Soon after Suzanne O’Sullivan had left medical school in Dublin, she met a patient named Yvonne, whose mysterious illness appeared to bear little relation to any of her previous studies.
在奥沙利文•苏珊娜(Suzanne O’Sullivan)离开都柏林一所医学院后不久,她遇到了一位名叫伊冯(Yvonne)的病人,伊冯所患的神秘疾病似乎与她以前的任何研究都扯不上关系。
Yvonne, she was told, had been stacking the fridges in a supermarket when a colleague had accidentally sprayed a fine mist of window cleaner in her face. She tried to wash her eyes, left work and went to bed early, hoping they would feel less sore the next day. But when she woke up, her vision was worse – everything was so blurry she struggled to read the time on the clock. Twenty-four hours later, she could not tell night from day.
据伊冯所说,她当时在一家超市向冰箱里堆放物品,一个同事无意间不小心将玻璃清洁剂的喷雾喷到了她的脸上。她试着去洗眼睛,并提早下班离开工作回家休息,希望眼睛疼痛能够有所好转。但第二天当她醒来的时候,她的视力变得更糟了,看什么都很模糊,以至于她要竭尽全力才能看清闹钟上的时间。24小时之后情况已经恶化到她无法辨认白天黑夜了。
O’Sullivan’s colleagues assumed Yvonne was faking it, perhaps for some kind of lawsuit. “There’ll be no Oscar for that performance,” one muttered
奥沙利文的同事们认为伊冯是装病,以便于进行诉讼。“这种表演不会得奥斯卡奖,”一个员工嘟囔着。
Except after six months of examinations, doctors could find nothing wrong with Yvonne’s eyes. She was eventually admitted to the neurology unit where O’Sullivan was working. During the observations, Yvonne’s eyes would flicker between her husband and the doctors; as the consultant moved an ophthalmoscope close to her eyes, she blinked. It certainly seemed like her eyes were responding to her surroundings, yet she continued to claim that she was enveloped in an impenetrable darkness.
经过长达六个月的检查,医生始终也没有发现伊冯的眼睛有问题。她最终来到了奥沙利文所工作的神经科进行检查。观测期间,医生发现伊冯的眼睛在看到她丈夫和医生的时候会颤动;当医疗顾问将检目镜(ophthalmoscope)接近她的眼睛,她的眼睛会眨动。很明显伊冯的眼睛对于周遭的环境能够做出反应,但据她本人的说法,她的眼睛始终被一团漆黑笼罩。
O’Sullivan’s colleagues assumed she was faking it, perhaps for some kind of lawsuit. “There’ll be no Oscar for that performance,” one muttered after they had left the ward. O’Sullivan herself was unconvinced. “I liked Yvonne. I felt sorry for her. But I did not believe she was blind,” she writes in her new book It’s All in Your Head, recently shortlisted for the Wellcome Book Prize.
奥沙利文的同事们认为伊冯是装病,以便于进行诉讼。“这种表演不会得奥斯卡奖,”一个员工嘟囔着。奥沙利文自己不服气。“我喜欢伊冯。我为她感到难过。但我不相信她的眼睛瞎了,”她在她的新书《一切都源于你的想象》中写到,该书最近入围了英国惠康图书奖(Wellcome Book Prize)。
Now she knows better. At the Royal London Hospital she has become an expert in “psychosomatic” illnesses. She has treated people who are paralysed from the waist down, or who have such severe cramp in their fingers that their hand has become little more than a claw; one woman could not even empty her bladder without a medical catheter. Yet when doctors look, they can find no physiological cause – suggesting the problem originates in the mind, not the body.
现在她对这种情况有了更深的了解。在伦敦皇家医院(Royal London Hospital),她已经成为了一个“心身疾病”的专家。她治疗那些下半身瘫痪,或有严重抽筋症状的手指,他们的手已成为一个爪子形状;一个女人甚至没有医用导管就无法排尿。对于这些症状,医生却无法找到任何生理病因,这表明问题源于头脑,而不是身体。
In this light, it’s perfectly possible that Yvonne really wasn’t conscious of what she was seeing – somehow, her unconscious mind was discarding the information before she became aware of it.
