What happens when you have a disease doctors can't diagnose | Jennifer Brea

Translator: Joseph Geni Reviewer: Camille Martínez

譯者: Melody Tang

[珍妮佛·布瑞]

Hi.

嗨。

Thank you.

謝謝你們。

[Jennifer Brea is sound-sensitive.

[珍妮佛·布瑞對聲音敏感。

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

現場觀眾被要求以 無聲的手語式鼓掌。]

So, five years ago, this was me.

這是五年前的我。

I was a PhD student at Harvard,

我那時是哈佛大學攻讀博士的學生，

and I loved to travel.

我非常喜歡旅遊。

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

我那時剛與我生命的最愛訂婚。

我那時 28 歲，

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

和我們許多人一樣，在健康時候，

I felt like I was invincible.

我覺得我是無所不能。

Then one day I had a fever of 104.7 degrees.

突然有一天，我發燒到 40.39 度。

I probably should have gone to the doctor,

我那時應該去看醫生，

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

但是我從沒生過什麼病，

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

我知道通常如果你感染了病毒，

you stay home and you make some chicken soup,

你應該在家裡休息，煮一些雞湯，

and in a few days, everything will be fine.

幾天後，你就沒事了。

But this time it wasn't fine.

但是這次不是這樣。

After the fever broke,

我退燒以後，

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

我暈眩了三個星期， 我根本無法出門。

I would walk straight into door frames.

我常常撞到門框。

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

我必須摸著牆壁才能去到浴室。

That spring I got infection after infection,

那個春天我一直重覆感染，

and every time I went to the doctor,

每一次我去看醫生，

he said there was absolutely nothing wrong.

他說我絕對沒有什麼問題。

He had his laboratory tests,

他做了一些檢驗，

which always came back normal.

結果都是正常。

All I had were my symptoms,

我可以形容我的症狀，

which I could describe,

but no one else can see.

但是沒有人看得到。

I know it sounds silly,

我知道聽起來很可笑，

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

但是你必須找到方法來說服你自己，

and so I thought maybe I was just aging.

所以我想或許我只是在老化。

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

或許這就像是在 25 歲的另一頭。

(Laughter)

（笑聲）

Then the neurological symptoms started.

然後神經的症狀開始出現。

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

有時我發現我無法畫圓形的右邊。

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

有時我完全無法說話或者無法動。

I saw every kind of specialist:

我看過每一科的專科醫師：

感染科醫師、 皮膚科醫師、內分泌專家、

infectious disease doctors, dermatologists, endocrinologists,

cardiologists.

心臟科醫師、

I even saw a psychiatrist.

我甚至看了精神科醫師。

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

我的精神科醫師說：

「你是真的有病，

but not with anything psychiatric.

但不是精神疾病， 我希望他們可以找到你的問題。」

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

隔一天，我的神經科醫師 診斷我有轉化症。

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

He told me that everything --

他告訴我所有的問題──

the fevers, the sore throats, the sinus infection,

發燒、喉嚨痛、鼻竇炎、

all of the gastrointestinal, neurological and cardiac symptoms --

所有的胃腸、神經和心臟症狀──

were being caused by some distant emotional trauma

都是因為我不記得的 一些過去的情緒創傷所引起的。

that I could not remember.

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，

從我的神經科醫師的診所回到家裡，

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

我的腿感覺被包在一種奇怪的 像是被電到的痛苦。

I meditated on that pain,

我對著那個痛感冥思，

contemplating how my mind could have possibly generated all this.

思維著我的心 如何有可能產生這一切。

As soon as I walked through the door,

當我走進門時，

I collapsed.

我癱瘓在地上。

My brain and my spinal cord were burning.

我的頭腦和我的脊椎像是在燃燒。

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

我的脖子僵硬到 我的下巴無法碰到我的胸部，

and the slightest sound --

而且很小的聲音──

the rustling of the sheets,

床單的沙沙聲，

my husband walking barefoot in the next room --

我的丈夫在隔壁房間 赤腳走路的聲音──

could cause excruciating pain.

都讓我感到極度的痛苦。

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

接下來的兩年我都臥床。

How could my doctor have gotten it so wrong?

我的醫師怎能錯得如此離譜？

I thought I had a rare disease,

我以為我得到罕見的疾病，

something doctors had never seen.

醫生從沒見過的。

And then I went online

後來我就上網

and found thousands of people all over the world

發現世界各地有數千人

living with the same symptoms,

有著同樣的症狀，

similarly isolated,

同樣的孤立，

similarly disbelieved.

