Reclaiming Embodiment in Medically Unexplained Physical Symptoms (MUPS)*

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‘One of the biggest challenges faced by people who have chronic illnesses is that of being believed. Of being listened to by professionals, and finding people who understand that conditions like fibromyalgia, M.E. [myalgic encephalomyelitis] and so on are real, physical illnesses.’ This heartfelt cry stems from Emsy’s Internet blog on medically unexplained physical symptoms (MUPS).1 If you browse the Internet, you will soon discover that there are many people like Emsy: people who (chronically) suffer from bodily pain or fatigue, while their suffering is not recognized as a ‘real, physical illness.’ Since MUPS can imply any kind of physical distress, it rather involves a general ‘working diagnosis’ than a specific diagnosis (Olde Hartman et al. 2013). Examples of MUPS include chronic fatigue, musculoskeletal pain, headache, stomachache, nausea, palpitations, and dizziness.

Figures about estimated prevalence of MUPS are widely divergent, depending on different types of MUPS and different medical disciplines. It is estimated that for about 40 percent of physical complaints that are presented to a general practitioner no specific cause can be found (Steinbrecher, Koerber, Frieser, and Hiller 2011). Even though a large number of unexplained complaints disappear automatically or can be easily treated by some household remedy, chronic MUPS form a major challenge for contemporary health care. Since MUPS are hard to treat, the majority of patients are major ‘consumers’of medical care, which causes a considerable economic burden for society (Konnopka et al. 2012). On the individual level, MUPS often involve poor communication between therapists and patients, which, on the one hand, causes feelings of misrecognition and stigmatization in patients, and on the other, feelings of being powerless in therapists and physicians. Physicians become frustrated, which has a negative impact on the patient-physician relationship (Salmon 2007; Wileman, May, and ChewGraham 2002). 

Because of this problem of communication and recognition, MUPS patients widely share their experiences on the Internet and through various kinds of social media, like Emsy did. Her call for recognition, not in the consultation room, but in the public space of the Internet, illustrates the limits of what contemporary (conventional) medicine can accomplish. As I will suggest at the end of this chapter, however, the blogosphere should not only be seen as a place where people can dump their (unheard) complaints. It can also Reclaiming Embodiment in Medically Unexplained Physical Symptoms (MUPS)* be seen as a space that enables possible writing which can ‘touch the body’ (Nancy 2008, 9). To give voice to the body in MUPS, as I will argue here, we need a kind of talking and writing that does not rigidify the body. The Internet might be an appropriate place for writing that resists fixed meanings because of its transient nature.

The ‘unexplained’ of MUPS, undeniably, lays bare the epistemological deficit of medicine. It is striking, however, that in actual practice this ‘unexplained’does not refrain professionals from providing explanations. Similar to the usage of various other terms and labels, the usage of MUPS often goes together with the reasoning that if there are no physical causes to be found, the cause of these kinds of symptoms should be looked for in some psycho-logical or emotional disturbance. This kind of reasoning is called psychosomatics: physical, somatic problems are caused by psychological problems.