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

Translator: Joseph Geni Reviewer: Camille Martínez

翻译人员: Jingdan Niu 校对人员: Yanyan Hong

Hi.

嗨！

Thank you.

谢谢你们。

[Jennifer Brea is sound-sensitive.

【詹妮弗·布雷亚对声音非常敏感

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

因此要求现场的观众以手语的方式 安静地鼓掌。】

So, five years ago, this was me.

这是五年前的我，

I was a PhD student at Harvard,

我是哈佛大学的一名博士生，

and I loved to travel.

并且热爱旅行，

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

我刚与我人生的挚爱订婚，

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

我28岁，和大部分人 一样身体非常健康，

I felt like I was invincible.

我觉得自己无所不能。

Then one day I had a fever of 104.7 degrees.

有一天我高烧40.3度，

I probably should have gone to the doctor,

可能我应该去看个医生，

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

但是当时我认为我 这辈子不可能真的生病，

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

而且我知道，通常来说 如果你被病毒感染，

you stay home and you make some chicken soup,

在家躺着休息，喝点鸡汤，

and in a few days, everything will be fine.

过几天就什么事都没有了。

But this time it wasn't fine.

但是这一次它没有好，

After the fever broke,

高烧之后，

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

整整三个星期我头昏眼花到无法出门，

I would walk straight into door frames.

我直走都能撞到门框上，

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

我不得不扶着墙才能去洗手间。

That spring I got infection after infection,

那个春天 我连续被病毒感染，

and every time I went to the doctor,

但是每次我去医院，

he said there was absolutely nothing wrong.

医生都确定我的身体完全没什么问题。

He had his laboratory tests,

他实验室的检测结果，

which always came back normal.

永远都显示正常，

All I had were my symptoms,

所有的都是，

which I could describe,

只有我能描述出来，

but no one else can see.

其他人都无法察觉的症状。

I know it sounds silly,

我知道这听起来很蠢，

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

但是你不得不找到一个方式来 解释发生在自己身上的一切，

and so I thought maybe I was just aging.

所以我想我大概只是在衰老，

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

或许这就是二十五岁的另外一面。

(Laughter)

（笑声）

Then the neurological symptoms started.

接下来神经方面的症状开始出现，

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

我发现有时候我无法画出圆的右半边，

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

有时候我发现 我完全不能说话或者移动，

I saw every kind of specialist:

我见过各种专家，

infectious disease doctors, dermatologists, endocrinologists,

感染病医生、皮肤病医生，

cardiologists.

内分泌医生、心脏病医生，

I even saw a psychiatrist.

我甚至去看过精神病医生。

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

我的精神病医生说 “很明显你现在在生病，

but not with anything psychiatric.

但这和精神疾病没有任何关系，

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

我希望其他医生可以找到你的病因。”

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

第二天 我的神经病学医生 诊断我得了一种转化性疾患，

He told me that everything --

他告诉我，所有症状--

the fevers, the sore throats, the sinus infection,

发烧、嗓子疼、鼻窦炎，

all of the gastrointestinal, neurological and cardiac symptoms --

所有的胃肠疾病 神经和心脏方面的症状--

were being caused by some distant emotional trauma

都是由某些持续性精神创伤引起的，

that I could not remember.

而这些创伤我都不记得了，

The symptoms were real, he said,

他说，这些症状是真实存在的。

but they had no biological cause.

但是却没有任何生物学病因，

I was training to be a social scientist.

我被培养成为一名社会科学家，

I had studied statistics, probability theory,

我学习过统计学、概念理论，

mathematical modeling, experimental design.

数学建模和实验设计，

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

我觉得我没有办法 反驳这位神经学医生的诊断，

It didn't feel true,

这感觉很不真实，

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

但我的专业知识告诉我 真相往往与直觉相悖，

so easily obscured by what we want to believe.

所以很容易被我们的主观想法所掩盖，

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

所以我不得不考虑 他的诊断可能是对的，

That day, I ran a small experiment.

那天，我进行了一个小实验，

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

我从距离两英里的 神经学家的办公室走回家，

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

我的腿被一种奇怪的 像电流一样的疼痛缠住，

I meditated on that pain,

我认真思考了那种疼痛，

contemplating how my mind could have possibly generated all this.

思考我的意识如何能带来这一切，

As soon as I walked through the door,

在我走过家门的一瞬间，

I collapsed.

