TEDSummit
Jennifer Brea: What happens when you have a disease doctors can't diagnose
Jen Brea: 如果你患咗一種醫生診斷唔到嘅病，咁會點？
Filmed:
Readability: 4.1
2,042,782 views
五年前， TED 研究生 Jen Brea 因為肌痛性腦脊髓炎，亦即係慢性疲勞症候群，而病咗一段時間。呢個病嚴重妨礙患者嘅正常活動，甚至可能連床單嘅摩擦聲都忍受唔到。呢場演講講述 Jen Brea 喺尋求治療時遇過嘅困難（佢呢個病至今我哋都未完全了解根本嘅病因同埋對生理方面嘅影響），同埋講佢有一個使命，想用紀錄片紀錄嗰啲因為醫學醫唔到嘅病人嘅生活。或者，呢場演講會打動到你。
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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大家好
00:19
Thank you.
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多謝
00:20
[Jennifer Brea is sound-sensitive.
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[ Jennifer Brea 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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現場觀眾用美式手語歡迎 ]
00:25
So, five years ago, this was me.
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呢個係五年前嘅我
00:29
I was a PhD student at Harvard,
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當時我係哈佛嘅博士生
00:31
and I loved to travel.
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鍾意旅行
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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啱啱同我生命中最愛嘅人訂婚
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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嗰陣我28歲，同大部份人一樣
00:43
I felt like I was invincible.
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覺得自己好健康、百毒不侵
00:46
Then one day I had
a fever of 104.7 degrees.
a fever of 104.7 degrees.
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有一日，我發燒燒到華氏 104.7 度
00:50
I probably should have gone to the doctor,
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其實我應該要去睇醫生
00:52
but I'd never really been sick in my life,
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不過，我一生中未患過病
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，一般如果你受病毒感染
00:57
you stay home and you make
some chicken soup,
some chicken soup,
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你留喺屋企，煲啲雞湯
01:00
and in a few days,
everything will be fine.
everything will be fine.
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幾日之內就會好返
01:04
But this time it wasn't fine.
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但係，呢次無好返
01:07
After the fever broke,
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發燒之後
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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三個星期都頭暈，無辦法出門口
01:13
I would walk straight into door frames.
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我行路會撞落門框度
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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我要扶住墻先可以行去浴室
01:20
That spring I got infection
after infection,
after infection,
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嗰年春天，我病完又病
01:23
and every time I went to the doctor,
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每一次我去睇醫生
01:25
he said there was absolutely
nothing wrong.
nothing wrong.
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佢都話絕對無問題
01:29
He had his laboratory tests,
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佢手上嘅化驗報告
01:31
which always came back normal.
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都話我好正常
01:33
All I had were my symptoms,
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我所有嘅癥狀
01:35
which I could describe,
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我都可以形容
01:37
but no one else can see.
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但無人睇到
01:41
I know it sounds silly,
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我知聽起嚟好傻
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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但係你點都會搵個原因畀自己
01:45
and so I thought maybe I was just aging.
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我以為可能係老化
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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或者呢個就係年過 25 嘅情況
01:53
(Laughter)
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（笑聲）
01:56
Then the neurological symptoms started.
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跟住，神經癥狀開始出現
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，我發現我畫唔到圓形嘅右邊
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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有時我會講唔到嘢，甚至郁唔到
02:10
I saw every kind of specialist:
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我睇過所有專科
02:12
infectious disease doctors,
dermatologists, endocrinologists,
dermatologists, endocrinologists,
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傳染病科、皮膚科、內分泌科、心臟科
02:15
cardiologists.
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02:16
I even saw a psychiatrist.
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我甚至睇埋精神科
02:19
My psychiatrist said,
"It's clear you're really sick,
"It's clear you're really sick,
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精神科醫生話︰「你好明顯病咗，
02:22
but not with anything psychiatric.
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但同精神科無關。
02:26
I hope they can find out
what's wrong with you."
what's wrong with you."
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我希望其他醫生搵到係咩事。」
02:30
The next day, my neurologist
diagnosed me with conversion disorder.
diagnosed me with conversion disorder.
