Rachel was two-years-old when she was diagnosed as HIV positive and wasn’t expected to live long enough to go to primary school.
Today she says: “I live my life like any other 30-year-old woman.”
Rachel agreed to speak to us as part of NHSGGC’s staff campaign to raise awareness of HIV stigma, generally the result of ignorance of the condition. She has been subjected to stigma in the community and in healthcare settings, and wants to explain to staff that she and other HIV positive patients should not be treated any differently when they come in for treatment.
Rachel’s own HIV status was discovered after her older sister, who battled many health problems since she was a baby, was finally tested for HIV, and the result was positive.
The virus was transmitted to their mother in an infected blood transfusion she received in England.
As a result every member of the family was tested, Rachel, her younger sister, and parents were discovered to be positive, but their brother was negative. Since then her sisters and parents have died from HIV related illnesses.
Rachel’s mother made a brave decision to speak publicly about her family’s health and her fears for the future:
“When we were first diagnosed my mother willingly gave a story to the media about the fear of our brother being left on his own and the fear of bringing up three girls all HIV positive,” explained Rachel.
It was an impossible condition to explain to a child and Rachel went on: “When I was younger my mother told me that I wasn’t very well and I needed to go into hospital where I would be put on a drip every week to make me stronger.
“Because of the media story my status was always out there. People didn’t want to ask me questions and if I had a cold or a cough they didn’t want to come near me, but of course I was more at risk than them.”
The family faced more stigma when their mother tried to register them with a local dental practice, but they were turned down.
At secondary school Rachel faced more prejudice: “I was bullied and beaten up and my mother was called a junky prostitute. I was suspended because I stood up for myself but the other girls weren’t punished.”
She has also experienced stigma within NHS services: “Some years ago a nurse was trying to take blood from me, and that is difficult because of the condition of my veins.
“The nurse said it was quite difficult to take blood and asked if I was an intravenous drug user, which quite upset me.
“And at an eye clinic, a doctor opened up the front page of my notes which gave my status and as soon as he saw that he double gloved.
“I explained to him that he didn't need gloves because he was not touching my eye and you don’t need to double glove anyway. I made a formal complaint because it upset me.”
She went on: “Sometimes when you first disclose there are two reactions, one is pity, the other is ‘the look’, and it isn’t nice.
“If I said diabetes, you would not get the same reaction.
“People used to ask me what does HIV look like? And I say what does diabetes look like? Nowadays with treatment you can’t tell.
“I just want people to know that we are human too, we have feelings, don’t treat us any differently.”