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

Translator: Joseph Geni Reviewer: Camille Martínez

Translator: Winnie Ling Reviewer: Alan Watson

Hi.

大家好

Thank you.

多謝

[Jennifer Brea is sound-sensitive.

[ Jennifer Brea 對聲音敏感

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

現場觀眾用美式手語歡迎 ]

So, five years ago, this was me.

呢個係五年前嘅我

I was a PhD student at Harvard,

當時我係哈佛嘅博士生

and I loved to travel.

鍾意旅行

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

啱啱同我生命中最愛嘅人訂婚

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

嗰陣我28歲，同大部份人一樣

I felt like I was invincible.

覺得自己好健康、百毒不侵

Then one day I had a fever of 104.7 degrees.

有一日，我發燒燒到華氏 104.7 度

I probably should have gone to the doctor,

其實我應該要去睇醫生

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

不過，我一生中未患過病

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

而且我知，一般如果你受病毒感染

you stay home and you make some chicken soup,

你留喺屋企，煲啲雞湯

and in a few days, everything will be fine.

幾日之內就會好返

But this time it wasn't fine.

但係，呢次無好返

After the fever broke,

發燒之後

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

三個星期都頭暈，無辦法出門口

I would walk straight into door frames.

我行路會撞落門框度

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

我要扶住墻先可以行去浴室

That spring I got infection after infection,

嗰年春天，我病完又病

and every time I went to the doctor,

每一次我去睇醫生

he said there was absolutely nothing wrong.

佢都話絕對無問題

He had his laboratory tests,

佢手上嘅化驗報告

which always came back normal.

都話我好正常

All I had were my symptoms,

我所有嘅癥狀

which I could describe,

我都可以形容

but no one else can see.

但無人睇到

I know it sounds silly,

我知聽起嚟好傻

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

但係你點都會搵個原因畀自己

and so I thought maybe I was just aging.

我以為可能係老化

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

或者呢個就係年過 25 嘅情況

(Laughter)

（笑聲）

Then the neurological symptoms started.

跟住，神經癥狀開始出現

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

有時，我發現我畫唔到圓形嘅右邊

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

有時我會講唔到嘢，甚至郁唔到

I saw every kind of specialist:

我睇過所有專科

infectious disease doctors, dermatologists, endocrinologists,

傳染病科、皮膚科、內分泌科、心臟科

cardiologists.

I even saw a psychiatrist.

我甚至睇埋精神科

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

精神科醫生話︰「你好明顯病咗，

but not with anything psychiatric.

但同精神科無關。

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

我希望其他醫生搵到係咩事。」

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

第二日，神經科醫生診斷出 我患咗轉化症

He told me that everything --

佢話所有癥狀——

the fevers, the sore throats, the sinus infection,

發燒、喉嚨痛、鼻竇炎

all of the gastrointestinal, neurological and cardiac symptoms --

所有腸胃、神經同心臟癥狀——

were being caused by some distant emotional trauma

都因為某啲我唔記得嘅情緒創傷引起

that I could not remember.

The symptoms were real, he said,

佢話啲病癥都係真嘅

but they had no biological cause.

但都冇生理原因解釋

I was training to be a social scientist.

我曾經受訓做社會科學家

I had studied statistics, probability theory,

我讀過統計學、概率論

mathematical modeling, experimental design.

數學模型、實驗設計

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

雖然我唔可以否定神經科醫生嘅診斷

It didn't feel true,

但我又覺得醫生嘅診斷唔係真嘅

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

但知識話畀我聽事實多數違反直覺

so easily obscured by what we want to believe.

事實好容易被自己想相信嘅嘢矇蔽

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

所以我諗可能佢係啱嘅

That day, I ran a small experiment.

嗰日，我做咗個小實驗

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

我喺診所行咗兩英里返屋企

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

我對腳有種好奇怪、好似觸電嘅痛

I meditated on that pain,

沿途，我仔細咁諗

contemplating how my mind could have possibly generated all this.

我嘅心理點樣令呢一切發生

As soon as I walked through the door,

當我行入門口

I collapsed.