鉴于以上这种情况,伊冯或许有可能无法意识到自己能够看到的东西,不知怎的,在她能够意识到之前,她的潜意识在不知不觉中就将信息过滤掉了。
Keen to know more, I spoke to O’Sullivan about her career and her recent book detailing these remarkable case studies.
为了了解更多的信息,我采访到了奥沙利文,谈她的职业生涯,以及她在新书中详细介绍的这些典型案例。
Although O’Sullivan had seen patients like Yvonne from the very beginning of her career, the interest intensified once she started specialising in epilepsy. Patients would often come to her suffering from debilitating seizures that left them writhing around on the floor, limbs flailing, helpless, yet when they came in to the hospital for neurological tests, they showed none of the signature brain activity of epilepsy; they were “psychogenic” seizures. “It became obvious no one is talking about these problems that are consistently common, but which are getting no attention in medical journals or medical conferences,” she says. “This is a very neglected area.”
他们真的遭受某种程度的残疾。他们比大多数身体疾病的人都更残疾。
That silence brings stigma, meaning that most patients end up feeling insulted by the diagnosis. “Their first reaction is ‘you think I’m doing it on purpose’ or ‘you think it’s not real’ or ‘I could stop it if wanted’,” O’Sullivan says. “There’s this perception that there is a degree of wilfulness”.
虽然奥沙利文已经在早期治疗类似伊冯这样的患者,当她开始专攻癫痫研究的时候她的职业兴趣进一步提升了。患者早期的症状通常有满地打滚抽筋,肢体痉挛而无助,但当他们来到医院进行神经学检查时,他们发现癫痫患者脑部活动并没有出现那些典型的癫痫症状;他们是“心因性”的癫痫发作。她说:“很明显没有人讨论这些普遍存在的问题,在医学杂志或医学会议上没有受到重视”。她说,“这个领域的研究常常被人忽视。”
If you find their symptoms hard to believe, consider the many profound ways that your emotions already move your body. O’Sullivan points out that every time we cry, or laugh, or shake with anger, if we feel so sad that it is hard to lift ourselves from our bed, or queasy with nausea after we hear of a friend’s food poisoning, then we are experiencing psychosomatic phenomena first-hand. In fact, up to 30% of people visiting their family doctor or GP (and 50% of women seeing their gynaecologist) are enduring symptoms that cannot be explained with a physical cause – suggesting they may be psychosomatic in origin. The difference is that for most of us those feelings pass and we can return to our normal lives, but for O’Sullivan’s patients they are exaggerated and chronic, lasting months, years, even a lifetime.
这种沉默带来了耻辱,这意味着大多数患者最终因为诊断结果而感到被羞辱。奥沙利文说:“他们的第一反应是,你认为我是故意的,或者你认为这不是真的”或者“我可以阻止它”。“这种看法认为病人有一定程度的任性”。
They really are disabled. They are more disabled than most people with a physical disease
如果你很难相信他们的症状,那么想一想你的情绪如何在很多方面深刻的影响着你身体状况的。奥沙利文指出,每一次我们哭,或笑,或气得发抖,如果我们很悲伤,很难起床,或听到一个朋友的食物中毒后感到的反胃恶心,这都是心身现象所带来的反应。事实上,30% 去看家庭医生或全科医生的人表示(和50%看妇科医生的女性病患)经历了难以用身体疾病解释的症状——暗示它们可能起源于心理致病的因素。不同的是,对我们大多数人来说,这些感觉过去之后我们可以恢复到正常生活,但对奥沙利文的患者,这些症状被放大,拖长,持续数月,数年,甚至一辈子。
She emphasises that the psychological origin does not make the blindness, fatigue, seizures or paralysis any less debilitating. “They really are disabled. They are more disabled than most people with a physical disease.”
