JenniferBrea_2016T[珍·布瑞][当你的疾病医生无法诊断时该怎么办].pdf

www.XiYuS锡育软件Thank you.谢谢你们。00:19Jennifer Brea is sound-sensitive.珍妮佛 布列对声音敏感。00:20The live audience was asked to applaud ASL-style,in silence.So,five years ago,this was me.现场观众被要求以无声的手语式鼓掌。这是五年前的我。00:22I was a PhD student at Harvard,and I loved to travel.我那时是哈佛大学攻读博士的学生,我非常喜欢旅游。00:29I had just gotten engaged to marry the love of my life.我那时刚与我生命的最爱订婚。00:34I was 28,and like so many of us when we are in good health,Ifelt like I was invincible.我那时28岁,和我们许多人一样在健康时候,我觉得我是无所不能。00:39Then one day I had a fever of 104.7 degrees.突然有一天,我发烧到104.7度。00:46I probably should have gone to the doctor,but Id neverreally been sick in my life,and I knew that usually,if you havea virus,you stay home and you make some chicken soup,andin a few days,everything will be fine.我那时应该去看医生,但是我从没生过什么病,我知道通常如果你感染了病毒,你应该在家里休息,煮一些鸡汤,几天后,你就没事了。00:50But this time it wasnt fine.但是这次不是这样。01:04After the fever broke,for three weeks I was so dizzy,Icouldnt leave my house.我发烧以后,我晕眩了三个星期,我根本无法出门。01:07I would walk straight into door frames.我常常撞到门框。01:13in silence:沉默地 Harvard:n.哈佛大学；哈佛大学学生 invincible:adj.无敌的;不能征服的 dizzy:adj.晕眩的；使人头晕的；昏乱的；心不在焉的；愚蠢的/vt.使头晕眼花；使混乱；使茫然/frames:n.计电子通信帧,电影画面;建计框架;眼镜架(frame的复数)I had to hug the walls just to make it to the bathroom.我必须摸着墙壁才能去到浴室。01:16That spring I got infection after infection,and every time Iwent to the doctor,he said there was absolutely nothingwrong.那个春天我一直重覆感染,每一次我去看医生,他说我绝对没有什么问题。01:20He had his laboratory tests,which always came back normal.他做了一些檢验,结果都是正常。01:29All I had were my symptoms,which I could describe,but noone else can see.我可以形容我的症状,我可以形容我的症状,但是没有人看得到。01:33I know it sounds silly,but you have to find a way to explainthings like this to yourself,and so I thought maybe I was justaging.我知道听起来很可笑,但是你必须找到方法来说服你自己,所以我想或许我只是在老化。01:41Maybe this is what its like to be on the other side of 25.或许这就像是在25岁的另一头。01:50(Laughter)Then the neurological symptoms started.（笑声）然后神经的症状开始出现。01:53Sometimes I would find that I couldnt draw the right side ofa circle.有时我发现我无法画圆形的右边。01:59Other times I wouldnt be able to speak or move at all.有时我完全无法说话或者无法动。02:04I saw every kind of specialist:infectious disease doctors,dermatologists,endocrinologists,cardiologists.我看过每一科的专科医师:感染科医师、皮肤科医师、内分泌专家、心脏科医师、02:10symptoms:n.临床症状;症候;病徵 on the other side:另一面;在另一边 neurological:adj.神经病学的,神经学上的infectious:adj.传染的；传染性的；易传染的 dermatologists:n.皮肤科医生;皮肤学者 cardiologists:心脏病专家I even saw a psychiatrist.我甚至看了精神科医师。02:16My psychiatrist said,Its clear youre really sick,but not withanything psychiatric.我的精神科医师说,但不是精神疾病,我希望他们可以找到你的问题。02:19I hope they can find out whats wrong with you.02:26The next day,my neurologist diagnosed me with隔一天,我的神经科医师诊断我有转换障碍。02:30TED演讲者：Jennifer Brea|珍布瑞演讲标题：What happens when you have a disease doctors cant diagnose|当你的疾病医生无法诊断时该怎么办？