我跌低咗

My brain and my spinal cord were burning.

個腦同脊髓好似火燒咁

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

條頸僵硬到下巴掂唔到胸口

and the slightest sound --

同埋，無論幾細嘅聲都好——

the rustling of the sheets,

就算床單摩擦

my husband walking barefoot in the next room --

老公赤腳喺隔離房行嘅聲音——

could cause excruciating pain.

都會令我有難以忍受嘅痛楚

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

跟住兩年嘅大部分時間 我都喺床上度過

How could my doctor have gotten it so wrong?

點解我嘅醫生會錯得咁離譜？

I thought I had a rare disease,

我覺得我患咗一種罕見嘅病

something doctors had never seen.

連醫生都未見過嘅病

And then I went online

之後我上網

and found thousands of people all over the world

搵到嚟自世界各地成千上萬嘅人

living with the same symptoms,

原來都有同樣嘅癥狀

similarly isolated,

同樣需要隔離

similarly disbelieved.

同樣覺得難以置信

Some could still work,

有啲人仲可以工作

but had to spend their evenings and weekends in bed,

但夜晚同周未都一定要留喺床上

just so they could show up the next Monday.

只係為咗下星期一可以返工

On the other end of the spectrum,

至於其他人

some were so sick

有啲病得好嚴重

they had to live in complete darkness,

要喺完全黑暗嘅環境下生活

unable to tolerate the sound of a human voice

無辦法忍受人聲

or the touch of a loved one.

或者伴侶嘅觸摸

I was diagnosed with myalgic encephalomyelitis.

我被診斷患上肌痛性腦脊髓炎

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

即係你可能聽過嘅「慢性疲勞症候群」

For decades, that's a name

幾十年嚟

that's meant that this

呢個名就代表住 一種可以嚴重成咁嘅疾病

has been the dominant image

of a disease that can be as serious as this.

The key symptom we all share

一樣我哋都有共同病徵就係

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

當我哋耗盡全力，無論體力上定精神上

we pay and we pay hard.

就要付出代價，好大代價

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

就好似如果我老公去跑步

佢可能會喉嚨痛幾日

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

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

It is a perfect custom prison.

呢個可以話係完美嘅軟禁

I know ballet dancers who can't dance,

我識得跳唔到舞嘅芭蕾舞家

accountants who can't add,

計唔到數嘅會計師

medical students who never became doctors.

永遠都做唔成醫生嘅醫科生

It doesn't matter what you once were;

你曾經係咩唔重要

you can't do it anymore.

因為你都無辦法繼續做

It's been four years,

過咗四年

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

我仲未恢復到當日 由診所行返屋企前咁健康

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

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

據估計，全球大概有 1,500 到 3,000 萬人患咗呢種病

have this disease.

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

喺我嘅國家，美國 就有一百萬人患咗呢種病

That makes it roughly twice as common as multiple sclerosis.

大約係患上多發性硬化嘅兩倍

Patients can live for decades with the physical function

病人可以生存到幾十年

但佢哋嘅活動能力就好似

of someone with congestive heart failure.

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

Twenty-five percent of us are homebound or bedridden,

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

75% 至 85% 甚至唔可以做兼職

Yet doctors do not treat us

事實上，醫生唔會醫我哋

and science does not study us.

科學家唔會研究我哋

How could a disease this common and this devastating

點解呢種咁普遍同埋慘嘅病 會被醫學界遺忘？

have been forgotten by medicine?

When my doctor diagnosed me with conversion disorder,

當我嘅醫生診斷出我患咗轉化症

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

佢指向緊

一啲有 2,500 年歷史 有關女性身體嘅諗法

that are over 2,500 years old.

The Roman physician Galen thought

古羅馬醫生蓋倫認為

that hysteria was caused by sexual deprivation

歇斯底里症嘅成因係性渴求 尤其係熱情嘅女性

in particularly passionate women.

