Hi.
大家好
Thank you.
多謝
[Jennifer Brea is sound-sensitive. The live audience was asked to applaud ASL-style, in silence.]
[ Jennifer Brea 對聲音敏感 現場觀眾用美式手語歡迎 ]
So, five years ago, this was me. I was a PhD student at Harvard, and I loved to travel. I had just gotten engaged to marry the love of my life. I was 28, and like so many of us when we are in good health, I felt like I was invincible.
呢個係五年前嘅我 當時我係哈佛嘅博士生 鍾意旅行 啱啱同我生命中最愛嘅人訂婚 嗰陣我28歲,同大部份人一樣 覺得自己好健康、百毒不侵
Then one day I had a fever of 104.7 degrees. I probably should have gone to the doctor, but I'd never really been sick in my life, and I knew that usually, if you have a virus, you stay home and you make some chicken soup, and in a few days, everything will be fine. But this time it wasn't fine. After the fever broke, for three weeks I was so dizzy, I couldn't leave my house. I would walk straight into door frames. I had to hug the walls just to make it to the bathroom. That spring I got infection after infection, and every time I went to the doctor, he said there was absolutely nothing wrong. He had his laboratory tests, which always came back normal. All I had were my symptoms, which I could describe, but no one else can see. I know it sounds silly, but you have to find a way to explain things like this to yourself, and so I thought maybe I was just aging. Maybe this is what it's like to be on the other side of 25.
有一日,我發燒燒到華氏 104.7 度 其實我應該要去睇醫生 不過,我一生中未患過病 而且我知,一般如果你受病毒感染 你留喺屋企,煲啲雞湯 幾日之內就會好返 但係,呢次無好返 發燒之後 三個星期都頭暈,無辦法出門口 我行路會撞落門框度 我要扶住墻先可以行去浴室 嗰年春天,我病完又病 每一次我去睇醫生 佢都話絕對無問題 佢手上嘅化驗報告 都話我好正常 我所有嘅癥狀 我都可以形容 但無人睇到 我知聽起嚟好傻 但係你點都會搵個原因畀自己 我以為可能係老化 或者呢個就係年過 25 嘅情況
(Laughter)
(笑聲)
Then the neurological symptoms started. Sometimes I would find that I couldn't draw the right side of a circle. Other times I wouldn't be able to speak or move at all. I saw every kind of specialist: infectious disease doctors, dermatologists, endocrinologists, cardiologists. I even saw a psychiatrist. My psychiatrist said, "It's clear you're really sick, but not with anything psychiatric. I hope they can find out what's wrong with you."
跟住,神經癥狀開始出現 有時,我發現我畫唔到圓形嘅右邊 有時我會講唔到嘢,甚至郁唔到 我睇過所有專科 傳染病科、皮膚科、內分泌科、心臟科 我甚至睇埋精神科 精神科醫生話︰「你好明顯病咗, 但同精神科無關。 我希望其他醫生搵到係咩事。」
The next day, my neurologist diagnosed me with conversion disorder. He told me that everything -- the fevers, the sore throats, the sinus infection, all of the gastrointestinal, neurological and cardiac symptoms -- were being caused by some distant emotional trauma that I could not remember. The symptoms were real, he said, but they had no biological cause.
第二日,神經科醫生診斷出 我患咗轉化症 佢話所有癥狀—— 發燒、喉嚨痛、鼻竇炎 所有腸胃、神經同心臟癥狀—— 都因為某啲我唔記得嘅情緒創傷引起 佢話啲病癥都係真嘅 但都冇生理原因解釋
I was training to be a social scientist. I had studied statistics, probability theory, mathematical modeling, experimental design. I felt like I couldn't just reject my neurologist's diagnosis. It didn't feel true, but I knew from my training that the truth is often counterintuitive, so easily obscured by what we want to believe. So I had to consider the possibility that he was right.
我曾經受訓做社會科學家 我讀過統計學、概率論 數學模型、實驗設計 雖然我唔可以否定神經科醫生嘅診斷 但我又覺得醫生嘅診斷唔係真嘅 但知識話畀我聽事實多數違反直覺 事實好容易被自己想相信嘅嘢矇蔽 所以我諗可能佢係啱嘅
That day, I ran a small experiment. I walked back the two miles from my neurologist's office to my house, my legs wrapped in this strange, almost electric kind of pain. I meditated on that pain, contemplating how my mind could have possibly generated all this. As soon as I walked through the door, I collapsed. My brain and my spinal cord were burning. My neck was so stiff I couldn't touch my chin to my chest, and the slightest sound -- the rustling of the sheets, my husband walking barefoot in the next room -- could cause excruciating pain. I would spend most of the next two years in bed.
