From Victim to Visionary: the story of Celestine

Celestine dreams of a world without stigma where people living with HIV are treated equally and fairly. She wishes for a place where education replaces ignorance, and empathy overcomes fear. On this World AIDS day, let us celebrate Celestine's journey, perseverance and dedication. And let's hope, one day, we can achieve her vision for a kinder, better world.
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Photo Credit: TRACE via MTV Staying Alive Foundation

Across the globe, 37 million people are currently living with HIV/AIDS. It's a harrowing number, but it cannot begin to describe the challenges, isolation, anxiety and physical turmoil that these 37 million face on a daily basis. Instead of focusing on the statistics this World AIDS Day, let's instead celebrate the perseverance and daily heroism of one of the 37 million people courageously living with and battling HIV and AIDS. Let's honour the travails and triumphs of Celestine.

Celestine, a member of the Sabaot Tribe in Kenya, was born near Mount Elgon. She grew up among the lakes and flamingos of Nakuru County with her mother, six brothers and two sisters. Theirs was a close family.

In September 2003, Celestine's world came crashing down: she was diagnosed with HIV. Although she knew HIV and AIDS was running rampant across her country, she couldn't believe she had contracted the virus. She was in denial. It couldn't be happening to her.

Within the confines of the counselling centre, she tried to let the news sink in; she attempted to accept her fate, and she felt a modicum of comfort. The minute she stepped outside, however, she knew her life was forever altered. As she exited the centre, she felt the hard, suspicious stares of strangers on her face. Some asked her unapologetically what she was doing at the centre; others just maintained their distance.

Celestine fled home and shared her HIV positive status with her older brother Mikey. While supportive, Mikey insisted Celestine keep her news a secret, and he suggested she get tested again. He refused to believe she was HIV positive. Celestine turned to her husband the next day; like Mikey, he demanded Celestine tell no one of her news. She was fated to endure in silence. Celestine felt shame; she was trapped. She lived with her secret for three years.

In 2006, with the help of community counsellors and several courses, she finally aired her status. She was scared, but she thought that suffering in silence was worse. She was wrong. As soon she went public, Celestine experienced an avalanche of stigma. Ignorance facilitated fear, and her isolation grew.

It wasn't only Celestine who suffered, however; her young daughter, who was HIV negative, also became a target. Celestine's daughter was discriminated against at school; her teachers treated her suspiciously, and she was sent home by the school cook multiple times because the cook thought she too was living with HIV like her mother.

Because she didn't have easy access to medication, Celestine's health deteriorated, and she became bed ridden. But her despair came from the way people treated her not her failing body. The stigma was too much for Celestine; she attempted suicide four times.

And then one morning, Celestine had a realisation: HIV was a medical condition not a damning fate. Celestine resolved to get treatment and find a way to help others avoid her mistakes and struggles. Celestine vowed she would make her community understand that HIV and AIDS was a treatable disease and that those who were infected deserved respect, trust, and compassion. She saw ignorance as the root of fear and discrimination. If she could educate, she could foster empathy and ensure those who were living with HIV had access to treatment and support.

Celestine began working with TRACE, a local NGO, dedicated to empowering young people in villages and rural areas. TRACE provided her training, so she could share her experiences with the community and educate them on HIV and AIDS prevention and treatment. She talked openly about the impact stigma had on her life and tried to breakdown misconceptions and myths about HIV and AIDS. She inspired others to admit their status publicly, and she became a support system to those who stepped forward.

Celestine is now embarking on a campaign to ensure everyone knows their HIV status, and she is lobbying on behalf of young people living with HIV. In her eyes, this is the group that is most vulnerable and that requires the most support. She's grateful that the MTV Staying Alive Foundation is focusing a spotlight on their plight and hopes other development organisations will follow its lead.

Celestine dreams of a world without stigma where people living with HIV are treated equally and fairly. She wishes for a place where education replaces ignorance, and empathy overcomes fear. On this World AIDS day, let us celebrate Celestine's journey, perseverance and dedication. And let's hope, one day, we can achieve her vision for a kinder, better world.