同樣的無法相信。

Some could still work,

有些人還可以工作，

but had to spend their evenings and weekends in bed,

但是晚上和週末就只能臥床，

just so they could show up the next Monday.

他們才有可能在下個星期一去上班。

On the other end of the spectrum,

在另一端，

some were so sick

有些人嚴重到

they had to live in complete darkness,

他們只能在完全黑暗中生活，

unable to tolerate the sound of a human voice

無法容忍任何人的聲音

or the touch of a loved one.

或是被所愛的人觸摸。

I was diagnosed with myalgic encephalomyelitis.

我被診斷為肌痛性腦脊髓炎。

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

你們可能聽過，它也被稱為 「慢性疲勞症候群。」

For decades, that's a name

數十年來這個病名

that's meant that this

意味著圖上這個，

has been the dominant image

一直是這個病的主要形象。

of a disease that can be as serious as this.

但是這個疾病可以是如此嚴重。

The key symptom we all share

我們都有的主要的症狀是

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

每當我們過度使用我們的身體或精神，

we pay and we pay hard.

我們就要付出代價，很大的代價。

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

如果我丈夫去跑步， 他可能會酸痛一兩天。

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

如果我嘗試走半條街， 我可能就會臥床一個星期。

It is a perfect custom prison.

這是一個完美的訂製監獄。

I know ballet dancers who can't dance,

我認識無法跳舞的芭蕾舞者，

accountants who can't add,

無法做加法的會計師，

medical students who never became doctors.

無法成為醫生的醫科學生。

It doesn't matter what you once were;

無論你曾經是什麼；

you can't do it anymore.

你都無法再做了。

It's been four years,

已經四年了，

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

我還是無法恢復到

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

我從我的神經醫師的診所 走回家前的那一分鐘的狀態。

[1500 到 3000萬]

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

根據統計，全世界大約有 一千五百到三千萬人

have this disease.

罹患這個疾病。

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

在美國，我的家鄉， 大約有一百萬人。

That makes it roughly twice as common as multiple sclerosis.

它大約是多發性硬化症的兩倍。

Patients can live for decades with the physical function

病人可以活幾十年，

但是身體功能就像 充血性心衰竭患者那樣。

of someone with congestive heart failure.

Twenty-five percent of us are homebound or bedridden,

我們有 25% 的人 無法出門或整日臥床，

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

我們有 75％ 到 85％ 的人 甚至不能做兼職的工作。

Yet doctors do not treat us

然而，醫生不治療我們，

and science does not study us.

科學不研究我們。

How could a disease this common and this devastating

為何這麼常見 和如此具毀滅性的疾病，

have been forgotten by medicine?

被醫學遺忘了呢？

When my doctor diagnosed me with conversion disorder,

當我的醫生診斷我的病為轉化症，

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

他所用的是關於婦女身體的傳統想法，

that are over 2,500 years old.

那是 2,500 年以來的想法。

The Roman physician Galen thought

羅馬時代的加倫醫生認為

that hysteria was caused by sexual deprivation

歇斯底里症是由於 缺乏性生活所造成的，

in particularly passionate women.

特別是熱情的婦女。

The Greeks thought the uterus would literally dry up

希臘人認為子宮會乾掉

and wander around the body in search of moisture,

並在身體各處尋找水分，

pressing on internal organs --

給內臟造成壓力──

yes --

是的──

causing symptoms from extreme emotions

引起極端情緒化的症狀，

to dizziness and paralysis.

頭暈和癱瘓。

The cure was marriage and motherhood.

治癒的方法是結婚和成為母親。

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

這些想法從幾千年前到 1880 年代， 基本上沒有改變，

when neurologists tried to modernize the theory of hysteria.

直到神經學家試圖 將歇斯底里的理論現代化。

Sigmund Freud developed a theory

弗洛伊德制定了一個理論

that the unconscious mind could produce physical symptoms

那就是潛意識的心 可能產生身體症狀，

當它在處理記憶或情緒

when dealing with memories or emotions

too painful for the conscious mind to handle.

因為太痛苦，清醒的意識無法處理。

It converted these emotions into physical symptoms.

它將這些情緒轉化成生理的症狀。

This meant that men could now get hysteria,

這意味著男人也可能 得到歇斯底里症，

but of course women were still the most susceptible.