内容概要：Five years ago,TED Fellow Jennifer Brea became progressively ill with myalgicencephalomyelitis,commonly known as chronic fatigue syndrome,a debilitating illness thatseverely impairs normal activities and on bad days makes even the rustling of bed sheetsunbearable.In this poignant talk,Brea describes the obstacles shes encountered in seekingtreatment for her condition,whose root causes and physical effects we dont fully understand,as well as her mission to document through film the lives of patients that medicine struggles totreat.五年前，TED的员工珍布瑞 开始患有肌痛性脑脊髓炎且日趋严重。此病俗称慢性疲劳综合症，是一种使人衰弱的疾病，它严重地影响正常的活动。糟糕的时候甚至床单的沙沙声都会难以忍受。在这场令人心酸的演讲中，布瑞描述了她在寻求治疗这种我们不完全了解根本原因和对身体影响的疾病所以到困难，同时表达她的使命通过电影的形式记录患者临床治疗的艰辛。The next day,my neurologist diagnosed me withconversion disorder.02:30He told me that everything the fevers,the sore throats,the sinus infection,all of the gastrointestinal,neurologicaland cardiac symptoms were being caused by somedistant emotional trauma that I could not remember.他告诉我所有的问题 发烧、喉咙痛、鼻窦炎、所有的胃肠、神经和心脏症状 都是因为我不记得的一些过去的情绪创伤所引起的。都是因为我不记得的一些过去的情绪创伤所引起的。02:34The symptoms were real,he said,but they had no biologicalcause.他说,那些症状都是真的,但是它们的病因与生理无关。02:50I was training to be a social scientist.我那时学的是社会科学。02:56I had studied statistics,probability theory,mathematicalmodeling,experimental design.我修过统计学、机率理论、数学建模、实验设计。02:59psychiatrist:n.精神病学家,精神病医生 psychiatric:adj.精神病学的;精神病治疗的 neurologist:神经学家;神经科专门医师diagnosed:v.诊断;被诊断为(diagnose的过去分词)conversion:n.转换;变换;金融兑换;改变信仰 fevers:n.发烧,发热;狂热/vt.使发烧;使狂热;使患热病/vi.发烧;狂热;患热病 sinus:n.生物窦;静脉窦;下陷或凹下去的地方 gastrointestinal:adj.胃肠的 cardiac:n.强心剂;强胃剂/adj.心脏的;心脏病的;贲门的 emotional:adj.情绪的；易激动的；感动人的 trauma:n.外科创伤(由心理创伤造成精神上的异常);外伤 statistics:n.统计;统计学;统计统计资料 probability:n.可能性；机率；数或然率 modeling:n.自建模,造型;立体感/adj.制造模型的I felt like I couldnt just reject my neurologists diagnosis.我觉得我不能否认我的神经科医生的诊断。03:07It didnt feel true,but I knew from my training that the truthis often counterintuitive,so easily obscured by what wewant to believe.我感觉实际并非如此,但从我的训练我知道真理往往是违反直觉。所以直觉很容易地因为我们想要相信而被遮蔽了。03:11So I had to consider the possibility that he was right.我必须考虑医生的诊断是正确的可能性。03:20That day,I ran a small experiment.那天,我做了一个小实验。03:25I walked back the two miles from my neurologists office tomy house,my legs wrapped in this strange,almost electrickind of pain.我走了两英里,从我的神经科医师的诊所回到家里,我的腿感觉被包在一种奇怪的像是被电到的痛苦。03:28I meditated on that pain,contemplating how my mind couldhave possibly generated all this.我对着那个痛感冥思,思维着我的心如何有可能产生这一切。03:38As soon as I walked through the door,I collapsed.当我走进门时,我瘫痪在地上。03:45My brain and my spinal cord were burning.我的头脑和我的脊椎像是在燃烧。03:48My neck was so stiff I couldnt touch my chin to my chest,and the slightest sound the rustling of the sheets,myhusband walking barefoot in the next room could causeexcruciating pain.我的脖子僵硬到我的下巴无法碰到我的胸部,而且很小的声音 床单的沙沙声,我的丈夫在隔壁房间赤脚走路的声音 都让我感到极度的痛苦。03:52diagnosis:n.诊断 counterintuitive:adj.违反直觉的 obscured:adj.遮蔽的;湮没的/v.掩盖;使含混;变得模糊(obscure的过去分词)wrapped:adj.有包装的/v.包裹;覆盖(wrap的过去分词)meditated:vt.考虑;计划;企图/vi.冥想;沉思contemplating:注视 collapsed:adj.倒塌的;暴跌的;收缩的;倾陷了的/v.倒塌;崩溃(collapse的过去分词);价格暴跌 spinal:adj.脊髓的;脊柱的;针的;脊骨的;尖刺的/n.脊椎麻醉 slightest:adj.极不重要的,最少的 rustling:n.瑟瑟声/v.发出沙沙声;使窸窣作响(rustle的ing形式)/adj.沙沙作响的 barefoot:adj.赤脚的/adv.赤着脚地 excruciating:adj.