我倒在地上。

My brain and my spinal cord were burning.

我的大脑和脊髓灼烧般的疼痛，

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

我的脖子僵硬到我的胸 甚至无法碰到下巴，

and the slightest sound --

最轻微的声音，

the rustling of the sheets,

纸张发出的沙沙声。

my husband walking barefoot in the next room --

我丈夫赤着脚在隔壁房间走路的声音，

could cause excruciating pain.

都能引发令人煎熬的痛苦，

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

而接下来的两年，我大部分的 时间都是在床上度过的，

How could my doctor have gotten it so wrong?

我的医生怎么会弄错呢？

I thought I had a rare disease,

我想我是得了一种罕见的病，

something doctors had never seen.

有些东西医生都没有见过，

And then I went online

于是我上网寻找，

and found thousands of people all over the world

发现无数的人，

living with the same symptoms,

和我有相同的症状，

similarly isolated,

一样的孤独，

similarly disbelieved.

一样的怀疑，

Some could still work,

他们中一些人仍然可以工作，

but had to spend their evenings and weekends in bed,

但是不得不整个晚上 和周末躺在床上休息，

just so they could show up the next Monday.

这样在下一个星期一 他们还可以继续工作，

On the other end of the spectrum,

而这个圈子的另一端。

some were so sick

有一些人生病太重，

they had to live in complete darkness,

一部分人已经太过虚弱所以他们 不得不生活在彻底的黑暗中，

unable to tolerate the sound of a human voice

无法忍受任何声音，

or the touch of a loved one.

或者是来自爱人的触碰，

I was diagnosed with myalgic encephalomyelitis.

我被确诊为肌痛性脑脊髓炎。

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

你可能也听说过它被称为 “慢性疲劳综合症”，

For decades, that's a name

几十年来，这种病的，

that's meant that this

主要形象正如，

has been the dominant image

这张图片所展示的，

of a disease that can be as serious as this.

也是这种病所能达到的严重程度，

The key symptom we all share

我们所共有的关键症状就是，

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

每当我们消耗自己—体力，精力—

we pay and we pay hard.

我们越来越辛苦，

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

如果我丈夫出去跑步 他可能会全身酸痛几天，

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

如果我试图走半个街区 我也许就要整整一周卧床不起，

It is a perfect custom prison.

这是个完美的定制监狱，

I know ballet dancers who can't dance,

我知道不能跳舞的芭蕾演员，

accountants who can't add,

不能计算的会计师，

medical students who never became doctors.

永远无法成为医生的医学生，

It doesn't matter what you once were;

这和你曾经做什么毫无关系。

you can't do it anymore.

你再也不能继续做了。

It's been four years,

四年以来，

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

我仍然无法恢复到，

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

我从我的神经学医生办公室 走回家之前的那一刻。

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

据估计，全世界 有150万到300万人，

have this disease.

患有这种疾病，

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

在我所在的美国，大约有100万人，

That makes it roughly twice as common as multiple sclerosis.

普遍性是多发性硬化症人数的两倍，

Patients can live for decades with the physical function

只要器官保持运作，

of someone with congestive heart failure.

充血性心肌衰竭病人可以生活几十年，

Twenty-five percent of us are homebound or bedridden,

而我们当中的25%的人是 生病在家或者卧床不起，

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

75%到85%连兼职工作 都没有办法完成，

Yet doctors do not treat us

但是医生并不治疗这种疾病。

and science does not study us.

也没有学科研究这个病，

How could a disease this common and this devastating

一个如此常见且有杀伤力的疾病，

have been forgotten by medicine?

怎么能被医学给遗忘了？

When my doctor diagnosed me with conversion disorder,

当我的医生诊断我患了转化性疾患时，

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

他引用了一系列有2500年历史的，

that are over 2,500 years old.

关于女性身体的观点，

The Roman physician Galen thought

罗马医学家迦林认为，

that hysteria was caused by sexual deprivation

癔病是有由性生活不足造成的，

in particularly passionate women.

尤其是那些性欲旺盛的女性，

The Greeks thought the uterus would literally dry up

希腊人认为子宫确实会干涸，

and wander around the body in search of moisture,

然后在身体中四处游走寻找水分，

pressing on internal organs --

压迫着身体内的器官。

yes --

是的，

causing symptoms from extreme emotions

引起的症状从极端的情绪，

to dizziness and paralysis.

