why this worries me:
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這就是為什麼這讓我擔心：
11:09
since the 1950s, rates of many
autoimmune diseases
autoimmune diseases
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從1950以來，許多自身免疫性疾病的比率
11:12
have doubled to tripled.
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已增加一倍到兩倍。
11:14
Forty-five percent of patients
who are eventually diagnosed
who are eventually diagnosed
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百分之四十五的患者
最後都有被診斷為
最後都有被診斷為
11:17
with a recognized autoimmune disease
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1994
某種自身免疫疾病，
11:19
are initially told they're hypochondriacs.
214
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2508
他們最初被告知
他們是慮病症（hypochondriacs） 。
他們是慮病症（hypochondriacs） 。
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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就像以前的歇斯底里症，
他們認為這些病都與性別有關
他們認為這些病都與性別有關
11:25
and with whose stories we believe.
216
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1866
我們相信了這些說法。
11:28
Seventy-five percent
of autoimmune disease patients are women,
of autoimmune disease patients are women,
217
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3651
百分之七十五
的自身免疫性疾病患者是婦女，
的自身免疫性疾病患者是婦女，
11:32
and in some diseases,
it's as high as 90 percent.
it's as high as 90 percent.
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3179
在有些疾病，它高達90％。
11:37
Even though these diseases
disproportionately affect women,
disproportionately affect women,
219
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2857
即使這些疾病
很不成比率地影響婦女，
很不成比率地影響婦女，
11:39
they are not women's diseases.
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它們不是婦女的疾病。
11:41
ME affects children
and ME affects millions of men.
and ME affects millions of men.
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3688
兒童罹患 ME，
數百萬的男人罹患 ME。
數百萬的男人罹患 ME。
11:45
And as one patient told me,
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1785
有一個病人告訴我，
11:47
we get it coming and going --
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1508
我們不知所以的得到這個診斷 -
11:48
if you're a woman, you're told
you're exaggerating your symptoms,
you're exaggerating your symptoms,
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3608
如果你是一個婦女，
你會被告知你誇大你的症狀，
你會被告知你誇大你的症狀，
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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但如果你是一個男性，
你會被告知你要堅強，要加強。
你會被告知你要堅強，要加強。
11:56
And men may even have
a more difficult time getting diagnosed.
a more difficult time getting diagnosed.
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4149
男人甚至更難被正確地診斷。
12:09
My brain is not what it used to be.
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2865
我的大腦大不如前。
12:25
Here's the good part:
228
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1327
好消息是：
12:28
despite everything, I still have hope.
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2179
儘管發生了這一切，我仍有抱著希望。
12:31
So many diseases were once
thought of as psychological
thought of as psychological
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3900
許多疾病曾經被認為是心理的，
12:35
until science uncovered
their biological mechanisms.
their biological mechanisms.
231
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2908
直到科學發現其生物學機制。
12:39
Patients with epilepsy
could be forcibly institutionalized
could be forcibly institutionalized
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3094
癲癇患者曾被強制住在機構裡，
12:42
until the EEG was able to measure
abnormal electrical activity in the brain.
abnormal electrical activity in the brain.
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直到EEG能夠測量
大腦中的異常放電狀況。
大腦中的異常放電狀況。
12:47
Multiple sclerosis could be misdiagnosed
as hysterical paralysis
as hysterical paralysis
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755500
4276
多發性硬化可能被誤診
為歇斯底里性麻痺，
為歇斯底里性麻痺，
12:51
until the CAT scan and the MRI
discovered brain lesions.
discovered brain lesions.
235
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3312
直到 CAT 掃描和 MRI 發現腦損傷。
12:55
And recently, we used to think
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1515
最近，我們過去以為
12:57
that stomach ulcers
were just caused by stress,
were just caused by stress,
237
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2820
胃潰瘍是因為壓力造成的，
13:00
until we discovered
that H. pylori was the culprit.
that H. pylori was the culprit.
238
768328
3320
直到我們發現
幽門螺桿菌是罪魁禍首。
幽門螺桿菌是罪魁禍首。
13:04
ME has never benefited
from the kind of science
from the kind of science
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ME未曾從像其他疾病
得到的那種科學收益，
得到的那種科學收益，
13:07
that other diseases have had,
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775719
2310
ME未曾從像其他疾病
得到的那種科學收益，
得到的那種科學收益，
13:10
but that's starting to change.
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1664
但那開始在改變。
13:12
In Germany, scientists are starting
to find evidence of autoimmunity,
to find evidence of autoimmunity,
242
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3541
在德國，科學家開始尋找自體免疫的證據，
13:16
and in Japan, of brain inflammation.
243
784226
2342
在日本，他們在尋找腦炎症的。
13:19
In the US, scientists at Stanford
are finding abnormalities
are finding abnormalities
244
787406
3054
在美國，史丹佛大學的科學家
正常值16個標準差以外
能量代謝的異常。
能量代謝的異常。
13:22
in energy metabolism
245
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1896
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，研究人員對於一種
讓有些病人完全緩解的癌症藥物，
讓有些病人完全緩解的癌症藥物，
13:32
on a cancer drug that in some patients
causes complete remission.
causes complete remission.
248
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3667
正在進行第3期臨床試驗。
13:37
What also gives me hope
249
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1661
也讓我抱著希望的是
13:40
is the resilience of patients.
250
808316
2017
患者的彈性。
13:43
Online we came together,
251
811968
1874
透過網路我們在一起，
13:46
and we shared our stories.
252
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1679
我們彼此分享自己的故事。
13:49
We devoured what research there was.
253
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2774
我們研讀任何有關的研究。
13:52
We experimented on ourselves.