折磨人的;使苦恼的/v.折磨;使苦恼;使受酷刑(excruciate的ing形式)I would spend most of the next two years in bed.接下来的两年我都卧床。04:07How could my doctor have gotten it so wrong?我的医师怎能错得如此离谱？04:11I thought I had a rare disease,something doctors had neverseen.我以为我得到罕见的疾病,医生从没见过的。04:14And then I went online and found thousands of people allover the world living with the same symptoms,similarlyisolated,similarly disbelieved.后来我就上网 发现世界各地有数千人 有着同样的症状,同样的孤立,同样的无法相信。04:19Some could still work,but had to spend their evenings andweekends in bed,just so they could show up the nextMonday.有些人还可以工作,但是晚上和周末就只能卧床,他们才有可能在下个星期一去上班。04:29On the other end of the spectrum,some were so sick theyhad to live in complete darkness,unable to tolerate thesound of a human voice or the touch of a loved one.在另一端,有些人严重到 他们只能在完全黑暗中生活,无法容忍任何人的声音 或是被所爱的人触摸。04:36I was diagnosed with myalgic encephalomyelitis.我被诊断为肌痛性脑脊髓炎。04:49Youve probably heard it called chronic fatigue syndrome.你们可能听过,它也被称为“慢性疲劳综合症”。04:54For decades,thats a name thats meant that this has beenthe dominant image of a disease that can be as serious asthis.数十年来这个病名 意味着 一直主导的形象是 这个疾病可以是如此严重。04:58disbelieved:vt.不信;怀疑/vi.不信;怀疑 Monday:n.星期一 spectrum:n.光谱；频谱；范围；余象 encephalomyelitis:n.内科脑脊髓炎 chronic:adj.慢性的;长期的;习惯性的 syndrome:n.临床综合征;综合症状;并发症状;校验子;并发位dominant:adj.显性的;占优势的;支配的,统治的/n.显性The key symptom we all share is that whenever we exert我们都有的主要的症状是 每当我们过度使用我们的身体或精神,我们就要付出代价,很大的代价。The key symptom we all share is that whenever we exertourselves physically,mentally we pay and we pay hard.的身体或精神,我们就要付出代价,很大的代价。05:09If my husband goes for a run,he might be sore for a coupleof days.如果我丈夫去跑步,他可能会酸痛一两天。05:17If I try to walk half a block,I might be bedridden for a week.如果我尝试走半条街,我可能就会卧床一个星期。05:21www.XiYuS锡育软件It is a perfect custom prison.这是一个完美的订制监狱。05:25I know ballet dancers who cant dance,accountants whocant add,medical students who never became doctors.我认识无法跳舞的芭蕾舞者,无法做加法的会计师,无法成为医生的医科学生。05:28It doesnt matter what you once were;you cant do itanymore.无论你曾经是什么;你都无法再做了。05:36Its been four years,and Ive still never been as well as I wasthe minute before I walked home from my neurologistsoffice.已经四年了,我还是无法恢复到 我从我的神经医师的诊所走回家前的那一分钟的状态。05:41Its estimated that about 15 to 30 million people around theworld have this disease.根据统计,全世界大约有一千五百到三千万人 罹患这个疾病。05:50In the US,where Im from,its about one million people.在美国,我的家乡,大约有一百万人。05:55That makes it roughly twice as common as multiple sclerosis.它大约是多发性硬化的两倍。05:58mentally:adv.精神上,智力上;心理上 bedridden:adj.卧床不起的 accountants:会计人员 as well as:也;和一样;不但而且 the minute:一就 estimated:adj.估计的;预计的;估算的 sclerosis:n.病理硬化,医硬化症;细胞壁硬化Patients can live for decades with the physical function ofsomeone with congestive heart failure.有充血性心力衰竭的患者可以活几十年。有充血性心力衰竭的患者可以活几十年。06:03Twenty-five percent of us are homebound or bedridden,and75 to 85 percent of us cant even work part-time.我们有25%的人无法出门或整日卧床,我们有75到85的人甚至不能做兼职的工作。06:09Yet doctors do not treat us and science does not study us.然而,医生不治疗我们,科学不研究我们。06:17How could a disease this common and this devastating havebeen forgotten by medicine?