到头晕、麻痹，

The cure was marriage and motherhood.

而治疗方法就是结婚和生子，

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

这种想法在几千年里都没有大的变化 直到十九世纪八十年代，

when neurologists tried to modernize the theory of hysteria.

神经学家们试图用现代化的方法 来解释癔病的疾病原理，

Sigmund Freud developed a theory

奥地利精神分析学家西格蒙德·弗洛伊德 发展出一个学说，

that the unconscious mind could produce physical symptoms

认为当无意识心理在 有意识心理因为

when dealing with memories or emotions

过于痛苦而无法处理 记忆或者情感时，

too painful for the conscious mind to handle.

会产生一种物理症状。

It converted these emotions into physical symptoms.

它将这些情感转化成物理症状，

This meant that men could now get hysteria,

这意味着男性也可能会患癔病

but of course women were still the most susceptible.

但是女性仍然是最易受到感染的，

When I began investigating the history of my own disease,

当我开始对我这个病的 历史进行调查研究时，

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

我非常吃惊的发现这些 观点是多么的深入人心。

In 1934,

1934年，

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

洛杉矶县综合医院的198名 医生、护士和工作人员，

became seriously ill.

病得非常严重，

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

他们开始肌肉酸痛、颈部及 后背开始变得僵硬以及高烧

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

和我最初诊断的所有症状一模一样，

Doctors thought it was a new form of polio.

医生们认为这是 小儿麻痹症的最新形式。

Since then, there have been more than 70 outbreaks documented

从那之后，全世界有70多次关于

around the world,

这个有着惊人相似的感染性疾病，

of a strikingly similar post-infectious disease.

爆发的记载。

All of these outbreaks have tended to disproportionately affect women,

所有的疾病爆发都不同 比例的倾向于影响女性，

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

而同时，当医生们无法找到 任何这个疾病的起因，

they thought that these outbreaks were mass hysteria.

他们认为这些爆发属于大规模癔病，

Why has this idea had such staying power?

为什么这个观点一直保持着 这么大的影响力？

I do think it has to do with sexism,

我认为这是针对女性的偏见，

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

但是我同时也认为从根本上来说 医生们想提供帮助。

They want to know the answer,

他们想知道答案，

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

这个分类使医生们可以去治疗 根本无法治愈的疾病，

to explain illnesses that have no explanation.

给这个无解的疾病一个解释，

The problem is that this can cause real harm.

这里的问题就是这样做 会造成真实的伤害，

In the 1950s, a psychiatrist named Eliot Slater

在20世纪50年代，一个名为 艾略特·斯莱特的精神病学家，

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

研究了一个85名被诊断 为癔病的患者群体，

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

9年之后，他们中的 12人死亡，30人残疾。

Many had undiagnosed conditions like multiple sclerosis,

许多人得了尚未确诊的情况 比如多发性硬化、

epilepsy, brain tumors.

癫痫以及脑肿瘤。

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

在1980年，癔病被正式重新 命名为 “（神经）转化性疾患”。

When my neurologist gave me that diagnosis in 2012,

当我的神经科医生在 2012年将我确诊为这个病时，

he was echoing Freud's words verbatim,

他逐字地重复佛洛依德的话，

and even today,

甚至到了今天，

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

女性确诊这个疾病的概率 仍然是男性的2到10倍，

The problem with the theory of hysteria or psychogenic illness

癔病或者精神性疾病理论的问题，

is that it can never be proven.

在于他们从来没有被证实过，

It is by definition the absence of evidence,

很明显的它缺少依据，

and in the case of ME,

至于慢性疲劳综合症，

psychological explanations have held back biological research.

心理学解释阻止了生物研究的继续。

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

在全世界范围内，慢性疲劳综合症 是被投入最少的疾病之一，

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

在美国，我们每年为每名艾滋病 患者投入大约2500美元，

250 dollars per MS patient

为每名多发性硬化症患者 投入250美元，

and just 5 dollars per year per ME patient.

而对于慢性疲劳综合症患者 这个数字只有5美元，

This was not just lightning.

这不仅仅是减少，

I was not just unlucky.

