The hidden disability dilemma for the preservation of self

Abstract

Oliver Sacks’ work focuses our attention on the use of narrative and the issue of the “preservation of self.” Chronic illness and acquired disabilities require a reappraisal of one's concept of self and often result not only in a modification of self concept but modifications of one's self narrative and occupational behaviours as well as strategies for the preservation of the emotional and physical self. Hidden disabilities, those not easily discerned by others, present unique challenges to this reappraisal, both because they are hidden and because they can often be kept hidden. This paper draws on the narratives of two small groups of women with hidden disabilities ‐ women from Hawaii with Temporomandibular Joint Syndrome(TMJ) and women from Australia with “hidden” Multiple Sclerosis(MS) . In their narratives we see a struggle towards the reconciliation of a dilemma for the preservation of self: if the illness or disability is kept hidden one can maintain a certain public image of self but there are risks concerning public value judgements of the person's illness or disability‐related behaviour, and the way they fulfil their occupational roles and problems in meeting psychosocial, physical and occupational preservation needs; but, if they reveal their identity they must assume a socially devalued self identity, that of sick and disabled, and all that these identities entail. In this struggle to deal with this dilemma, many factors come into play, including legitimisation of the illness or disability by the medical community and significant others in the social environment, and cultural perceptions of a socially appropriate diagnosis and a socially appropriate self. While the women in these two groups come from very different places and carry very different diagnostic labels, many of the key issues in their narratives are very similar.

Key words:

• Hidden disabilities
• Preservation of self
• Occupations
• Multiple Sclerosis
• Temporomandibular Joint Syndrome