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第二日，神經科醫生診斷出
我患咗轉化症
我患咗轉化症
02:34
He told me that everything --
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佢話所有癥狀——
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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所有腸胃、神經同心臟癥狀——
02:44
were being caused
by some distant emotional trauma
by some distant emotional trauma
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都因為某啲我唔記得嘅情緒創傷引起
02:47
that I could not remember.
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02:50
The symptoms were real, he said,
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佢話啲病癥都係真嘅
02:52
but they had no biological cause.
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但都冇生理原因解釋
02:56
I was training to be a social scientist.
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我曾經受訓做社會科學家
02:59
I had studied statistics,
probability theory,
probability theory,
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我讀過統計學、概率論
03:02
mathematical modeling,
experimental design.
experimental design.
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數學模型、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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雖然我唔可以否定神經科醫生嘅診斷
03:11
It didn't feel true,
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但我又覺得醫生嘅診斷唔係真嘅
03:13
but I knew from my training
that the truth is often counterintuitive,
that the truth is often counterintuitive,
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但知識話畀我聽事實多數違反直覺
03:17
so easily obscured
by what we want to believe.
by what we want to believe.
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事實好容易被自己想相信嘅嘢矇蔽
03:20
So I had to consider the possibility
that he was right.
that he was right.
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所以我諗可能佢係啱嘅
03:25
That day, I ran a small experiment.
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嗰日，我做咗個小實驗
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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我喺診所行咗兩英里返屋企
03:33
my legs wrapped in this strange,
almost electric kind of pain.
almost electric kind of pain.
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我對腳有種好奇怪、好似觸電嘅痛
03:38
I meditated on that pain,
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沿途，我仔細咁諗
03:40
contemplating how my mind
could have possibly generated all this.
could have possibly generated all this.
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我嘅心理點樣令呢一切發生
03:45
As soon as I walked through the door,
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當我行入門口
03:47
I collapsed.
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我跌低咗
03:48
My brain and my spinal cord were burning.
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個腦同脊髓好似火燒咁
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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條頸僵硬到下巴掂唔到胸口
03:57
and the slightest sound --
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同埋，無論幾細嘅聲都好——
03:59
the rustling of the sheets,
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就算床單摩擦
04:00
my husband walking barefoot
in the next room --
in the next room --
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老公赤腳喺隔離房行嘅聲音——
04:03
could cause excruciating pain.
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都會令我有難以忍受嘅痛楚
04:07
I would spend most
of the next two years in bed.
of the next two years in bed.
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跟住兩年嘅大部分時間
我都喺床上度過
我都喺床上度過
04:11
How could my doctor
have gotten it so wrong?
have gotten it so wrong?
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點解我嘅醫生會錯得咁離譜？
04:14
I thought I had a rare disease,
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我覺得我患咗一種罕見嘅病
04:17
something doctors had never seen.
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連醫生都未見過嘅病
04:19
And then I went online
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之後我上網
04:21
and found thousands of people
all over the world
all over the world
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搵到嚟自世界各地成千上萬嘅人
04:23
living with the same symptoms,
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原來都有同樣嘅癥狀
04:26
similarly isolated,
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同樣需要隔離
04:27
similarly disbelieved.
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同樣覺得難以置信
04:29
Some could still work,
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有啲人仲可以工作
04:31
but had to spend their evenings
and weekends in bed,
and weekends in bed,
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但夜晚同周未都一定要留喺床上
04:33
just so they could show up
the next Monday.
the next Monday.
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只係為咗下星期一可以返工
04:36
On the other end of the spectrum,
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至於其他人
04:38
some were so sick
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有啲病得好嚴重
04:40
they had to live in complete darkness,
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要喺完全黑暗嘅環境下生活
04:42
unable to tolerate
the sound of a human voice
the sound of a human voice
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無辦法忍受人聲
04:45
or the touch of a loved one.
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或者伴侶嘅觸摸
04:49
I was diagnosed
with myalgic encephalomyelitis.
with myalgic encephalomyelitis.
