[珍妮佛·布瑞]
Hi.
嗨。
Thank you.
謝謝你們。
[Jennifer Brea is sound-sensitive. The live audience was asked to applaud ASL-style, in silence.]
[珍妮佛·布瑞對聲音敏感。 現場觀眾被要求以 無聲的手語式鼓掌。]
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.
這是五年前的我。 我那時是哈佛大學攻讀博士的學生, 我非常喜歡旅遊。 我那時剛與我生命的最愛訂婚。 我那時 28 歲, 和我們許多人一樣,在健康時候, 我覺得我是無所不能。
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.
突然有一天,我發燒到 40.39 度。 我那時應該去看醫生, 但是我從沒生過什麼病, 我知道通常如果你感染了病毒, 你應該在家裡休息,煮一些雞湯, 幾天後,你就沒事了。 但是這次不是這樣。 我退燒以後, 我暈眩了三個星期, 我根本無法出門。 我常常撞到門框。 我必須摸著牆壁才能去到浴室。 那個春天我一直重覆感染, 每一次我去看醫生, 他說我絕對沒有什麼問題。 他做了一些檢驗, 結果都是正常。 我可以形容我的症狀, 但是沒有人看得到。 我知道聽起來很可笑, 但是你必須找到方法來說服你自己, 所以我想或許我只是在老化。 或許這就像是在 25 歲的另一頭。
(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."
然後神經的症狀開始出現。 有時我發現我無法畫圓形的右邊。 有時我完全無法說話或者無法動。 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、 心臟科醫師、 我甚至看了精神科醫師。 我的精神科醫師說: 「你是真的有病, 但不是精神疾病, 我希望他們可以找到你的問題。」
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.
隔一天,我的神經科醫師 診斷我有轉化症。 他告訴我所有的問題── 發燒、喉嚨痛、鼻竇炎、 所有的胃腸、神經和心臟症狀── 都是因為我不記得的 一些過去的情緒創傷所引起的。 他說,那些症狀都是真的, 但是它們的病因與生理無關。
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.
我那時學的是社會科學。 我修過統計學、機率理論、 數學建模、實驗設計。 我覺得我不能否認 我的神經科醫生的診斷。 我感覺實際並非如此, 但從我的訓練 我知道真理往往違反直覺, 因為我們想要相信而被遮蔽了。 我必須考慮醫生的診斷 是正確的可能性。
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.
那天,我做了一個小實驗。 我走了兩英里, 從我的神經科醫師的診所回到家裡, 我的腿感覺被包在一種奇怪的 像是被電到的痛苦。 我對著那個痛感冥思, 思維著我的心 如何有可能產生這一切。 當我走進門時, 我癱瘓在地上。 我的頭腦和我的脊椎像是在燃燒。 我的脖子僵硬到 我的下巴無法碰到我的胸部, 而且很小的聲音── 床單的沙沙聲, 我的丈夫在隔壁房間 赤腳走路的聲音── 都讓我感到極度的痛苦。 接下來的兩年我都臥床。
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.
我的醫師怎能錯得如此離譜? 我以為我得到罕見的疾病, 醫生從沒見過的。 後來我就上網 發現世界各地有數千人 有著同樣的症狀, 同樣的孤立, 同樣的無法相信。 有些人還可以工作, 但是晚上和週末就只能臥床, 他們才有可能在下個星期一去上班。 在另一端, 有些人嚴重到 他們只能在完全黑暗中生活, 無法容忍任何人的聲音 或是被所愛的人觸摸。
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.
我被診斷為肌痛性腦脊髓炎。 你們可能聽過,它也被稱為 「慢性疲勞症候群。」 數十年來這個病名 意味著圖上這個, 一直是這個病的主要形象。 但是這個疾病可以是如此嚴重。 我們都有的主要的症狀是 每當我們過度使用我們的身體或精神, 我們就要付出代價,很大的代價。 如果我丈夫去跑步, 他可能會酸痛一兩天。 如果我嘗試走半條街, 我可能就會臥床一個星期。 這是一個完美的訂製監獄。 我認識無法跳舞的芭蕾舞者, 無法做加法的會計師, 無法成為醫生的醫科學生。 無論你曾經是什麼; 你都無法再做了。 已經四年了, 我還是無法恢復到 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 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?
