‘If I Had Cancer I Would Get Loads of Sympathy, ‘Cos It's HIV, I Can't Even Tell Anyone': Young People's Understanding of the Stigma of HIV

There is little research which has documented how the stigma of HIV is understood by young people who have grown up with the virus. This paper presents the experiences of twenty-eight participants living with perinatally acquired HIV in the UK.  At the same time as being formally told their diagnosis participants recalled being alerted to the stigma of HIV.  They are advised to keep their status secret to avoid discrimination or rejection. 

The fear and experience of stigma was reported as central to their experiences of growing up with HIV. Participants observed that HIV is viewed differently to other illnesses, and believed that, unlike other health conditions, HIV did not evoke a sympathetic or supportive response. The young people identified the negative and derogatory talk around HIV in wider society as affecting their self image. Through their observations of the negative media representation of HIV coupled with the lack of positive role models, they learn that it could be counterproductive to be open about their status.

This paper presents the strategies participants devised to avoid stigmatisation. They construct an alternative biography to explain hospitalisations and illnesses, conceal medication in the home, hide the taking of medication at school and with peers, deny knowledge and awareness of HIV and learn ‘the code of silence’ and to ‘keep their heads down’. The external negative representation of HIV IVHIVreinforces the stigmatised nature of their condition and young people in turn feel discredited. Young peoples’ explanations of the stigma of HIV identify the link with sex, promiscuity, racial stigmatisation, fear of infection and association with homosexuality and intra-venous drug use. Participants themselves construct a hierarchy of blame: those perinatally infected are ‘innocent’ whilst those infected through sexual contact or intra-venous drug use are seen as responsible for their own infection.