为何这么常见和如此具毁灭性的疾病,被医学遗忘了呢？06:23When my doctor diagnosed me with conversion disorder,hewas invoking a lineage of ideas about womens bodies thatare over 2,500 years old.当我的医生诊断我的病为转换障碍,他所用的是关于妇女身体的传统想法,那是2,500年以来的想法。06:31The Roman physician Galen thought that hysteria wascaused by sexual deprivation in particularly passionatewomen.罗马时代的加伦医生认为 歇斯底里症是由于缺乏性生活所造成的,特别是热情的妇女。06:39The Greeks thought the uterus would literally dry up andwander around the body in search of moisture,pressing oninternal organs causing symptoms from extreme emotionsto dizziness and paralysis.希腊人认为子宫会干掉 并在身体各处寻找水分,给内脏造成压力-引起极端情绪化的症状,头晕和瘫痪。06:47congestive:adj.充血的,充血性的 homebound:adj.回家的，回家乡的 part-time:adj.兼职的;部分时间的/adv.兼职地;用部分时间地 devastating:adj.毁灭性的；全然的/v.摧毁(devastate的ing形式)；毁坏 invoking:v.援引;祈求;唤起(invoke的ing形式)lineage:n.血统;家系,遗世系 Galen:n.伽林(古希腊名医及有关医术的作家)hysteria:n.癔病,歇斯底里;不正常的兴奋 deprivation:n.剥夺;损失;免职;匮乏;贫困 passionate:adj.热情的;热烈的,激昂的;易怒的 uterus:n.解剖子宫 dry up:干涸;住口 in search of:寻找;搜寻 moisture:n.水分；湿度；潮湿；降雨量 dizziness:n.头晕;头昏眼花 paralysis:n.麻痹;无力;停顿The cure was marriage and motherhood.治愈的方法是结婚和成为母亲。07:02These ideas went largely unchanged for several millenniauntil the 1880s,when neurologists tried to modernize thetheory of hysteria.这些想法从几千年前到1880年代,基本上没有改变,直到神经学家试图将歇斯底里的理论现代化。07:06Sigmund Freud developed a theory that the unconsciousmind could produce physical symptoms when dealing withmemories or emotions too painful for the conscious mind tohandle.弗洛伊德制定了一个理论 那就是潜意识的心可能产生身体症状,当它在处理记忆或情绪 因为太痛苦,清醒的意识无法处理。07:15It converted these emotions into physical symptoms.它将这些情绪转化成生理的症状。07:24This meant that men could now get hysteria,but of coursewomen were still the most susceptible.这意味着男人是可能得到歇斯底里症,但当然妇女还是最容易得的。07:29When I began investigating the history of my own disease,Iwas amazed to find how deep these ideas still run.当我开始调查我的疾病的历史,我很惊讶于发现这些想法仍然深植于人心。07:35In 1934,198 doctors,nurses and staff at the Los AngelesCounty General Hospital became seriously ill.在1934年,在洛杉矶县总医院有198位医师、护士、和医疗工作人员 生了重病。07:43motherhood:n.母性;母亲身份;母亲们(总称)unchanged:adj.未改变的 millennia:n.千年期(millennium的复数);一千年;千年庆典;太平盛世 neurologists:n.神经病学家;神经科专门医师 modernize:vt.使现代化/vi.现代化 Freud:n.佛洛伊德(1856-1939,奥地利心理分析学家及精神病学家)unconscious:adj.无意识的;失去知觉的;不省人事的;未发觉的 conscious:adj.意识到的；故意的；神志清醒的 converted:adj.修改的;改变信仰的/v.转变;改变信仰(convert的过去式和过去分词形式)adj.意识到的；故意的；神志清醒的 converted:adj.修改的;改变信仰的/v.转变;改变信仰(convert的过去式和过去分词形式)susceptible:adj.易受影响的；易感动的；容许的/n.易得病的人 amazed:adj.惊奇的,吃惊的/v.使吃惊;把弄糊涂(amaze的过去分词)County:n.郡，县They had muscle weakness,stiffness in the neck and back,fevers all of the same symptoms I had when I first gotdiagnosed.他们有肌肉无力、颈部和背部僵硬、和发烧等症状 就是我刚被诊断时的所有一样的症状。07:50Doctors thought it was a new form of polio.那时医生认为这是一种新的小儿麻痹症。07:58Since then,there have been more than 70 outbreaksdocumented around the world,of a strikingly similar post-infectious disease.从那时起,世界上有超过70起的发病记录,从那时起,世界上有超过70起的发病记录,几乎和感染后疾病完全相似。08:02All of these outbreaks have tended to disproportionatelyaffect women,and in time,when doctors failed to find theone cause of the disease,they thought that these outbreakswere mass hysteria.