嗰日,我做咗個小實驗 我喺診所行咗兩英里返屋企 我對腳有種好奇怪、好似觸電嘅痛 沿途,我仔細咁諗 我嘅心理點樣令呢一切發生 當我行入門口 我跌低咗 個腦同脊髓好似火燒咁 條頸僵硬到下巴掂唔到胸口 同埋,無論幾細嘅聲都好—— 就算床單摩擦 老公赤腳喺隔離房行嘅聲音—— 都會令我有難以忍受嘅痛楚 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? I thought I had a rare disease, something doctors had never seen. And then I went online and found thousands of people all over the world living with the same symptoms, similarly isolated, similarly disbelieved. Some could still work, but had to spend their evenings and weekends in bed, just so they could show up the next Monday. On the other end of the spectrum, some were so sick they had to live in complete darkness, unable to tolerate the sound of a human voice or the touch of a loved one.
點解我嘅醫生會錯得咁離譜? 我覺得我患咗一種罕見嘅病 連醫生都未見過嘅病 之後我上網 搵到嚟自世界各地成千上萬嘅人 原來都有同樣嘅癥狀 同樣需要隔離 同樣覺得難以置信 有啲人仲可以工作 但夜晚同周未都一定要留喺床上 只係為咗下星期一可以返工 至於其他人 有啲病得好嚴重 要喺完全黑暗嘅環境下生活 無辦法忍受人聲 或者伴侶嘅觸摸
I was diagnosed with myalgic encephalomyelitis. You've probably heard it called "chronic fatigue syndrome." For decades, that's a name that's meant that this has been the dominant image of a disease that can be as serious as this. The key symptom we all share is that whenever we exert ourselves -- physically, mentally -- we pay and we pay hard. If my husband goes for a run, he might be sore for a couple of days. If I try to walk half a block, I might be bedridden for a week. It is a perfect custom prison. I know ballet dancers who can't dance, accountants who can't add, medical students who never became doctors. It doesn't matter what you once were; you can't do it anymore. It's been four years, and I've still never been as well as I was the minute before I walked home from my neurologist's office.
我被診斷患上肌痛性腦脊髓炎 即係你可能聽過嘅「慢性疲勞症候群」 幾十年嚟 呢個名就代表住 一種可以嚴重成咁嘅疾病 一樣我哋都有共同病徵就係 當我哋耗盡全力,無論體力上定精神上 就要付出代價,好大代價 就好似如果我老公去跑步 佢可能會喉嚨痛幾日 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 呢個可以話係完美嘅軟禁 我識得跳唔到舞嘅芭蕾舞家 計唔到數嘅會計師 永遠都做唔成醫生嘅醫科生 你曾經係咩唔重要 因為你都無辦法繼續做 過咗四年 我仲未恢復到當日 由診所行返屋企前咁健康
It's estimated that about 15 to 30 million people around the world have this disease. In the US, where I'm from, it's about one million people. That makes it roughly twice as common as multiple sclerosis. Patients can live for decades with the physical function of someone with congestive heart failure. Twenty-five percent of us are homebound or bedridden, and 75 to 85 percent of us can't even work part-time. Yet doctors do not treat us and science does not study us. How could a disease this common and this devastating have been forgotten by medicine?
據估計,全球大概有 1,500 到 3,000 萬人患咗呢種病 喺我嘅國家,美國 就有一百萬人患咗呢種病 大約係患上多發性硬化嘅兩倍 病人可以生存到幾十年 但佢哋嘅活動能力就好似 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 75% 至 85% 甚至唔可以做兼職 事實上,醫生唔會醫我哋 科學家唔會研究我哋 點解呢種咁普遍同埋慘嘅病 會被醫學界遺忘?
When my doctor diagnosed me with conversion disorder, he was invoking a lineage of ideas about women's bodies that are over 2,500 years old. The Roman physician Galen thought that hysteria was caused by sexual deprivation in particularly passionate women. The Greeks thought the uterus would literally dry up and wander around the body in search of moisture, pressing on internal organs -- yes -- causing symptoms from extreme emotions to dizziness and paralysis. The cure was marriage and motherhood.