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我被診斷患上肌痛性腦脊髓炎
04:54
You've probably heard it called
"chronic fatigue syndrome."
"chronic fatigue syndrome."
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即係你可能聽過嘅「慢性疲勞症候群」
04:58
For decades, that's a name
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幾十年嚟
呢個名就代表住
一種可以嚴重成咁嘅疾病
一種可以嚴重成咁嘅疾病
05:00
that's meant that this
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05:03
has been the dominant image
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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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一樣我哋都有共同病徵就係
05:11
is that whenever we exert ourselves --
physically, mentally --
physically, mentally --
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當我哋耗盡全力，無論體力上定精神上
05:15
we pay and we pay hard.
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就要付出代價，好大代價
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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就好似如果我老公去跑步
佢可能會喉嚨痛幾日
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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或者如果我行過半個街口
大概就要瞓喺床度一個星期一樣
05:25
It is a perfect custom prison.
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呢個可以話係完美嘅軟禁
05:28
I know ballet dancers who can't dance,
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我識得跳唔到舞嘅芭蕾舞家
05:31
accountants who can't add,
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計唔到數嘅會計師
05:33
medical students who never became doctors.
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永遠都做唔成醫生嘅醫科生
05:36
It doesn't matter what you once were;
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你曾經係咩唔重要
05:39
you can't do it anymore.
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因為你都無辦法繼續做
05:41
It's been four years,
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過咗四年
05:43
and I've still never been as well as I was
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我仲未恢復到當日
由診所行返屋企前咁健康
由診所行返屋企前咁健康
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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據估計，全球大概有
1,500 到 3,000 萬人患咗呢種病
1,500 到 3,000 萬人患咗呢種病
05:53
have this disease.
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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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喺我嘅國家，美國
就有一百萬人患咗呢種病
就有一百萬人患咗呢種病
05:58
That makes it roughly twice as common
as multiple sclerosis.
as multiple sclerosis.
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大約係患上多發性硬化嘅兩倍
06:03
Patients can live for decades
with the physical function
with the physical function
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病人可以生存到幾十年
但佢哋嘅活動能力就好似
06:06
of someone with congestive heart failure.
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患咗充血性心力衰竭咁
有 25% 嘅病人要留喺屋企或者喺床上
06:09
Twenty-five percent of us
are homebound or bedridden,
are homebound or bedridden,
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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% 至 85% 甚至唔可以做兼職
06:17
Yet doctors do not treat us
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事實上，醫生唔會醫我哋
06:20
and science does not study us.
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科學家唔會研究我哋
06:23
How could a disease this common
and this devastating
and this devastating
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點解呢種咁普遍同埋慘嘅病
會被醫學界遺忘？
會被醫學界遺忘？
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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當我嘅醫生診斷出我患咗轉化症
06:33
he was invoking a lineage
of ideas about women's bodies
of ideas about women's bodies
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佢指向緊
一啲有 2,500 年歷史
有關女性身體嘅諗法
有關女性身體嘅諗法
06:36
that are over 2,500 years old.
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06:39
The Roman physician Galen thought
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古羅馬醫生蓋倫認為
06:40
that hysteria was caused
by sexual deprivation
by sexual deprivation
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歇斯底里症嘅成因係性渴求
尤其係熱情嘅女性
尤其係熱情嘅女性
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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蓋倫認為子宮會變乾
06:49
and wander around the body
in search of moisture,
in search of moisture,
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並且喺身體遊走搵水份
擠壓內臟——
06:52
pressing on internal organs --
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06:54
yes --
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無錯——
06:56
causing symptoms from extreme emotions
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引致極端情緒
06:59
to dizziness and paralysis.
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甚至頭暈同癱瘓
07:02
The cure was marriage and motherhood.
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當時嘅療法係結婚同生仔
07:06
These ideas went largely unchanged
for several millennia until the 1880s,
for several millennia until the 1880s,
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呢種諗法維持到 1880 年代
07:11
when neurologists tried to modernize
the theory of hysteria.
the theory of hysteria.
