愛滋病感染者之疾病敘說

本研究旨在瞭解愛滋感染者如何與疾病共處，以及愛滋感染者之生活經驗及疾病對他的意義。藉由敘說研究方法，使得愛滋感染者自身得以顯現，因此更加貼近感染者的生活樣貌。期間共與七位南部某醫學中心診斷為愛滋感染者訪談，並運用參與觀察法進行資料收集，再進行敘說分析。其結果顯示由四個範疇：「愛滋的遇見」、「切換的身體」、「烙印的遭逢」、「失序的未來」交織而成愛滋病人生病後的生活圖像。研究發現，愛滋感染者視愛滋病為「異己」，對於這「異己」的命名不外乎使用第三人稱的「它」、或直接說「這個病」，藉由特別的稱呼區隔出不屬於我身體的部分。因擔心烙印而必須隱藏「異己」，努力維持身材與外貌，偽裝身體成為他人可以觀看「健康的」身體取代「生病的」身體，以符合社會文化脈絡的樣貌而被接受。甚至以他人可接受的疾病名，遮蓋不被接受的「愛滋病」。同時，愛滋病感染者亦面臨無法使生命延續、香火傳承，而產生文化角色斷滅下所必須「揹」負起難以抹滅的罪名。愛滋病成為感染者的意外訪客，打亂其生命原有的秩序，所帶來的是活在一個「拖」的未來，期望可以活到疫苗的出現，讓「異己」共生的身體獲得康復的奇蹟，真正擺脫「異己」的糾纏，而回復「健康的」身體。

關鍵字

愛滋病感染者；敘說分析；異己；烙印

並列摘要

The purpose of this study is to realize the lived experience of patients live with AIDS including what AIDS mean to them and how they deal with the disease. By using narrative research with in-depth interview and participant observation, the researcher conducted research at a medical center located at southern Taiwan. 7 AIDS male patients were recruited to participant this study. After using narrative analysis, the results include four major themes: “meeting AIDS”, “switching body”, “encountering stigma” and “distorting future”, which have intertwined the living image after suffering the disease. We found they considered AIDS as “alienation” by use “it” or “the disease” to represent AIDS. By this special way, they can separate those parts of body not belonging to them. Because they feared of stigma, they concealed the “alienation” and try to keep their body and appearance look healthy to replace the sick body and to fit the demands of our society and culture. They even used other acceptable disease term to replace the unacceptable disease- “AIDS” in order to have the capacity to face other people temporarily. In the meanwhile, AIDS patients can not have a heir to keep ancestor line. It is also an unforgivable sin for AIDS patients who can not have offspring and have to destruct their cultural role. AIDS became an accidental visitor to breach their prior life order and let them survive with a protracted future till the discovery of HIV vaccine, which can let them free from the tangle of AIDS and wait for the miracle to recover the symbiotic body with “alienation” to health.