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Bodily awareness of people with MS

People living with MS must learn to cope with a body that steadily develops more severe complaints. How do they do that?

Description

People living with MS are forced to cope with often sudden complaints such as exhaustion, memory loss and loss of strength. At first such attacks are often of short duration, but as the disease progresses, patients develop more permanent handicaps. People living with MS are intensely aware of a body that no longer functions as it once did, and often develop a sense of alienation towards their body. This has a considerable impact on their relationships with other people and their overall experience of the surrounding world.


Still, people with a chronic disorder such as MS often manage to develop a good (or at least tolerable) relationship to their body. Statements like ‘I have learned to listen to my body’ are a good illustration. But what exactly does this ‘listening’ mean? How do people living with MS regain familiarity with their body?


This study focuses on how people with MS experience their body, with the goal of better understanding the phenomenon of bodily awareness. We examine if and how signals and perceptions of the body are experienced as instructive (as a source of learning and meaning) with a view to learning to live with MS in the best possible way.


So far, how people with MS cope with the disease has mainly been interpreted from a psychological point of view, using terms such as acceptance, coping and adaptation. This study does not focus on cognitive and psychological factors but on how people experience their body in the context of everyday life with other people. This could help care professionals become more sensitive to their life world, and can help them pose the right questions to people with a chronic disorder. An increased bodily awareness can also lead people with MS to respond more effectively to the constantly changing symptoms. 


The study is part of a research programme focusing on MS and life world-centred care. Previous research within this programme examined the actual experiences of people recently diagnosed with MS. The University of Humanistic Studies is currently also involved in a study into therapy adherence. 

Researchers

(Co-)financing

This study is funded by the  Nationaal MS Fonds.

Contact

Dr. Merel Visse, m.visse@uvh.nl

People living with MS must learn to cope with a body that steadily develops more severe complaints. How do they do that?