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當時嘅神經病學家
嘗試更新歇斯底里症嘅理論
嘗試更新歇斯底里症嘅理論
07:15
Sigmund Freud developed a theory
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佛洛伊德發展咗一個理論
07:17
that the unconscious mind
could produce physical symptoms
could produce physical symptoms
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佢話︰當明意識處理唔到
一啲太痛苦嘅記憶或者情緒
一啲太痛苦嘅記憶或者情緒
07:20
when dealing with memories or emotions
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潛意識就會產生生理徵狀
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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將情緒轉化為生理徵狀
07:29
This meant that men
could now get hysteria,
could now get hysteria,
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即係，依架男性都會患歇斯底里症
07:31
but of course women were still
the most susceptible.
the most susceptible.
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但當然女性比較容易受影響
07:35
When I began investigating
the history of my own disease,
the history of my own disease,
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當我開始睇返我呢個病嘅歷史
07:39
I was amazed to find how deep
these ideas still run.
these ideas still run.
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我好驚訝呢啲舊諗法仍然深入民心
07:43
In 1934,
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1934 年喺洛杉磯縣綜合醫院
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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198 個醫生、護士同醫院員工
病得好嚴重
病得好嚴重
07:49
became seriously ill.
148
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1541
07:50
They had muscle weakness, stiffness
in the neck and back, fevers --
in the neck and back, fevers --
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佢哋肌肉衰弱，頸同背脊僵硬，又發燒
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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同我當初病一樣
07:58
Doctors thought
it was a new form of polio.
it was a new form of polio.
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醫生以為係變種嘅小兒麻痹症
08:02
Since then, there have been more
than 70 outbreaks documented
than 70 outbreaks documented
152
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2931
自從嗰次之後
全球錄得超過 70 次
好相似嘅後感染性疾病個案
好相似嘅後感染性疾病個案
08:05
around the world,
153
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08:06
of a strikingly similar
post-infectious disease.
post-infectious disease.
154
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08:09
All of these outbreaks have tended
to disproportionately affect women,
to disproportionately affect women,
155
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3493
所有爆發傾向影響女性
08:13
and in time, when doctors failed to find
the one cause of the disease,
the one cause of the disease,
156
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3927
當時醫生搵唔到病因
08:17
they thought that these outbreaks
were mass hysteria.
were mass hysteria.
157
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於是認為係大規模嘅歇斯底里症爆發
08:21
Why has this idea had such staying power?
158
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2905
點解呢個諗法可以保持咁耐？
08:25
I do think it has to do with sexism,
159
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我真係覺得同性別歧視有關
08:27
but I also think that fundamentally,
doctors want to help.
doctors want to help.
160
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3441
但係我諗醫生係想幫手
08:30
They want to know the answer,
161
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佢哋想知答案
08:32
and this category allows doctors to treat
what would otherwise be untreatable,
what would otherwise be untreatable,
162
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4891
但呢個講法至少可以畀醫生醫人
08:37
to explain illnesses
that have no explanation.
that have no explanation.
163
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2805
畀醫生去解釋一啲解釋唔到嘅疾病
08:41
The problem is that this
can cause real harm.
can cause real harm.
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問題係，咁樣會帶嚟真正嘅傷害
08:44
In the 1950s, a psychiatrist
named Eliot Slater
named Eliot Slater
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1950 年代
一個叫 Eliot Slater 嘅精神科醫生
一個叫 Eliot Slater 嘅精神科醫生
08:48
studied a cohort of 85 patients
who had been diagnosed with hysteria.
who had been diagnosed with hysteria.
166
516002
4184
研究咗 85 個
被診斷出患上歇斯底里症嘅病人
被診斷出患上歇斯底里症嘅病人
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 年之後，12 個死咗，30 個殘障
08:56
Many had undiagnosed conditions
like multiple sclerosis,
like multiple sclerosis,
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好多人有診斷唔到嘅病
好似多發性硬化、癲癇、腦腫瘤
09:00
epilepsy, brain tumors.
