DCSIMG

Nobody needs to carry the secret burden of tragic HIV

'My mum told me that she was going to die within the next three years.

"I didn't want to believe it, even though I knew deep down that she was really ill. I thought she would get better. Even a few weeks before she died, I thought she was getting better."

Diane* is just 18 years old.

To look at, she is a normal, happy, fun-loving teenager with tales of nights out and watching her favourite bands at festivals.

But strip back a few layers and you find a girl who is old beyond her years, a girl who has, in such a short period of time, had to go through the kind of tragedy that most people will never have to endure in an entire lifetime.

It's heartbreaking to learn, as she tells the story of her mother's passing when she was just 15, that this was not her first experience of death - or even of losing a parent.

Her father also died when she was just nine, marking the beginning of the end of Diane's childhood.

Although she told people her parents had died as a result of liver problems, the reality was that they had both passed away due to HIV-related illnesses.

"I remember everything about the day my dad died," she recalls. "Me and my sister walked down to the shop to meet our mum and we could see her crying.

"We asked her what was wrong and she said dad was dying. I was just in shock.

"We met our social worker, who took us up to the hospital and we had a talk with dad.

"He was just laughing and joking with us like normal.

"After a few hours we left and then we got a phone call that night saying he had passed away."

That was when Diane was first introduced to Waverley Care, an Edinburgh-based charity which supports people living with HIV and Hepatitis C and their families.

She started attending workshops and art classes as part of the charity's children and families project and joined a group of young people who were unaware of the fact their parents or other family members were infected with HIV.

But it wasn't long before Diane picked up on the fact that she and the other children had something in common.

"I remember first coming to the group," she says. "We did art sessions, drawing, painting, drama and we played with toys.

"I just thought it was an after-school club at first but it wasn't too long before I figured out why we were here.

"I was talking to people and making friends and trying to figure out why we were there and what we had in common.

"I was 12 when I found out properly and it was just a big shock really."

Not only did Diane have to come to terms with the fact that her dad had died as a result of the virus, she also had to then cope with the fact that her mum was also infected.

She suddenly had to carry a massive burden and had to keep a dark secret from all her friends, teachers, classmates and even her younger siblings.

"That's one of the worst bits, the secrets," she says. "Nobody should have to feel like that but that's the way it is.

"You can't be as open as you would like to be about it."

As with a lot of young people who are affected by HIV, Diane started to have behavioural problems. She started getting into trouble at school, was consistently excluded for her bad behaviour and ended up skipping school completely.

She took on the role of carer for her mum, who was on intense medication to try to slow the progression of the virus and prolong her life.

"When I was younger I had behaviour issues," she admits.

"Keeping it a secret made me angry. I hated teachers and authority. With everything that was going on, I missed a lot of school. I was so worried about my mum and didn't want to leave her.

"I remember once coming home from school and an ambulance went past and stopped outside my door and it turned out it was taking my mum to hospital. After that I found it difficult to go to school."

At school, Diane was scared of how people would react and feared being rejected by her friends. "If anyone's parents were ill or in hospital, they could just say what it was, but I couldn't mention it. I had to make excuses.

"Coming to Waverley Care made me realise that the whole world wasn't against me. I had someone to talk to.

"I don't know what I would have done without this place."

Eventually she took the brave decision to tell some of her closest friends.

Fortunately, they were sympathetic and understanding and, like Waverley Care, offered Diane an outlet for her emotions and feelings.

"One of the things I had feared about people knowing was that they would reject me," she explains. "But I have told a few of my friends and they have been so understanding."

Diane is doing a youth work course and is currently on a placement with Waverley Care.

She says: "Looking at some of the kids now, it's like looking at myself when I was that age.

"You can see that some of them are trying to keep it a secret like I did. It's a safe place and it's always been here for me and you don't have to keep a secret."

Diane has vowed to do all she can to help educate people about HIV in a bid to put an end to the stigma. She has already made sure that the close friends she has shared her secret with are clued-up. She believes schools do not give young people enough information about HIV.

"I had learned a little bit in school but I just thought it would never happen to me. It doesn't even register that it might happen to you," she says.

"I want to do something in the future to educate people," she says, with a look of determination in her eyes. People need to be more understanding and accepting of it. I will make sure that happens, one day."

&#149 Real name has been changed to protect her identity.

 
 
 

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