當我嘅醫生診斷出我患咗轉化症 佢指向緊 一啲有 2,500 年歷史 有關女性身體嘅諗法 古羅馬醫生蓋倫認為 歇斯底里症嘅成因係性渴求 尤其係熱情嘅女性 蓋倫認為子宮會變乾 並且喺身體遊走搵水份 擠壓內臟—— 無錯—— 引致極端情緒 甚至頭暈同癱瘓 當時嘅療法係結婚同生仔
These ideas went largely unchanged for several millennia until the 1880s, when neurologists tried to modernize the theory of hysteria. Sigmund Freud developed a theory that the unconscious mind could produce physical symptoms when dealing with memories or emotions too painful for the conscious mind to handle. It converted these emotions into physical symptoms. This meant that men could now get hysteria, but of course women were still the most susceptible.
呢種諗法維持到 1880 年代 當時嘅神經病學家 嘗試更新歇斯底里症嘅理論 佛洛伊德發展咗一個理論 佢話︰當明意識處理唔到 一啲太痛苦嘅記憶或者情緒 潛意識就會產生生理徵狀 將情緒轉化為生理徵狀 即係,依架男性都會患歇斯底里症 但當然女性比較容易受影響
When I began investigating the history of my own disease, I was amazed to find how deep these ideas still run. In 1934, 198 doctors, nurses and staff at the Los Angeles County General Hospital became seriously ill. They had muscle weakness, stiffness in the neck and back, fevers -- all of the same symptoms I had when I first got diagnosed. Doctors thought it was a new form of polio. Since then, there have been more than 70 outbreaks documented around the world, of a strikingly similar post-infectious disease. All of these outbreaks have tended to disproportionately affect women, and in time, when doctors failed to find the one cause of the disease, they thought that these outbreaks were mass hysteria.
當我開始睇返我呢個病嘅歷史 我好驚訝呢啲舊諗法仍然深入民心 1934 年喺洛杉磯縣綜合醫院 198 個醫生、護士同醫院員工 病得好嚴重 佢哋肌肉衰弱,頸同背脊僵硬,又發燒 同我當初病一樣 醫生以為係變種嘅小兒麻痹症 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 所有爆發傾向影響女性 當時醫生搵唔到病因 於是認為係大規模嘅歇斯底里症爆發
Why has this idea had such staying power? I do think it has to do with sexism, but I also think that fundamentally, doctors want to help. They want to know the answer, and this category allows doctors to treat what would otherwise be untreatable, to explain illnesses that have no explanation. The problem is that this can cause real harm. In the 1950s, a psychiatrist named Eliot Slater studied a cohort of 85 patients who had been diagnosed with hysteria. Nine years later, 12 of them were dead and 30 had become disabled. Many had undiagnosed conditions like multiple sclerosis, epilepsy, brain tumors. In 1980, hysteria was officially renamed "conversion disorder." When my neurologist gave me that diagnosis in 2012, he was echoing Freud's words verbatim, and even today, women are 2 to 10 times more likely to receive that diagnosis.
點解呢個諗法可以保持咁耐? 我真係覺得同性別歧視有關 但係我諗醫生係想幫手 佢哋想知答案 但呢個講法至少可以畀醫生醫人 畀醫生去解釋一啲解釋唔到嘅疾病 問題係,咁樣會帶嚟真正嘅傷害 1950 年代 一個叫 Eliot Slater 嘅精神科醫生 研究咗 85 個 被診斷出患上歇斯底里症嘅病人 9 年之後,12 個死咗,30 個殘障 好多人有診斷唔到嘅病 好似多發性硬化、癲癇、腦腫瘤 喺 1980 年 歇斯底里症正式改名為「轉化症」 神經科醫生喺 2012 年幫我診症嘅時候 佢完全跟隨緊佛洛伊德嘅說話 今時今日 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 is that it can never be proven. It is by definition the absence of evidence, and in the case of ME, psychological explanations have held back biological research. All around the world, ME is one of the least funded diseases. In the US, we spend each year roughly 2,500 dollars per AIDS patient, 250 dollars per MS patient and just 5 dollars per year per ME patient. This was not just lightning. I was not just unlucky. The ignorance surrounding my disease has been a choice, a choice made by the institutions that were supposed to protect us.