她强调,心理根源或许使失明、疲劳、癫痫或瘫痪等症状更令人感到残疾。他们真的遭受某种程度的残疾。他们比大多数身体疾病的人都更残疾。
Consider Camilla, a lawyer in London, who had been diagnosed with epilepsy before O’Sullivan managed to show that it was psychogenic. She described how humiliating she found the seizures; how people try to help by sitting on her to stop her limbs from flailing about, and stick their fingers down her throat to stop her choking; one man knelt beside her, asking if she was OK, before stealing her mobile phone. “But do you know what happens all the time? People video me on their mobile phones and walk away laughing,” she told O’Sullivan. The more you know about these patients, the harder it is to believe that anyone would deliberately expose themselves to this humiliation.
例如伦敦的一个律师卡米拉(Camilla),在被奥沙利文证明为心因性疾病之前,她曾经被诊断出患有癫痫。她描述了癫痫发作所带来的羞辱;有人试图坐在她身上以阻止她四肢乱动,并坚持用他们的手指伸进着她的喉咙阻止她窒息;一个人跪在她旁边,问她是否还好,然后偷走了她的手机。“但是你知道大部分情况下发生了什么吗?人们用手机拍摄我的视频然后笑着走开,“她告诉奥沙利文。你对这些病人了解的越多,就越难相信任何人都会故意使自己忍受这样的耻辱。
O’Sullivan has nevertheless met a few fakers, such as Judith, who claimed to be suffering seizures as the side-effect of chemotherapy for leukaemia years before. Hoping to get to the bottom of the story, O’Sullivan called her into a hospital ward, where a video camera could film a seizure when or if it occurred. Sure enough, at 9:15 in the evening, a nurse found Judith lying on the floor unconscious, falling so hard that she had apparently fractured her hand. When O’Sullivan played back the video, however, she saw there had been no seizure at all. Judith had simply raised her hand and hit it hard against the wall four times, before lying down gently on the floor, pulling down a plate with her to attract the nurse. Indeed, looking at the medical records, it became clear that Judith had never suffered from leukaemia, either.
什么样的精神折磨会使人觉得发生了疾病?
What kind of mental torment would make someone invent an illness?
奥沙利文也曾经遇到过一些骗子,如朱迪思(Judith),她自称患有白血病化疗的副作用之一癫痫。为了能够进行深入调查,奥沙利文把她叫进了一家医院的病房,使用视频摄像机监控她是否和发生痉挛时的情况。果然,在晚上9:15,护士发现朱迪思躺在地上不省人事,并因为从高处跌落而造成手骨折断。当奥沙利文重新查看录像时却发现病人并没有发生痉挛。朱迪思只是举起了手,朝着墙壁猛击了四次,然后躺在地板上,过程中打碎了一个盘子吸引护士的注意。事实上,从这些医疗记录看来,很显然朱迪思也从来没有患过白血病。
Although such patients with “factitious” illnesses may add to the stigma of people like Camilla or Yvonne, O’Sullivan still feels compassion for these people. After all, what kind of mental torment would make someone behave in this way? Even if Judith hadn’t suffered from leukaemia, perhaps she had witnessed it in someone else – an experience she found difficult to process in any other way? “Factitious illness is one of most serious disorders I know,” O’Sullivan says.
虽然“人造”疾病可能会加深人们对于像卡米拉或伊冯这样的患者不好的印象,奥沙利文仍然对这些人感到同情。毕竟,什么样的精神折磨会使人这样做?即使朱迪思没有患上白血病,也许她在从别人身上见过这样的症状——一种她在其他方式中难以处理的经历?“人造的疾病是我所知道的最严重的疾病,”奥沙利文说。
There is currently precious little research on the best way to treat psychosomatic illness, but she tends to refer her patients to psychiatrists or to a cognitive behavioural therapist (CBT) who might be able to unknot the distress or trauma that is leading to the illness.