这些发病都不成比率地发生在妇女身上。过了一段时间,当医生找不到单一病因,他们认为这些病例是集体性歇斯底里症。08:09Why has this idea had such staying power?为什么这个想法有如此持续力呢？08:21I do think it has to do with sexism,but I also think thatfundamentally,doctors want to help.我觉得这是和性别歧视有关,但我也认为,从根本上说,医生是想幫助。08:25They want to know the answer,and this category allowsdoctors to treat what would otherwise be untreatable,toexplain illnesses that have no explanation.他们想知道答案,用这个分类,让医生治疗这个否则会被当做无法治疗的病,解释这个无法解释的病。08:30stiffness:n.僵硬;坚硬;不自然;顽固 all of the same:仍旧 polio:n.小儿麻痹症(等于poliomyelitis);脊髓灰质炎 outbreaks:n.(战争的)爆发;(疾病的)发作/vi.爆发 documented:adj.备有证明文件的 strikingly:adv.显著地;突出地,引人注目地tended:vi.趋向,倾向;照料,照顾/vt.照料,照管 disproportionately:adv.不成比例地 sexism:n.(针对女性的)性别歧视;男性至上主义 untreatable:adj.无法医治的The problem is that this can cause real harm.问题是这样可能造成真正的伤害。08:41In the 1950s,a psychiatrist named Eliot Slater studied acohort of 85 patients who had been diagnosed with hysteria.在1950年代,一位叫做 艾利耶特斯雷特 的精神科医生,研究了一群85名被诊断为歇斯底里症的患者。08:44Nine years later,12 of them were dead and 30 had becomedisabled.九年后,其中12人死亡,30人已经变成残疾。08:52Many had undiagnosed conditions like multiple sclerosis,epilepsy,brain tumors.许多人有未确诊的情况如多发性硬化、癫痫、脑肿瘤。08:56In 1980,hysteria was officially renamed conversiondisorder.在1980年,歇斯底里症被正式更名为“转换障碍症”。09:03When my neurologist gave me that diagnosis in 2012,he wasechoing Freuds words verbatim,and even today,women are2 to 10 times more likely to receive that diagnosis.我的神经科医师在2012年给我那个诊断,他逐字使用弗洛伊德的话,目前仍然如此。妇女得到这个诊断的比率是男人的2到10倍。09:07The problem with the theory of hysteria or psychogenicillness is that it can never be proven.问题是歇斯底里症或心因性疾病的理论 永远无法被证明。09:20It is by definition the absence of evidence,and in the case ofME,psychological explanations have held back biologicalresearch.它的定义就是缺乏证据,就 ME（肌痛性脑脊髓炎）而言,从心理方面的解释抑制了生物学方面的研究。09:26Slater:n.石板瓦工;等足类甲壳动物 cohort:n.一群;步兵大队;支持者;同生群 undiagnosed:adj.临床未确诊的;尚未找出原因的 epilepsy:n.内科癫痫,癫痫症 renamed:改名 echoing:n.呼应;回音;反照现象/v.回响,呼应(echo的现在分词)verbatim:adv.逐字地/adj.逐字的 psychogenic:adj.精神性的,心理性的 psychological:adj.心理的；心理学的；精神上的All around the world,ME is one of the least funded diseases.世界各地,ME 是一个最少被资助的疾病。09:35In the US,we spend each year roughly 2,500 dollars per AIDSpatient,250 dollars per MS patient and just 5 dollars peryear per ME patient.在美国,我们每年花费约2,500美元在每位艾滋病患者身上,250美元在 MS（多发性硬化）患者身上,但是每年只有5美元在 ME 患者。09:39This was not just lightning.这不只是偶然的。09:54I was not just unlucky.我只是很不幸运。09:56The ignorance surrounding my disease has been a choice,achoice made by the institutions that were supposed toprotect us.围绕着我得到的疾病的无知是选择的结果,由应该保护我们的机构做出的选择。09:58We dont know why ME sometimes runs in families,why youcan get it after almost any infection,from enteroviruses toEpstein-Barr virus to Q fever,or why it affects women at twoto three times the rate of men.我们不知道为什么ME有时有家族性,为什么你几乎可以在任何感染后得到它,从肠道病毒到爱泼斯坦-巴尔病毒到Q发热,或为什么它影响妇女的比率是是男性的两到三倍。10:07This issue is much bigger than just my disease.这个问题比仅仅是我的疾病要大得多。10:21When I first got sick,old friends wer