Study shows the psychological and cultural stigma felt by those who are HIV positive

A young woman who tested positive for HIV has described how she felt like "throwing" herself in the river when she received her diagnosis.

Study shows the psychological and cultural stigma felt by those who are HIV positive

A young woman who tested positive for HIV has described how she felt like "throwing" herself in the river when she received her diagnosis.

A young man terrified at disclosing his HIV positive status describes feeling like “someone who has leprosy".

The extreme emotional distress brought on by a HIV diagnosis is highlighted in a series of interviews with three young adults in Cork who are HIV positive and whose experiences are recorded in a new report.

The Sexual Health Centre in Cork, which launched The Lived Experience of HIV-positive Young Adults, said it is the first time the voices of this demographic have been heard.

The study identifies three prevailing themes: the psychological impact of HIV diagnosis; the culture of HIV-related stigma and the associated lack of knowledge; and the significance of support services.

The participants, ranging in age from 28-33, described feelings of isolation in the immediate aftermath of a positive diagnosis, thoughts of suicide and excessive time spent ruminating on their HIV status.

One man, identified only as Noah, describes how he stopped taking his medication “because I was just angry at myself and angry at my life and I just wanted to end my life”.

Moreover, he couldn’t stop thinking about his HIV status “it’s something that keeps coming into my brain and you know, I don’t function very well”.

A young woman, identified as Sophie, describes how she feels her future is lost and possibly, her prospect of motherhood.

It’s just hard like, not knowing will I ever be in a relationship again.” She also describes why she chose not to tell people: “They’ll be like, 'stay away from her', 'how the fuck did she get that?..Like she’s sleeping with everybody’.

Risk of rejection was “at the forefront of the participants’ minds”. They only decided to disclose “when they reached a threshold of emotional distress whereby the risk to their health as a result of isolation outweighed the risk of rejection".

A young man, identified as Jack, describes how when he started disclosing “it was a weight being lifted off my shoulders”.

All the participants believe the stigma they faced was “culturally entrenched due to a lack of education”, and that people tend to think the terms HIV and AIDS are one and the same thing.

The stigma extends to clinical settings, participants said, with Jack, as a then teenager, feeling “completely dismissed by clinical staff” when seeking support post-diagnosis. All participants spoke very favourably of their peer support experience.

Aoife Burke, researcher at the Sexual Health Centre and author of the report, said, almost half of [508] new HIV diagnoses in Ireland in 2016 were in people under the age of 35. She said the results of the study “can help bring us one step closer to open dialogue and accepting and addressing the existing issues”.

The report’s findings were presented by Ms Burke in the run-up to today, World AIDS Day.

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