169
528244
1896
09:03
In 1980, hysteria was officially
renamed "conversion disorder."
renamed "conversion disorder."
170
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喺 1980 年
歇斯底里症正式改名為「轉化症」
09:07
When my neurologist gave me
that diagnosis in 2012,
that diagnosis in 2012,
171
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3324
神經科醫生喺 2012 年幫我診症嘅時候
09:10
he was echoing Freud's words verbatim,
172
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2617
佢完全跟隨緊佛洛伊德嘅說話
09:13
and even today,
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1151
今時今日
09:14
women are 2 to 10 times more likely
to receive that diagnosis.
to receive that diagnosis.
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4374
女性被診斷呢個病嘅機會
比男性多 2-10 倍
比男性多 2-10 倍
09:20
The problem with the theory of hysteria
or psychogenic illness
or psychogenic illness
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3999
問題係歇斯底里理論或者心理病理論
係永遠無辦法證實
係永遠無辦法證實
09:24
is that it can never be proven.
176
552510
2034
09:26
It is by definition
the absence of evidence,
the absence of evidence,
177
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2855
個理論本身係無證據
09:30
and in the case of ME,
178
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1375
以肌痛性腦脊髓炎為例，你會發現
09:31
psychological explanations
have held back biological research.
have held back biological research.
179
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4005
心理學嘅解釋窒礙生物學嘅研究
09:35
All around the world, ME is one
of the least funded diseases.
of the least funded diseases.
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3299
喺全球，肌痛性腦脊髓炎
係其中一個研究資助最少嘅病
係其中一個研究資助最少嘅病
09:39
In the US, we spend each year
roughly 2,500 dollars per AIDS patient,
roughly 2,500 dollars per AIDS patient,
181
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6942
喺美國，每年喺每個愛滋病人身上
用咗大概 2,500 美金
09:46
250 dollars per MS patient
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2720
多發性硬化症病人就 250 美金
09:50
and just 5 dollars per year
per ME patient.
per ME patient.
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3207
而肌痛性腦脊髓炎病人就只用 5 美金
09:54
This was not just lightning.
184
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2081
呢件事唔係突然間嚟
09:56
I was not just unlucky.
185
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1764
我唔只係唔好彩
09:58
The ignorance surrounding my disease
has been a choice,
has been a choice,
186
586494
3091
無視我呢個病係一個決定
10:01
a choice made by the institutions
that were supposed to protect us.
that were supposed to protect us.
187
589609
4124
係由應該要保護我哋嘅機構
做嘅一個決定
做嘅一個決定
10:07
We don't know why ME
sometimes runs in families,
sometimes runs in families,
188
595535
2871
我哋唔知點解有時肌痛性腦脊髓炎
喺家族入面發生
喺家族入面發生
10:10
why you can get it
after almost any infection,
after almost any infection,
189
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唔知點解你幾乎每次感染
10:12
from enteroviruses
to Epstein-Barr virus to Q fever,
to Epstein-Barr virus to Q fever,
190
600919
3733
腸道病毒、人類疱疹病毒第四型
以至到 Q 型流感嘅時候
以至到 Q 型流感嘅時候
肌痛性腦脊髓炎就會病發
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.
191
605123
3240
又或者點解佢影響女性
比男性多兩至三倍
比男性多兩至三倍
10:21
This issue is much bigger
than just my disease.
than just my disease.
192
609058
2719
呢啲嘢比我嘅病重要得多
10:24
When I first got sick,
193
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1183
當初我病嘅時候
10:25
old friends were reaching out to me.
194
613563
2158
舊朋友都有樂意幫我
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
之後我發覺自己
同一班就嚟 30 歲嘅女士一樣
同一班就嚟 30 歲嘅女士一樣
身體面臨崩潰
10:31
whose bodies were falling apart.
196
619333
1686
10:34
What was striking was just how
much trouble we were having
much trouble we were having
197
622012
2855
最得人驚嘅係到底我哋面對緊嘅麻煩
有幾多係被認真咁對待
10:36
being taken seriously.