問題係歇斯底里理論或者心理病理論 係永遠無辦法證實 個理論本身係無證據 以肌痛性腦脊髓炎為例,你會發現 心理學嘅解釋窒礙生物學嘅研究 喺全球,肌痛性腦脊髓炎 係其中一個研究資助最少嘅病 喺美國,每年喺每個愛滋病人身上 用咗大概 2,500 美金 多發性硬化症病人就 250 美金 而肌痛性腦脊髓炎病人就只用 5 美金 呢件事唔係突然間嚟 我唔只係唔好彩 無視我呢個病係一個決定 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, why you can get it after almost any infection, from enteroviruses to Epstein-Barr virus to Q fever, or why it affects women at two to three times the rate of men. This issue is much bigger than just my disease. When I first got sick, old friends were reaching out to me. I soon found myself a part of a cohort of women in their late 20s whose bodies were falling apart. What was striking was just how much trouble we were having being taken seriously.
我哋唔知點解有時肌痛性腦脊髓炎 喺家族入面發生 唔知點解你幾乎每次感染 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 又或者點解佢影響女性 比男性多兩至三倍 呢啲嘢比我嘅病重要得多 當初我病嘅時候 舊朋友都有樂意幫我 之後我發覺自己 同一班就嚟 30 歲嘅女士一樣 身體面臨崩潰 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
I learned of one woman with scleroderma, an autoimmune connective tissue disease, who was told for years that it was all in her head. Between the time of onset and diagnosis, her esophagus was so thoroughly damaged, she will never be able to eat again. Another woman with ovarian cancer, who for years was told that it was just early menopause. A friend from college, whose brain tumor was misdiagnosed for years as anxiety.
我知道有個女士 患咗一種自身免疫結締組織病 好多年都係話問題喺佢個頭度 由發病到診斷 佢條食道完完全全被破壞 佢無辦法再食嘢 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 我有一個大學朋友 佢腦腫瘤曾經被誤診為焦慮症
Here's why this worries me: since the 1950s, rates of many autoimmune diseases have doubled to tripled. Forty-five percent of patients who are eventually diagnosed with a recognized autoimmune disease are initially told they're hypochondriacs. Like the hysteria of old, this has everything to do with gender and with whose stories we believe. Seventy-five percent of autoimmune disease patients are women, and in some diseases, it's as high as 90 percent. Even though these diseases disproportionately affect women, they are not women's diseases. ME affects children and ME affects millions of men. And as one patient told me, we get it coming and going -- if you're a woman, you're told you're exaggerating your symptoms, but if you're a guy, you're told to be strong, to buck up. And men may even have a more difficult time getting diagnosed.
呢個就係令我擔心嘅原因︰ 自從 1950 年代開始 患自身免疫病嘅比例增加三倍 45% 最後確診患咗 一種已知嘅自身免疫病嘅人 初時被診斷患咗軟骨炎 就好似以前嘅歇斯底里症咁 所有診斷都同性別拉上關係 75% 嘅自身免疫病嘅病人都係女性 某啲疾病甚至 90% 都係女性 就算女性係容易患上呢啲病 呢啲都唔係女性專有嘅病 肌痛性脊髓炎出現喺小朋友 亦出現喺過百萬男性身上 正如某個病人同我講 我哋畀呢個病侵擾我哋…… 如果你係女性,人哋就話你誇大癥狀 但如果你係男性 人哋就叫你堅強、振作 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. So many diseases were once thought of as psychological until science uncovered their biological mechanisms. Patients with epilepsy could be forcibly institutionalized until the EEG was able to measure abnormal electrical activity in the brain. Multiple sclerosis could be misdiagnosed as hysterical paralysis until the CAT scan and the MRI discovered brain lesions. And recently, we used to think that stomach ulcers were just caused by stress, until we discovered that H. pylori was the culprit. ME has never benefited from the kind of science that other diseases have had, but that's starting to change. In Germany, scientists are starting to find evidence of autoimmunity, and in Japan, of brain inflammation. In the US, scientists at Stanford are finding abnormalities in energy metabolism that are 16 standard deviations away from normal. And in Norway, researchers are running a phase-3 clinical trial on a cancer drug that in some patients causes complete remission.
