逆向呈現與過度呈現之間：慢性病患者的身心受苦經驗

Between the dys-appearance and hyper-appearance: Exploring the suffering experiences of the chronic illness patients

10.29844/JLDS.200901.0001

林耀盛(Yao-Sheng Lin)

身體 ； 受苦 ； 控制 ； 慢性病 ； Body ； Suffering ； Control ； Chronic illness

生死學研究

9期（2009 / 01 / 01）

1 - 43

繁體中文

本研究以糖尿病為例，探討慢性病患者的身體觀和控制觀。研究者訪談取樣20位糖尿病個案（女生15位，男生5位），結果顯示慢性病患者的身體觀形構四重意義，包含：(1)身體作為一種「生活形式」；(2)身體作為一種「掛慮即照顧」；(3)身體作為一種「道德－軀體」的經驗；(4)身體作為一種「精神性」底蘊。控制觀方面呈顯兩層意義，包括：(1)「飲食表現為一種身體記憶」；(2)「掛慮他人與照顧自我的相互性」。 慢性病患者的生命本體論，是被疾病經驗重新改寫的生活故事。從個案所湧現的資料，不只是關於疾病的故事，更是因為疾病而改變的生活之故事。本研究顯示，糖尿病患者的身體觀和控制觀所搓揉的被改變的生活經驗主軸，可以詮釋為從「逆向呈現」到「過度呈現」。 綜言之，歷經罹病後的生活經驗，患者將慢性病事件從單純視為一種「醫學檔案」，逐漸意識到慢性病也是一種道德生涯的責任選擇和照顧行動，故慢性病也是一種「社會事件」。

The research is taken the diabetes as the example to discusses chronic illness patients' body experience and sense of control. Multiple semi-structured interviews with twenty patients (5 male and 15 female) at a care site in northern Taiwan were conducted and transcribed. The narrative data were analyzed through interpretative phenomenology. Four superordinate themes emerged from the analysis as the following. 1. The body as the life form. 2. Body attendance means the worrying as the caring processes. 3. The body is endorsed with the moral-somatic experience. 4. The body as the spiritual meaning. The senses of control for the patients included two meanings as following.1. The diet is one kind of bodily memories. 2. It is manifested the dialectical relationships between caring for others and self-care. What the changes for the chronic illness patients is the ontological meaning, their life stories are constructed through the suffering experiences. The life trajectory is transformed from the dys-appearance to hyper-appearance. Through the long term suffering psychophysiological experiences, the patients are aware of the factuality meaning. The chronic illness is not only meant the disease event, it is also meant the moral career. The patients learn how to take responsibility to care themselves and act ethically. For the patients, the chronic illness was constructed as a social event, but it was also a complicated incident beyond the comprehension of the bio-medical model.

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