The Greeks thought the uterus would literally dry up

蓋倫認為子宮會變乾

and wander around the body in search of moisture,

並且喺身體遊走搵水份

pressing on internal organs --

擠壓內臟——

yes --

無錯——

causing symptoms from extreme emotions

引致極端情緒

to dizziness and paralysis.

甚至頭暈同癱瘓

The cure was marriage and motherhood.

當時嘅療法係結婚同生仔

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

呢種諗法維持到 1880 年代

when neurologists tried to modernize the theory of hysteria.

當時嘅神經病學家 嘗試更新歇斯底里症嘅理論

Sigmund Freud developed a theory

佛洛伊德發展咗一個理論

that the unconscious mind could produce physical symptoms

佢話︰當明意識處理唔到 一啲太痛苦嘅記憶或者情緒

when dealing with memories or emotions

too painful for the conscious mind to handle.

潛意識就會產生生理徵狀

It converted these emotions into physical symptoms.

將情緒轉化為生理徵狀

This meant that men could now get hysteria,

即係，依架男性都會患歇斯底里症

but of course women were still the most susceptible.

但當然女性比較容易受影響

When I began investigating the history of my own disease,

當我開始睇返我呢個病嘅歷史

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

我好驚訝呢啲舊諗法仍然深入民心

In 1934,

1934 年喺洛杉磯縣綜合醫院

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

198 個醫生、護士同醫院員工 病得好嚴重

became seriously ill.

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

佢哋肌肉衰弱，頸同背脊僵硬，又發燒

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

同我當初病一樣

Doctors thought it was a new form of polio.

醫生以為係變種嘅小兒麻痹症

Since then, there have been more than 70 outbreaks documented

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

around the world,

of a strikingly similar post-infectious disease.

All of these outbreaks have tended to disproportionately affect women,

所有爆發傾向影響女性

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

當時醫生搵唔到病因

they thought that these outbreaks were mass hysteria.

於是認為係大規模嘅歇斯底里症爆發

Why has this idea had such staying power?

點解呢個諗法可以保持咁耐？

I do think it has to do with sexism,

我真係覺得同性別歧視有關

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

但係我諗醫生係想幫手

They want to know the answer,

佢哋想知答案

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

但呢個講法至少可以畀醫生醫人

to explain illnesses that have no explanation.

畀醫生去解釋一啲解釋唔到嘅疾病

The problem is that this can cause real harm.

問題係，咁樣會帶嚟真正嘅傷害

In the 1950s, a psychiatrist named Eliot Slater

1950 年代 一個叫 Eliot Slater 嘅精神科醫生

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

研究咗 85 個 被診斷出患上歇斯底里症嘅病人

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

9 年之後，12 個死咗，30 個殘障

Many had undiagnosed conditions like multiple sclerosis,

好多人有診斷唔到嘅病

好似多發性硬化、癲癇、腦腫瘤

epilepsy, brain tumors.

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

喺 1980 年

歇斯底里症正式改名為「轉化症」

When my neurologist gave me that diagnosis in 2012,

神經科醫生喺 2012 年幫我診症嘅時候

he was echoing Freud's words verbatim,

佢完全跟隨緊佛洛伊德嘅說話

and even today,

今時今日

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

女性被診斷呢個病嘅機會 比男性多 2-10 倍

The problem with the theory of hysteria or psychogenic illness

問題係歇斯底里理論或者心理病理論 係永遠無辦法證實

is that it can never be proven.

It is by definition the absence of evidence,

個理論本身係無證據

and in the case of ME,

以肌痛性腦脊髓炎為例，你會發現

psychological explanations have held back biological research.

心理學嘅解釋窒礙生物學嘅研究

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

喺全球，肌痛性腦脊髓炎 係其中一個研究資助最少嘅病

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

喺美國，每年喺每個愛滋病人身上

用咗大概 2,500 美金

250 dollars per MS patient

多發性硬化症病人就 250 美金

and just 5 dollars per year per ME patient.

而肌痛性腦脊髓炎病人就只用 5 美金

This was not just lightning.

呢件事唔係突然間嚟

I was not just unlucky.

