Thank you.

嗨。

[Jennifer Brea is sound-sensitive.

謝謝你們。

The live audience was asked to applaud ASL-style, in silence.]

[珍妮佛·布瑞對聲音敏感。

So, five years ago, this was me.

現場觀眾被要求以 無聲的手語式鼓掌。]

I was a PhD student at Harvard,

這是五年前的我。

and I loved to travel.

我那時是哈佛大學攻讀博士的學生，

I had just gotten engaged to marry the love of my life.

我非常喜歡旅遊。

I was 28, and like so many of us when we are in good health,

我那時剛與我生命的最愛訂婚。

I felt like I was invincible.

我那時 28 歲，

Then one day I had a fever of 104.7 degrees.

和我們許多人一樣，在健康時候，

I probably should have gone to the doctor,

我覺得我是無所不能。

but I'd never really been sick in my life,

突然有一天，我發燒到 40.39 度。

and I knew that usually, if you have a virus,

我那時應該去看醫生，

you stay home and you make some chicken soup,

但是我從沒生過什麼病，

and in a few days, everything will be fine.

我知道通常如果你感染了病毒，

But this time it wasn't fine.

你應該在家裡休息，煮一些雞湯，

After the fever broke,

幾天後，你就沒事了。

for three weeks I was so dizzy, I couldn't leave my house.

但是這次不是這樣。

I would walk straight into door frames.

我退燒以後，

I had to hug the walls just to make it to the bathroom.

我暈眩了三個星期， 我根本無法出門。

That spring I got infection after infection,

我常常撞到門框。

and every time I went to the doctor,

我必須摸著牆壁才能去到浴室。

he said there was absolutely nothing wrong.

那個春天我一直重覆感染，

He had his laboratory tests,

每一次我去看醫生，

which always came back normal.

他說我絕對沒有什麼問題。

All I had were my symptoms,

他做了一些檢驗，

which I could describe,

結果都是正常。

but no one else can see.

我可以形容我的症狀，

I know it sounds silly,

但是沒有人看得到。

but you have to find a way to explain things like this to yourself,

我知道聽起來很可笑，

and so I thought maybe I was just aging.

但是你必須找到方法來說服你自己，

Maybe this is what it's like to be on the other side of 25.

所以我想或許我只是在老化。

(Laughter)

或許這就像是在 25 歲的另一頭。

Then the neurological symptoms started.

（笑聲）

Sometimes I would find that I couldn't draw the right side of a circle.

然後神經的症狀開始出現。

Other times I wouldn't be able to speak or move at all.

有時我發現我無法畫圓形的右邊。

I saw every kind of specialist:

有時我完全無法說話或者無法動。

infectious disease doctors, dermatologists, endocrinologists,

我看過每一科的專科醫師：

cardiologists.

感染科醫師、 皮膚科醫師、內分泌專家、

I even saw a psychiatrist.

心臟科醫師、

My psychiatrist said, "It's clear you're really sick,

我甚至看了精神科醫師。

but not with anything psychiatric.

我的精神科醫師說：

I hope they can find out what's wrong with you."

「你是真的有病，

The next day, my neurologist diagnosed me with conversion disorder.

但不是精神疾病， 我希望他們可以找到你的問題。」

He told me that everything --

隔一天，我的神經科醫師 診斷我有轉化症。

the fevers, the sore throats, the sinus infection,

他告訴我所有的問題──

all of the gastrointestinal, neurological and cardiac symptoms --

發燒、喉嚨痛、鼻竇炎、

were being caused by some distant emotional trauma

所有的胃腸、神經和心臟症狀──

that I could not remember.

都是因為我不記得的 一些過去的情緒創傷所引起的。

The symptoms were real, he said,

他說，那些症狀都是真的，

but they had no biological cause.

但是它們的病因與生理無關。

I was training to be a social scientist.

我那時學的是社會科學。

I had studied statistics, probability theory,

我修過統計學、機率理論、

mathematical modeling, experimental design.

數學建模、實驗設計。

I felt like I couldn't just reject my neurologist's diagnosis.

我覺得我不能否認 我的神經科醫生的診斷。

It didn't feel true,

我感覺實際並非如此，

but I knew from my training that the truth is often counterintuitive,

但從我的訓練 我知道真理往往違反直覺，

so easily obscured by what we want to believe.

