"I was so shocked and so angry with my dad for a
long time," he told IRIN/PlusNews. "I immediately thought I was going
to die, I had very little hope."
Gordon had been diagnosed at the age of about 10, and
was put on Septrin, an antibiotic, but was never told why he had to take the
medication. When he was older, his frequent sickness, as well as his
step-mother's death and his father's ill health, made him suspicious about his
status. His father eventually buckled under pressure from a doctor and told
him.
"If I had known earlier I could have dealt with it
better, but I no longer trusted him and I blamed him for giving me HIV,"
he said. Gordon's father passed away in March - by then the two men
were on better terms.
Gordon is the author of a short book, an autobiography
titled How I Discovered I was HIV-positive. He hopes the book will highlight
the importance of parents letting their children know their HIV status early.
His younger brother, Graham, now aged 12, is also
HIV-positive, but was told early on. "You can see that he is handling it
well and he's in a support group - he'll be ok," Gordon said.
Stigma and denial
According to Goretti Nakabugo, a Ugandan counsellor
with experience in dealing with young people living with HIV, the main reason
parents don't disclose their children's HIV status to them is the fear that the
child will be stigmatised.
"Children take late disclosure very hard, it's so
sudden and they are often very ill when they find out, making it that much
harder," she said.
"They are filled with anger, guilt and feel they
have been denied a big role in their own lives," she added.
"Disclosure is a process; it should be done in bits from the age of about
eight or ten years of age, depending on the child's cognitive
development."
Often, Nakabugo noted,
parents are in denial about their own status, and so admitting their children's
status would force them to come to terms with their own condition.
This was the case for Gordon's girlfriend, Princess
Nuru, 22, who found out her status when she was 18 years old after a near-fatal
illness. Her doctors told her she was HIV-positive and when she told her
mother, she accused Princess of having acquired the virus sexually.
"But I knew I had never had sex before so there
could only be one explanation that made sense, especially since I had been so
sickly throughout my childhood," Princess said. "It was a shock to
find out, but my mom's reaction made it even more terrible."
Princess's father died several years ago, and although
his wife knew he had died from HIV-related causes, she only got tested recently
- almost four years after Princess was diagnosed.
"She got TB last year and that's when she finally
got tested and when she confirmed that she was HIV-positive," Princess
added. "Now we are on good terms, she has apologised and she is on TB
treatment but is still quite ill."
According to counsellor Nakabugo, the key to disclosure
was to deal with stigma first. "If the parents have self-stigma then
they'll pass it on to their children," she said. "Stigma leads to
denial and late disclosure and late disclosure in turn leads to stigma because
the child thinks he or she cannot talk about their status since it was such a
big secret for so long - it's a vicious cycle."
According to the American Academy
of Pediatrics, research indicates that children who know their HIV status have
higher self-esteem than infected children who are unaware of their status.
"Parents who have disclosed the status to their
children experience less depression than those who do not," the Academy
said in its policy statement on disclosure to children and adolescents living
with HIV.
"Disclosure should not only take into
consideration the child's age, maturity, and the complexity of family dynamics,
but the clinical context as well," the statement added. "In
critically ill children, issues of dying rather than disclosure may be more
appropriate to address."