Difficulties of living with an illness not considered a 'Disease': Focusing on the illness behavior of ME/CFS, 2020, Nojima

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Dolphin

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This isn't biomedical research so I posted it here.

Source: Osaka Human Sciences Vol 6, pp 91-106 Date: March 2020 URL: https://ir.library.osaka-u.ac.jp/repo/ouka/all/73802/

https://ir.library.osaka-u.ac.jp/repo/ouka/all/73802/ohs_06_091.pdf

Difficulties of living with an illness not considered a 'Disease': Focusing on the illness behavior of myalgic encephalomyelitis/ chronic fatigue syndrome patients
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Natsuko Nojima - Graduate School of Human Sciences, Osaka Human Sciences, Osaka University, Japan

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. 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.

-------- (c) 2020 Osaka University
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Note:

This article is the English translation of the original one “Nojima, N., (2014). Difficulties of Living with an Illness Not Considered a “Disease”: Focusing on the Illness Behavior of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. The Japanese Journal of Research on Household Economics, (104), 60-69 (in Japanese)”. The publication of its English translation has been permitted by the Institute for Research on Household Economics.
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I was cringing as I read this, what'll we be accused of this time.... but no, surprisingly fair.

It is a totally different experience. Several members of my family suffer from a well under long term health condition for which there are treatments, but no cure.

Their attitude to illness, relationships with doctors and experience of the benefits system is quite different to mine.

They don't have the huge burden of having to always be your own expert.
 
The abstract looks quite sympathetic to our reality.
Doctor shopping is logical when doctors keep turning you away and you need help. Becoming an active patient is based on necessity because otherwise you get no help.
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.
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In my opinion...

Any patient who is classed as being a "doctor-shopper" by an average doctor is disliked because doctors don't like to believe that any of their number can be utterly useless. But sadly, 50% of doctors are less capable than the average doctor.
 
I automatically knew that "doctor shopping" will not help, and visited only quite some of them at the beginning to rule out things and to be clear.

Sadly such knowledge didn´t help in another sense 15 years later, when I couldn´t keep working (and found easily enough doctors who believed me), to stay mentally healthy throughout. Its a kind of a shy-lie that I picked up myself, like to excuse myself for being ill despite not seeming to really be so, though this paradoxically only became virulent after I was so stupid to allow to get mistreated for one single time.
 
spinoza577 said:
I automatically knew that "doctor shopping" will not help, and visited only quite some of them at the beginning to rule out things and to be clear.
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Yes, I think it's a self limiting behaviour in our case. Either there's little they can or will do for you in many cases. You soon realize you're wearing yourself out for no real benefit.

Then it turns in to an avoidance strategy when it dawns on you they can do you so much damage.
 
All this discussion reminds me of a quote from Dr. Unger of the CDC:
Medscape said:
"We have tried to target our information to primary care because that's the entry point for most patients. Having a negative first encounter can dissuade patients from ever going back. We know from a lot of population-based surveys that a lot of patients have just given up and don't go at all," Unger said.

https://www.medscape.com/viewarticle/899316
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What I found interesting is that the author notes that "the sufferers considered the initial conditions such as being unable to wake up in the morning and diminished thinking ability as common and temporary."

I think that's interesting because the fear-avoidance model assumes that patients somaticize and catastrophize benign bodily sensations and then decrease activity levels inappropriately. Nojima description, however, suggests that patients ignored their symptoms and tried to carry on as good as possible.
 
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