因為我們想要相信而被遮蔽了。

So I had to consider the possibility that he was right.

我必須考慮醫生的診斷 是正確的可能性。

That day, I ran a small experiment.

那天，我做了一個小實驗。

I walked back the two miles from my neurologist's office to my house,

我走了兩英里，

my legs wrapped in this strange, almost electric kind of pain.

從我的神經科醫師的診所回到家裡，

I meditated on that pain,

我的腿感覺被包在一種奇怪的 像是被電到的痛苦。

contemplating how my mind could have possibly generated all this.

我對著那個痛感冥思，

As soon as I walked through the door,

思維著我的心 如何有可能產生這一切。

I collapsed.

當我走進門時，

My brain and my spinal cord were burning.

我癱瘓在地上。

My neck was so stiff I couldn't touch my chin to my chest,

我的頭腦和我的脊椎像是在燃燒。

and the slightest sound --

我的脖子僵硬到 我的下巴無法碰到我的胸部，

the rustling of the sheets,

而且很小的聲音──

my husband walking barefoot in the next room --

床單的沙沙聲，

could cause excruciating pain.

我的丈夫在隔壁房間 赤腳走路的聲音──

I would spend most of the next two years in bed.

都讓我感到極度的痛苦。

How could my doctor have gotten it so wrong?

接下來的兩年我都臥床。

I thought I had a rare disease,

我的醫師怎能錯得如此離譜？

something doctors had never seen.

我以為我得到罕見的疾病，

And then I went online

醫生從沒見過的。

and found thousands of people all over the world

後來我就上網

living with the same symptoms,

發現世界各地有數千人

similarly isolated,

有著同樣的症狀，

similarly disbelieved.

同樣的孤立，

Some could still work,

同樣的無法相信。

but had to spend their evenings and weekends in bed,

有些人還可以工作，

just so they could show up the next Monday.

但是晚上和週末就只能臥床，

On the other end of the spectrum,

他們才有可能在下個星期一去上班。

some were so sick

在另一端，

they had to live in complete darkness,

有些人嚴重到

unable to tolerate the sound of a human voice

他們只能在完全黑暗中生活，

or the touch of a loved one.

無法容忍任何人的聲音

I was diagnosed with myalgic encephalomyelitis.

或是被所愛的人觸摸。

You've probably heard it called "chronic fatigue syndrome."

我被診斷為肌痛性腦脊髓炎。

For decades, that's a name

你們可能聽過，它也被稱為 「慢性疲勞症候群。」

that's meant that this

數十年來這個病名

has been the dominant image

意味著圖上這個，

of a disease that can be as serious as this.

一直是這個病的主要形象。

The key symptom we all share

但是這個疾病可以是如此嚴重。

is that whenever we exert ourselves -- physically, mentally --

我們都有的主要的症狀是

we pay and we pay hard.

每當我們過度使用我們的身體或精神，

If my husband goes for a run, he might be sore for a couple of days.

我們就要付出代價，很大的代價。

If I try to walk half a block, I might be bedridden for a week.

如果我丈夫去跑步， 他可能會酸痛一兩天。

It is a perfect custom prison.

如果我嘗試走半條街， 我可能就會臥床一個星期。

I know ballet dancers who can't dance,

這是一個完美的訂製監獄。

accountants who can't add,

我認識無法跳舞的芭蕾舞者，

medical students who never became doctors.

無法做加法的會計師，

It doesn't matter what you once were;

無法成為醫生的醫科學生。

you can't do it anymore.

無論你曾經是什麼；

It's been four years,

你都無法再做了。

and I've still never been as well as I was

已經四年了，

the minute before I walked home from my neurologist's office.

我還是無法恢復到

It's estimated that about 15 to 30 million people around the world

我從我的神經醫師的診所 走回家前的那一分鐘的狀態。

have this disease.

[1500 到 3000萬]

In the US, where I'm from, it's about one million people.

根據統計，全世界大約有 一千五百到三千萬人

That makes it roughly twice as common as multiple sclerosis.

罹患這個疾病。

Patients can live for decades with the physical function

在美國，我的家鄉， 大約有一百萬人。

of someone with congestive heart failure.

它大約是多發性硬化症的兩倍。

Twenty-five percent of us are homebound or bedridden,

病人可以活幾十年，

and 75 to 85 percent of us can't even work part-time.