但當然婦女還是最容易得的。

When I began investigating the history of my own disease,

當我開始調查我的疾病的歷史，

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

我很驚訝於發現這些想法 仍然深植於人心。

In 1934,

在 1934 年，

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

在洛杉磯縣總醫院有 198 位 醫師、護士、和醫療工作人員

生了重病。

became seriously ill.

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

他們有肌肉無力、

頸部和背部僵硬、和發燒等症狀──

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

就是我剛被診斷時所有一樣的症狀。

Doctors thought it was a new form of polio.

那時醫生認為這是 一種新的小兒麻痺症。

Since then, there have been more than 70 outbreaks documented

從那時起，世界上有 超過 70 起的發病記錄，

around the world,

幾乎和感染後疾病完全相似。

of a strikingly similar post-infectious disease.

All of these outbreaks have tended to disproportionately affect women,

這些發病都不成比率地 發生在婦女身上。

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

過了一段時間， 當醫生找不到單一病因，

they thought that these outbreaks were mass hysteria.

他們認為這些病例 是集體性歇斯底里症。

Why has this idea had such staying power?

為什麼這個想法有如此持續力呢？

I do think it has to do with sexism,

我覺得這是和性別歧視有關，

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

但我也認為，從根本上說， 醫生是想幫助。

They want to know the answer,

他們想知道答案，

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

用這個分類，讓醫生治療 這個否則會被當做無法治療的病，

to explain illnesses that have no explanation.

解釋這個無法解釋的病。

The problem is that this can cause real harm.

問題是這樣可能造成真正的傷害。

In the 1950s, a psychiatrist named Eliot Slater

在 1950 年代，一位叫做 艾利耶特·斯雷特的精神科醫生，

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

研究了一群 85 名 被診斷為歇斯底里症的患者。

Nine years later, 12 of them were dead and 30 had become disabled.

九年後，其中 12 人死亡， 30 人已經變成殘疾。

Many had undiagnosed conditions like multiple sclerosis,

許多人有未確診的情況 如多發性硬化、

epilepsy, brain tumors.

癲癇、腦腫瘤。

In 1980, hysteria was officially renamed "conversion disorder."

在 1980年，歇斯底里症 被正式更名為轉化症。

When my neurologist gave me that diagnosis in 2012,

我的神經科醫師 在 2012 年給我那個診斷，

he was echoing Freud's words verbatim,

他逐字使用弗洛伊德的話，

and even today,

目前仍然如此。

women are 2 to 10 times more likely to receive that diagnosis.

婦女得到這個診斷的比率 是男人的 2 到 10 倍。

The problem with the theory of hysteria or psychogenic illness

問題是歇斯底里症 或心因性疾病的理論

is that it can never be proven.

永遠無法被證明。

It is by definition the absence of evidence,

它的定義就是缺乏證據，

and in the case of ME,

就 ME（肌痛性腦脊髓炎）而言，

psychological explanations have held back biological research.

從心理方面的解釋 抑制了生物學方面的研究。

All around the world, ME is one of the least funded diseases.

世界各地，ME 是一個 最少被資助的疾病。

In the US, we spend each year roughly 2,500 dollars per AIDS patient,

在美國，我們每年花費

約 2,500 美元 在每位愛滋病患者身上，

250 dollars per MS patient

250 美元在多發性硬化患者身上，

and just 5 dollars per year per ME patient.

但是每年只有 5 美元在 ME 患者。

This was not just lightning.

這不只是偶然的。

I was not just unlucky.

我只是很不幸運。

The ignorance surrounding my disease has been a choice,

無知圍繞著我得到的疾病， 而這是選擇的結果，

a choice made by the institutions that were supposed to protect us.

由應該保護我們的機構做出的選擇。

We don't know why ME sometimes runs in families,

我們不知道為什麼 ME 有時有家族性，

why you can get it after almost any infection,

為什麼你幾乎可以在 任何感染後得到它，

from enteroviruses to Epstein-Barr virus to Q fever,

從腸道病毒到 艾伯斯坦-巴爾病毒到 Q 熱，

or why it affects women at two to three times the rate of men.

或為什麼它影響婦女的比率是 是男性的兩到三倍。

This issue is much bigger than just my disease.

這個問題要大得多， 不僅僅是我的病。

When I first got sick,

當我剛生病時，

old friends were reaching out to me.

老朋友都和我聯絡。

I soon found myself a part of a cohort of women in their late 20s

我很快發現自己是一群 將近 30 歲的婦女的一部分，

whose bodies were falling apart.