198
624891
1158
10:38
I learned of one woman with scleroderma,
199
626577
1958
我知道有個女士
患咗一種自身免疫結締組織病
患咗一種自身免疫結締組織病
10:40
an autoimmune connective tissue disease,
200
628559
2100
10:42
who was told for years
that it was all in her head.
that it was all in her head.
201
630683
2710
好多年都係話問題喺佢個頭度
10:45
Between the time of onset and diagnosis,
202
633417
2512
由發病到診斷
10:47
her esophagus was so thoroughly damaged,
203
635953
2427
佢條食道完完全全被破壞
10:50
she will never be able to eat again.
204
638404
2245
佢無辦法再食嘢
10:52
Another woman with ovarian cancer,
205
640673
2182
另一個患咗卵巢癌嘅女士
好多年都係話佢只係提早咗更年期
10:55
who for years was told
that it was just early menopause.
that it was just early menopause.
206
643376
2748
10:59
A friend from college,
207
647188
1568
我有一個大學朋友
11:00
whose brain tumor was misdiagnosed
for years as anxiety.
for years as anxiety.
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648780
3895
佢腦腫瘤曾經被誤診為焦慮症
11:06
Here's why this worries me:
209
654222
1610
呢個就係令我擔心嘅原因︰
11:09
since the 1950s, rates of many
autoimmune diseases
autoimmune diseases
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3451
自從 1950 年代開始
患自身免疫病嘅比例增加三倍
11:12
have doubled to tripled.
211
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1703
11:14
Forty-five percent of patients
who are eventually diagnosed
who are eventually diagnosed
212
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2940
45% 最後確診患咗
一種已知嘅自身免疫病嘅人
一種已知嘅自身免疫病嘅人
11:17
with a recognized autoimmune disease
213
665782
1994
11:19
are initially told they're hypochondriacs.
214
667800
2508
初時被診斷患咗軟骨炎
11:22
Like the hysteria of old,
this has everything to do with gender
this has everything to do with gender
215
670783
3150
就好似以前嘅歇斯底里症咁
所有診斷都同性別拉上關係
11:25
and with whose stories we believe.
216
673957
1866
11:28
Seventy-five percent
of autoimmune disease patients are women,
of autoimmune disease patients are women,
217
676974
3651
75% 嘅自身免疫病嘅病人都係女性
11:32
and in some diseases,
it's as high as 90 percent.
it's as high as 90 percent.
218
680649
3179
某啲疾病甚至 90% 都係女性
11:37
Even though these diseases
disproportionately affect women,
disproportionately affect women,
219
685076
2857
就算女性係容易患上呢啲病
11:39
they are not women's diseases.
220
687957
1652
呢啲都唔係女性專有嘅病
11:41
ME affects children
and ME affects millions of men.
and ME affects millions of men.
221
689633
3688
肌痛性脊髓炎出現喺小朋友
亦出現喺過百萬男性身上
11:45
And as one patient told me,
222
693345
1785
正如某個病人同我講
11:47
we get it coming and going --
223
695154
1508
我哋畀呢個病侵擾我哋……
11:48
if you're a woman, you're told
you're exaggerating your symptoms,
you're exaggerating your symptoms,
224
696686
3608
如果你係女性，人哋就話你誇大癥狀
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
但如果你係男性
人哋就叫你堅強、振作
人哋就叫你堅強、振作
11:56
And men may even have
a more difficult time getting diagnosed.
a more difficult time getting diagnosed.
226
704676
4149
男性甚至更難診斷
12:09
My brain is not what it used to be.
227
717419
2865
雖然我嘅頭腦唔似以前咁
12:25
Here's the good part:
228
733914
1327
但無論點
12:28
despite everything, I still have hope.
229
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2179
我仲抱有希望
12:31
So many diseases were once
thought of as psychological
thought of as psychological
230
739903
3900
有好多病一開始都被認為係精神方面嘅
12:35
until science uncovered
their biological mechanisms.
their biological mechanisms.
