Living with Turner syndrome: the challenges and experiences of chronic ill health, body-image and infertility

Turner Syndrome (TS) is a sex-chromosome disorder occurring in approximately 1 in
2,500 female births. The main features are short stature and dysfunctional gonads,
resulting in a lack of sex hormones, delayed puberty and infertility. Physical
characteristics associated with TS include webbed neck and pigmented moles.
Women with TS have a high risk of developing chronic ill health and require ongoing
medical monitoring. This qualitative study aims to develop an understanding of the
psychosocial impact of living with TS during adulthood, with particular reference to
chronic ill health, body-image and infertility. Ten women were interviewed and data
were analysed using Interpretative Phenomenological Analysis. Two superordinate
themes were developed: 'Living with an Evolving Condition' and 'Oscillating
between a Positive and Negative Identity'. The meaning of TS changed for
participants depending on their life stage and they described living with uncertainty
and difficulty in differentiating themselves from the manifestations of TS. Various
consequences of TS impacted upon participants' struggles to establish a coherent and
positive identity, including dissatisfaction with their appearance, receiving differential
treatment and their medical care. Infertility was a particularly important aspect of
participants' experiences of TS across the life stage and challenged their
establishment of a positive identity. A limited version of Foucauldian Discourse
Analysis was adopted to understand the influence of the socio-cultural (pronatalist)
context on being infertile and provided a 'material-discursive' approach to the
experience of infertility. Participants' struggles to maintain a positive identity were
related to a lack of available, positive discursive resources to define themselves as
(infertile) women. The participants also constructed their infertility as a 'dis-ability'
and a 'reproductive impairment', placing them in positions of deficit and dysfunction.
Potential clinical implications are discussed.

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