我不仅仅是不走运，

The ignorance surrounding my disease has been a choice,

接受这个疾病一直 被无视已经是一个选择。

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

这个选择是由本该保护 我们的那些研究机构做出的，

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

我们不知道为什么慢性 疲劳综合症会在家族遗传，

why you can get it after almost any infection,

为什么任何一个传染病，

from enteroviruses to Epstein-Barr virus to Q fever,

从肠道病毒到疱疹病毒到Q热 感染之后都会得慢性疲劳综合症？

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

或者，为什么女性得这个病的 概率会是男性的两到三倍？

This issue is much bigger than just my disease.

这些问题比我得这个病本身更严重，

When I first got sick,

当我第一次生病的时候，

old friends were reaching out to me.

老朋友们都来联系我，

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

很快我发现我自己成为了一群 在接近30岁的时候，

whose bodies were falling apart.

身体就开始衰弱的女性中的一员，

What was striking was just how much trouble we were having

令人感到打击的是，

being taken seriously.

被重视的仅仅只是 我们遇到了多少困难。

I learned of one woman with scleroderma,

我认识了一位得了硬皮病的女性，

an autoimmune connective tissue disease,

这是一种自身免疫性结缔组织疾病，

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

在几年的时间里她被 告知这个病在她的脑部，

Between the time of onset and diagnosis,

在着手治疗和诊断的这段时间里，

her esophagus was so thoroughly damaged,

她的食道被完全损坏，

she will never be able to eat again.

至今仍然无法进食，

Another woman with ovarian cancer,

另外一位得了卵巢癌的女性，

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

在很长时间里被医生 告知只是早期更年期，

A friend from college,

另外一位大学里的朋友，

whose brain tumor was misdiagnosed for years as anxiety.

得了脑瘤却被错误的诊断成焦虑症，

Here's why this worries me:

这就是为什么让我感觉忧虑的原因：

since the 1950s, rates of many autoimmune diseases

从20世纪50年代起 自身免疫系统的得病率，

have doubled to tripled.

是以前的两倍到三倍，

Forty-five percent of patients who are eventually diagnosed

45%最终被诊断为

with a recognized autoimmune disease

已知的自身免疫系统疾病的患者，

are initially told they're hypochondriacs.

最初只是被告知得了忧郁症。

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

就像古时的癔病，

and with whose stories we believe.

这与性别和我们 所相信的故事都有关系，

Seventy-five percent of autoimmune disease patients are women,

75%自身免疫系统疾病 的患者都是女性，

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

并且在某些疾病中 这个比例高达90%，

Even though these diseases disproportionately affect women,

尽管这些疾病不同比例的影响着女性，

they are not women's diseases.

它们并非女性疾病，

ME affects children and ME affects millions of men.

慢性疲劳综合症也影响着儿童和男性，

And as one patient told me,

就像一位患者告诉我的，

we get it coming and going --

这个病是来来去去变化不定的--

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

如果你是女性，他们说你夸大了症状，

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

但是如果你是男性，他们 鼓励你要强壮要振作起来，

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

尽管男性会更难以确诊，

My brain is not what it used to be.

我的大脑已经不是曾经那样了。

Here's the good part:

但是依旧有好消息：

despite everything, I still have hope.

尽管如此，我依然有希望，

So many diseases were once thought of as psychological

有太多的疾病在科学揭示 他们的生物原理之前，

until science uncovered their biological mechanisms.

都被认为是心理上的

Patients with epilepsy could be forcibly institutionalized

癫痫患者会被强制收容治疗，

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

直到脑电图能够测量 脑部不正常的电流活动，

Multiple sclerosis could be misdiagnosed as hysterical paralysis

多发性硬化症会被错误的 诊断为癔病性麻痹，

until the CAT scan and the MRI discovered brain lesions.

直到造影扫描和核磁 共振发现了脑损伤，

And recently, we used to think

而最近，我们曾经所认为的

that stomach ulcers were just caused by stress,

胃溃疡是因为压力过大，

until we discovered that H. pylori was the culprit.

直到我们发现幽门 螺杆菌才是罪魁祸首，

ME has never benefited from the kind of science

慢性疲劳综合症却从来得益于

that other diseases have had,

这种其它疾病可以获得的科学治疗。

but that's starting to change.

但是这一切开始在转变，

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

在德国，科学家开始 发现自身免疫疾病的依据，

and in Japan, of brain inflammation.

