SHEILA'S VOICE

Updated: May 11, 2020

Sheila was born HIV positive. Her mother, who died when Sheila was just a child, transmitted it to her at birth. When Sheila was told about her HIV status at age 11, her first thought was to drown herself. A decade later, she runs a start-up company, delivering medication to people living with HIV in Uganda, and she inspires others to be open about their status. This is her story.

Growing up, Sheila’s father made sure she took her HIV medication daily. Still unaware of her HIV status, Sheila started questioning why she needed the medication, and eventually refused to take it without an explanation. “I still remember how they broke the news to me. My dad didn’t want to tell me himself, he was too scared of how I would react. Instead, he took me to the hospital.” At the hospital, Sheila was met by a counsellor, who asked, “What do you know about HIV and AIDS?” Sheila told her everything that she had learned in school; how it spreads, how it affects people and so on. Then the counsellor asked, “If I told you that you have HIV, how would you feel about it?”

“I told her that I would run to the river and throw myself in the river and die. The counsellor came over and sat next to me and gave me a hug. I finally started connecting the dots, and began crying; don’t tell me, I said, as she hugged me tighter. All I could think was; why me?”

While attending high school, Sheila hid her status the entire time. No one knew, except a few trusted teachers and her closest friend. Sometimes, she thought about what it would feel like to tell people about it, but she was too afraid of their reactions. “I feared they would hate me, shun me and no longer want to be my friend. Carrying around a secret like that was a big burden.”

Throughout her teens, Sheila attends club meetings and camps with other HIV positive children.[1] Here, peer counsellors provided support and gave the children a space to talk about the fears and challenges they were facing. It helped Sheila think more positive about the future. “Back then, I didn’t think that I would be able to have a long life, but the counsellors told us, that we might have a big reunion when we are all in our seventies or eighties – today I think it is possible.”

The support she experienced as a child, inspired Sheila to become a peer counsellor herself, in order to help other young people living with HIV. It During her counsellor training, she learned how to truly accept her status and be open about it, because now she had to talk to people who were newly diagnosed, and be a role model for them. “The moment I start opening up about my status I feel a big weight lifted from my shoulders, and it really changed my life for the better.“

For Shelia, it was a big relief to finally accept herself and be open about her HIV status. However, her father still doesn’t want people to know about it, and doesn’t like when she talks about it openly. “ I think it’s because of his social standing, he’s afraid of how people will treat him and how the world will treat me. It’s a parent trying to protect his child, so I kind of understand him.“ She still hasn’t told him about what she is working with, because she doesn’t think he would be supportive. “He still has that fear of people finding out about my status. Maybe one day he can also learn to be open about it.”

Through her job as a peer counsellor, Sheila has witnessed how people with HIV are still stigmatized in Uganda. Something she has also experienced first hand; “Once, I lost my job, after telling my employer that I had to go get my medication and he asked me what I was suffering from. I told him that I was born HIV positive. The next day when I came to work, they told me that I had been laid off.”

These experiences are what inspired Sheila to start her company Kyendi KYENDI – a delivering service that makes it easy and discreet to get your HIV medication. She also sends out positive text messages as daily reminders for her customers to take their medication. “As long as you take your medication daily, you will be just as healthy as any other person – then you cannot transmit the HIV, and you can lead a completely normal life. HIV dose not define you.” Sheila’s hope for the future is that people living with HIV can be open about their status without the fear of losing their job or be stigmatized. But for now, her company makes it a bit easier to live with HIV, and ensures that people don’t have to make up stories or disclose their status whenever they have to pick up their medication.

Despite Sheila’s acceptance of herself, one thing that still scares her is dating. Because, although she has learned to accept her HIV status. Someone else might not. “I’m worried that if I tell someone about my status it will scare them away. That’s my biggest fear right now, I’m afraid of love, I’m afraid of dating.” Despite her fears, she still has hopes of getting married one day, and she believes that when the right person comes along, they will love the full package. “I try not to think about it too much now and focus on my work for now.”

To learn more about Sheila’s start-up business Kyendi Kyendi Network, visit their facebook page.

[1] Run by the Elizabeth Glaser Paediatric AIDS Foundation

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