她們的身體逐漸不行。

What was striking was just how much trouble we were having

最驚人的是我們非常不容易

being taken seriously.

讓人們把我們當一回事。

I learned of one woman with scleroderma,

我聽說一個有硬皮病的婦女，

an autoimmune connective tissue disease,

那是一種自體免疫性結締組織病。

who was told for years that it was all in her head.

多年來，她被告知 這一切都是她自己想的。

Between the time of onset and diagnosis,

在發病和診斷的時間之間，

her esophagus was so thoroughly damaged,

她的食道被徹底地損壞，

she will never be able to eat again.

她永遠不能再吃東西。

Another woman with ovarian cancer,

另一個婦女有卵巢癌，

who for years was told that it was just early menopause.

多年來醫生告訴她 那只是更年期早期症狀。

A friend from college,

我的一位大學同學，

whose brain tumor was misdiagnosed for years as anxiety.

他的腦腫瘤多年來被誤診為焦慮症。

Here's why this worries me:

這就是為什麼這讓我擔心：

since the 1950s, rates of many autoimmune diseases

從 1950 以來， 許多自體免疫疾病的比率

have doubled to tripled.

已增加一倍到兩倍。

Forty-five percent of patients who are eventually diagnosed

百分之四十五的患者 最後都有被診斷為

with a recognized autoimmune disease

某種自體免疫疾病，

are initially told they're hypochondriacs.

他們最初被告知他們是慮病症。

Like the hysteria of old, this has everything to do with gender

就像以前的歇斯底里症， 他們認為這些病都與性別有關，

and with whose stories we believe.

我們相信了這些說法。

Seventy-five percent of autoimmune disease patients are women,

百分之七十五的 自體免疫疾病患者是婦女，

and in some diseases, it's as high as 90 percent.

在有些疾病，它高達 90％。

Even though these diseases disproportionately affect women,

即使這些疾病 很不成比率地影響婦女，

they are not women's diseases.

它們不是婦女的疾病。

ME affects children and ME affects millions of men.

兒童罹患 ME， 數百萬的男人罹患 ME。

And as one patient told me,

有一個病人告訴我，

we get it coming and going --

我們不知所以的得到這個診斷──

if you're a woman, you're told you're exaggerating your symptoms,

如果你是一個婦女， 你會被告知你誇大你的症狀，

but if you're a guy, you're told to be strong, to buck up.

但如果你是一個男性， 你會被告知你要堅強，要加強。

And men may even have a more difficult time getting diagnosed.

男人甚至更難被正確地診斷。

My brain is not what it used to be.

我的大腦大不如前。

Here's the good part:

好消息是：

despite everything, I still have hope.

儘管發生了這一切，我仍抱著希望。

So many diseases were once thought of as psychological

許多疾病曾經被認為是心理的，

until science uncovered their biological mechanisms.

直到科學發現其生物學機制。

Patients with epilepsy could be forcibly institutionalized

癲癇患者曾被強制住在機構裡，

until the EEG was able to measure abnormal electrical activity in the brain.

直到腦波圖能夠測量 大腦中的異常放電狀況。

Multiple sclerosis could be misdiagnosed as hysterical paralysis

多發性硬化可能被誤診 為歇斯底里性麻痺，

until the CAT scan and the MRI discovered brain lesions.

直到 CAT 掃描和 MRI 發現腦損傷。

And recently, we used to think

最近，我們過去以為

that stomach ulcers were just caused by stress,

胃潰瘍是因為壓力造成的，

until we discovered that H. pylori was the culprit.

直到我們發現 幽門螺桿菌是罪魁禍首。

ME has never benefited from the kind of science

ME 未曾從像其他疾病 得到那種科學收益，

that other diseases have had,

but that's starting to change.

但那開始在改變。

In Germany, scientists are starting to find evidence of autoimmunity,

在德國，科學家開始尋找 自體免疫的證據，

and in Japan, of brain inflammation.

在日本，他們在尋找腦炎症的。

In the US, scientists at Stanford are finding abnormalities

在美國，史丹佛大學的科學家發現

16 個標準差以外的能量代謝異常。

in energy metabolism

that are 16 standard deviations away from normal.

And in Norway, researchers are running a phase-3 clinical trial

在挪威，研究人員正在進行一種 癌症藥物的第 3 期臨床試驗，

on a cancer drug that in some patients causes complete remission.