但無論點 我仲抱有希望 有好多病一開始都被認為係精神方面嘅 直至科學發現佢哋嘅生物機制 喺腦電圖測到大腦異常活動之前 癲癇病人可能被強制送入精神病院 喺斷層掃描同磁力共振發現腦病變之前 多發性硬化有可能誤診為 歇斯底里性麻痺 以前,我哋認為胃潰瘍 只係因為壓力而形成 到依架我哋發現 幽門螺旋菌先係罪魁禍首 肌痛性腦脊髓炎從未好似其他病咁 得到科學嘅幫助 但係呢個情況已經開始改變 喺德國,科學家開始 搵自身免疫病嘅證據 日本搵緊腦炎症嘅證據 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 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 進行緊第三階段嘅臨床實驗
What also gives me hope is the resilience of patients. Online we came together, and we shared our stories. We devoured what research there was. We experimented on ourselves. We became our own scientists and our own doctors because we had to be. And slowly I added five percent here, five percent there, until eventually, on a good day, I was able to leave my home. I still had to make ridiculous choices: Will I sit in the garden for 15 minutes, or will I wash my hair today? But it gave me hope that I could be treated. I had a sick body; that was all. And with the right kind of help, maybe one day I could get better.
仲畀到希望我嘅就係病人嘅韌力 我哋透過網絡走埋一齊 分享自己嘅故事 我哋讀晒現有嘅研究 我哋用自己嚟做實驗 我哋要成為自己嘅科學家同醫生 我哋一定要咁做 我慢慢咁喺呢度加 5%,嗰度加 5% 直到有一日,我可以行出屋企 我仍然要做一啲荒謬嘅訣擇︰ 我今日坐係花園 15 分鐘,定係洗頭好? 但係我仍然相信我可以好返 我除咗有一個病咗嘅身體,咩都好好 得到正確嘅幫助,或者有一日我會好返
I came together with patients around the world, and we started to fight. We have filled the void with something wonderful, but it is not enough. I still don't know if I will ever be able to run again, or walk at any distance, or do any of those kinetic things that I now only get to do in my dreams. But I am so grateful for how far I have come. Progress is slow, and it is up and it is down, but I am getting a little better each day.
我同世界各地嘅病人一齊對抗呢個病 我哋將美好嘅事物填滿空虛 但咁係唔夠 我仍然唔知我仲可唔可以跑、行路 依架呢啲嘢只可以喺夢度做 但係嚟到呢度我都好感恩 進展係慢 有時好 有時壞 但係每一日都好一啲
I remember what it was like when I was stuck in that bedroom, when it had been months since I had seen the sun. I thought that I would die there. But here I am today, with you, and that is a miracle.
我記得匿埋係睡房好幾個月 不見天日嘅感覺 我以為我會死喺嗰度 但係我今日喺呢度,同你哋一齊 呢個就係奇蹟
I don't know what would have happened had I not been one of the lucky ones, had I gotten sick before the internet, had I not found my community. I probably would have already taken my own life, as so many others have done. How many lives could we have saved, decades ago, if we had asked the right questions? How many lives could we save today if we decide to make a real start?
如果我唔係幸運嘅一群 如果我喺互聯網出現之前病 如果我搵唔到同病相憐嘅人 我唔知我會點 大概我會好似好多其他人咁已經自殺 如果我哋幾十年前問啱問題 可以救返幾多人? 如果今日我哋真真正正開始 又可以救返幾多人?
Even once the true cause of my disease is discovered, if we don't change our institutions and our culture, we will do this again to another disease. Living with this illness has taught me that science and medicine are profoundly human endeavors. Doctors, scientists and policy makers are not immune to the same biases that affect all of us.
如果我哋唔改變我哋嘅體制同文化 就算搵到我個病嘅真正原因 我哋都會喺其他病重蹈覆轍 呢個病教識咗我 科學同醫學都深受人類追求嘅 醫生、科學家同政策制訂者 都同普通人一樣受偏見影響
We need to think in more nuanced ways about women's health. Our immune systems are just as much a battleground for equality as the rest of our bodies. We need to listen to patients' stories, and we need to be willing to say, "I don't know." "I don't know" is a beautiful thing. "I don't know" is where discovery starts. And if we can do that, if we can approach the great vastness of all that we do not know, and then, rather than fear uncertainty, maybe we can greet it with a sense of wonder.
我哋要喺微細之處諗諗女性嘅健康 我哋嘅免疫系統同身體其他部分一樣 需要顧及 我哋要聽病人嘅故事 亦要肯講「我唔知」 「我唔知」係一件美好嘅事 「我唔知」先會有探索 如果我哋做到「我唔知」 如果我哋可以接觸眾多嘅未知 而唔係怕當中嘅不確定性 我哋或者可以讚歎地欣賞其中
Thank you.
多謝
Thank you.
多謝