WEBVTT

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大家好

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多謝

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[ Jennifer Brea 對聲音敏感

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現場觀眾用美式手語歡迎 ]

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呢個係五年前嘅我

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當時我係哈佛嘅博士生

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鍾意旅行

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啱啱同我生命中最愛嘅人訂婚

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嗰陣我28歲，同大部份人一樣

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覺得自己好健康、百毒不侵

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有一日，我發燒燒到華氏 104.7 度

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其實我應該要去睇醫生

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不過，我一生中未患過病

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而且我知，一般如果你受病毒感染

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你留喺屋企，煲啲雞湯

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幾日之內就會好返

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但係，呢次無好返

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發燒之後

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三個星期都頭暈，無辦法出門口

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我行路會撞落門框度

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我要扶住墻先可以行去浴室

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嗰年春天，我病完又病

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每一次我去睇醫生

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佢都話絕對無問題

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佢手上嘅化驗報告

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都話我好正常

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我所有嘅癥狀

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我都可以形容

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但無人睇到

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我知聽起嚟好傻

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但係你點都會搵個原因畀自己

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我以為可能係老化

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或者呢個就係年過 25 嘅情況

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（笑聲）

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跟住，神經癥狀開始出現

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有時，我發現我畫唔到圓形嘅右邊

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有時我會講唔到嘢，甚至郁唔到

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我睇過所有專科

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傳染病科、皮膚科、內分泌科、心臟科

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我甚至睇埋精神科

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精神科醫生話︰「你好明顯病咗，

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但同精神科無關。

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我希望其他醫生搵到係咩事。」

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第二日，神經科醫生診斷出
我患咗轉化症

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佢話所有癥狀——

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發燒、喉嚨痛、鼻竇炎

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所有腸胃、神經同心臟癥狀——

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都因為某啲我唔記得嘅情緒創傷引起

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佢話啲病癥都係真嘅

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但都冇生理原因解釋

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我曾經受訓做社會科學家

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我讀過統計學、概率論

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數學模型、實驗設計

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雖然我唔可以否定神經科醫生嘅診斷

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但我又覺得醫生嘅診斷唔係真嘅

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但知識話畀我聽事實多數違反直覺

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事實好容易被自己想相信嘅嘢矇蔽

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所以我諗可能佢係啱嘅

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嗰日，我做咗個小實驗

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我喺診所行咗兩英里返屋企

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我對腳有種好奇怪、好似觸電嘅痛

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沿途，我仔細咁諗

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我嘅心理點樣令呢一切發生

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當我行入門口

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我跌低咗

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個腦同脊髓好似火燒咁

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條頸僵硬到下巴掂唔到胸口

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同埋，無論幾細嘅聲都好——

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就算床單摩擦

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老公赤腳喺隔離房行嘅聲音——

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都會令我有難以忍受嘅痛楚

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跟住兩年嘅大部分時間
我都喺床上度過

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點解我嘅醫生會錯得咁離譜？

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我覺得我患咗一種罕見嘅病

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連醫生都未見過嘅病

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之後我上網

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搵到嚟自世界各地成千上萬嘅人

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原來都有同樣嘅癥狀

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同樣需要隔離

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同樣覺得難以置信

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有啲人仲可以工作

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但夜晚同周未都一定要留喺床上

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只係為咗下星期一可以返工

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至於其他人

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有啲病得好嚴重

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要喺完全黑暗嘅環境下生活

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無辦法忍受人聲

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或者伴侶嘅觸摸

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我被診斷患上肌痛性腦脊髓炎

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即係你可能聽過嘅「慢性疲勞症候群」

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幾十年嚟

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呢個名就代表住
一種可以嚴重成咁嘅疾病

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一樣我哋都有共同病徵就係

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當我哋耗盡全力，無論體力上定精神上

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就要付出代價，好大代價

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就好似如果我老公去跑步

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佢可能會喉嚨痛幾日

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或者如果我行過半個街口

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大概就要瞓喺床度一個星期一樣

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呢個可以話係完美嘅軟禁

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我識得跳唔到舞嘅芭蕾舞家

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計唔到數嘅會計師

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永遠都做唔成醫生嘅醫科生

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你曾經係咩唔重要

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因為你都無辦法繼續做

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過咗四年

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我仲未恢復到當日
由診所行返屋企前咁健康

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據估計，全球大概有 
1,500 到 3,000 萬人患咗呢種病