但是身體功能就像 充血性心衰竭患者那樣。

Yet doctors do not treat us

我們有 25% 的人 無法出門或整日臥床，

and science does not study us.

我們有 75％ 到 85％ 的人 甚至不能做兼職的工作。

How could a disease this common and this devastating

然而，醫生不治療我們，

have been forgotten by medicine?

科學不研究我們。

When my doctor diagnosed me with conversion disorder,

為何這麼常見 和如此具毀滅性的疾病，

he was invoking a lineage of ideas about women's bodies

被醫學遺忘了呢？

that are over 2,500 years old.

當我的醫生診斷我的病為轉化症，

The Roman physician Galen thought

他所用的是關於婦女身體的傳統想法，

that hysteria was caused by sexual deprivation

那是 2,500 年以來的想法。

in particularly passionate women.

羅馬時代的加倫醫生認為

The Greeks thought the uterus would literally dry up

歇斯底里症是由於 缺乏性生活所造成的，

and wander around the body in search of moisture,

特別是熱情的婦女。

pressing on internal organs --

希臘人認為子宮會乾掉

yes --

並在身體各處尋找水分，

causing symptoms from extreme emotions

給內臟造成壓力──

to dizziness and paralysis.

是的──

The cure was marriage and motherhood.

引起極端情緒化的症狀，

These ideas went largely unchanged for several millennia until the 1880s,

頭暈和癱瘓。

when neurologists tried to modernize the theory of hysteria.

治癒的方法是結婚和成為母親。

Sigmund Freud developed a theory

這些想法從幾千年前到 1880 年代， 基本上沒有改變，

that the unconscious mind could produce physical symptoms

直到神經學家試圖 將歇斯底里的理論現代化。

when dealing with memories or emotions

弗洛伊德制定了一個理論

too painful for the conscious mind to handle.

那就是潛意識的心 可能產生身體症狀，

It converted these emotions into physical symptoms.

當它在處理記憶或情緒

This meant that men could now get hysteria,

因為太痛苦，清醒的意識無法處理。

but of course women were still the most susceptible.

它將這些情緒轉化成生理的症狀。

When I began investigating the history of my own disease,

這意味著男人也可能 得到歇斯底里症，

I was amazed to find how deep these ideas still run.

但當然婦女還是最容易得的。

In 1934,

當我開始調查我的疾病的歷史，

198 doctors, nurses and staff at the Los Angeles County General Hospital

我很驚訝於發現這些想法 仍然深植於人心。

became seriously ill.

在 1934 年，

They had muscle weakness, stiffness in the neck and back, fevers --

在洛杉磯縣總醫院有 198 位 醫師、護士、和醫療工作人員

all of the same symptoms I had when I first got diagnosed.

生了重病。

Doctors thought it was a new form of polio.

他們有肌肉無力、

Since then, there have been more than 70 outbreaks documented

頸部和背部僵硬、和發燒等症狀──

around the world,

就是我剛被診斷時所有一樣的症狀。

of a strikingly similar post-infectious disease.

那時醫生認為這是 一種新的小兒麻痺症。

All of these outbreaks have tended to disproportionately affect women,

從那時起，世界上有 超過 70 起的發病記錄，

and in time, when doctors failed to find the one cause of the disease,

幾乎和感染後疾病完全相似。

they thought that these outbreaks were mass hysteria.

這些發病都不成比率地 發生在婦女身上。

Why has this idea had such staying power?

過了一段時間， 當醫生找不到單一病因，

I do think it has to do with sexism,

他們認為這些病例 是集體性歇斯底里症。

but I also think that fundamentally, doctors want to help.

為什麼這個想法有如此持續力呢？

They want to know the answer,

我覺得這是和性別歧視有關，

and this category allows doctors to treat what would otherwise be untreatable,

但我也認為，從根本上說， 醫生是想幫助。

to explain illnesses that have no explanation.

他們想知道答案，

The problem is that this can cause real harm.

用這個分類，讓醫生治療 這個否則會被當做無法治療的病，

In the 1950s, a psychiatrist named Eliot Slater

解釋這個無法解釋的病。

studied a cohort of 85 patients who had been diagnosed with hysteria.

問題是這樣可能造成真正的傷害。