231
743827
2908
直至科學發現佢哋嘅生物機制
12:39
Patients with epilepsy
could be forcibly institutionalized
could be forcibly institutionalized
232
747323
3094
喺腦電圖測到大腦異常活動之前
12:42
until the EEG was able to measure
abnormal electrical activity in the brain.
abnormal electrical activity in the brain.
233
750441
4604
癲癇病人可能被強制送入精神病院
12:47
Multiple sclerosis could be misdiagnosed
as hysterical paralysis
as hysterical paralysis
234
755500
4276
喺斷層掃描同磁力共振發現腦病變之前
12:51
until the CAT scan and the MRI
discovered brain lesions.
discovered brain lesions.
235
759800
3312
多發性硬化有可能誤診為
歇斯底里性麻痺
歇斯底里性麻痺
12:55
And recently, we used to think
236
763945
1515
以前，我哋認為胃潰瘍
只係因為壓力而形成
只係因為壓力而形成
12:57
that stomach ulcers
were just caused by stress,
were just caused by stress,
237
765484
2820
13:00
until we discovered
that H. pylori was the culprit.
that H. pylori was the culprit.
238
768328
3320
到依架我哋發現
幽門螺旋菌先係罪魁禍首
幽門螺旋菌先係罪魁禍首
13:04
ME has never benefited
from the kind of science
from the kind of science
239
772801
2894
肌痛性腦脊髓炎從未好似其他病咁
得到科學嘅幫助
得到科學嘅幫助
13:07
that other diseases have had,
240
775719
2310
13:10
but that's starting to change.
241
778053
1664
但係呢個情況已經開始改變
13:12
In Germany, scientists are starting
to find evidence of autoimmunity,
to find evidence of autoimmunity,
242
780661
3541
喺德國，科學家開始
搵自身免疫病嘅證據
搵自身免疫病嘅證據
13:16
and in Japan, of brain inflammation.
243
784226
2342
日本搵緊腦炎症嘅證據
13:19
In the US, scientists at Stanford
are finding abnormalities
are finding abnormalities
244
787406
3054
喺美國，史丹福科學家喺度搵緊
能量代謝達16 個標準差嘅異常情況
13:22
in energy metabolism
245
790484
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
喺挪威，研究人員
為一種喺某啲病人身上
可以完全緩解癌症嘅藥
可以完全緩解癌症嘅藥
13:32
on a cancer drug that in some patients
causes complete remission.
causes complete remission.
248
800709
3667
進行緊第三階段嘅臨床實驗
13:37
What also gives me hope
249
805798
1661
仲畀到希望我嘅就係病人嘅韌力
13:40
is the resilience of patients.
250
808316
2017
13:43
Online we came together,
251
811968
1874
我哋透過網絡走埋一齊
13:46
and we shared our stories.
252
814251
1679
分享自己嘅故事
13:49
We devoured what research there was.
253
817449
2774
我哋讀晒現有嘅研究
13:52
We experimented on ourselves.
254
820743
2077
我哋用自己嚟做實驗
13:55
We became our own scientists
and our own doctors
and our own doctors
255
823496
2373
我哋要成為自己嘅科學家同醫生
13:57
because we had to be.
256
825893
1591
我哋一定要咁做
14:00
And slowly I added five percent here,
five percent there,
five percent there,
257
828378
3739
我慢慢咁喺呢度加 5%，嗰度加 5%
14:04
until eventually, on a good day,
258
832141
2233
直到有一日，我可以行出屋企
14:06
I was able to leave my home.
259
834398
1906
14:09
I still had to make ridiculous choices:
260
837815
2587
我仍然要做一啲荒謬嘅訣擇︰
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?
261
840568
3841
我今日坐係花園 15 分鐘，定係洗頭好？
14:16
But it gave me hope
that I could be treated.
that I could be treated.
262
844924
2428
但係我仍然相信我可以好返
14:19
I had a sick body; that was all.
263
847693
2342
我除咗有一個病咗嘅身體，咩都好好
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
得到正確嘅幫助，或者有一日我會好返
14:27
I came together with patients
around the world,
around the world,
265
855740
3203
我同世界各地嘅病人一齊對抗呢個病
14:31
and we started to fight.