在日本，则发现了脑炎症的依据，

In the US, scientists at Stanford are finding abnormalities

在美国，斯坦福的科学家

in energy metabolism

正在研究能量代谢的异常情况，

that are 16 standard deviations away from normal.

也就是他们发现了与 正常值相差16的标准偏差，

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

在挪威，研究者正在进行一个 抗癌药物第三阶段的临床试验，

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

这个药物可以使一部分 患者得到完全的好转，

What also gives me hope

同样给了我希望的

is the resilience of patients.

是患者的恢复力，

Online we came together,

在网上，我们走到了一起，

and we shared our stories.

我们开始分享各自的故事，

We devoured what research there was.

我们如饥似渴的了解科研的进度，

We experimented on ourselves.

我们在自己身上做实验，

We became our own scientists and our own doctors

因为不得已，

because we had to be.

我们成为了自己的科学家和医生。

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

然后慢慢地，我从这里得到了5%的 进展，从那里得到5%的进展，

until eventually, on a good day,

直到最后，在最好的时候，

I was able to leave my home.

我可以走出我的家，

I still had to make ridiculous choices:

我依然需要做一个很愚蠢的选择：

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

今天我是将在花园里待15分钟 还是去洗个头发？

But it gave me hope that I could be treated.

但是这给了我被治愈的希望。

I had a sick body; that was all.

我身患疾病，而这就是全部，

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

如果得到了正确的治疗 某一天我就可以康复。

I came together with patients around the world,

我和全世界的患者联合起来，

and we started to fight.

我们开始战斗，

We have filled the void with something wonderful,

我们用一些美好的东西 把这片空白填满，

but it is not enough.

但这远远不够，

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

我仍然不知道我是否还能再一次奔跑，

or walk at any distance,

或者走上一段距离，

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

或者做任何现在只能 在我梦里出现的运动，

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

但是我对我现在所能走到的 这一步表示感恩，

Progress is slow,

进展虽然很慢，

and it is up

而且有时出现，

and it is down,

有时不见，

but I am getting a little better each day.

但是我每天都在变得好一点点，

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

我记得当我在被困在卧室里的样子，

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

我记得我再一次见到阳光 已经过了好几个月，

I thought that I would die there.

我想那时我也许是要死了，

But here I am today,

但是今天我在这里，

with you,

和你们一起。

and that is a miracle.

这已经是个奇迹，

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

我不知道如果我 不是这其中一个幸运儿。

had I gotten sick before the internet,

如果我在有互联网之前生病，

had I not found my community.

如果我没有找到属于 我的团体，将会发生什么，

I probably would have already taken my own life,

我或许已经自杀，

as so many others have done.

就像很多人做的那样，

How many lives could we have saved, decades ago,

如果在数十年之前我们可以问出，

正确的问题有多少生命可以得救？

if we had asked the right questions?

How many lives could we save today

如果我们有了一个真正的开始，

if we decide to make a real start?

现在又有多少生命可以得救？

Even once the true cause of my disease is discovered,

即使慢性疲劳综合症的 真正原因被发现，

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

而我们的研究机构和 我们的文化没有改变，

we will do this again to another disease.

那么下一次我们还是会用同样的 方式去对待另外一种疾病，

Living with this illness has taught me

与这个疾病共生教会我，

that science and medicine are profoundly human endeavors.

科学和药物是人类深刻地努力，

Doctors, scientists and policy makers

医生、科学家和决策者

are not immune to the same biases

并不能对影响我们的，

所有偏见免疫。

that affect all of us.

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

我们需要用一个更细致入微的 方式来思考女性健康，

Our immune systems are just as much a battleground for equality

我们的免疫系统就和我们 身体的其它部分一样，

他们是平等的战场，

as the rest of our bodies.

We need to listen to patients' stories,

我们需要去聆听患者们的故事，

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

并且我们需要乐意说“我不知道”，

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

“我不知道”这句话 是一个美妙的事情，

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

“我不知道”就是一个探索的开始，

And if we can do that,

如果我们可以做到这一点，

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

如果我们可以去探索我们 所有不知道的广袤领域，

and then, rather than fear uncertainty,

而不是去畏惧未知，

maybe we can greet it with a sense of wonder.

也许我们就可以用惊叹 向那未知的领域致敬。

Thank you.

谢谢大家。

谢谢大家。

Thank you.