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喺我嘅國家，美國
就有一百萬人患咗呢種病

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大約係患上多發性硬化嘅兩倍

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病人可以生存到幾十年

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但佢哋嘅活動能力就好似

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患咗充血性心力衰竭咁

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有 25% 嘅病人要留喺屋企或者喺床上

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75% 至 85% 甚至唔可以做兼職

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事實上，醫生唔會醫我哋

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科學家唔會研究我哋

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點解呢種咁普遍同埋慘嘅病
會被醫學界遺忘？

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當我嘅醫生診斷出我患咗轉化症

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佢指向緊

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一啲有 2,500 年歷史
有關女性身體嘅諗法

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古羅馬醫生蓋倫認為

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歇斯底里症嘅成因係性渴求
尤其係熱情嘅女性

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蓋倫認為子宮會變乾

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並且喺身體遊走搵水份

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擠壓內臟——

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無錯——

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引致極端情緒

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甚至頭暈同癱瘓

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當時嘅療法係結婚同生仔

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呢種諗法維持到 1880 年代

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當時嘅神經病學家
嘗試更新歇斯底里症嘅理論

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佛洛伊德發展咗一個理論

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佢話︰當明意識處理唔到
一啲太痛苦嘅記憶或者情緒

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潛意識就會產生生理徵狀

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將情緒轉化為生理徵狀

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即係，依架男性都會患歇斯底里症

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但當然女性比較容易受影響

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當我開始睇返我呢個病嘅歷史

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我好驚訝呢啲舊諗法仍然深入民心

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1934 年喺洛杉磯縣綜合醫院

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198 個醫生、護士同醫院員工
病得好嚴重

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佢哋肌肉衰弱，頸同背脊僵硬，又發燒

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同我當初病一樣

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醫生以為係變種嘅小兒麻痹症

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自從嗰次之後

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全球錄得超過 70 次
好相似嘅後感染性疾病個案

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所有爆發傾向影響女性

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當時醫生搵唔到病因

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於是認為係大規模嘅歇斯底里症爆發

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點解呢個諗法可以保持咁耐？

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我真係覺得同性別歧視有關

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但係我諗醫生係想幫手

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佢哋想知答案

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但呢個講法至少可以畀醫生醫人

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畀醫生去解釋一啲解釋唔到嘅疾病

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問題係，咁樣會帶嚟真正嘅傷害

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1950 年代
一個叫 Eliot Slater 嘅精神科醫生