根據統計,全世界大約有 一千五百到三千萬人 罹患這個疾病。 在美國,我的家鄉, 大約有一百萬人。 它大約是多發性硬化症的兩倍。 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。 我們有 25% 的人 無法出門或整日臥床, 我們有 75% 到 85% 的人 甚至不能做兼職的工作。 然而,醫生不治療我們, 科學不研究我們。 為何這麼常見 和如此具毀滅性的疾病, 被醫學遺忘了呢?
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.
當我的醫生診斷我的病為轉化症, 他所用的是關於婦女身體的傳統想法, 那是 2,500 年以來的想法。 羅馬時代的加倫醫生認為 歇斯底里症是由於 缺乏性生活所造成的, 特別是熱情的婦女。 希臘人認為子宮會乾掉 並在身體各處尋找水分, 給內臟造成壓力── 是的── 引起極端情緒化的症狀, 頭暈和癱瘓。 治癒的方法是結婚和成為母親。
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.
這些想法從幾千年前到 1880 年代, 基本上沒有改變, 直到神經學家試圖 將歇斯底里的理論現代化。 弗洛伊德制定了一個理論 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 因為太痛苦,清醒的意識無法處理。 它將這些情緒轉化成生理的症狀。 這意味著男人也可能 得到歇斯底里症, 但當然婦女還是最容易得的。
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.
當我開始調查我的疾病的歷史, 我很驚訝於發現這些想法 仍然深植於人心。 在 1934 年, 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。 他們有肌肉無力、 頸部和背部僵硬、和發燒等症狀── 就是我剛被診斷時所有一樣的症狀。 那時醫生認為這是 一種新的小兒麻痺症。 從那時起,世界上有 超過 70 起的發病記錄, 幾乎和感染後疾病完全相似。 這些發病都不成比率地 發生在婦女身上。 過了一段時間, 當醫生找不到單一病因, 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? 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.
為什麼這個想法有如此持續力呢? 我覺得這是和性別歧視有關, 但我也認為,從根本上說, 醫生是想幫助。 他們想知道答案, 用這個分類,讓醫生治療 這個否則會被當做無法治療的病, 解釋這個無法解釋的病。 問題是這樣可能造成真正的傷害。 在 1950 年代,一位叫做 艾利耶特·斯雷特的精神科醫生, 研究了一群 85 名 被診斷為歇斯底里症的患者。 九年後,其中 12 人死亡, 30 人已經變成殘疾。 許多人有未確診的情況 如多發性硬化、 癲癇、腦腫瘤。 在 1980年,歇斯底里症 被正式更名為轉化症。 我的神經科醫師 在 2012 年給我那個診斷, 他逐字使用弗洛伊德的話, 目前仍然如此。 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 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.
問題是歇斯底里症 或心因性疾病的理論 永遠無法被證明。 它的定義就是缺乏證據, 就 ME(肌痛性腦脊髓炎)而言, 從心理方面的解釋 抑制了生物學方面的研究。 世界各地,ME 是一個 最少被資助的疾病。 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 美元在多發性硬化患者身上, 但是每年只有 5 美元在 ME 患者。 這不只是偶然的。 我只是很不幸運。 無知圍繞著我得到的疾病, 而這是選擇的結果, 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, 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.
我們不知道為什麼 ME 有時有家族性, 為什麼你幾乎可以在 任何感染後得到它, 從腸道病毒到 艾伯斯坦-巴爾病毒到 Q 熱, 或為什麼它影響婦女的比率是 是男性的兩到三倍。 這個問題要大得多, 不僅僅是我的病。 當我剛生病時, 老朋友都和我聯絡。 我很快發現自己是一群 將近 30 歲的婦女的一部分, 她們的身體逐漸不行。 最驚人的是我們非常不容易 讓人們把我們當一回事。
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.
