HIV+? For Shame? Lillian’s Remarkably POSITIVE Story

 By Melodie McCullough

One day after being bailed out of jail by her boyfriend in Montreal, Lillian, age 20, landed in Peterborough on a 2 a.m. Sunday Greyhound bus. Dressed in her sex trade clothes and shoes, she headed down George Street, walking to her mother’s home off Aylmer Street. Her clothes were too small because she was pregnant – and, unknown to her, also HIV-positive.

“I must have been quite the sight.”

Ten years later?

Lilian (who did not wish to use her full name for fear of repercussions in the community for her and her family) is a vibrant young woman brimming with courage and determination — and just the right amount of kick-ass attitude to keep things interesting. With three lively children to love, all HIV-negative, a rewarding job in the social services field, and a stable seven-year relationship, she is free of her past life of addictions, sex work and crime. And now she takes the time to educate others about the trials — and triumphs — of living with an HIV-positive diagnosis.

“By definition, I live with a disability,” said Lillian, in a recent interview.

“There really is so much shame. . .”

Born in Mississauga and raised in Barrie until age nine, Lillian grew up with parents who used injection drugs, and stole to feed their habits. When they split up, she and her mom were soon evicted and living from shelter to shelter. By the time she was 12, she was on the streets in Toronto. At first she only stole (having learned the trade from her parents) from johns, but realised it was safer to turn tricks. Addicted to crack, she progressed to violent street crimes, including day-time armed robberies. By age 15, she was caught and charged with a long list of crimes. Next came over one and a half years in a Brampton jail.

andy's HIV photo

“It’s not socially okay to say, ‘I’m HIV-positve’,” says Lillian.

“The whole thing was scary at times, but I was able to navigate the streets because of my parents, and it became my normal,” she said.

Upon release from jail, she moved to Montreal to be with her mom, under the impression she was doing okay. But, within days of arriving, they were evicted from her home, and once again Lillian returned to the only life she knew: crack, crime and the sex trade — this time dabbling in stripping and online photography.

By the fall of 2005, she was pregnant, and decided, with her then-boyfriend and father of her child, to give Peterborough a try, where both her parents lived. Previous to coming to Peterborough, she was told she had anemia – but she knew something else was wrong. In Februay, 2006, she was finally able to get access to an OBGYN. She was told over the phone (“I had no money to even get on a bus”) by a doctor she was HIV- positive.

“A million things were flying through my head. I was worried the most about the baby. It wasn’t a huge surprise. It was, but also it wasn’t because of the sex work.”

At 36 weeks’ pregnant, she began HIV drug therapy and gave birth at 38 weeks by caesarean section to a healthy daughter, who then received six weeks of infant drug therapy. Lillian has since given birth to two more children, beginning therapy in those pregnancies much earlier. She was not able to breast-feed because it is against the law for HIV-positive women to do so, she said.

“If you think you might be positive, get tested. If you are positive, reach out to PARN (Community Aids Resource Network) [see HIV Facts & Resources article] or someone. There is power in numbers. You’re not alone and there is no shame in being HIV-positive.”

“Early pregnancy testing is so crucial for HIV. Ideally, if the drugs are taken between 12 to 14 weeks, the risk of transmission to the baby is less than 1%. So connecting to care is really vital,” said Lillian.

But lots of people don’t know this. It’s true that in the 1980s, the HIV virus, which leads to full-blown AIDS if untreated, was, for many, a death sentence. That is no longer the case. There is no cure, but there is treatment.

“We have the medicine and the tools to stop the virus transmission,” continued Lillian. “If you think you might be positive, get tested. If you are positive, reach out to PARN, or someone. There is power in numbers. You’re not alone and there is no shame in being HIV-positive.”

However, the stigma of HIV remains for many women, coming even at times from within the medical community, Lillian said, with lack of education a main cause.

“There really is so much shame. There’s a stigma just in walking through the PARN door. It’s not socially okay to say ‘I’m HIV-positive’, so I think women are, for the most part, silent,” said Lillian.

“There needs to be more of a voice for women and mothers with HIV. Women with HIV are generally summed up as whores or sluts, and there’s always the suggestion of drug use as to how you contracted it. That’s how society sees us.”

But Lillian continues to defy that stereotype, as she follows her own path. She obtained her high school equivalency certificate in 2007, after no schooling whatsoever since age 12. Last July she graduated with a college diploma in Social Services.

A variety of things have contributed to her success, among them her initial concern for her daughter and the support she has received from PARN, but “mostly my character and desire to make something of myself and prove some people wrong,” she said, with a smile.

“My doctor tells me I will live to see my grandchildren. And that feels wonderful.”

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