254
820743
2077
我們在自己身上做實驗。
13:55
We became our own scientists
and our own doctors
and our own doctors
255
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2373
我們成為我們自己的科學家
和我們自己的醫生
和我們自己的醫生
13:57
because we had to be.
256
825893
1591
因為我們必須如此。
14:00
And slowly I added five percent here,
five percent there,
five percent there,
257
828378
3739
慢慢地，我在這裡加百分之五，
那裡加百分之五，
那裡加百分之五，
14:04
until eventually, on a good day,
258
832141
2233
直到最後，在一個美好的一天，
14:06
I was able to leave my home.
259
834398
1906
我能夠離開我的家。
14:09
I still had to make ridiculous choices:
260
837815
2587
我仍然必須做很荒謬的選擇；
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?
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3841
我是要在花園坐15分鐘，
還是我今天要洗頭？
還是我今天要洗頭？
14:16
But it gave me hope
that I could be treated.
that I could be treated.
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844924
2428
但是它給予我
我可以被治好的希望。
我可以被治好的希望。
14:19
I had a sick body; that was all.
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2342
我有一個有病的身體；僅此而已。
14:22
And with the right kind of help,
maybe one day I could get better.
maybe one day I could get better.
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若是有了正確的幫助，
也許有一天我會更好。
也許有一天我會更好。
14:27
I came together with patients
around the world,
around the world,
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我與世界各地的病患在一起，
14:31
and we started to fight.
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我們開始戰鬥。
14:33
We have filled the void
with something wonderful,
with something wonderful,
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我們用美妙的東西填補了空白，
14:37
but it is not enough.
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但還是不夠。
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有可能再度能跑，
14:44
or walk at any distance,
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或者走遠一點，
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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或做我現在只能在我的夢裡
做的任何需要動力的活動。
做的任何需要動力的活動。
14:51
But I am so grateful
for how far I have come.
for how far I have come.
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但是我對我已經有的進步很感恩。
14:55
Progress is slow,
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進步很慢，
14:57
and it is up
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有時上，
14:59
and it is down,
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有時下，
15:01
but I am getting a little better each day.
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但是我每天都有好一點。
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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我記得當我被困在臥室裡的樣子，
15:10
when it had been months
since I had seen the sun.
since I had seen the sun.
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那時我幾個月後
才看到了太陽。
才看到了太陽。
15:15
I thought that I would die there.
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我以為我會死在那裡。
15:18
But here I am today,
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但是我今天在這裡，
15:21
with you,
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和你們一起，
15:23
and that is a miracle.
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這是一個奇蹟。
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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3619
我不知道如果我不是幸運的人之一，
15:32
had I gotten sick before the internet,
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如果我在網路時代前就生病，
15:34
had I not found my community.
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1974
如果我沒有找到我們的群組，
我會如何。
我會如何。
15:37
I probably would have already
taken my own life,
taken my own life,
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我很可能已經自殺了，
15:41
as so many others have done.
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如同許多其他人一樣。
15:44
How many lives could
we have saved, decades ago,
we have saved, decades ago,
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3224
數十年前，如果我們問對了問題
15:47
if we had asked the right questions?
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1903
我們本來可以救多少人的生命？
15:50
How many lives could we save today
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我們今天可以救多少生命
15:53
if we decide to make a real start?
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如果我們決定真正的開始？
15:57
Even once the true cause
of my disease is discovered,
of my disease is discovered,
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3043
甚至當我的疾病的真正原因
被發現，
被發現，
16:00
if we don't change
our institutions and our culture,
our institutions and our culture,
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3475
如果我們不改變我們的機構和我們的文化，
16:04
we will do this again to another disease.
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2376
我們仍然會如此對待另一個疾病。
16:07
Living with this illness has taught me
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1994
與這個病共存教我，
16:09
that science and medicine
are profoundly human endeavors.
are profoundly human endeavors.
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957676
2928
科學和醫學
是很深刻的人類努力。
是很深刻的人類努力。
16:13
Doctors, scientists and policy makers
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2591
醫生，科學家和決策者
16:15
are not immune to the same biases
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2887
不能免疫於影響我們所有人的同樣的偏見。
不能免疫於影響我們所有人的同樣的偏見。
16:19
that affect all of us.
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1579
16:23
We need to think in more nuanced ways
about women's health.
about women's health.
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971377
3052
我們需要對婦女的健康
做更細微的方式思考。
做更細微的方式思考。
16:27
Our immune systems are just as much
a battleground for equality
a battleground for equality
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975119
4102
我們的免疫系統和我們身體的其他部分
都是一樣是平等的戰場。
都是一樣是平等的戰場。
我們的免疫系統和我們身體的其他部分
都是一樣是平等的戰場。
都是一樣是平等的戰場。
16:31
as the rest of our bodies.
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1582
16:33
We need to listen to patients' stories,
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981253
2344
我們必須傾聽病人的故事，
16:36
and we need to be willing
to say, "I don't know."
to say, "I don't know."
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2565
我們也必須願意說，「我不知道。」
16:40
"I don't know" is a beautiful thing.
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2352
「我不知道」是一件美麗的事。
16:43
"I don't know" is where discovery starts.
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2592
「我不知道」是發現的起點。
16:47
And if we can do that,
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1422
如果我們能夠如此做，
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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997447
3695
如果我們能夠接近所有我們
不知道的巨大空洞，
不知道的巨大空洞，
16:53
and then, rather than fear uncertainty,
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1952
那時，代替害怕的不確定性，
16:55
maybe we can greet it
with a sense of wonder.
with a sense of wonder.
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2511
或許我們可用一種奇蹟的感覺去迎接它。
16:58
Thank you.
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謝謝大家！
17:04
Thank you.
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謝謝大家！
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