“残疾悲伤”:一个病人对自己残疾的寓言式表达

A. Moghadasi
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引用次数: 1

摘要

多发性硬化症(MS)是一种中枢神经系统自身免疫性致残性疾病,可导致多种症状。尽管多发性硬化症最常见的形式是复发-缓解,但由于疾病的自然病程,大多数患者将来也会出现残疾。1,2疾病发作大多发生在27岁。3因此,考虑到疾病的症状和并发症,它实际上会影响患者的一生。不幸的是,对于多发性硬化症患者对其疾病的看法,没有任何准确的研究。然而,在日常治疗工作中,患者表达的严重不适的一个众所周知的例子是对未来残疾的恐惧。当一个人开始丧失能力时,这个问题就会加剧。当患者出现行走障碍和日常活动减少时,思考未来成为他/她的主要担忧之一。大多数患者在就诊时都表达了这些担忧。然而,具有诗歌、写故事或绘画等其他能力的患者可以更有效地表达担忧。这里报道的这幅画是一位病人对自己残疾的寓言式看法。患者是一名37岁的女性,患有多发性硬化症已有15年。她的病始于右眼视神经炎。在此期间,她有六次发作,9年后,她的疾病进入了继发性进展阶段。她在这一阶段的症状是右下肢无力,并逐渐恶化,如行走困难。现在,没有人帮助,她无法行走。这种残疾影响了她生活的方方面面,大大降低了她的生活质量。她从小就对绘画感兴趣,并以非专业艺术家的身份进行绘画。据患者自己说,她在这里报道的一幅画(图1)反映了她对自己逐渐残疾的看法和悲伤。她认为她应该告别自己的能力和过去的好日子。她把自己描绘成一个(当她可以不受限制地走路时)随着气球离开的人
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“Disability Grief”: A patient’s allegorical expression of her disability
Multiple sclerosis (MS) is an autoimmune disabling disease of the central nervous system, and can lead to a wide range of symptoms. Although the most common form of MS is relapsing-remitting, most of the patients also will develop disability in the future due to the natural course of the disease.1,2 The disease onset mostly occurs in 27 years of age.3 Therefore, considering the symptoms and complications of the disease, it can virtually affect the whole life of the patient. Unfortunately, there is not any accurate study of the opinions of patients with MS regarding their illness. However, in the daily work of treatment, one of the well-known cases of severe discomfort expressed by patients is the fear of future disability. This issue is aggravated when a person starts to lose abilities. When the patient experiences disability in walking and a decrease in his/her daily activities, thinking about the future becomes one of his/her major concerns. Most patients express these concerns in their visits. However, a patient who has other abilities such as poetry, writing a story, or painting, can more effectively portray concerns. The painting reported here is the allegorical view of a patient about her disability. The patient is a 37-year-old woman who has had MS for 15 years. Her illness started with the right eye optic neuritis. She has had six attacks during this period and, after 9 years, her disease entered the secondary progressive phase. Her symptom in this stage was the weakness of the right lower extremity, which was gradually deteriorating such as difficulty in walking. Now, she is unable to walk without help. This disability has affected all aspects of her life, and has greatly diminished her quality of life. She has been interested in drawing since childhood, and has drawn as a non-professional artist. One of her paintings reported here (Figure 1), according to the patient herself, reflects her perception and grief over her progressive disability. She believes that she should say goodbye to her ability and good days of the past. She painted herself as someone (when she could walk unrestrictedly) moving away along with a balloon
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来源期刊
Iranian Journal of Neurology
Iranian Journal of Neurology CLINICAL NEUROLOGY-
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