目前很少有人研究治疗心身疾病的最好方式,但奥沙利文常常建议她的病人去看精神科医生或进行认知行为治疗(cognitive behavioural therapist)。这种疗法或许可以解开致病痛苦或心灵创伤。
And there are some real success stories. Not all cases can be pinned to a specific event, but Camilla realised that her seizures may have been linked to the death of her young son, setting her on the path to recovery. Yvonne, meanwhile, seemed to have been struggling to juggle the stresses of work, children, and an overbearing husband, and as she learned to cope with those upsets, her sight slowly returned.
有一些真正成功故事。并非所有的病例都可以归咎于一个特定的事件,但卡米拉意识到她的癫痫发作可能与她的小儿子的死亡有关,意识到这点有助于她慢慢恢复。同时伊冯似乎一直在努力平衡工作,孩子和专横的丈夫之间的关系,当她学会了应付那些烦心的事,她的视力慢慢恢复。
Patients with paralysis or muscle spasms can also respond well to physiotherapy. “They need to learn how to use their legs again,” O’Sullivan says. It’s often an uphill struggle; particularly with seizures, relapse is common. “We have to give ongoing support and reassurance.”
瘫痪或肌肉痉挛患者也对理疗有很好的反应。“他们需要学习如何使用他们的腿,”奥沙利文说。这通常是一场艰苦的斗争,特别是癫痫发作,复发是常见的。“我们必须给予持续的支持和保证。”
One of O’Sullivan’s biggest concerns is the rate of misdiagnosis – doctors overlooking the psychological origin of these illnesses, instead prescribing the patients drugs, or even admitting them for harmful surgery. She says this may come from the doctors’ fear; somehow, it seems more serious missing a physical cause of an illness than a psychological cause – yet the damage can be just as great.
奥沙利文最大的担忧之一是误诊率:医生可以忽略这些疾病的心理根源,而不是给病人开药,甚至是承认这些错误治疗的危害性。她说,这可能来自于医生的恐惧,不知何故,人们似乎更容易忽略一个疾病的心理因素而不是身体症状,但两者的损害时同样大的。
“The people who have been told they have epilepsy – they will be put on a toxic medication for at least a couple of years, before they accept it’s not going to work.” Over that time, the condition has become a part of the patients’ life – they’ve told their friends, families, and employer, making it much harder to accept the new diagnosis. “You become wedded to it through your own belief and the doctor’s belief,” O’Sullivan says. “You are getting treatment you don’t need for a disease you don’t have, and you are deprived of the treatment you do need – you’re not referred for CBT, a physiotherapist or a psychiatrist.”
被诊断为癫痫患者的人通常被告知要进行最少两年的药物治疗,但仍然难以奏效。“在那个时候,这些条件已经成为病人的生活的一部分,他们告诉他们的朋友,家庭和雇主,以至于更难以接受新的诊断结果。“通过自己相信和医生的诊断,你已经和诊断结果密不可分,”奥沙利文说。“你接受不需要的治疗,诊治不存在的病,你失去了你真正需要的治疗——你没有接受CBT治疗,或看物理治疗师或精神科医生。”
Perhaps inspired by meeting Yvonne at the start of her career, she would like to raise awareness of psychosomatic illnesses at the earliest stages of a doctor’s training. “My feeling is that it needs to start at medical school-level,” she says. “I must have encountered these patients thousands of times but I have no recollection of being told how I should help them.”
也许受到伊冯案例的启发,奥沙利文希望能在在医生训练的早期阶段提高对心身疾病的认识。“我的感觉是,需要从医学院开始,”她说。“我一定无数次遇到类似的病状,但我不记得有人告诉我该如何帮助他们。”
For the time being, she hopes that her book will at least spark that conversation; so far, she has already found that a small number of patients are becoming more accepting of the diagnosis, and are less afraid of the stigma attached to it. “I have my fingers crossed that it will be a talking point, that people will feel less ashamed.”
暂时,她希望她的书至少能激起相关讨论,到目前为止,她已经发现了少量的病人变得越来越接受诊断结果,并且对它所带来的耻辱感也不那么害怕了。“我希望这成为一个讨论的要点,人们不会因此感到羞愧。”