我唔只係唔好彩

The ignorance surrounding my disease has been a choice,

無視我呢個病係一個決定

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

係由應該要保護我哋嘅機構 做嘅一個決定

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

我哋唔知點解有時肌痛性腦脊髓炎 喺家族入面發生

why you can get it after almost any infection,

唔知點解你幾乎每次感染

from enteroviruses to Epstein-Barr virus to Q fever,

腸道病毒、人類疱疹病毒第四型 以至到 Q 型流感嘅時候

肌痛性腦脊髓炎就會病發

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

又或者點解佢影響女性 比男性多兩至三倍

This issue is much bigger than just my disease.

呢啲嘢比我嘅病重要得多

When I first got sick,

當初我病嘅時候

old friends were reaching out to me.

舊朋友都有樂意幫我

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

之後我發覺自己 同一班就嚟 30 歲嘅女士一樣

whose bodies were falling apart.

身體面臨崩潰

What was striking was just how much trouble we were having

最得人驚嘅係到底我哋面對緊嘅麻煩

being taken seriously.

有幾多係被認真咁對待

I learned of one woman with scleroderma,

我知道有個女士 患咗一種自身免疫結締組織病

an autoimmune connective tissue disease,

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

好多年都係話問題喺佢個頭度

Between the time of onset and diagnosis,

由發病到診斷

her esophagus was so thoroughly damaged,

佢條食道完完全全被破壞

she will never be able to eat again.

佢無辦法再食嘢

Another woman with ovarian cancer,

另一個患咗卵巢癌嘅女士

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

好多年都係話佢只係提早咗更年期

A friend from college,

我有一個大學朋友

whose brain tumor was misdiagnosed for years as anxiety.

佢腦腫瘤曾經被誤診為焦慮症

Here's why this worries me:

呢個就係令我擔心嘅原因︰

since the 1950s, rates of many autoimmune diseases

自從 1950 年代開始

患自身免疫病嘅比例增加三倍

have doubled to tripled.

Forty-five percent of patients who are eventually diagnosed

45% 最後確診患咗 一種已知嘅自身免疫病嘅人

with a recognized autoimmune disease

are initially told they're hypochondriacs.

初時被診斷患咗軟骨炎

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

就好似以前嘅歇斯底里症咁

and with whose stories we believe.

所有診斷都同性別拉上關係

Seventy-five percent of autoimmune disease patients are women,

75% 嘅自身免疫病嘅病人都係女性

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

某啲疾病甚至 90% 都係女性

Even though these diseases disproportionately affect women,

就算女性係容易患上呢啲病

they are not women's diseases.

呢啲都唔係女性專有嘅病

ME affects children and ME affects millions of men.

肌痛性脊髓炎出現喺小朋友

亦出現喺過百萬男性身上

And as one patient told me,

正如某個病人同我講

we get it coming and going --

我哋畀呢個病侵擾我哋……

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

如果你係女性，人哋就話你誇大癥狀

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

但如果你係男性 人哋就叫你堅強、振作

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

男性甚至更難診斷

My brain is not what it used to be.

雖然我嘅頭腦唔似以前咁

Here's the good part:

despite everything, I still have hope.

但無論點

我仲抱有希望

So many diseases were once thought of as psychological

有好多病一開始都被認為係精神方面嘅

until science uncovered their biological mechanisms.

直至科學發現佢哋嘅生物機制

Patients with epilepsy could be forcibly institutionalized

喺腦電圖測到大腦異常活動之前

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

癲癇病人可能被強制送入精神病院

Multiple sclerosis could be misdiagnosed as hysterical paralysis

喺斷層掃描同磁力共振發現腦病變之前

until the CAT scan and the MRI discovered brain lesions.

多發性硬化有可能誤診為 歇斯底里性麻痺

And recently, we used to think

以前，我哋認為胃潰瘍 只係因為壓力而形成

that stomach ulcers were just caused by stress,

until we discovered that H. pylori was the culprit.

到依架我哋發現 幽門螺旋菌先係罪魁禍首

ME has never benefited from the kind of science

肌痛性腦脊髓炎從未好似其他病咁 得到科學嘅幫助

that other diseases have had,

but that's starting to change.