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研究咗 85 個
被診斷出患上歇斯底里症嘅病人

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9 年之後，12 個死咗，30 個殘障

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好多人有診斷唔到嘅病

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好似多發性硬化、癲癇、腦腫瘤

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喺 1980 年

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歇斯底里症正式改名為「轉化症」

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神經科醫生喺 2012 年幫我診症嘅時候

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佢完全跟隨緊佛洛伊德嘅說話

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今時今日

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女性被診斷呢個病嘅機會
比男性多 2-10 倍

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問題係歇斯底里理論或者心理病理論
係永遠無辦法證實

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個理論本身係無證據

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以肌痛性腦脊髓炎為例，你會發現

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心理學嘅解釋窒礙生物學嘅研究

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喺全球，肌痛性腦脊髓炎
係其中一個研究資助最少嘅病

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喺美國，每年喺每個愛滋病人身上

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用咗大概 2,500 美金

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多發性硬化症病人就 250 美金

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而肌痛性腦脊髓炎病人就只用 5 美金

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呢件事唔係突然間嚟

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我唔只係唔好彩

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無視我呢個病係一個決定

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係由應該要保護我哋嘅機構
做嘅一個決定

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我哋唔知點解有時肌痛性腦脊髓炎
喺家族入面發生

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唔知點解你幾乎每次感染

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腸道病毒、人類疱疹病毒第四型
以至到 Q 型流感嘅時候

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肌痛性腦脊髓炎就會病發

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又或者點解佢影響女性
比男性多兩至三倍

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呢啲嘢比我嘅病重要得多

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當初我病嘅時候

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舊朋友都有樂意幫我

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之後我發覺自己
同一班就嚟 30 歲嘅女士一樣

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身體面臨崩潰

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最得人驚嘅係到底我哋面對緊嘅麻煩

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有幾多係被認真咁對待

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我知道有個女士
患咗一種自身免疫結締組織病

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好多年都係話問題喺佢個頭度

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由發病到診斷

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佢條食道完完全全被破壞

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佢無辦法再食嘢

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另一個患咗卵巢癌嘅女士

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好多年都係話佢只係提早咗更年期

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我有一個大學朋友

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佢腦腫瘤曾經被誤診為焦慮症

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呢個就係令我擔心嘅原因︰

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自從 1950 年代開始

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患自身免疫病嘅比例增加三倍

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45% 最後確診患咗
一種已知嘅自身免疫病嘅人

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初時被診斷患咗軟骨炎

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就好似以前嘅歇斯底里症咁

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所有診斷都同性別拉上關係

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75% 嘅自身免疫病嘅病人都係女性

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某啲疾病甚至 90% 都係女性

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就算女性係容易患上呢啲病

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呢啲都唔係女性專有嘅病

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肌痛性脊髓炎出現喺小朋友

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亦出現喺過百萬男性身上

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正如某個病人同我講

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我哋畀呢個病侵擾我哋……

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如果你係女性，人哋就話你誇大癥狀

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但如果你係男性
人哋就叫你堅強、振作

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男性甚至更難診斷

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雖然我嘅頭腦唔似以前咁

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但無論點

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我仲抱有希望

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有好多病一開始都被認為係精神方面嘅

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直至科學發現佢哋嘅生物機制

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喺腦電圖測到大腦異常活動之前

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癲癇病人可能被強制送入精神病院

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喺斷層掃描同磁力共振發現腦病變之前

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多發性硬化有可能誤診為
歇斯底里性麻痺

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以前，我哋認為胃潰瘍
只係因為壓力而形成

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到依架我哋發現
幽門螺旋菌先係罪魁禍首

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肌痛性腦脊髓炎從未好似其他病咁
得到科學嘅幫助

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但係呢個情況已經開始改變

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喺德國，科學家開始
搵自身免疫病嘅證據

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日本搵緊腦炎症嘅證據

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喺美國，史丹福科學家喺度搵緊

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能量代謝達16 個標準差嘅異常情況

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喺挪威，研究人員

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為一種喺某啲病人身上
可以完全緩解癌症嘅藥

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進行緊第三階段嘅臨床實驗

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仲畀到希望我嘅就係病人嘅韌力

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我哋透過網絡走埋一齊

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分享自己嘅故事

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我哋讀晒現有嘅研究

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我哋用自己嚟做實驗

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我哋要成為自己嘅科學家同醫生

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我哋一定要咁做

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我慢慢咁喺呢度加 5%，嗰度加 5%

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直到有一日，我可以行出屋企

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我仍然要做一啲荒謬嘅訣擇︰

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我今日坐係花園 15 分鐘，定係洗頭好？

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但係我仍然相信我可以好返

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我除咗有一個病咗嘅身體，咩都好好

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得到正確嘅幫助，或者有一日我會好返

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我同世界各地嘅病人一齊對抗呢個病

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我哋將美好嘅事物填滿空虛

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但咁係唔夠

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我仍然唔知我仲可唔可以跑、行路

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依架呢啲嘢只可以喺夢度做

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但係嚟到呢度我都好感恩

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進展係慢

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有時好

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有時壞

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但係每一日都好一啲

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我記得匿埋係睡房好幾個月
不見天日嘅感覺

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我以為我會死喺嗰度

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但係我今日喺呢度，同你哋一齊

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呢個就係奇蹟

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如果我唔係幸運嘅一群

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如果我喺互聯網出現之前病

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如果我搵唔到同病相憐嘅人

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我唔知我會點

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大概我會好似好多其他人咁已經自殺

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如果我哋幾十年前問啱問題

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可以救返幾多人？

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如果今日我哋真真正正開始

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又可以救返幾多人？

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如果我哋唔改變我哋嘅體制同文化

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就算搵到我個病嘅真正原因

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我哋都會喺其他病重蹈覆轍

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呢個病教識咗我
科學同醫學都深受人類追求嘅

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醫生、科學家同政策制訂者
都同普通人一樣受偏見影響

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我哋要喺微細之處諗諗女性嘅健康

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我哋嘅免疫系統同身體其他部分一樣
需要顧及

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我哋要聽病人嘅故事

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亦要肯講「我唔知」

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「我唔知」係一件美好嘅事

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「我唔知」先會有探索

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如果我哋做到「我唔知」

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如果我哋可以接觸眾多嘅未知

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而唔係怕當中嘅不確定性

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我哋或者可以讚歎地欣賞其中

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多謝

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多謝