On the human side... of illness and research

[摘要] ENGLISH ABSTRACT: This qualitative study comprised an in-depth investigation into the subjective - the explicitlyhuman - experience of those suffering from Myalgic Encephalomyelitis (ME). I was, firstly,concerned with the nature and meaning of the social side of illness, that is, the sufferer'sencounters with doctor, family member, friend and acquaintance alike. I was, secondly, setto develop greater insight into the essentially personal experience of being ill. I was able toconclude that, even amidst the inhumane presence of utter ignorance that permeate the veryexperience of ME, no ME sufferer is inevitably doomed a victim. They can always make adeliberate decision to have a say in their situation, in their own experience of theircircumstances. They have the power of personal choice. Recommendations are, therefore,directed at expanding the potential extent and magnitude of this dynamic power.The substantive focus of my study was enriched by a deliberate concern with themethodological implications of my own intimate involvement within the research process. Iwas here primarily concerned with my personal contribution to the research process as wellas the influence thereof on the research relationships developed and the research strategieschosen and applied. I could not but conclude that the understanding I explicate is, as allsocial science theory, essentially a human construction, developed by me, in my distinctlyhuman capacity. Recommendations are, therefore, geared to sensitise all social researchersto their own contribution to the construction of that which is eventually presented (and taken)as truthful knowl~dge.In conclusion, I am thoroughly convinced that the experience of both illness and research isfundamentally human. This humanness cannot and should not be denied. Instead, Iadvocate a more deliberate focus on the human dimension of illness and research. Withoutsuch a focus, a more comprehensive understanding of either realm will continue to linger asbut an elusive ideal.

[发布机构] Stellenbosch University