266
859466
1754
14:33
We have filled the void
with something wonderful,
with something wonderful,
267
861863
3171
我哋將美好嘅事物填滿空虛
14:37
but it is not enough.
268
865698
1492
但咁係唔夠
14:40
I still don't know if I will ever
be able to run again,
be able to run again,
269
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4037
我仍然唔知我仲可唔可以跑、行路
14:44
or walk at any distance,
270
872723
1897
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
依架呢啲嘢只可以喺夢度做
14:51
But I am so grateful
for how far I have come.
for how far I have come.
272
879143
3090
但係嚟到呢度我都好感恩
14:55
Progress is slow,
273
883955
1485
進展係慢
14:57
and it is up
274
885464
1292
有時好
14:59
and it is down,
275
887310
1256
有時壞
15:01
but I am getting a little better each day.
276
889222
2913
但係每一日都好一啲
15:06
I remember what it was like
when I was stuck in that bedroom,
when I was stuck in that bedroom,
277
894013
3919
我記得匿埋係睡房好幾個月
不見天日嘅感覺
不見天日嘅感覺
15:10
when it had been months
since I had seen the sun.
since I had seen the sun.
278
898548
2948
15:15
I thought that I would die there.
279
903226
2088
我以為我會死喺嗰度
15:18
But here I am today,
280
906961
1567
但係我今日喺呢度，同你哋一齊
15:21
with you,
281
909255
1282
15:23
and that is a miracle.
282
911513
2061
呢個就係奇蹟
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,
283
916606
3619
如果我唔係幸運嘅一群
如果我喺互聯網出現之前病
15:32
had I gotten sick before the internet,
284
920377
2177
如果我搵唔到同病相憐嘅人
15:34
had I not found my community.
285
922995
1974
我唔知我會點
15:37
I probably would have already
taken my own life,
taken my own life,
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大概我會好似好多其他人咁已經自殺
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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如果我哋幾十年前問啱問題
15:47
if we had asked the right questions?
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可以救返幾多人？
15:50
How many lives could we save today
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如果今日我哋真真正正開始
又可以救返幾多人？
15:53
if we decide to make a real start?
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15:57
Even once the true cause
of my disease is discovered,
of my disease is discovered,
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如果我哋唔改變我哋嘅體制同文化
16:00
if we don't change
our institutions and our culture,
our institutions and our culture,
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就算搵到我個病嘅真正原因
16:04
we will do this again to another disease.
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我哋都會喺其他病重蹈覆轍
16:07
Living with this illness has taught me
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呢個病教識咗我
科學同醫學都深受人類追求嘅
科學同醫學都深受人類追求嘅
16:09
that science and medicine
are profoundly human endeavors.
are profoundly human endeavors.
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16:13
Doctors, scientists and policy makers
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醫生、科學家同政策制訂者
都同普通人一樣受偏見影響
都同普通人一樣受偏見影響
16:15
are not immune to the same biases
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2887
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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我哋要喺微細之處諗諗女性嘅健康
16:27
Our immune systems are just as much
a battleground for equality
a battleground for equality
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我哋嘅免疫系統同身體其他部分一樣
需要顧及
需要顧及
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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我哋要聽病人嘅故事
16:36
and we need to be willing
to say, "I don't know."
to say, "I don't know."
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亦要肯講「我唔知」
16:40
"I don't know" is a beautiful thing.
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「我唔知」係一件美好嘅事
16:43
"I don't know" is where discovery starts.
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「我唔知」先會有探索
16:47
And if we can do that,
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如果我哋做到「我唔知」
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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如果我哋可以接觸眾多嘅未知
16:53
and then, rather than fear uncertainty,
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而唔係怕當中嘅不確定性
16:55
maybe we can greet it
with a sense of wonder.
with a sense of wonder.
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我哋或者可以讚歎地欣賞其中
16:58
Thank you.
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多謝
17:04
Thank you.
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多謝
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