但係呢個情況已經開始改變

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

喺德國，科學家開始 搵自身免疫病嘅證據

and in Japan, of brain inflammation.

日本搵緊腦炎症嘅證據

In the US, scientists at Stanford are finding abnormalities

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

in energy metabolism

that are 16 standard deviations away from normal.

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

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

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

進行緊第三階段嘅臨床實驗

What also gives me hope

仲畀到希望我嘅就係病人嘅韌力

is the resilience of patients.

Online we came together,

我哋透過網絡走埋一齊

and we shared our stories.

分享自己嘅故事

We devoured what research there was.

我哋讀晒現有嘅研究

We experimented on ourselves.

我哋用自己嚟做實驗

We became our own scientists and our own doctors

我哋要成為自己嘅科學家同醫生

because we had to be.

我哋一定要咁做

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

我慢慢咁喺呢度加 5%，嗰度加 5%

until eventually, on a good day,

直到有一日，我可以行出屋企

I was able to leave my home.

I still had to make ridiculous choices:

我仍然要做一啲荒謬嘅訣擇︰

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

我今日坐係花園 15 分鐘，定係洗頭好？

But it gave me hope that I could be treated.

但係我仍然相信我可以好返

I had a sick body; that was all.

我除咗有一個病咗嘅身體，咩都好好

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

得到正確嘅幫助，或者有一日我會好返

I came together with patients around the world,

我同世界各地嘅病人一齊對抗呢個病

and we started to fight.

We have filled the void with something wonderful,

我哋將美好嘅事物填滿空虛

but it is not enough.

但咁係唔夠

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

我仍然唔知我仲可唔可以跑、行路

or walk at any distance,

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

依架呢啲嘢只可以喺夢度做

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

但係嚟到呢度我都好感恩

Progress is slow,

進展係慢

and it is up

有時好

and it is down,

有時壞

but I am getting a little better each day.

但係每一日都好一啲

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

我記得匿埋係睡房好幾個月 不見天日嘅感覺

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

I thought that I would die there.

我以為我會死喺嗰度

But here I am today,

但係我今日喺呢度，同你哋一齊

with you,

and that is a miracle.

呢個就係奇蹟

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

如果我唔係幸運嘅一群

had I gotten sick before the internet,

如果我喺互聯網出現之前病

had I not found my community.

如果我搵唔到同病相憐嘅人

I probably would have already taken my own life,

我唔知我會點

大概我會好似好多其他人咁已經自殺

as so many others have done.

How many lives could we have saved, decades ago,

如果我哋幾十年前問啱問題

if we had asked the right questions?

可以救返幾多人？

How many lives could we save today

如果今日我哋真真正正開始

if we decide to make a real start?

又可以救返幾多人？

Even once the true cause of my disease is discovered,

如果我哋唔改變我哋嘅體制同文化

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

就算搵到我個病嘅真正原因

we will do this again to another disease.

我哋都會喺其他病重蹈覆轍

Living with this illness has taught me

呢個病教識咗我 科學同醫學都深受人類追求嘅

that science and medicine are profoundly human endeavors.

Doctors, scientists and policy makers

醫生、科學家同政策制訂者 都同普通人一樣受偏見影響

are not immune to the same biases

that affect all of us.

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

我哋要喺微細之處諗諗女性嘅健康

Our immune systems are just as much a battleground for equality

我哋嘅免疫系統同身體其他部分一樣 需要顧及

as the rest of our bodies.

We need to listen to patients' stories,

我哋要聽病人嘅故事

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

亦要肯講「我唔知」

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

「我唔知」係一件美好嘅事

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

「我唔知」先會有探索

And if we can do that,

如果我哋做到「我唔知」

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

如果我哋可以接觸眾多嘅未知

and then, rather than fear uncertainty,

而唔係怕當中嘅不確定性

maybe we can greet it with a sense of wonder.

我哋或者可以讚歎地欣賞其中

Thank you.

多謝

Thank you.

多謝