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
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a common and severe complex multisystem disease with many sufferers waiting years for a diagnosis. The narrative and education to date has neither aligned with the patient experience of this illness, nor communicated the emerging biomedical evidence.
My body misbehaves in so many ways, some of them most unexpected – painful muscles and joints, shooting pains, minimal energy reserves, post activity delayed reaction, haywire temperature regulation, sensitivity to prescription meds. I could go on!
Pronouncing or spelling familiar words can be difficult. Although I once excelled at maths without using a calculator, I now find basic calculations near impossible, even with one. My brain reacts as though I’ve become dyslexic with both words & numbers alike, as I struggle to make sense of what I see written down or even what I say.
My belly
abilities retreat again.
I didn’t want a fixed route or time schedule. I chose 5 places to pass through as a guide, including Llandovery, Devils Bridge, Cadair Idris and Mt Snowdon. I used OS maps and just planned my routes daily as I went. If I got to a split in the path I’d choose the one that looked most interesting!
The most interesting contact was from a lady in the US who had ME. She asked if I was going through Llanddewi Brefi on my route. I replied no. I was going about 15 miles east of there. She said “that’s a shame, my grandmother is buried there and I’d like a photo of her grave.” I replied “I’m going there now, as this is a walk for ME”
I had promised friends that I would finish by going into the sea when I reached my destination. I had arranged to meet a press photographer and friends who had come to take me home at 2 pm. It had gone cold and I had been wearing a fleece and waterproofs on the last part of the journey. I stripped down to my charity T shirt (but kept the thermal top on underneath) and ran into the sea and threw myself under.
I tried 
It was pointed out to me that we absorb about 60% of the chemicals we rub into our skins which is even more worrying when you think that what’s in hair dyes, face creams etc. can easily be absorbed into the brain, damaging our nervous system. There are lots of good alternatives on the market today – usually found in health food shops or online. For people in good health these substances may not cause a big problem, but with ME you have little energy to support your detoxing organs like liver and kidneys, and the substances can build up like poisons in your body. Your liver is a major filter and it just gets blocked.
Every day requires time spent lying down, experiencing pain in my muscles and joints and sensitivity to noise, smells and light.
In November I was rushed into hospital with what was diagnosed as a mini stroke. I was kept in for nearly a month undergoing endless tests, a lumbar puncture and multiple scans. In the end by a process of elimination they diagnosed ME. It was useful having an early diagnosis but they wanted to keep me in hospital because I was so weak. In the end I had to beg to go home. Hospitals are noisy and being in a stroke ward the lights were on all night and there was noise as the other patients were being attended. The lights hurt my eyes and I was very sensitive to sound.