這種藥能完全緩解某些病人的癌症。

What also gives me hope

也讓我抱著希望的是

is the resilience of patients.

患者的韌性。

Online we came together,

透過網路我們在一起，

and we shared our stories.

我們彼此分享自己的故事。

We devoured what research there was.

我們研讀任何有關的研究。

We experimented on ourselves.

我們在自己身上做實驗。

We became our own scientists and our own doctors

我們成為我們自己的科學家 和我們自己的醫生，

because we had to be.

因為我們必須如此。

And slowly I added five percent here, five percent there,

慢慢地，我在這裡加百分之五， 那裡加百分之五，

until eventually, on a good day,

直到最後，在一個美好的一天，

I was able to leave my home.

我能夠離開我的家。

I still had to make ridiculous choices:

我仍然必須做很荒謬的選擇；

Will I sit in the garden for 15 minutes, or will I wash my hair today?

我是要在花園坐 15 分鐘， 還是我今天要洗頭？

But it gave me hope that I could be treated.

但是它給予我可以被治好的希望。

I had a sick body; that was all.

我有一個有病的身體；僅此而已。

And with the right kind of help, maybe one day I could get better.

若是有了正確的幫助， 也許有一天我會更好。

I came together with patients around the world,

我與世界各地的病患在一起，

and we started to fight.

我們開始戰鬥。

We have filled the void with something wonderful,

我們用美妙的東西填補了空白，

but it is not enough.

但還是不夠。

I still don't know if I will ever be able to run again,

我仍然不知道我是否 有可能再度能跑，

or walk at any distance,

或者走遠一點，

or do any of those kinetic things that I now only get to do in my dreams.

或做現在只能在我的夢裡做的運動。

But I am so grateful for how far I have come.

但是我對我已經有的進步很感恩。

Progress is slow,

進步很慢，

and it is up

有時上，

and it is down,

有時下，

but I am getting a little better each day.

但是我每天都有好一點。

I remember what it was like when I was stuck in that bedroom,

我記得當我被困在臥室裡的樣子，

when it had been months since I had seen the sun.

那時我幾個月後才看到了太陽。

I thought that I would die there.

我以為我會死在那裡。

But here I am today,

但是我今天在這裡，

with you,

和你們一起，

and that is a miracle.

這是一個奇蹟。

I don't know what would have happened had I not been one of the lucky ones,

我不知道如果我不是幸運的人之一，

had I gotten sick before the internet,

如果我在網路時代前就生病，

had I not found my community.

如果我沒有找到 我們的群組，我會如何。

I probably would have already taken my own life,

我很可能已經自殺了，

as so many others have done.

如同許多其他人一樣。

How many lives could we have saved, decades ago,

數十年前，如果我們問對了問題

if we had asked the right questions?

我們本來可以救多少人的生命？

How many lives could we save today

我們今天可以救多少生命

if we decide to make a real start?

如果我們決定真正的開始？

Even once the true cause of my disease is discovered,

甚至當我的疾病的真正原因被發現，

if we don't change our institutions and our culture,

如果我們不改變 我們的機構和我們的文化，

we will do this again to another disease.

我們仍然會如此對待另一個疾病。

Living with this illness has taught me

與這個病共存教我，

that science and medicine are profoundly human endeavors.

科學和醫學是很深刻的人類努力。

Doctors, scientists and policy makers

醫生，科學家和決策者

are not immune to the same biases

不能免疫於

影響我們所有人的同樣的偏見。

that affect all of us.

We need to think in more nuanced ways about women's health.

我們需要對婦女的健康 做更細微的方式思考。

Our immune systems are just as much a battleground for equality

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。

as the rest of our bodies.

We need to listen to patients' stories,

我們必須傾聽病人的故事，

and we need to be willing to say, "I don't know."

我們也必須願意說，「我不知道。」

"I don't know" is a beautiful thing.

「我不知道」是一件美麗的事。

"I don't know" is where discovery starts.

「我不知道」是發現的起點。

And if we can do that,

如果我們能夠如此做，

if we can approach the great vastness of all that we do not know,

如果我們能夠接近所有我們 不知道的巨大空洞，

and then, rather than fear uncertainty,

那時，代替害怕的不確定性，

maybe we can greet it with a sense of wonder.

或許我們可用一種 奇蹟的感覺去迎接它。

Thank you.

謝謝大家！

Thank you.

謝謝大家！