At 13 Sara learned she had inherited HIV from
her parents. Now 18, she talks to Martin Flynn about what
it means to be a positive teenager
Last month Sara finally moved out of a children’s
home into her own flat. The move marked the official end to a childhood and
teenage years marred by illness, deception and rejection. Despite being abandoned
by her parents at 14, Sara still has bouts of loyalty. “I don’t
want to reveal my surname because my mum might get into trouble where she
works,” she explains.
A conspiracy of silence
Sara thinks she has had HIV since she was a baby but has never had it formally
confirmed that her parents are infected.
“I was living 13 years without knowing it. I fell ill with pneumonia
and the doctor’s diagnosed me. I ended up in hospital for three months.
I had whooping cough. I don’t know whether my parents have been tested,
but what I understand is that my dad refused.
“I was living with my dad and he didn’t want me to find out. But
I had an inkling so I kept asking questions of the doctors and I built up
a really strong relationship with them.”
Before they told her, Sara finally figured out she was HIV positive from reading
the leaflets and drugs packaging in her medication.
“It was shock. I didn’t tell anyone. I just waited for someone
to tell me and I had to wait a year before I was told. I was angry and later
on I became resentful because they didn’t tell me the truth.
“I knew young people who had HIV since birth and by the time they were
13 or 14 they were very ill. I began thinking ‘Am I going to die?’
But then I thought ‘at least I’ve lived 13 years’.”
Put in care
Sara didn’t get the chance to vent her anger on her dad.
“My parents and the doctors shipped me off to a summer camp in Ireland
with other chronically ill children. There were children with cancers and
all sorts of diseases. My dad told me I was HIV positive and two hours later
I was on a flight to Ireland. Coming back it hit me I was different from my
brother and my sister.” She met other kids at the camp infected by their
parents. “It was really mind-blowing to realise I was not alone.”
Resentful and angry, she refused therapy and counselling.
“Things went downhill between me and my parents and they put me into
care. So since 14 I’ve been in care because my parents couldn’t
take it that I was HIV positive.” Sara hated the children’s home
but eventually got used to it and was happy she was able to attend the same
school with her long standing friends.
Punished by guilty parents
Sara kept her illness a secret, fearing she would lose friends. “When
I was 15 I told four of my closest friends. They’ve kept quiet for three
years. They’ve been good friends and have stuck by me. I think they
were worried that I was going to change. Maybe they thought I’d go weird
or I might start falling ill.”
“I was put on medication very quickly. The only side effects were that
I got very itchy all over my body. That’s the worst. I was lucky because
I never had diarrhoea or sickness. Since I’ve been 16-and-a-half I’ve
been on the same medications.” Moving from paediatric to adult HIV care
this year, however, was a real shock. “It was horrible,” she said.
Sara told her secondary school teacher and her college guidance counsellor.
“With my teacher it was not just about HIV but about being in care,”
she adds. “I have friends that I can really trust with me being HIV.
I continue to have a normal teenage life. I’m very lucky to have such
good friends.”
Sara is upset she has no contact with her parents but says she has got used
to it. “It’s sad that friends of my age have accepted me for who
I am but my dad has not. I’m not the one to blame. He probably shuns
me because my being there makes him feel guilty. They punished me for something
they did and they made that choice.”
Teenage activist
Sara volunteers with a London-based charity where she wrote Voices of Children,
a book that provides an insight into the feelings of stigma and isolation
felt by children infected with HIV. Over the summer she volunteered for an
Aids orphanage. Next, Sara plans to work in schools explaining to kids how
to avoid infection. “I’m able to get medications and do normal
things. I just wanted to give something back to children who are not as privileged
as me to change the stigma, prejudice and discrimination of HIV.”
She feels strongly children should be told the facts about sexual health.
“Parents are partly to blame; they don’t want to talk about sex
with their children but kids as young as 12 are having sex. It’s better
not to blame them but to give them the facts and the truth rather than myths
and lies. Then they can protect themselves.
“There’s so much hypocrisy about sex in Britain and a real lack
of honesty from adults towards young people. Sweeping sex education under
the carpet or leaving it to teachers at school is not good enough. Parents
can’t pretend it’s not their job. On TV they always show the bad
and negative side of HIV.”
For an 18-year-old she extremely clued up on the global epidemic and is fiercely
opposed to attempts to promote abstinence over condom use. “Abstinence
education is a joke. It’s impossible and takes funding away from giving
young people truthful information to protect themselves. Governments are wasting
their time and our money if they try and persuade young people to stop having
sex”.
Normal and naughty
Sara reflects on how HIV has affected her life so far. “I really hate
it when people ask me really stupid questions like ‘Can you still go
out?’ and you think to yourself ‘Yeah. I still go out and do everything
I want. It’s only a virus after all. Some people think that if you’re
HIV positive you wear it on your forehead. I’m still a person and an
individual and HIV is just a small part of me. It’s never stopped me
doing the things I want to do. I’m able to travel, go out clubbing,
drink and I’m still able to get angry. It’s never stopped me from
being as normal as I can.”
Girly chats however can sometimes prove awkward. “When friends say things
like ‘Oh, I had sex with this guy’, I wonder if they’re
using a condom. You want to tell them about getting pregnant or catching HIV.
That’s when I feel really sad because I think ‘You have the chance
of a lifetime not to be infected. Why are you not taking care of yourself?’
That’s when I really feel isolated.
“You go through different stages, highs and lows. You can go through
the worst depressions and even want to kill yourself. I wasn’t accepted
by my family. What can be worse than that? Helping others helps me to be positive.
But I’m not a saint. I am also very normal and naughty.”
