Wednesday 22 October 2014

'I'm a woman, a wife, sister and mother, I also have HIV'

A square from The Quilt of Hope by Open Heart House to positively represent women living with HIV in Ireland
The Quilt of Hope by Open Heart House to positively represent women living with HIV in Ireland

The disease is a manageable condition thanks to medical advancements. But its psychological aspects can be far more destructive, writes Deirdre Cashion

If I had a car accident and if my leg was gone they would do all they can

Positive living: The Quilt of Hope created by Open Heart House to positively represent women living with HIV in Ireland

IT WOULD be easy to write about HIV (human immunodeficiency virus) in the all-too-familiar context of social disadvantage, hardcore drug use and promiscuous sexual behaviour. But that would miss the point.

HIV, like many serious illnesses or diseases, is triggered by what is euphemistically referred to as 'risky behaviour'. Yet we all engage in 'risky behaviour' to a greater or lesser degree.

We smoke, we drink, we eat to excess and fail to exercise. We engage in unprotected sex. We often put our fragile lives in harm's way with just a fleeting thought for our physical well-being and those dependent on us.

So why does a diagnosis of HIV still carry with it such deep-seated social stigma and severe psychological turmoil?

Sandra is 41, the eldest of five children. She grew up in Dublin's inner city.

"We're tired of being seen as victims, as something that was picked up on the end of your shoe," she says. "I'm a woman, a sister, a daughter, wife and mother. I'm a friend, I work and I have HIV.

"You're not going to die of HIV any more. But it's the mental anguish it causes, the social isolation and the terribly negative feelings it brings up for the individual. Where did this idea come from that the person is dirty? You don't feel dirty when you're diagnosed with cancer.

"With some mistakes, you wake up the next morning, have a shower and that's it. With other mistakes you're told you're HIV and Hepatitis C positive," she points out.

Sandra is married with children. She met her husband at the tender age of 17 and they are still together. She was diagnosed 11 years ago after the birth of her four daughters.

She visits the HIV clinic every three months to monitor her condition and takes four tablets a day, which keep her alive. The severe side effects of the medication cause lipodystrophy – an uneven distribution of fat around her body. Her inner thigh muscles have wasted, leaving her in constant pain, and to top it all, she gets ulcers in her oesophagus.

But it's the ongoing psychological trauma of the diagnosis that she constantly wrestles with.

Despite her illness, Sandra leads a very busy life. She is involved in an amateur dramatics group that has produced three DVDs about Hepatitis C, and works with newly diagnosed HIV sufferers in Open Heart House, a peer-support organisation. She also talks to nursing staff and doctors in Dublin's hospitals about how they can better interact with HIV drug users. Through her work, she has come to know people from all walks of life.

"HIV doesn't discriminate between a posh upbringing and a really poor upbringing, between black and white," she says. "All it takes is not to engage in safe sex. But when I get to meet people here, it's too late for me to give them that advice. So my responsibility is to help them to come to terms with their HIV diagnosis and to learn to live with it," she explains.

There were 342 people diagnosed with HIV in Ireland in 2012, according to the Health Protection Surveillance Centre of the HSE. That's 245 men and 97 women condemned to a life smothered by an impenetrable blanket of enforced secrecy and shame, which can cause as much damage to the delicate human psyche as the illness does to the compromised immune system itself.

Irish Independent

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