Difficulties of living with an illness not considered a “Disease”: Focusing on the illness behavior of myalgic encephalomyelitis/chronic fatigue syndrome patients, by Natsuko Nojima in Departmental Bulletin Paper, Osaka Human Sciences Vol.6


Paper abstract:

This paper focuses on the illness behavior of patients with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) to clarify difficulties in their lives through comparison with a five-stage model of illness behavior.

[Suchman is the one who describes the five stages of illness behavior namely: Symptoms, sick role, medical care contact, dependent client role, and recovery.] https://tinyurl.com/ycbldvx8

ME/CFS is considered a typical disease with medically unexplained symptoms (MUS), which refers to a condition where symptoms suggest the presence of a physical disease whose cause cannot be found by examination. Although previous studies of ME/CFS have focused on specific events, such as diagnosis, and the psychological changes that accompany them, the chronological events experienced by patients and the transformation of the problems they face have not been adequately grasped.

This paper analyzes ME/CFS patients’ illness behavior through interviews and explores the difficulties patients face at each stage of illness behavior. In ME/CFS patients’ narratives, their illness behavior shows complexities of going back and forth between stages, rather than progressing step by step like an acute illness.

The seemingly excessive treatment behavior called “doctor shopping” is actually linked to doctors’ ignorance, suspicion, and incomprehension of diseases without a biomarker, rather than the desire of the patient to dispel an “inappropriate” label of laziness and mental illness. Indeed, it would be more accurate to say that interviewees were not accepted by several hospitals. In addition, since patients are often suspected of not being really ill even after diagnosis, they cannot experience the dependent-patient role.

Therefore, by becoming an “active patient” by themselves, ME/CFS patients must undertake the “independent-patient role” to secure necessary treatment and welfare services. It should be noted that these patient behaviors are not undertaken for secondary gain but are due to their having no other way to receive necessary care.

NB Full paper not available

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