我聽說一個有硬皮病的婦女, 那是一種自體免疫性結締組織病。 多年來,她被告知 這一切都是她自己想的。 在發病和診斷的時間之間, 她的食道被徹底地損壞, 她永遠不能再吃東西。 另一個婦女有卵巢癌, 多年來醫生告訴她 那只是更年期早期症狀。 我的一位大學同學, 他的腦腫瘤多年來被誤診為焦慮症。
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.
這就是為什麼這讓我擔心: 從 1950 以來, 許多自體免疫疾病的比率 已增加一倍到兩倍。 百分之四十五的患者 最後都有被診斷為 某種自體免疫疾病, 他們最初被告知他們是慮病症。 就像以前的歇斯底里症, 他們認為這些病都與性別有關, 我們相信了這些說法。 百分之七十五的 自體免疫疾病患者是婦女, 在有些疾病,它高達 90%。 即使這些疾病 很不成比率地影響婦女, 它們不是婦女的疾病。 兒童罹患 ME, 數百萬的男人罹患 ME。 有一個病人告訴我, 我們不知所以的得到這個診斷── 如果你是一個婦女, 你會被告知你誇大你的症狀, 但如果你是一個男性, 你會被告知你要堅強,要加強。 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: 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.
好消息是: 儘管發生了這一切,我仍抱著希望。 許多疾病曾經被認為是心理的, 直到科學發現其生物學機制。 癲癇患者曾被強制住在機構裡, 直到腦波圖能夠測量 大腦中的異常放電狀況。 多發性硬化可能被誤診 為歇斯底里性麻痺, 直到 CAT 掃描和 MRI 發現腦損傷。 最近,我們過去以為 胃潰瘍是因為壓力造成的, 直到我們發現 幽門螺桿菌是罪魁禍首。 ME 未曾從像其他疾病 得到那種科學收益, 但那開始在改變。 在德國,科學家開始尋找 自體免疫的證據, 在日本,他們在尋找腦炎症的。 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。 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, 這種藥能完全緩解某些病人的癌症。
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.
也讓我抱著希望的是 患者的韌性。 透過網路我們在一起, 我們彼此分享自己的故事。 我們研讀任何有關的研究。 我們在自己身上做實驗。 我們成為我們自己的科學家 和我們自己的醫生, 因為我們必須如此。 慢慢地,我在這裡加百分之五, 那裡加百分之五, 直到最後,在一個美好的一天, 我能夠離開我的家。 我仍然必須做很荒謬的選擇; 我是要在花園坐 15 分鐘, 還是我今天要洗頭? 但是它給予我可以被治好的希望。 我有一個有病的身體;僅此而已。 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, 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.
我與世界各地的病患在一起, 我們開始戰鬥。 我們用美妙的東西填補了空白, 但還是不夠。 我仍然不知道我是否 有可能再度能跑, 或者走遠一點, 或做現在只能在我的夢裡做的運動。 但是我對我已經有的進步很感恩。 進步很慢, 有時上, 有時下, 但是我每天都有好一點。
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.
我記得當我被困在臥室裡的樣子, 那時我幾個月後才看到了太陽。 我以為我會死在那裡。 但是我今天在這裡, 和你們一起, 這是一個奇蹟。
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?
我不知道如果我不是幸運的人之一, 如果我在網路時代前就生病, 如果我沒有找到 我們的群組,我會如何。 我很可能已經自殺了, 如同許多其他人一樣。 數十年前,如果我們問對了問題 我們本來可以救多少人的生命? 我們今天可以救多少生命 如果我們決定真正的開始?
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.
甚至當我的疾病的真正原因被發現, 如果我們不改變 我們的機構和我們的文化, 我們仍然會如此對待另一個疾病。 與這個病共存教我, 科學和醫學是很深刻的人類努力。 醫生,科學家和決策者 不能免疫於 影響我們所有人的同樣的偏見。
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.
我們需要對婦女的健康 做更細微的方式思考。 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。 我們必須傾聽病人的故事, 我們也必須願意說,「我不知道。」 「我不知道」是一件美麗的事。 「我不知道」是發現的起點。 如果我們能夠如此做, 如果我們能夠接近所有我們 不知道的巨大空洞, 那時,代替害怕的不確定性, 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!